The ASCT Guide

The complete guide to everything a patient needs to know about stem cell transplant (ASCT), written by patients who have been through it.

1. Autologous Stem Cell Transplant Introduction

Autologous Stem Cell Transplant (ASCT)

When you first learn that you will need to go through a stem cell transplant, it may feel overwhelming and scary. You may have many questions like:

• What exactly does this process look like?
• Why is it important for me to go through this procedure?
• Will it help me achieve remission and for how long?

The information provided in this section was created by volunteer HealthTree coaches who have been through an autologous stem cell transplant (ASCT) themselves or were primary caregivers. The content is meant to help patients educate themselves on what to expect when going through an ASCT and tips to help ensure a smooth recovery. You should always partner with and follow the guidelines provided by your doctor or transplant team. This information is not meant to replace your health care provider’s guidance, but to help you ask questions of them and better prepare for an ASCT.

Preparing for an ASCT can be a bit overwhelming. Our coaches are volunteers that are here to help you navigate your myeloma and provide guidance on all aspects of the ASCT process, as well as finding a myeloma specialist, learning about financial aid options, and using the online tools that can help you live longer and better with multiple myeloma.

Find A Free Coach

If you are early in your journey and trying to work through with your doctor if a stem cell transplant is right for you, you may want to watch one or both of these videos in Healthtree University:

HTU “What is the Process of ASCT? What is it like?

HTU “Who Should Consider an ASCT?”

Sign up for HealthTree.org Now

For more information and tools to help you become a knowledgeable and empowered patient create a HealthTree account at https://healthtree.org/

From there you have access to many tools:

• CureHub: Where you can upload and track your lab results and progress, find a Myeloma Specialist, share information on side effects, find your “Twin” with a similar experience, provide anonymous help to researchers, and find information on clinical trials you may be eligible for, among other issues.
• HealthTree University: Where you can view video lessons from Myeloma experts on a myriad of topics from Myeloma basics, treatments, medications, side effects, financial considerations, caregiver issues, and self-care.
• Myeloma Coach: Where you can request assistance from a peer patient or caregiver with experience or expertise in specific areas.

Author: Amy Gebhardt

Return to page contents

2. Education Process

Education on the ASCT process

Living with Multiple Myeloma is a continuous journey. An autologous stem cell transplant (ASCT) is often used to treat myeloma. It is considered a safe and effective treatment for many patients. The ASCT process spans several months and involves a series of appointments including: pre-transplant evaluation, extensive medical & lab tests, catheter or port placement, stem cell harvest, conditioning chemotherapy, stem cell infusion and follow-up visits. The process can be both emotionally and physically challenging.

This guide is meant to complement the educational materials patients receive from their transplant team. It is intended to provide insight into the ASCT process and help patients make educated and informed treatment decisions.

Where to begin – get organized!

✔  Use a daily planner or wall calendar to keep track of pre-transplant appointments, follow-up visits & medication schedules.

✔  Get a notebook or journal to bring to medical appointments with questions or concerns. For post-transplant appointments, jot down your symptoms, or any changes in the way you’re feeling.

✔  Patients should find a family member or friend who can accompany them to medical appointments to take notes and provide emotional support.

✔  Create a patient portal account with the hospital or transplant treatment center. This allows patients secure access to their medical information and the option to message their healthcare team for non-urgent matters.

✔  Join the HealthTree Stem Cell Transplant Chapter

Select a myeloma specialist and transplant treatment center

Research has shown that individuals with myeloma who are seen by a myeloma specialist live longer. See a comprehensive list of myeloma specialists

An ASCT involves specialized care and is only offered at certain hospitals or large cancer centers. Talk with a myeloma specialist about which transplant facility they recommend or are affiliated with.

Here are some guidelines for choosing a transplant center:

✔ Geographic location and commute – consider choosing a facility that is close to home. ✔ Treatment options – Inpatient vs Outpatient.
✔ Will the patient’s insurance cover medical expenses at this facility? Ask the healthcare insurance company about a dedicated case manager.

✔  Inquire about treatment center outcomes – how many transplants has the center performed for patients with multiple myeloma?

✔  What type of support services are offered for patients and caregivers?

✔  Explore available clinical trials.

✔  Get a second opinion if necessary.

✔  Connect with a coach/mentor who has undergone a stem cell transplant. They can provide support and a better understanding of the process from a patient’s perspective.

Before starting treatment, patients and their caregivers should meet with a financial counselor at the facility where they will be treated. The counselor will help determine coverage and estimate out of pocket costs. There may be restrictions on treatment options covered by Medicare and Medicaid. To help bridge any financial gaps, a list of resources can be found at Financial & Helpful Resources.

HealthTree University

HealthTree University (HTU) offers a comprehensive curriculum that currently consists of over 300 online lessons featuring leading myeloma experts from around the country. It is designed to educate and empower myeloma patients to be their own best advocate.

To access HealthTree University, sign in or create a guest HealthTree account at https://www. healthtree.org/create-account/

Videos can also be viewed on YouTube. The following chart lists the lessons pertaining to stem cell transplant:

Additional Resources

To learn more about multiple myeloma and stem cell transplant, visit:

• Be The Match https://bethematch.org
• Leukemia & Lymphoma Society (LLS) https://www.lls.org/
• Spark Cures https://sparkcures.com/
• Cancer Support Community https://www.cancersupportcommunity.org/

Author: Jennifer Littke

Return to page contents

3. Understanding the Inpatient & Outpatient Process

Understanding the Inpatient & Outpatient Process For Patient and Caregiver

In this section, you will learn what to expect when going through an Autologous Stem Cell Transplant (ASCT). You will gain an understanding of the difference between having this procedure as an inpatient vs an outpatient. For most patients, this may be one of the most important and impactful medical procedures they ever go through. If you have been a very healthy person until you received your Multiple Myeloma diagnosis, an ASCT may be the most difficult recovery you will have to undergo. It is critical to know what to expect and plan ahead for the extra help you will need during the procedure and lengthy recovery period.

Most myeloma patients go through four to six cycles of induction therapy (chemotherapy and/or radiation therapy) prior to having an ASCT. This will be determined by how your cancer responds to the therapy. The goal is to reduce your cancer cells in your bone marrow as close to zero as possible prior to the ASCT.

When you are getting close to the time for an ASCT, you will need to determine what hospital you will choose to have this procedure. If you haven’t yet started working with a Multiple Myeloma specialist, now is a good time to engage with one. Research has shown that individuals with myeloma who are seen by a specialist live 35% longer. See a comprehensive list of myeloma specialists. Your oncologist office can also assist with identifying a specialist and facilities that conduct ASCT, as not all cancer centers perform ASCTs.

Once you’ve determined the location for your ASCT, they will set up an appointment for you to meet with the transplant coordinator. This person will outline the process for you, provide a calendar of dates for the various steps of the procedure and set up meetings for you with the other members of the care team.

Types of Transplants

• There are two types of stem cell transplants: Allogeneic and Autologous

• Allogeneic Stem Cell Transplant is when you receive a donor’s stem cells. The donor can be related to you or completely unrelated to you from a donor registry.

• Autologous Stem Cell Transplant (ASCT) is when your own stem cells are collected and stored, and then given back to you after you receive high-dose chemotherapy.

• You may have many questions and concerns during this time and the technical information can get overwhelming. Transplant nurse coordinators are your primary point of contact in the transplant program. They are available to answer questions and provide guidance during your treatment process.

• Plan on having your caregiver attend as many outpatient appointments as possible with you during this process. It is helpful to have a caregiver hear the same information that you’re hearing at each appointment. You may want to use a recording device or ask your caregiver to take notes to track information.

Tandem transplant:
A tandem transplant typically means that two ASCTs are performed back to back. This is also known as a double autologous transplant.

ASCT procedure starts with collecting the patient’s healthy stem cells. After undergoing high-dose chemotherapy to kill the myeloma cancer cells, the patient becomes very vulnerable to infections as chemotherapy kills more than just the cancer cells. Patient’s own healthy stem cells are given back to help the body quickly rebuild the blood and immune system.

In the case of tandem transplants, the healthy stem cells are collected only once, ideally sufficient to perform three ASCTs. The stem cells are then frozen until they are given back to the patient. The period of time between the first transplant and the second one is typically about three to six months. This recovery period is necessary to strengthen the body for the second transplant. The myeloma specialist and the transplant specialist work together, along with other members of the healthcare team, to decide when the patient is ready for the first and second transplants. “I had about four months between my transplants. My specialist had already given her approval after three months, however, due to the COVID 19 pandemic, I waited another month for the transplant.”

A patient’s general state of health is the most important factor for the tandem transplant decision. If there are medical conditions that make the transplants risky, these need to be addressed before the transplants.

There are cases, where a patient stays in remission for over 10 years after a tandem transplant, and the third batch of the frozen stem cells are used again for a third ASCT procedure.

Sometimes, a tandem transplant refers to an autologous transplant and then an allogeneic transplant.

See also, for more information:
What are the different types of stem cell transplants?

What is an ASCT autologous stem cell transplant? Why is it effective? Is it safe?

Outpatient process vs Inpatient Process

Autologous Stem Cell Transplants (ASCT) can be offered as an inpatient or an outpatient procedure depending on the hospital that you chose. What’s the difference?

Inpatient usually means you will be admitted into the hospital and stay for approximately three to four weeks. The hospital will provide 24/7 care by nurses during the entire transplant process

and while you are in a neutropenic state. This means that your white blood count (WBC) goes below 1500 or 1.5 and may go all the way down to zero. During this time, you have no immunity and your ability to fight off infections is very weak. You will be released from the hospital once your WBC has risen to an acceptable level. Often you will need to stay within 30 minutes of the facility for an additional two weeks with regular visits to the facility to monitor your recovery progress.

Outpatient can vary slightly by facility, but most or all of the procedure and follow-up during the first thirty days is handled as an outpatient. Some facilities do have patients admitted for up to four days to complete the transplant process including: infusion of the chemotherapy (also called conditioning), completing the stem cells transfusion and monitoring your vitals and blood work for a day. This means that your caregiver will have more responsibilities during the first few weeks than if you were an inpatient. When released you usually need to stay within 30 minutes of the hospital you had your ASCT. You will need to visit the clinic daily for routine blood work and monitoring of your recovery. If your home is within that distance, you may go home, or many hospitals have special housing nearby for ASCT patients and their families. This information should be provided to you during your first meeting with the transplant coordinator and their support team.

Watch this video to learn more information on the benefits and risks of Inpatient vs Outpatient transplant https://www.youtube.com/watch?v=DH_7-nkUzXg

Things to consider and questions to ask when selecting a center for your ASCT:

✔  How many ACST’s a year does this facility conduct?

✔  Does this facility conduct inpatient or outpatient ASCT?

✔  How far away from your home is this facility?

✔  For inpatients, how many days do they expect you to be in the hospital? After being discharged, how many days do you need to stay near the hospital for follow-up visits?

✔  For outpatients, how close to the facility do you need to live in order to stay at home? If you are too far, does the facility have housing nearby for patients and caregivers to live for the first 30 days? How is the cost of this housing handled? Is it covered by insurance?

✔  What is the expected follow-up schedule after the first 30 days?

✔  What is the expected follow-up schedule for the first year?

Caregivers are critical, for inpatient or outpatient procedures It is a program requirement for every patient to select someone to be their primary caregiver. See below for details on activities that are important for caregivers to manage.

Your transplant team:

• Physicians, fellows, and nurse practitioners

• Nurses-both inpatient and outpatient

• Transplant nurse coordinators

• Social workers

• Nutritionists

• Dentist and dental hygienists

• Psychiatrists

• Lab specialists

• Pharmacists

• Financial coordinators

• Insurance company case manager

• Most importantly, YOU and your caregivers

Pre-transplant Eligibility Screening (may include some or all of these tests):

Your transplant nurse coordinator and financial coordinator should submit the necessary documentation to the insurance company to obtain approval for your transplant.

• You must be approved by the transplant team to receive any type of transplant. The purpose of this is to ensure that you are receiving the best possible care for your diagnosis, current stage of your disease, and individual situation.

• Blood Tests Several different kinds will be done to make sure your liver, kidney and bone marrow are functioning well. Your blood may also be checked for the presence of infectious diseases. A test of “tumor markers” in your blood may be done as well to help the health team with your treatment plan.

• Chest X-Ray This picture of your heart and lungs is checked for any signs of infection, cancer or heart abnormality.

• EKG An electrocardiogram (EKG) shows the electrical activity of your heart.

• MUGA Scan This test shows how well the heart pumps. A very low dose of radioactive

  material is injected into a vein, and a camera takes pictures as the dye is pumped through your heart.

• Echocardiogram An alternative to the MUGA Scan, this test uses sound waves to check the heart’s functioning.

• Pulmonary Function Test (PFT) This breathing test helps to determine the functioning of your lungs.

• CT or CAT Scan This special kind of X-ray gives a clear, crisp picture of any part of your body. It often is used to find out if cancer is present and whether your lungs, liver and

  kidneys are normal. It can be taken of the head, neck, chest, abdomen and/or pelvis.

• Bone Scan These X-rays reveal any abnormalities of the bones that may suggest cancer involvement.

• Bone Marrow Aspiration/Biopsy A needle placed in your hip bone draws out a small

  amount of bone marrow which is then tested for cancer. The area of the aspiration is numbed with medication so that you will not feel the needle. Conscious sedation and or relaxates may also be available for this procedure.

• Urine Test You will collect your own urine for a 24-hour period at home. Urine tests are done to check your kidney function, make sure you do not have an infection, and to check for the use of illicit substances and nicotine. They also check for the presence of light chains for those with kappa or lambda light chain MM.

• Consults with Social Worker

• Consults with your dentist to confirm the status of any recent dental work, and with a dental oncologist associated with the transplant center.

Housing Arrangements:

• For the outpatient process, most hospitals require you and your caregiver to stay close to the hospital, for the first 30 days, if your home is more than a specified distance from the facility.  

• For the inpatient process, you and your caregiver must make arrangements to stay in a location that is within a short drive to the treatment clinic for approximately two to four weeks after discharge. Your coordinator will tell you what time/distance limits they may require.

• Discuss housing options with your social worker and the financial team member. Hospitals often have their own housing available for patients and caregivers. Your insurance may cover certain travel and housing costs in support of your transplant. Be sure to get pre-authorization, if necessary. For additional financial questions and considerations (link to financial page)

• For the inpatient process, you will have clinic visits multiple times per week for a few weeks post-transplant.

• For the outpatient process, you will visit the clinic daily for about 30 days. Your caregiver must commit to staying with you 24/7 for this time in order to help with the transportation and clinic visits, but most importantly to monitor side effects and help you get to the hospital quickly if an urgent issue arises. You may need to make arrangements for child care or someone to look after pets for this period of time.

• For more information on the process see:

  What is the process of ASCT? What is it like?

Pre-transplant Procedures for both Inpatient and Outpatient Settings

• Mobilization and Collection Phase

  When your evaluation and insurance clearance are complete, your individualized treatment schedule can be prepared. The treatment schedule prior to admission to the hospital for your transplant includes the mobilization and collection of your stem cells 

• Mobilization

The purpose of mobilization is to stimulate your bone marrow to produce more stem cells in order for them to be released into your bloodstream. Your stem cells can be mobilized in different ways: chemotherapy in combination with a growth factor or stimulation with growth factors alone. Your transplant physician will discuss the best method for you.

• Catheter Placement

Your stem cells will be collected through a central venous catheter that will be placed in Interventional Radiology under sedation shortly before your collection. A home care nurse
may visit you at home before or following the placement to teach you and your caregiver proper care of this line. This catheter will remain in place through your transplant. Depending on your transfusion needs at the time of discharge, the catheter may be removed just prior to discharge or shortly after.

For information on the difference between catheters and ports watch this short video.

• Collecting the Stem Cells

Depending on your diagnosis and condition, either bone marrow or peripheral blood stem cells will be collected from you. Peripheral blood collection is the process used in the majority of cases.

Peripheral blood stem cells are collected in a process called apheresis. You will come to the hospital for approximately two days in a row where you will be hooked up to a special blood processing machine called an apheresis machine. For about four to six hours each day, your blood will be drawn through your catheter. As about one unit of your blood circulates outside of your body, the machine will extract some of the peripheral stem cells. After the cells are collected, they will be tested to find out how many actual stem cells were collected, and will then be frozen until it is time for your transplant.

Side effects of this procedure will be discussed with you, but boredom tends to be very common! So be sure to bring a book to read, a DVD or ipad to watch shows or movies (check ahead to see if a DVD player is available).

You should also plan to bring snacks and to have lunch in the apheresis unit (some facilities provide snacks and or lunches), as you will not be able to leave the bed during the collection process. Caregivers do not need to stay by the bed the entire time (there may not be room to), but should stay in contact in case you need anything, or if you finish early.

If your bone marrow is to be collected, you will be admitted to the hospital in same-day surgery. Under general anesthesia, bone marrow will be taken from your hip bones in the back area using large needles that puncture the skin and go into the bone. Only about 5 percent of the marrow is taken, and the body quickly replenishes itself. Side effects from the bone marrow collection may include mild to moderate discomfort at the harvest sites in your hips. This can be effectively managed with pain medication.

• Caring for Your Catheter or Port

Your catheter will be used to collect stem cells, draw blood and to give medication before, during and for approximately 30 days post-transplant. This will eliminate the need for painful needle sticks from IV placement. Continue to care for your catheter as you were instructed. Be alert to any signs of infection: fever, swelling, tenderness, redness of the arm, neck or chest on the same side of the body as the catheter, drainage, rash or bleeding. Report any of these symptoms immediately to your physician.

Some hospitals require that you and your caregiver attend a training class. This education varies by hospital, but can include:

✔ Detailed description of the entire process
✔ What to expect in terms of side effects and when to contact a nurse ✔ How to complete daily flushing of the tri-fusion port or catheter
✔ Educational booklet to be read at home explaining the ASCT process

ASCT Outpatient Process Details

One really important factor of the outpatient process is that it does require more caregiver support. Do not think you can do this on your own because you can’t. In fact, many hospitals require a caregiver to sign an agreement that they are willing to take on the responsibilities outlined by the hospital for 24/7 care for the first 30 days. You may want to consider having additional support to give breaks for your caregiver (remember this can be stressful for them too). Some of the key things they will need to assist with:

✔  Transportation to and from clinic daily

✔  Ensuring you are taking your medication as prescribed

✔  Assisting you when you are experiencing side effects and calling the nurses when it’s appropriate

✔  Ensuring you are taking in enough fluids, it’s critical to drink a lot of water or non-caffeinated liquids everyday

✔  Making sure you do some walking everyday

✔  Grocery shopping and following the neutropenic guidelines in preparing food

✔  Cleaning your home as you are not allowed to clean anything for a few months

✔  Help you keep a journal of all side effects you experience - discuss these with the nurses during your daily clinic visits

✔  Moral support and hopefully some humor!

Outpatient Process may include a few days of inpatient procedures:

Note: During the Covid-19 pandemic, many hospitals have implemented strict controls to limit visitors. Usually, this is a one-at-a-time restriction, and may also limit times for visitation. Discuss this with your transplant coordinator or social worker on your team.

Sample schedule

✔  You could be discharged on the fourth day after admission as long as you don’t have any major side effects, your vitals and blood work are checked and at acceptable levels.

✔  Ifyoulivewithinaclosedistancetothehospital(oftenyouneedtobewithin30minutes),you can stay at home during the remaining 30 days.

✔  Ifyoulivemorethan30minutesaway(yourtransplantcoordinatorwillprovidedistance requirements for your facility), you will need to stay nearby the hospital. Work with the hospital social worker to identify a location that works for you and your family.

Managing Physical Side Effects:

✔  Keep a journal of all side effects – when they occur, what occurs and severity. Your transplant nurses are there to help you manage these side effects. It is critical for you to speak up to your nurses about any and all side effects you experience.

✔  Melphalan affects your entire GI tract and side effects vary greatly by individual

✔  Monitor your temperature – anything over 100.4 requires a call to your facility.

For amore detailed description about the stem cell transplant process visit these links:
For a more comprehensive list of side effects and ways to manage them, (link to Ongoing Side Effects page)

(Guest Lecture): The Process of ASCT | MCRT Webcast: Understanding Myeloma Stem Cell Transplantation
 

ASCT Inpatient Process Details

Note: During the Covid-19 pandemic, many hospitals have implemented strict controls to limit visitors. Usually, this is a one-at-a-time restriction, and may also limit times for visitation. Discuss this with your transplant coordinator or social worker on your team.

Sample schedule

• Hospital stay will be approximately 14-18 days.

• You should maintain as normal of a routine as possible during your hospitalization.

• Due to the high risk of infections, observe and comply with all precautions as stated by the staff. This includes showering with special antibacterial soap daily to help reduce infection risk.

• Due to the chemotherapy, your WBC counts will be very low, and you will be at risk for infection.

• You will not leave the unit unless it is for a required test due to the high risk of infection.

• You will be placed on a special diet focusing on food safety for immunocompromised patients while in the hospital

• Potential side effects from the chemotherapy include: nausea, vomiting, diarrhea, fatigue, hair loss, decreased appetite, and mucositis (an inflammation of the mouth and GI tract which can lead to bleeding and ulceration).

• Your white blood cell, platelet, and red blood cell counts will be VERY low and you are at risk for infection. You may need red blood cells and platelet transfusions to support you while your body is recovering.

• It is not unusual for patients to run fevers during this hospitalization and be placed on antibiotics during inpatient stay.

Preparing Your Body for Transplant Chemotherapy

• Depending on your disease, you may receive several different kinds of chemotherapy drugs designed to kill your type of cancer cells. These medications will be given to you in the hospital through your intravenous (IV) line or port.
• These drugs are very powerful and will also affect normal cells, possibly resulting in certain side effects. These may include nausea and vomiting, diarrhea, mouth sores, fever, hair loss, changes in taste and skin and bone marrow suppression.
• Your nurse will discuss all possible side effects with you and provide treatments to help lessen their impact. You should keep your mouth cold during the infusion with ice chips or popsicles to constrict the capillaries in the mucous membranes which will lessen the possibilities of developing mouth sores.

For more information on the chemotherapy used, see this video. 

Radiation Therapy

• Some patients also receive total body irradiation (TBI) prior to transplant. Given over several days, TBI kills off cancer cells that may be in your body, and suppresses your immune system.
• Immediate side effects can be nausea, vomiting, diarrhea, sore mouth and throat, swollen throat and salivary glands and hair loss.
• If TBI is prescribed for you, you will be taken from your hospital room to the Radiation Oncology center for treatments.
• Late side effects may include cataracts of the eyes and insufficient activity of your thyroid gland, as well as diminished lung capacity. Post-transplant, these possible effects will be regularly monitored.

The Day of Transplant

• Your bone marrow or peripheral blood stem cells, which have been processed and frozen, are brought to your room on the transplant unit. The cells are thawed at your bedside in a warm solution and then given to you through an IV line attached to your catheter.
• The infusion generally takes under 60 minutes. You may experience a funny taste in your mouth or an odd smell during the procedure. Some say the odor is akin to tomato soup. This is due to the preservative dimethyl sulfoxide (DMSO) that is used in the freezing process. You may want to suck on mints or candy during this time. The smell may last up to 48 hours.
• There may be other side effects: nausea, shortness of breath, stomach cramping, and wheezing. During the transplant your nurse will be with you and check your vital signs often. She or he will be present to handle side effects you may have.
• After the peripheral blood stem cells or marrow have been transfused, you may receive other medications. These may be antibiotics to prevent infection or other drugs to treat nausea or vomiting. Your doctor or nurse will explain these medications to you.

The Engraftment Phase

• As your blood counts fall to near zero over the week after the high-dose chemotherapy, your stem cells will be circulating and getting instructions on what they need to build: white cells, red cells, platelets. It takes 5-7 days for the stem cells to start to build what is called engraftment.
• Engraftment is the period when the infused bone marrow or peripheral blood stem cells “take” and begin producing blood cells. It may take 10 – 16 days for engraftment to occur. During this waiting period, your blood counts will be very low. You may need transfusions of red blood cells and platelets. Red blood cells carry oxygen to all the cells of your body, and platelets help blood to clot and prevent bleeding.
• Medications may be given to speed up the production of blood cells, particularly the white blood cells needed to fight off infections. These drugs may cause bone pain, like you had during the mobilization process. Be sure to tell your nurse at the first twinge or pain. Moist heat, acetaminophen, or other pain medications can help. Daily blood tests and, possibly, periodic bone marrow aspirations will be done to determine if engraftment has occurred. Once your white blood cell count is high enough to fight infection, you will be discharged from the inpatient unit and seen frequently in the outpatient clinic.

Possible Complications

It is important to remember that after receiving your high-dose chemotherapy, you will be immunocompromised. While your blood counts improve shortly before your discharge from the hospital, it is important to remain vigilant in protecting yourself from infection. Studies have shown that it takes the body’s immune system about three months to get back to its “normal” function after an ASCT. High-dose chemotherapy with or without radiation, and the low blood counts that occur as a result, can lead to complications. These conditions, some of which are described briefly below, can be treated but have the potential to be life-threatening. A Transplant Team member will discuss possible complications with you and keep you and your family informed of your progress.

The high-dose chemotherapy has significant effects throughout your body, especially your mucous membranes, from your lips all the way through your digestive tract. You can expect that after 4-5 days, you will lose control of your bowels perhaps at night, and you will not realize it. Plan to have adult diapers or ask for them at the hospital. Also, you will develop diarrhea for a few days, and may be isolated during a test for c-diff.

For more information on potential side effects see this video. 

• Infection

Because your white cells are suppressed, you will be at risk for developing infections. You will be particularly susceptible to bacterial infections. The infection prevention measures in the Transplant Unit are designed to lessen the risk. If you develop a bacterial infection, you will be given IV antibiotics. Fungal or viral infections (which are more serious and more life-threatening) may also occur. These infections are less likely to occur due to the short time that your counts will be down and, it is hoped, can be avoided with oral medication.

• Heart and Lung Problems

High-dose chemotherapy, as well as infections, may decrease the function of your heart and lungs. To monitor this condition, you will have tests before, during and after your transplant.

• Lack of Engraftment

Sometimes the new blood cells will not grow in your body. This means they have not successfully “engrafted.” This condition is monitored by blood counts and bone marrow aspirates. If the cells show no signs of engraftment after several weeks, a second transplant may be offered.

Preparing for discharge

• The inpatient team will review your lab results on a daily basis.

• When your WBC count starts to increase, the transplant team will start to talk with you about discharge from the hospital.

• Your primary nurse on the unit will plan with you when your discharge class will be held, usually a few days prior to discharge. Your caregiver will also need to attend this class.

• Please be sure to arrange discharge transportation on your day of discharge. This is an important role for your caregiver

Initial post-transplant (First 30 days)

• Avoid anyone who is sick or has been in contact with a sick person.

• Teach and enforce GOOD hand hygiene to all family members.

• Reinforce strict hand hygiene with children and avoid face-to-face contact. Wear a mask when in direct face-to-face contact with children.

• No direct care of pets. No cleaning up excrement or sleeping in the same bed as animals.

• Wash hands after petting animals.

• No direct care of plants. Keep indoor plants segregated into separate rooms that the patient doesn’t enter.

• Stay away from large crowds. Your caregiver is critical in this regard as they will be able to run errands, such as grocery shopping, which keeps you out of public settings for these first several weeks.

• Wear your mask outdoors and in public places.

• Balance getting rest with keeping active.

• Drink lots of fluids.

• Maintain a safe and healthy diet.

• Avoid places like dirt basements and crawl spaces, due to their high risk for mold/spores.

• Discuss with your physician and discharge nurse when it will be safe to resume sexual relations.

• Clinic visits several times a week, as directed by the clinic staff. Frequency of visits and treatment will be based on your lab results.

Remember, you will be treated each day based on your lab results. For example, if your platelet count is low, you will be sent to infusion for a platelet transfusion.

After discharge from the hospital

Signs and Symptoms to report to the Transplant Team IMMEDIATELY:

• Fever of 100.4 or higher Shaking Chills

• Nausea, vomiting, diarrhea that lasts more than 24 hours

• Bleeding

• Symptoms of a cold

• Changes in the level of consciousness

• Pain or cramping

• Problems with the catheter

• Skin rashes

• Changes in vision

• Indigestion

Pain with urination or difficulty urinating

See the following videos for more information on stem cell transplants:

Who should consider an ASCT?

At what point in treatment should ASCT be considered, and is there a best time to have an ASCT?

Do I need to get an ASCT after induction therapy as consolidation if I'm transplant-eligible? 

What is the role of maintenance therapy after an ASCT?

Authors: Don Bathhurst - inpatient Amy Gebhardt - outpatient S. Turker - tandem

Return to page contents

4. Preparation Checklist

PLANNING FOR YOUR ASCT – Days -1 thru +30 WHAT TO DO BEFORE YOUR ASCT
WHAT YOU NEED ON HAND AFTER YOU COME HOME

Planning for your Autologous Stem Cell Transplant (ASCT) is just as important to your outcome as taking your medicines. Having the right items on hand during the transplant and at home immediately after (for the first 30 days in most cases) can make your experience less stressful.

The list is presented in three groups:

1. Getting Ready for Your ASCT, what you should take care of before going into the hospital

2. At The Hospital

3. At Home or Close By Lodging (Outpatient Day +1/Inpatient Days 15 thru 30)

Getting Ready for Your ASCT (Both Outpatient/Inpatient)

• Address and stamp envelopes for notes and cards

• Adult diapers in your size

• Advance Directive – have a copy with you and send one to the hospital

• Arrange for in-home support/care

• Cleaning wipes and latex (or the like) disposable gloves

• Contact list - Make a list of all contacts – doctors, family, helpers

• Contact lenses/glasses - it is recommended to not wear contacts for the first thirty days in order to lower the risk of infection through your eyes. If you don’t have a pair of glasses with your current prescription, be sure to order these about a month prior to your ASCT.

• Deep Clean - carpets and drapes professionally cleaned while you are out of the house

• Download books, music, or videos (hospital Wi-Fi may not be good)

• Fragrance-free laundry detergent

• Grab bars for showers or tub areas

• Help with mail/deliveries

• Items to care for your port or catheter while showering (normally supplied by the hospital)

  • Alcohol wipes

  • Biohazard container

  • Para Film/covers for catheter/port (Saran Wrap) o Saline Syringes

• Masks and gloves

• Medications - Create a list of all medicines taken as well as supplements

• Medications - Refill all prescriptions

• Pet Care - Make plans to have someone take care of pets, especially litter boxes and fecal matter

• Plants – Remove plants from the home.

• Remodeling - No construction projects for at least 30 days after you get home

• Thermometer(s) for both you and your food

• Underwear (extra pairs for inpatient)

• Obtain a walker and/or cane(s). Can be borrowed from Visiting Nurses

• Waterproof mattress cover

• Journal to track side effects and/or assist with dealing with emotions of treatment and recovery

• Nice to have but not essential:

  • Air purifier

  • Water purifier for your home system and personal use

  • Replace HVAC filters with HEPA filters

  • Shower chair

  • Bedside commode

  • Soft seat belt wrap to protect catheter or port in car if still installed

At The Hospital (Outpatient Days +1 thru +12 to 17 & Inpatient)

• “Go bag” used when traveling to the treatment center daily (Outpatient)

• Adult diapers and extra underwear

• Baby powder

• Barf bags - disposable (supplied by hospital Inpatient)

• Bath sponge

• Books, magazines, puzzles

• Butt cream (i.e., Desitin, Balmex, Calmoseptine)

• Chapstick (4)

• Cookies, crackers, and light snacks

• Deodorant

• Electronics – phone, laptop, Kindle plus chargers & cords

  • Extra-long cord for phone charger (plugs are not where you want them)

• Electrolyte replacement drink or powder (i.e., Propel, Zero Water or the like - 4 cases)

• Hard candy and spice drops

• Headphone or earbuds

• Laundry basket or bag

• Masks and gloves

• Mattress topper (nice but not essential)

• Mouth care:

  • Dry mouth care (i.e., Biotene or Oasis)

  • Sensitive mouth/teeth care (i.e., Gel Kam, Sensodyne)

  • 2 Toothbrushes (change toothbrushes every 3 months or less)

• Pants – sweats, leggings, scrubs or sleepwear

• Pillows and extra pillowcases (2)

• PJ'S (button or zip up the front for access)

• Quilt, comforter, or lap blanket

• Reading glasses & sunglasses

• Robe

• Shirts - 6 button up

• Shower shoes

• Slippers and scuffs (with skid-resistant soles)

• Soap - Antibacterial soap/body wash

• Socks - Fluffy warm socks for bed

• Socks (10)

• Soft outside shoes

• Soft TP / essential

• Soft wipes

At Home (Days +15 thru 30 either Outpatient or Inpatient)

• Bathroom help (caregiver) grab bars next to toilet & in shower

• Bed Pads (night sweats)

• Books/Magazines/Puzzles/DVDs

• Change of night clothing

• Cleansing Wipes

• Depends adult diapers

• Disposable masks (for visitors/helpers)

• Disposable nail files

• Dry mouth spray

• Electric Razor

• Eye mask

• Find a free mentor or coach

• Fruit/Veggies spray cleaner and scrub brush

• Hand cream

• Hand Sanitizer

• Meditation materials or app

• Plan breaks for caregivers

• Prevent constipation OTC preparations

• Shower Chair

• Catheter protection in shower if still in: Saran Wrap, tape, plastic bags

• Sunscreen (+30)/clothing

• Tee Shirts (6) – (after catheter/port are removed)

• Toilet safety frame to lift assist

• Walker/cane

Author: Mary Sage, Sally Torgeson, and Misty Duke

Return to page contents

5. Patients over 60

SPECIAL CONSIDERATIONS FOR PATIENTS OVER 60

Patients over 60 with Multiple Myeloma (MM) or other hematological cancers can benefit from a stem cell transplant and, in most cases, easily. However, it is critical to consider several factors when determining if an autologous stem cell transplant (ASCT) is right for a patient over 60. As the world population of aging adults grows, the incidence of multiple myeloma will potentially grow at a faster pace. Below are several key points to include in a conversation with your MM specialist when discussing the option of having a stem cell transplant.

An important and often overlooked aspect of an ASCT for older adults is the evaluation and management of geriatric fitness. As you age, your functional reserve, or the ability to cope with physical and mental stress, declines. This can increase your risk for treatment side effects, speed up the development of physical problems or cognitive problems (which affect the ability to think, remember, and pay attention), and even result in a loss of independence. These complications may affect your transplant outcomes, quality of life, and recovery. Chronological age alone cannot predict patient fitness nor should it serve as the basis for treatment decisions.

• Current comorbidities, such as kidney disease, diabetes, heart disease, high blood pressure or other cancers, are a big concern when considering an ASCT. Your oncologist or MM specialist will ask you to take several additional tests in preparation for an ASCT including an EKG, lung function tests, additional blood tests, psychological tests and talk with a social worker. Other considerations include lifestyle factors (smoking, BMI) and cognitive level.

• Just as everyone who receives an ASCT, at home caregivers are a must. It is imperative for older patients to have competent caregivers upon returning home. As mentioned above, fitness and function reserve come into play during the recovery period which can be as long as six months. These support systems should be in place prior to the ASCT and confirmed before release. Older adults need an adequate psychological, emotional, practical, and financial support system in place to help them through the transplant process. It can be difficult to navigate the healthcare system alone and keep track of the disease, symptoms, medications, and appointments. A 24-hour caregiver is also needed to stay with the patient after the ASCT, sometimes for up to 100 days. The requirement for a dedicated full-time caregiver gets less critical as the patient recovers (days 30 thru 100). The patient needs to be able to cope with the many emotional ups and downs that occur during the intense period before, during, and after the ASCT. Problems with daily living activities, such as walking, bathing, and climbing stairs, may require intensive physical therapy and occupational therapy. Cognitive issues, such as memory problems or depression, may occur and must be a consideration for eligibility.

• Just as in patients under 60, the results and the total disease burden after induction must be taken into consideration.

• A final consideration is the hospital. Some hospitals have an internal policy to limit ASCTs to those under a certain age, usually 70. However, recent studies have clearly demonstrated that older patients reported similar benefits from an ASCT when compared with younger patients. Some hospitals also require an interview process of the older patient with several doctors from the facility. After which, the doctors collaborate and determine if the patient is a good candidate for the ASCT. There is no clear way to define “young” or “old” when it comes to patients. For instance, while 50 would be considered relatively young for a blood cancer, a 50-year-old patient who smoked heavily could be a poor candidate for an ASCT. On the other hand, an 80-year-old patient in excellent health might be an optimal candidate. Older patients may find their general health deteriorates during multiple courses of chemotherapy and thus, they may not be a candidate for an ASCT.

To summarize, age should never be the sole factor in determining a patient’s eligibility for an ASCT. Patients as old as 80 could be considered for transplant if it is early in the course of treatment. Other indications include disease progression and overall health. A transplant specialist and a medical oncologist will work together to determine the best course of treatment for each individual patient with the goal of obtaining the best outcome.

 Author Sally Torgeson

Return to page contents

6. Inpatient Process Without Full-Time Caregiver

Dealing with Autologous Stem Cell Transplant (ASCT) without a full-time caregiver:

This section will highlight the important differences in dealing with ASCT without a caregiver. There will be references to the main section (link: Understanding the Autologous Stem Cell Transplant process - Patient and Caregiver). It is therefore strongly recommended that you read the main section first. For the sake of simplicity, the main section will be called “ASCT process section”.

The circumstances may require you to go through ASCT and the post-ASCT recovery period without a full-time caregiver. There could be many reasons for this. You may be going through ASCT in a different city or even in another country, you may be already living alone or living with family members who can’t be your caregivers, or you may decide that it’s safer for you to go through the procedure without a full-time caregiver during the pandemic. Whatever your reason is, it is doable. It does require more planning and preparation, and this section will try to help you with your journey.

“I was diagnosed with Multiple Myeloma in the summer of 2019. After going through the induction phase, I went through my first ASCT in December 2019 with a full-time caregiver supporting me. My second ASCT was in May 2020, still in the midst of the COVID 19 pandemic, without a full-time caregiver. Each time I had the procedure as an inpatient and stayed in the hospital for 17 and 15 days respectively.”

It is very difficult, if impossible, to go through the ASCT procedure as an outpatient and without a full-time caregiver. There could be serious outcomes. It is therefore strongly recommended that you speak to your healthcare insurance company and the hospital to make the necessary arrangements. This section assumes that you will go through the ASCT procedure as an inpatient, and you will be without a full-time caregiver before and after the ASCT procedure.

“For each ASCT procedure, I waited for a hospital bed for over a week. Daily I would receive a call from the hospital whether a bed was available on that day or not. First time around, I didn’t understand why I had to wait, although the procedure was planned months ago. Once I was in the hospital ward, it became clear why. There were 25 beds in our ward. All were occupied by blood cancer patients. Except for the myeloma patients, most of them didn’t have a chance to prepare for their sometimes months-long hospital stay. Some of them had gone to their physicians for a simple fever or cold, and were asked to check in to the hospital immediately. Then I understood why it was difficult to plan for these precious beds, and that it was in fact a luxury for me to be able to plan and prepare for the procedures. “

People typically advise a cancer patient to think only positively. In order to best prepare for the ASCT procedure and the post-transplant recovery phase, you also need to think about the possible challenges. This is especially important when you’re going through the treatment without a caregiver. The more decisions and preparations you can make before the treatment starts the better. You may consider it as risk preparation and management. So, it’s better to “think positively, keep your hopes high, and also prepare for all possible challenges.” Once the ASCT treatment procedure starts, then you can focus on following what you have planned, and focus on getting well. Reserve your strength to deal with the unexpected.

This section has the following outline:
• General recommendations
• Plan and prepare for the ASCT procedure
• Plan and prepare for the post-ASCT recovery phase • Going through the inpatient ASCT procedure

• Going through the post-ASCT recovery phase

General recommendations:

It is worth noting how important it is to go through the ASCT procedure as an inpatient, as you will be without a full-time caregiver.

It could be that you live with family members at home who can’t be your full-time caregivers. These may be small children, sick parents or a partner who normally depends on you to take care of them. You need to evaluate whether they can take care of themselves for the duration of the treatment or even support you. You also need to evaluate whether they would be posing a risk to your recovery.

Going through the treatment without a full-time caregiver doesn’t mean going through it alone. You may have support from family and friends who will be checking on you daily, doing your laundry, grocery shopping, cleaning. Your healthcare insurance may cover in-home support or care. The hospital or other organizations may provide support. You may hire help for cooking, cleaning and/or gardening. Just be careful not to have too many different sources of support, as it could be challenging to coordinate them.

You will receive a lot of information and support about financial preparation for the procedure and afterwards. Another thing to keep in mind is to protect your assets while you’re in a vulnerable state for a while. You may even need to protect them from yourself, as you may not be in a situation to make the right financial decisions.

It is never too early to prepare a living will and other advanced healthcare directives. You don’t even need to be sick to prepare these documents. Advanced healthcare directives ensure you get the medical care you want for the times when you’re unable to make decisions for yourself.

Plan and prepare for the inpatient ASCT procedure:

ASCT process section describes what you will need during your stay in the hospital, such as PJs, underwear, hygiene supplies, etc. If you will not have someone doing your laundry, bringing you fresh clothing, or shopping for the supplies, then bring those sufficient enough for the duration of your stay, which may be as long as a month. Alternatively, check if the hospital has laundry facilities on site.

List the names of people you’ll be communicating to while you’re in the hospital. Arrange how and when you will communicate. There may be times when you don’t want to have long chats. You need to prepare them that on such days you may be sending a quick “good morning, I’m ok” message, and then rest.

Plan for the transportation to the facility on the day of admission, and the transportation from the facility to home on the day of discharge.

Plan and prepare for the post-ASCT recovery phase

Reach out to family members and friends, as well as the communities you are a member of, that may be able to support you during the first 30 days after the ASCT procedure. They may come live with you part of the time, check on you periodically and support you with some household chores.

If you will be staying in a place close to the transplant facility, find out from the facility social workers and from your insurance company about what support will be available for you.

If you haven’t already, set up a calendar for appointments, medications and communication. Start using it before the ASCT procedure so you become comfortable with using it.

Write down a list of medications you take. Buy a thermometer, scale, cleaning supplies, e.g., for a port. Ask your doctor to write medicine prescriptions for over a month, so you don’t have to go to the pharmacy until you’re well enough to go outside.

Arrange transportation to the facility for post-ASCT checkups.

If you will be staying in a place that you’re not familiar with, find out the safety situation and take precautions. You will be in an immunocompromised state for a while, and it’s advisable to try to limit your connections to people that you trust.

Assume you will not be going grocery shopping for a few weeks after you leave the hospital. Prepare a shopping list to give to your support team. Check the delivery options where you live. Start using these services before the ASCT. Save phone numbers, websites, apps, shopping lists. Stock your fridge and pantry with a variety of foods and drinks. Variety is necessary, as many people say their tastes have changed after an ASCT.

“A fellow patient said she wanted to eat only spaghetti for a month. I personally enjoyed toasted bread and yogurt for a few days, and nothing else. I knew drinking water was important, but it was really difficult, so I mixed it with just a little bit of pasteurized fruit juices.”

Plan for the exercise you will be doing. You will not have a caregiver reminding you to exercise, so you need to motivate yourself every day. Set up an easy routine and try to follow this routine.

You may not be as sharp as before and your memory may not be as strong as before. This is mostly a temporary situation. Write down a simple daily routine to follow and hang it on a wall where you won’t miss it. It could include things as simple as making the bed after getting up each morning, airing all the rooms, measuring your weight on a scale, taking your medications, exercising and writing messages to your support network.

Prepare multiple sets of clean bed sheets, towels, clothes, so you don’t have to do laundry for a while. Disposable dish & hand towels, washable bed pads, and sanitizing wipes are all helpful.

In case of emergencies, you’ll need a mobile phone with you at all times. Keeping it in a crossbody bag, together with the charger is helpful.

Plan for your emotional health. This includes regular communication with the loved ones, movies, books, music, audible books or trying meditation. Try comedy dramas to keep things light.

Provide the telephone number of your specialist to your core support network. So, if they see something that worries them about you, they can contact your specialist.

Going through the inpatient ASCT procedure

As you will be going through the ASCT as an inpatient, you will be well taken care of by hospital staff. You don’t need to prepare meals, make your bed or clean your room. You can focus on getting well, and in the meantime read books, watch movies, or listen to music. There are a few other things you can do to help with the recovery, such as exercise, good body hygiene, and communicating with your family and friends. More tips can be found in the ASCT process section.

“During my stay I kept notes about the daily routine that the hospital had. For example, in the mornings a nurse would come by and check my temperature, oxygen level, weight, mouth, etc. I tried to follow this routine for a month after I was discharged.”

Going through the post-ASCT recovery phase

• By now hopefully you have established a simple daily routine for this phase. Make changes to it if necessary. Try to follow your routine as it gives you a sense of control on your daily life. Even if you are staying alone, make your bed every day and follow your hygiene routine.

• There may be additional hygiene steps you need to perform. Some for the eyes because of sytes, or for your teeth, mouth care is very important to your entire health. Add these steps to your written daily routine, as your memory may not be very strong.

• Regularly check your skin, using mirrors for your back, checking for rashes, color changes, dryness and shingles. Report any changes to your specialist.

• Some people experience short-term memory loss. Alone, you may not notice it yourself. It’s important to keep in touch with your support network, family and friends.

  “I noticed the weakness in my memory 3 months after the procedure. I was staying in a post-treatment rehabilitation center. One day I was telling my lunch partners about this man who fell from his wheelchair. There was a bit of commotion on our floor. The doctors and nurses were in his room and in the hallway. I couldn't tell whether this event occurred that morning or the previous evening. I can still visualize the man on the floor and the doctors and nurses around him, but I still can’t remember the time.”

• Exercise is the best thing you can do for yourself, improving your balance and strengthening your back. Even if you can’t walk for a while, there are exercises you can perform while in bed, or while sitting. “I was very diligent with exercise until the second ASCT procedure, but was not as consistent afterwards. Going into the second ASCT, I did not have bone lesions or major damages to my spine. However, after the ASCT, the CT showed compression fractures. My specialist explained it to me as post treatment compression. As the tumor mass disappeared, the tiny little holes were not filled with new bone material fast enough so the vertebrae collapsed. I still wonder whether it would have been possible to avoid this compression, had I strengthened my back muscles. Until I gained my balance again, I did basic Thai Chi exercises. These videos from Memorial Sloan Kettering Cancer Center worked best for me (https://www.youtube.com/watch?v=pbRvCaz3MnQ )”

• It’s important to be extra cautious during this time. It’s not a good time to catch a cold, to fall or burn yourself while cooking. Focus all your energy on healing.

• As you won’t have a caregiver to coordinate visitors, you will need to do this yourself. Don’t be obliged to accept all visiting requests. When you do accept, ask them to follow your hygiene instructions.

• You’ll feel fatigue and will need to rest a lot. Nevertheless, try to motivate yourself to move a little every day as muscle loss occurs very quickly. The longer you are inactive, the longer it will take to recover from the effects of the transplant.

• There will be times you won’t be able to follow the plans you made pre-ASCT. Don’t be hard on yourself. Do your best.

Don’t forget to celebrate your achievements, however small they may be. About the Author

S. Turker joined HealthTree in September 2019 as a patient, three months after a high risk multiple myeloma diagnosis. She was very fortunate to find a wonderful healthcare team as well as myeloma coaches who held her hand throughout this journey. Her treatment started with an induction phase and then continued with tandem autologous stem cell transplants and maintenance.

Return to page contents

7. Dealing With Hair Loss

Dealing with Hair Loss

Hair loss can be very distressing for both men and women when receiving treatment for multiple myeloma. The loss of hair can trigger feelings of anxiety, depression and cause low self-esteem. Many of the medications and therapies used in the treatment of multiple myeloma do not cause a complete loss of hair, but may cause a change in the hair texture or volume. Nonetheless, when undergoing an autologous stem cell transplant (ASCT) hair loss is inevitable. Hair loss is one of the many side effects of an ASCT caused by receiving a high-dose of intravenous chemotherapy called Melphalan. Some patients also get a high-dose of Cytoxan prior to transplant, which also causes hair loss.

Hair loss typically occurs two weeks after receiving Melphalan infusion. Some patients experience total hair loss all over the body and not just the scalp---hair on the arms and legs, in the armpits, and pubic area is not spared. For many the eyelashes and eyebrows will thin out but may not be lost completely. The same applies to beards and mustaches. For many, not having to shave facial hair or the hair on your legs for several months is an added benefit, along with lessened need to frequently wash and condition the hair. To ease the stress associated with chemotherapy induced hair loss there are several things that you can do to prepare for the loss of your hair.

Preparing for hair loss

Knowing in advance that hair loss will occur you can proactively prepare. Hair loss can be such an emotional process. You may find talking with a counselor, close friend or family member may provide comfort. You may also find cutting your hair short to be helpful. Shorter hair tends to have a fuller look than long hair. As your hair falls out, it will not be as noticeable if you have short hair. Also, if you have long hair, going short might help you make a better transition to total hair loss. Some patients will have hair shaving parties with family members to shave the hair off before it falls out. Shaving your head can reduce the irritation and save the embarrassment of shedding.

Other patients decide to donate their hair to Locks of Love. Locks of Love is an organization that accepts donated hair to make wigs and hair pieces for financially disadvantaged children suffering from long-term medical hair loss. The decision to go bald, to wear a wig or head covering to conceal your hair loss is a personal one. Should you decide that a wig is right for you it is a good idea to have a plan in place to find the wig prior to losing your hair. In doing so you have a better chance of finding one that matches the color and texture of your hair. Your doctor can write a prescription for a wig, also referred to as a cranial prosthesis. The cost of which may be covered by your health insurance. If you find that insurance will not cover the cost of a wig, there are several organizations that you can partner with to receive a wig or head covering free of charge. Many see this as a good time to try a different hair style or color that they normally would not wear. Have some fun along the journey!

Protecting your scalp

Your scalp may be sensitive because of treatment. This can lead to it being easily irritated when exposed to extreme cold or sunshine. If your head is going to be exposed to the sun or to cold air, protect it with sunscreen or a head covering. Head covering may make you more comfortable especially when having no hair or having less hair can make you feel cold.

Can Hair Loss Be Prevented?

Cold caps are seen by many to be a solution to hair loss that results from high-dose chemotherapy. The caps work by making the tissue cold and restricting blood vessels and limiting the amount of chemotherapy to the hair follicle. Although cold caps have been shown to work for many solid tumor cancers there is still ongoing research in how well it works in Multiple Myeloma. Current research shows that when myeloma patients use cold caps to prevent hair loss, the caps reduce the effectiveness of the therapy being used.

Currently there is no FDA approval for the use of cold caps in myeloma. Cold cap therapy can be very expensive and in most cases, is not covered by insurance. You are encouraged to partner with your doctor to determine if cold caps are right for you.

Hair Regrowth Care

The good news is that hair loss is temporary. It may take several weeks to months after treatment for your hair to recover and begin growing again. When your hair grows back

it may have a different texture, thickness or even color. You can massage your scalp gently to remove dry skin and flakes to help with regrowth. Permanent or semi-permanent hair color should be avoided for at least three months after treatment ends. Avoid curling or straightening your hair with chemical products such as permanent wave solutions until it all grows back. You may need to wait up to a year before you can chemically curl or straighten your hair. Before trying chemical products again, test a small patch of hair to see how it reacts.

Resources for wigs and head coverings:
TLC Direct https://www.tlcdirect.org
Coils to Locs http://coilstolocs.com/
Headcovers Unlimited https://www.headcovers.com/headwear/

Resources on Cold Caps:

https://www.youtube.com/watch?v=LiJtm0BQHyk https://bit.ly/3hNgpqX
https://bit.ly/3oEdsut
Chemo Cold Caps | Cold Cap Therapy

About the Author Valerie Tranham

Return to page contents

8. Importance of Your Mental Health

THE IMPORTANCE OF YOUR MENTAL HEALTH WHEN UNDERGOING A STEM CELL TRANSPLANT

Deciding to undergo an autologous stem cell transplant (ASCT) is one of the most important decisions you will make as a Myeloma patient. Once you decide to move forward with the procedure, most patients spend considerable time gathering information and preparing for the procedure medically. We all know that “knowledge is power”, and it’s important to be well informed before having the transplant performed. During this time, however, patients are often unaware of the important role their mental health will play in the process. This is unfortunate since an ASCT is considered a “significant emotional stressor”, and the way you react emotionally will have an impact on your response to treatment and your recovery. Additionally, how your Myeloma responds to the transplant will impact how you feel emotionally. Thus, as a transplant patient, your mental health is important and cannot be ignored. Throughout the transplant process, it is important to pay attention to how you are feeling and strive to maintain your overall mental health and sense of wellbeing.

The Role Your Emotions Play Pre-Transplant

Once you decide to have a transplant, a whirlwind of activities will take place. During this time, you will need to meet with many members of your transplant team and make important decisions about when and where you will have the transplant performed. You will also need to select your caregiver, make arrangements for loved ones at home, deal with healthcare insurance and work matters, and undergo an additional round of tests and procedures. Most likely, you will be bombarded with a variety of emotions, many that may be similar to what you felt when you were initially diagnosed with Myeloma, such as anxiety, fear, hopelessness and despair, depression, anger, a sense of disequilibrium, and a feeling of being overwhelmed. Since it is such a hectic time and you have so much to do to get ready for your transplant, you may opt to put your feelings on a back burner, ignore them, or hold them inside. Unfortunately, these are not good options. Instead, take a few quiet moments to try to relax, reflect on what you are feeling and their intensity, and consider sharing your emotional responses with someone you trust. This might be a time to reach out to your Myeloma coach to obtain extra emotional support. A coach who has undergone an ASCT might be especially helpful. Additionally, a Myeloma support group may be of considerable value. However, if your negative feelings increase in severity, make it difficult to concentrate, and/or interfere with your ability to function, then share your concerns with a member of your treatment team and request professional counseling. Remember, your feelings are important in terms of your treatment and recovery and need to be carefully monitored.

The Role Your Emotions Play during Your Transplant

It’s hard to predict how you will respond emotionally while undergoing your transplant. You are a unique individual, and your emotional responses will depend to a large extent on who you are as a person, your overall mental health, your inner strength, your support system, the severity of your myeloma, and your overall physical health. Most likely, your emotions will correlate, to some extent, with how you respond medically to the transplant. On days when your transplant team is pleased with your progress and you feel better physically, it is likely that you will feel more hopeful and better emotionally. In contrast, if you are experiencing medical complications and not feeling well, it is normal to experience a variety of emotions including anxiety, fear, anger, a sense of hopelessness, depression, discouragement, and a loss of control. It is not unusual to sometimes question your decision to have undergone a transplant, have some regrets, and wonder if it will all be worth it.
Also, don’t be surprised if your sense of identity and feelings of self worth undergo a change, and you feel more fragile emotionally. Some patients feel less valued as an independent, functioning person, and you may feel increasingly helpless. Additionally, you may feel a sense of loneliness and isolation.

At all times, remind yourself that a variety of feelings and emotional highs and lows are normal, and there is no right or wrong way to feel while undergoing your transplant. It’s important to remember that most of the negative feelings you are experiencing are temporary, and you will soon feel better when you are home and on your road to recovery and greater independence. As much as possible, try, even at the most difficult moments, to remain positive and hopeful and keep your focus on the reasons you elected to undergo the transplant and on your medical goals. At all times, be honest with yourself about what you are feeling, and, if you are struggling emotionally, reach out to someone you trust, such as your caregiver, a close family member or friend, your Myeloma coach, or a member of your medical team. Professional help is always available so don’t hold your feelings inside and struggle alone!

The Role Your Emotions Play Post-Transplant

Following your transplant, it’s normal to, once again, experience a variety of feelings. Although most patients look forward to the day of discharge with anticipation and excitement, don’t be surprised if you actually experience mixed emotions when the day arrives. Although you may be thrilled to be going home, you may also feel a bit overwhelmed and uneasy about being increasingly on your own. Up until now, your transplant team has carefully monitored you, and, after discharge, you will be expected to do an increasing portion of your care at home. Remind yourself that you will continue to be followed medically, but not as frequently. If you feel increasingly anxious, share your concerns with your team. Before heading home, make sure you thoroughly understand your discharge plan, any limitations or restrictions that you need to follow, and who to call in case of an emergency. Don’t be embarrassed to ask questions. All of this will help you feel more at ease and in control.

Also, be prepared to experience a variety of emotions, including a sense of relief and joy that your transplant is over along with some anxiety, a feeling of vulnerability, an uneasiness about the success of your transplant, uncertainty about your future, and, possibly, some degree of anger related to having Myeloma and having to undergo a transplant.

After discharge, remind yourself to be patient with your recovery. It is not unusual to feel discouraged if your recovery is not as smooth or as fast as you desire, and it may take you longer than expected to feel stronger and more like your old self. Each person moves at his or her own pace. It is important to be realistic about your recovery and realize that it is not uncommon to experience some setbacks during this phase.

All of the following feelings are considered appropriate during the post-transplant phase:

• A sense of worry and uneasiness

• Anxiety

• Uncertainty about your future

• A feeling of distress

• A deeper level of depression

• Grief and mourning for the life you used to have and a sense of loss for the person you used to be

• A feeling of hope and optimism for the future

• A desire and determination to become more independent and regain control of your life

• A sense of inner strength

• A feeling of gratefulness

• A sense of resilience  If, however, you experience any of the following feelings post-transplant, immediately request professional assistance:

• Increased depression and a feeling of hopelessness

• A significant lack of motivation

• An inability to complete basic tasks of daily living

• Serious sleep difficulties

• Inability to control your thoughts or emotions

• Being noncompliant and failing to follow through with your care

• Withdrawing from others and isolating yourself

• Overwhelming negative thoughts

Thoughts of harming yourself

Fortunately, these feelings do not occur frequently, and most patients respond well following their transplants.

Additional Considerations

Recognizing the importance of your mental health as you undergo a transplant, you may also benefit from incorporating alternative forms of treatment, such as meditation, mindfulness, relaxation, visualization, journaling, and yoga, as part of your treatment plan. Many experts believe these are powerful mind-body tools that will improve your mental wellbeing and facilitate your recovery. (link to page on Mind/Body)

Most importantly, as a patient undergoing a transplant, it’s important to recognize the strong interconnection that exists between your mental health and the transplant process. Your feelings play a role in your physical response to your transplant and your recovery, and the transplant process impacts your emotions. Thus, your mental health is important and cannot be ignored. Fortunately, most patients do well following their transplants. According to research, transplant patients express satisfaction with the quality of their lives and describe themselves as productive, stable, and well-adjusted adults. Clearly, this is the outcome you want to achieve, and it is definitely attainable as long as you pay attention to your feelings and receive necessary emotional support as you undergo your transplant.

About the Author
Louise Miller Lavin, MSN, APRN, LPCC (Fellow Myeloma Patient)

Return to page contents

9. Mind, Body and Exercise

Mind/Body Connection

“It is what it is...But it will become what you make it.”

The mind and body constantly work together. All the systems in the body, our organs, and our emotional responses communicate with each other all the time. The following therapies are different ways to access what goes on in the mind and reap benefits to your body’s immune system.

“The mind/body connection is based on believing that what we feel and think affects our well-being both mentally and physically.” www.cancervic.org.au

“Research has shown the connection between improved immune function and positive emotions, like happiness and joy.” (Scientific American, 11/2013, “How Happiness Boosts the Immune System”)

In the days after your transplant, you may feel emotionally drained as well as physically fatigued. This is an expected response, as you have just emerged from a very intense and stressful experience. Your family and loved ones also may experience certain emotional upheaval. Call the Transplant Social Worker if you have any concerns about you or your family members’ emotional well-being. She or he will counsel you, and if necessary, refer you to another mental health professional. Many patients and their families have found it enormously helpful to talk with others who have shared their experience. Your social worker can direct you
to support groups in your area. Research shows that expressing one’s feelings can help with one’s recovery.

Many believe that the mind/body connection is related to healing. In this section you will find suggestions for complementary therapies, so that you may experience firsthand the healing power of the mind. By choosing different tools such as massage, relaxation, intentional imagery and meditation, you can help boost your immune system. You can decide what works best for you. Maybe it is just celebrating steps along the way, i.e., completing 100 days after transplant, receiving good blood work results, or yearly “re-birthdays”. I myself celebrate them all.

If you select an alternative therapy that is new to you, please check with your physician. There are many ways to relax the mind to enhance healing.

How can YOU find the peace and balance that may help you heal and contribute to a good quality of life? I hope that you will find some answers in this section.

Complementary Alternative Therapy Suggestions

• Visualization-guided imagery 

A form of focused relaxation, where focusing aids in creating harmony between mind and body. Imagery helps with coping skills; one’s emotions and whole body are involved. On this link there is an excellent transplant tool for daily use in the hospital or as an outpatient. Best purchase I made to help me through the first 2 weeks after transplant. https://www.healthjourneys.com/a-meditation-to-help-with-bone-marrow-stem-cell-transplant ation-3

• Mindfulness meditations

Mindfulness is a way to bring your attention to the present and to be intensely aware of your feelings. This can be practiced through breathing exercises and guided imagery. The benefits are stress reduction and body relaxation.

• Journaling 

Make a gratitude journal; include inspirational quotes. Writing down your thoughts and feelings can help to get a better perspective. It can help you sleep better and psychologically adjust to your stem cell transplant, before, during and afterwards.

• Photography

Take photos, or purchase a healing, photo book. The benefits are relaxation and freeing your mind to visually travel to where you are unable to go physically at the moment.

• Music and videos

Use sounds and video on YouTube to reduce stress

• Art therapy

Painting, crafts, doing puzzles (i.e., magic puzzles on the iPad) A good way to mentally distract yourself on those challenging days.

• Laughter therapy

This is a non-pharmacological, alternative treatment which affects you positively, mentally and boosts your immune system. I found a joke website and read jokes each time I felt down. Search for a joke website or ask friends to send you jokes. Laughing out loud is a good, healing thing.

• Support groups

Finding and attending a cancer support group can help tremendously by having access to individuals who plan to have, or have had an autologous stem cell transplant (ASCT). Although each person’s experience is a bit different, just having a conversation with someone can be extremely helpful. Going to support meetings helped me determine the hospital where I had my transplant. Gilda’s Club is an example of one such support group. Check with your health care team or hospital for others. HealthTree offers a Stem Cell Chapter you can join.

• Massage

Massage not only relaxes muscles but can help with fatigue and anxiety. Since added physical pressure may not be good for your bones at early stages, get your oncologist’s advice before you begin.

• Physical therapy, heat therapy, aqua therapy

These are ways to maintain strength and flexibility pre-and post-transplant. Have an advanced discussion with your oncologist.

• Yoga, Tai Chi, Qigong

These are three Eastern forms of mind-body exercise. In general, yoga focuses on physical postures. Qigong incorporates breathing and the mind, along with slower movements. Tai Chi is more of a martial art and is a graceful form of exercise. All of these are good for improving physical ability, reducing fatigue, and enhancing quality of life. There are many free videos on YouTube for this group of mind-body exercises.

• Tapping (EFT technique)

A powerful stress relief technique based on Chinese acupressure www.thetappingsolution.com

• Walking indoors/outdoors

A way to strengthen your bones and heart and to improve mental health. Walking is often the first type of movement recommended after your stem cell transpant. You can increase your pace and distance as you build strength.

• Walking a labyrinth

An ancient practice for centering, contemplation and prayer. A very calming, healing tool that helps you to quiet your mind. – research the location of one in your area.

• Aromatherapy

Learn about essential oils and which ones are good for you to diffuse. Aromatherapy can help with nausea, improve one’s mood and promote feelings of emotional wellness. Candles and lotions may also be used.

• Teas – i.e., peppermint and ginger for nausea

Research others for specific benefits, but check with your cancer team to be sure that what you choose does not negatively affect your treatment, especially with Revlimid, post-transplant.

• Supplements

There are many to explore. Personally, I take Turmeric with black pepper extract added (Bioperine). Review with your physician and select the ones which are right for you.

• Apps for phones and tablets
  • Calm – Features meditations, stories, and music for reducing anxiety
  • Headspace - Meditation and mindfulness simplified
  • Walking – There are many apps for walking. This link shows the top 12: https://www.prevention.com/fitness/g34716585/best-walking-apps/
  • Guided Mind – Easy to navigate app for guided meditations
  • Insight Timer - Meditation app to help calm the mind and manage stress. It includes guided meditations and expert talks.
  • Relaxed Melodies - A soothing app making sleep easy, using relaxing sounds, meditations and bedtime stories.
• Mini projects
• Positivity Cards

Affirmations are simple statements that can create a change in the person using them and program the subconscious for healing. You can read or repeat them from a list or make cards. After my ASCT, I needed to have constant mental reminders that, for example, I was healing, or my hair loss was temporary. This tool can help you keep positive thoughts forward in your mind.
www.freeaffirmations.org

A positive phrase or statement repeated frequently, which can be used in meditation concentration. It is a positive assertion to motivate and inspire. A mantra can be used at any time in the process. It helps to relax your mind and give you focus.

• A collage of images and words representing your future goals, motivating you to get better and stay positive. The board can be made and brought to the hospital to focus on after transplant when you’re fatigued. After 9 years mine is still visible in my home as a healing reminder of how far I have come.
• Mantra
• Vision board
• Website resources
  • www.theshiftnetwork.com
  • This site has online courses and free video events: www.Hayhouse.com
• Publisher of books, cards, videos
  • www.chopra.com
• Videos and articles (see “mind-body health”)
• /HealthTree Links
  • Join the discussion with other MM patients through the HealthTree Connect
• Find Community Forums and look for “Complementary and alternative medicine”
• Exercise
• Think positive - Exercise daily - Be strong

As you go through treatment for multiple myeloma, exercise will help you to stay strong, both physically and mentally. Physical activity is especially important for your body and to maintain bone strength. Before transplant, it is important for your body to be flexible and to keep your heart healthy through safe movement. After, daily physical activity at your own pace, continues to be essential.

The day after your transplant, the hospital personnel will set goals for you. As an inpatient, walking laps every day around the hospital floor is a way to begin to gain back your strength.

As an outpatient, continue to set goals for yourself. The key is to continue moving. Walking is the best way to start.

Physical and Mental Benefits of Exercise

• Improves mood

• May reduce depression

• Improves balance, mobility and flexibility

• Reduces stress

• Reduces anxiety

• Keeps your heart healthy

Some Questions to Ask your Physician

• Do I have any activity restrictions due to my bone strength?

• When can I begin to use light, free weights to build strength?

• How soon can I start a prescribed exercise program? Program Ideas

100 Days Post-Transplant (with Physician Approval)

• YMCA Livestrong This YMCA special program promotes the importance of physical activity after a cancer diagnosis. It is a small group, 12-week program at no cost. www.livestrong.org See Our Programs and select Livestrong at the YMCA.
• Team Body Project – YouTube videos
• Select a low impact, standing routine that you can modify when your body is ready to move past walking
• HealthTree Links
• Check out HealthTree MOVES a program promoting fitness for myeloma patients
• Article: “Transitioning to Exercise”
• Go to Cure Hub See Community Forums
  • Discussion Topics – exercise and multiple myeloma

About the Author
Marianna Scimeca - In February 2020, Marianna joined HealthTree as a coach. Due to her background in education, she enjoys talking to people and sharing positive insights. Marianna had an autologous stem cell transplant in February 2012. She enjoys spending time with family and friends, traveling, reading, crafting and growing lavender. Her specialty is in the use of alternative techniques to help with the many aspects of multiple myeloma.

Return to page contents

10. Post Transplant - Diet

Post-Autologous Stem Cell Transplant (ASCT) Diet

After an ASCT, your body needs time to recover. Your immune system will remain low for many months, placing you in a possible neutropenic state; therefore, you will be at high risk for infections.

Microorganisms such as bacterial and fungal spores are everywhere. They multiply very quickly when they hit a suitable breeding ground and the temperature is right. Especially dairy products, food that isn’t refrigerated or is undercooked, unpasteurized juices and vegetable sprouts are the best breeding grounds for microorganisms. Therefore, safe food handling and following a low-microbial diet are recommended to lower your risk of getting a foodborne illness.

“I went through tandem ASCTs in 2019-2020. Before the transplants I had sufficient time to learn about the low microbial diet. I slowly replaced the contents of my fridge and pantry. I learned how to shop and how to handle food in a safe way. The new cooking techniques also meant new recipes that I still enjoy. I continue to follow the guidelines, although not as strictly as before.”

Always check with your doctor or your nutritionist for your special nutrition needs and how long you need to follow a low-microbial diet. In general, it is recommended to follow these guidelines for the first 3 months after an ASCT.

Basic food safety tips:

• Always eat freshly prepared meals or freshly prepared frozen foods

• Avoid open buffets

• Buy fresh fruits and vegetables without cuts, bruises or mold

• Don’t buy foods from self-service bulk containers

• Keep the leftovers refrigerated and consume within a day. Always reheat before eating.

• Don’t leave perishable food out of the refrigerator for more than 1 hour

• Store eggs and milk on a shelf inside the refrigerator, not in the door.

• Wash fruits and vegetables thoroughly, even if you plan to peel them

• Peel fruits

• Cook vegetables, at least steam them for a few minutes

• Ideally have your meals prepared at home in your kitchen - no food brought in from family and friends

• Keep individually packaged portions of cheese, sausage, jams, butter in the fridge

• Cook meat, fish, seafood and eggs thoroughly

• Avoid deli meats. Microwave packaged cold cuts for 10 seconds before eating.

• Avoid eating at restaurants or buying food from street vendors

• Wash hands with water and soap before handling food, after preparing raw meat and after handling garbage

• Keep all surfaces and utensils clean, ideally using paper towels or a clean cloth and not a sponge.

• Use a food thermometer

• Use an antibacterial cleaning spray to clean surfaces

• Avoid cutting boards made from wood or other porous surfaces. Replace worn out cutting boards.

• Wash cutting boards and knives with hot soapy water before using them to cut the next food.

• Use separate cutting boards for fresh produce and for raw meat, fish, seafood, or poultry

• Keep hot food hot and cold food cold

• Do not share your foods with others

• Avoid alcohol as it can harm your liver. Ask your oncologist when it’s safe to drink alcohol again.

• Do not smoke, avoid tobacco as it can cause lung infection and slow recovery.

Foods to choose or to avoid

Adapted from the following sources:
United States Department of Agriculture (USDA) Food Safety and Inspection Service

Memorial Sloan Kettering Cancer Center

HealthTree University 

About the Author S. Turker

Return to page contents

11. Post Transplant - Other Restrictions

Restrictions post-transplant

• After an autologous stem cell transplant, a patient’s immune system is weak; it can take 3 to 12 months for the immune system to return to normal. During this time, patients are at a greater risk for infection.
• The #1 way for patients to prevent the spread of infection is by frequently washing their hands with soap and warm water for at least 20 seconds or using an alcohol-based hand sanitizer. Wear a mask that covers your nose and mouth when out in public.
• Limit the number of visitors outside of your immediate family and avoid people who are sick, have recently been ill, or recently received a live vaccine. If those living with you work closely with a lot of people or they travel by plane, have them upon arriving home, take off their clothes and shower prior to coming near you.
• No new pets should be brought into your home. Have a family member or friend help with the necessary hands-on care of your pet. Keep existing pets out of your bedroom and bathroom and remember to wash your hands after touching your pet or anything they use. Minimize contact with animals outside your home.
• Avoid crowded areas; have family members or friends do errands. Consider using an online grocery service. If you must go out, be smart – avoid running errands during peak hours.
• Hire help to care for your garden or lawn (for a year after your ASCT) to reduce the chances of developing a fungal infection from the soil. Remove all plants and flowers from your bedroom and any other rooms where you spend a lot of time. No new plants or flowers should be brought into your home.
• While your immune system is rebuilding, avoid wading or swimming in ponds, lakes, rivers, or public swimming pools. Do not use hot tubs or saunas.
• Avoid construction sites, including homes that are being renovated. Keep your car windows up when traveling past a construction site and wear a mask.
• Limit your time in direct sunlight. Chemotherapy, radiation, and some medications make your skin more sensitive to the sun. Protect yourself from direct sunlight, especially mid-day. Use SPF-30 or higher sunscreen. Wear long pants, a long-sleeved shirt, and a wide brimmed hat.

Watch for early signs of infection and report any of the following symptoms to the transplant team immediately:

• Fever of 100.4 or higher

• Shortness of breath

• Shaking chills

• Nausea, vomiting, or diarrhea

• Bleeding

• Symptoms of a cold

• Changes in the level of consciousness

• Pain or cramping

• Problems with the catheter/port (redness or swelling)

• Skin rashes

• Changes in vision

• Indigestion

• Pain with urination or difficulty urinating

Common infection control questions

The general guidelines below may not apply to your case. You must discuss these rules with your transplant team to assess if they apply to you. See key at the bottom of the table for numbered footnotes.

Other activities

  This table is from Seattle Cancer Care Alliance (SCCA) Adult ASCT Manual

Key:

1. No swimming if venous access device still in place (i.e., catheter) or patient history of sinusitis. Swim in chlorinated and well-maintained pools. Uncertain water conditions of lakes, rivers and the ocean for swimming are Ok if water is tested routinely for safety by local state and health departments; avoid small bodies of standing water (lakes and ponds). Swimming in pools used by non-toilet trained babies and children is not recommended. Water aerobics Ok.
2. Shooting rifles/shotguns & golfing is not recommended if venous access devices are still in place (such as a catheter).
3. Recommend caution and an understanding of the risk involved when participating in public events or going to locations with large crowds.
4. Real Christmas trees: in the water reservoir of the tree stand, use a 1-part chlorine solution (Clorox®) in 10-parts water.
5. Wash hands thoroughly with soap and water after kneading dough.
6. Void all public hot tubs

About the Authors Jennifer Littke Mary Sage

Return to page contents

12. Dealing with Ongoing Side Effects

Dealing with Ongoing Side Effects

You’ve probably already learned to deal with the side effects experienced during your induction therapy. Now it’s time to go through a stem cell transplant where the side effects from a high dose of Melphalan can be much more far reaching and severe compared to what you’ve experienced so far. It can be helpful to know what you might expect and what solutions your transplant team recommends to help mitigate them. Remember your transplant team has most likely gone through this with hundreds of patients and they have learned ways to help lessen side effects. They should be the first people you talk to about any discomfort you have, no matter how minor it may seem.

Although some patients experience some side effects from the Melphalan immediately, most don’t have any for a few days after infusion. More severe side effects typically happen about 10 days after treatment. Severity of side effects usually diminishes over the first several weeks after your autologous stem cell transplant.

This is not a comprehensive list of Melphalan side effects, but these are typically the most common ones experienced during the first 100 days post-transplant.

• Fatigue – eat protein to increase energy, daily movement, nap as needed, blood transfusions may be required if hemoglobin is low

• Hair loss – see details in our section on Dealing with Hair Loss (link to Dealing with Hair Loss page)

• Nausea/vomiting- avoid spicy, fatty, fried and sweet foods, your doctor will prescribe medications to help manage this, communicate to nurse if you can’t keep anything down for 24-hours

• Mouth sores “Mucositis”- gargle with a solution of salt and baking soda or get a prescription for Magic Mouthwash

• Diarrhea – discuss with your nurse before starting any over the counter medicine, have adult diapers available if needed, eat frequent small meals, drink plenty of fluids limiting caffeine

• Neuropathy – discuss with your doctor, depending on severity, they may try another medicine

• Anemia – this is not unusual at any phase of this disease, partner with your doctor if this is severe

• Neutropenia – your lowest white blood count usually happens within two weeks of the transplant, follow a neutropenic diet, your nurses may give you booster shots to help increase your white blood count ( lint to Diet page)

• Insomnia – often caused by steroids, try to take them first thing in the am and not nap that day, partner with your doctor if it is severe

• Joint & bone pain – most MM patients deal with some level of pain throughout their journey, partner with your doctor on which medication you should take based on the severity of pain. He/she may also refer you to an orthopedic doctor if you have incurred spinal compression fractures or other bone injuries

• Decrease in appetite – chemotherapy can make your mouth taste bad and any food you eat have a metal tinge to it. Try small portions throughout the day of whatever sounds and smells good to you.

Follow Up Testing

100 days post-transplant is when your specialist will order a full round of follow-up tests. This typically includes bone biopsy, 24-hour urine test, skeletal survey or CT scans and blood work. These results will show what impact the ASCT has had on lowering your cancer markers. Depending on your results your specialist may recommend you go on maintenance therapy. If you go back on an iMiD (like Revlimid) and a steroid (like Dexamethasone) and possibly chemotherapy, you will continue to manage side effects.

The most common ones are:

• Ongoing fatigue – continue to increase your movement daily, nap as needed, try to get yourself on a regular sleep schedule

• Insomnia – see above

• Joint & Bone pain – see above

• Neuropathy – see above

  HealthTree, understands that side effects are something multiple myeloma patients deal with everyday and at different levels of severity. Because of this, patients are often researching ways to diminish or eliminate these side effects. All multiple myeloma patients are striving for a higher quality of life. In response to this need, HealthTree has created an interactive way for patients to both look up potential solutions and share things that have worked for them.

  In their “Patient Solutions” section of HealthTree, you can search for a specific side effect to find solutions that others have found helpful. These solutions have been provided by patients just like you. You can also filter side effects by an individual drug or combination of drugs.

  Visit the Patient Solutions on HealthTree 

For more information on potential side effects see this video.  

About the Author Amy Gebhardt

Return to page contents

13. Long Term Recovery

Much of the following information is taken from Seattle Cancer Care Alliance (SCCA) Adult Autologous Transplant Manual. Keep in mind while the information is generic it may vary somewhat by facility.

How to take care of yourself in the first year (day 30 and beyond)

“How do I measure success? I ask myself this often. I admit I didn’t rush into having a stem cell transplant, I was determined to not go this route. What changed my mind? When I started to think of an ASCT as a protocol or ‘another MM treatment’. Success was not a guarantee but what was for certain was my attitude waking into the ASCT. Once I embraced this the stem cell transplant made sense as the next step to getting my multiple myeloma under control.”

-Mary Sage, ASCT Survivor

The long-term recovery phase may take a year or longer. This is the time to re-establish your life after transplant. What does re-establish your life entail? It means gradually getting back to your life patterns at work, school or at home, and making adjustments in relationships with your family and friends. It may also mean learning to adjust to the therapy needed for chronic or long-term complications. Former patients have noted that the interruption of life plans, the adjustment in relationships and preparing to re-enter work and family life can be difficult adjustments to make. You may experience a sense of loss or discouragement. Some people become involved in the quest for deeper meaning in their lives. You may want to seek therapy to help you cope with chronic health issues and emotional responses to the challenges of treatment and recovery. You may find that you will benefit from counseling to gain tools for coping with issues of chronic illness or feelings of loss, anxiety, stress, worry, and depression.

Re-establishing your life may vary from difficult and rough to easy and smooth. During their recovery, some patients express a positive view caused by achieving a redirected life, greater compassion for others and improved family relations. The majority of survivors report that their quality of life is now the same or better than before transplant. On the other hand, some patients struggle and become discouraged as they cope with the various life changes. Despite the intensity of the transplant experience, most patients make effective adjustments in their life and maintain an optimistic outlook for the future.

Take pride in your journey through intensive medical treatment but remember that full strength and fitness will take several more months, or sometimes years, to achieve. Recovery is usually a gradual process. Continue your programs of rest, exercise, and good nutrition.

Transition to home (days 30 thru 100) 

Most facilities have a Long-Term Follow-Up (LTFU) department for autologous stem cell transplant patients. Keep contact info for your ASCT facility as well as your primary care physician at hand. Call your primary care physician for everyday concerns. Call your oncologist for treatment related issues. It is a real possibility that you may be readmitted to a hospital during your first year after transplant.

Even though you may be very happy and feel ready to go home, you might also feel nervous. It’s normal to have some worries and concerns as your discharge date gets closer. At home, you and your family will need to manage your care. Feeling confident and comfortable doing this takes time. During your follow-up visits, your social worker can help you get the services you need and give you emotional support.

When you go home, it will take time to get used to living at home again. You may find that the things you need to do to keep from getting sick add some stress to your life. Feeling a sense of balance and comfort again will come with time. Try to stay as calm and confident as you can.

Your recovery after transplant will be gradual. You probably won’t feel the same way you did before your illness for a while. You may feel tired and weak, have a smaller appetite, and notice changes in the way things taste and smell. It will also take time for you to get your strength back and go back to doing the activities you enjoyed before your illness and transplant.

Self-care steps (day 100 and beyond)

Your Self-Care Responsibilities

You will play a key role in your own recovery. By following these suggestions, you can help lessen the risk of complications. Caregivers can assist you with many of these activities, especially to prompt you to maintain your physical activity.

Hygiene

It is important to keep yourself as free of germs as possible. Even though you may not feel like it, or have low energy, you should take daily showers and always wash your hands after using the bathroom. Please do not use any lotions or creams, except those approved by your oncology team. The use of makeup products is discouraged as they often harbor germs and can irritate skin. Makeup needs to be ‘new in package’ only to prevent germs.

Light Exercise

Moderate physical activity will help maintain your circulation, your lung and heart function, and your muscle tone. It is encouraged to walk around the unit regularly; if you are receiving infusions, you can walk with an IV pole. Each time you leave your room, you will need to wear a mask. You may also be asked to wear gloves.

Exercising Your Lungs

Fluid buildup in the lungs and infection can be avoided with proper respiratory care. You will be asked to exercise your lungs regularly using a special breathing device called an incentive spirometer. Deep breathing, plus physical exercise, will help your lungs continue to function well. Keep your spirometer handy during recovery and after. Recovery often means low activity or sleeping much of the time creating a perfect storm for fluid build up in the lungs that may lead to pneumonia. Fluid build up can happen fast and could mean a trip back to the hospital. Partner with your oncologist as to how long you should continue this at home.

Nutrition

After chemotherapy, you may have difficulty eating. Food may not taste the same or your appetite may be diminished. The transplant dietician will work with you to maintain your food intake, as good nutrition is essential to your body’s recovery. It is important to take in calories, even if you do not feel like eating. Eat small portions throughout the day if you are unable to eat full meals. It may take a while for your taste buds to return to normal, try any snacks that sound good to you, try ice cream or nutrition supplements, such as Ensure or Premier Protein drinks.

Keeping Yourself Occupied

A long recovery and limited interaction with others can lower your spirits. Try to keep yourself occupied with daily activities that not only challenge your brain but keep you active. You may want to try daily crossword puzzles or word search games to engage mental activity. Make an effort to connect with others daily either by phone or video calls. This will bring comfort to those who cannot yet visit with you as well as provide you with contact with others outside your home. It is important you get up and walk around even if it’s only inside the house. Keeping yourself active will help the recovery process go faster.

Maintaining a Positive Attitude (Link to Mind/Body page)

A positive attitude is a powerful factor in your recovery. Those who cope well with cancer tend to be active, assertive and optimistic. A positive outlook means you approach your life with hope and optimism. Being positive does not mean that you will never be discouraged or have

feelings of sadness or anger about your situation. Indeed, trying to cover up “negative” thoughts or feelings can be counterproductive. Even if you feel you are not naturally “upbeat,” a fighting spirit can be developed. Support groups and individual psychotherapy have been shown to be effective in fighting depression. Ask the Team Social Worker to direct you to the appropriate resource.

Physician's visits

These include physical exams, as well as labs and tests (such as blood counts, kidney and liver function tests).

If you have had your ASCT at a facility away from home not where you get your regular chemo treatment, verify with your ASCT treatment team on appointments you will need to return to their facility for and which appointments can be completed with your local oncologist.

You will partner with your oncologist for your follow-up visit plan, but typically you can expect the following days 30 - 100:

● Office visits and blood work once every 3 to 4 weeks, depending on your progress.
● On or about the 100 day mark post ASCT your oncologist may order tests to determine next steps or when to (or if) have you will begin maintenance therapy. Your maintenance therapy may be the same medication(s) you were receiving prior to your ASCT or a new protocol may be suggested.
● A one-year follow-up evaluation is necessary to assess disease status, late complications, and to begin scheduling vaccinations. Typically, your oncologist will order a full round of tests a few weeks before your visit, enabling him to review the results with you during your appointment.

Skin care

• Avoid long (over 1 hour) exposure to sun

• Apply sunblock or wear SPF (30 or higher) clothing even on cloudy days, as you

  will still be exposed to ultraviolet radiation.

• Notify your physician if you develop a rash.

  If dry skin is a problem, it is not necessary to bathe daily.

• Use oil in bath water.

• Use lotion.

• Try natural soap for sensitive skin.

Nail care

• You should not have manicures and pedicures if your immune system is still recovering and you are on antibiotics.
• Avoid fake nails and cutting your cuticles.

If your ANC (absolute neutrophil count) is greater than 1,500, without need for transfusions and you are off high dose steroids (greater than l mg/kg.), you can have a manicure or pedicure. Make sure a single basin is used, and equipment is sterilized after each person.

• Daily mouth care

Careful flossing and brushing is important to maintain dental health and prevent infections. Continued use of saline rinses can help if your mouth is dry, if you have excessive mucus, or if you are being treated for oral fungus. Rinse your mouth using 3⁄4 teaspoon table salt in 1 quart of warm water. Change out your toothbrush for a new one every 3 months to ensure low germ activity. You might consider a UV toothbrush sanitizer that will clean and disinfect your daily toothbrush.

Dental visits

• See your dentist six months after you return home for an exam to monitor for tooth decay and overall oral care. Routine dental cleaning and dental work should be postponed for at least 12 months after transplant. Your dentist should also monitor for oral cancer every 6 months. If dental work is necessary and you are still immunosuppressed, you will need an antibiotic based on recommendations from the American Heart Association. Check with your oncologist prior to having any dental work.
• Dry mouth
• See a dentist if you have extreme problems with decay. However, fluoride and excellent oral hygiene can minimize or prevent this. Daily home use of fluoride brush-on gels or custom fluoride trays is recommended. Follow guidelines provided by your oncologist. Saline rinses or other non-prescription products, such as Biotene®, can help to relieve dryness.
• Mouth changes
  • Contact your physician for any changes such as ulcers, mucoceles (clear blisters on the soft area of the roof of your mouth or the inside of your lower lip), stinging, burning, dryness, pain, difficulty eating or swallowing, or loose or chipped teeth.

Common changes

"You may hear the phrase ‘Welcome to your New Normal.’ The new normal is not a bad normal, just different. Perspective is everything."

- Mary Sage, ASCT Survivor

Cognitive changes

The issue of cognitive changes is receiving more research attention. Cancer causes biochemical changes that are now suspected of contributing to cognitive changes, even before any treatment. High-dose chemotherapy and radiation affect cognitive function. Studies show varying incidences of "chemo brain" among transplant patients. However, research indicates that the decrease in memory, multi-tasking ability, and attention that characterize post-treatment cognitive changes resolve for a majority of people after about a year. People can return to their pre-transplant cognitive functioning anywhere from one to five years post-transplant. Some people will continue to have memory or fine motor difficulties. If you are still having difficulties with cognitive changes after one year, ask your physician for a referral for neuropsychological testing so you know what

your deficits are and what you can do about them. In the meantime, help your memory by keeping a notebook where you put the things you want to remember. Make sticky notes about what you do not want to forget, like taking medication before you go to bed. Put the sticky note by something you always remember, like brushing your teeth. Keep a basket by the door for the things you need to take with you, like keys or glasses.

Sleep

Most people have difficulty with sleep at some point during and after transplant. It can be hard to get on a regular cycle of sleep and worry tends to increase as people lie in bed awake. Medication should be a short-term solution, not a lifetime aid. Tips that help include keeping the bedroom dark and cool, and going to bed and getting up at the same time each day. Get out of bed and do a relaxing activity like reading if you do not sleep after 30 minutes of trying. Learn relaxation skills to help your body and mind to relax while you are lying in bed. For addition resources - link to Mind/Body page

Depression and other feelings

You may continue to experience significant distress following your transplant. Sometimes, this can lead to feelings of sadness or depression and associated symptoms such as worry, anger, and fatigue. Distress can also lead to changes in sleep and eating patterns. Even post-traumatic stress can happen. We recommend making time and saving energy to participate in activities that you enjoy, so life is not entirely about your health.

Spend time with friends and family. If these symptoms continue for more than a couple of weeks, it is important to discuss them with your physician or nurse. Some people find that talking to a therapist after transplant is very helpful. There is so much that most people have been through and have to cope with after treatment. Talking with a therapist can help you reclaim your life and make sense of what you have gone through.

Fatigue, weight, and exercise

"After my ASCT I was extremely weak. I would find myself taking breaks as I climbed the stairs. I'd get up at 8:00 in the morning and by 10:30 I'd be snoozing. You even ask yourself, "Am I milking this? Am I really this tired?" because I'd never had anything like this before. Keeping a routine was a challenge but I worked hard at trying to stay aware and focused.”

- Mary Sage - ASCT patient

Many people report increased fatigue after transplant. Exercise is an effective way to decrease this fatigue over time. We recommend a program of daily moderate exercise, such as walking. Increase the distance and pace as your strength and stamina increase. It is also

important to rebuild muscle through a program of gradually increasing weight training. Couple this with stretching, yoga and/or gentle fitness classes. See if a YMCA near you offers a low-cost cancer survivorship program or ask for a physical therapy referral to get an exercise plan from someone who has experience with exercise after cancer treatment. If you exercise at a moderate level and have rebuilt muscle, but your fatigue continues or if your fatigue increases, talk to your physician about other possible causes of fatigue. The best exercise is the one that you do regularly! Follow the advice of the nutrition staff. Eat healthy foods.

Swimming may expose you to microorganisms capable of causing infections. You should measure the benefits of swimming against the potential risks of these infections. If swimming or water aerobics is the preferred or recommended method of exercise, it should be done in a well-maintained pool with adequate chlorination. Your face should not be submerged under the water. Never swim with a central line in place. Also, do not swim for the first 6 months after the transplant. Hot tubs should not be used for the first 6 months after transplant.

Immune system recovery

The first year after transplant is like your first year of life as a newborn baby, you may hear the term ‘your re-birthday’. During this time, you’re at risk for infection. Adequate immune function takes approximately 1 year after transplantation to recover. During this time, you are still vulnerable to infections. Symptoms such as fever, chills, coughing, difficulty breathing, severe diarrhea, or vomiting should be promptly reported to your transplant team.

Exposure to others

Avoid crowds, especially during cold and flu season. Avoid people with a contagious infection. Please contact your physician if you are exposed to chickenpox, shingles or COVID.

Hand washing

Continue to be as careful about hand washing as you have been throughout the transplant process. Perform hand hygiene frequently by washing your hands with soap and water or applying an alcohol-based hand sanitizer that contains 60-85% alcohol. Ask family and friends to wash their hands or use hand sanitizer when they come into your home. Wear disposable gloves if you must change a diaper. Wash hands after disposing of gloves.

The most effective way to get rid of germs is by washing our hands with regular soap under running warm water for at least 20 seconds. According to the CDC, there are a wide variety of situations in which it's ideal to wash hands with soap and water. This includes:

• Before, during, and after food prep (especially if handling raw meats) and before eating any food

• Before and after interacting with someone who is sick

• Any time hands get visibly soiled, such as after playing recreational sports, gardening, camping, etc.

• Before and after treating a wound

• After using the toilet, changing diapers, or helping a child in the bathroom

• After touching animal food, cages, or waste

• After touching trash

• Any time hands appear dirty or greasy

Temperature

• Take your temperature if you are feeling ill, shaking chills or suspect that you have a fever. Note time and circumstances. Notify your physician promptly for:
• Temperature taken by mouth between 100.4 +°F for one hour or more.

Rash

Notify your physician promptly if any rash develops. Take a photograph of the rash to document it and be able to share with your physician.

Animals and plants

Avoid contact with body excretions of all animals and do not sleep with pets. Do not bring new pets into the home during the first year. Established household pets and plants may remain in the home. Gardening is not recommended for several months.

Sexuality & Sexual Activity

Limiting the number of sexual partners is advised. Use condoms for protection against Sexually Transmitted Infections (STI). Normal cleanliness should be observed. Use birth control as necessary to prevent pregnancy, as you may not be sterile. Discuss this with your physician and nurse.

Most men and women notice a drop in sexual desire during the first year. Make time for intimacy so that you begin to re-awaken those feelings. You may have a low energy level or feel unattractive due to the changes that your body has undergone. Partners often hesitate to make sexual advances out of concern for your health. Women can have vaginal changes and men may have erection problems. Medications can be the cause of some of these changes; problems may disappear over time or after stopping the drugs. Hormones can change for men and women after transplant. For men, it often takes a full year for testosterone levels to return to normal, affecting both erections and desire. It's important for both partners to talk about their feelings and to be patient with one another. Begin to set aside "date" time to be romantic, include touching in your intimate time together. Start trying sexual activity even if your desire is not back to its previous level.

If dryness or irritation is a problem, a silicone-based lubricant can be helpful. Water-based lubricants are also safe but won't last as long. If graft versus host disease or sensitivity is a problem, ask to see a sexuality-after cancer specialist or look online at SCT websites on sexuality to learn more about what can be done for these problems. After cardiac mevaluation, drugs used for erectile problems can be helpful for some men.

Fertility

Prior to your ASCT you and your team may have discussed fertility concerns. Both males and females may experience an impact on their ability to conceive. This may or may not reverse over time. Consult with your team on therapies that may help restore fertility.

Menopause

Females may experience premature menopause brought on by the ASCT. Complications of premature menopause include infertility and an increased risk of osteoporosis. Prior to your ASCT you and your team may discuss hormone replacement therapy. After an ASCT, regular gynecological follow-ups should be scheduled yearly.

Osteoporosis for transplant recipients

Osteoporosis or bone loss may happen in some patients. It is related to irradiation, use of steroids, inactivity and low hormone levels. Weight bearing exercise is recommended to help prevent or stabilize osteoporosis. You may need calcium and vitamin D supplements, or bone-rebuilding medications. A Dexa Scan can be done to determine the level of bone density in your lower back and hips and show if you have Osteoporosis or Osteopenia. Discuss this with your local physician, oncologist or gynecologist.

Travel

Take extra medications with you when you travel and consider where you could receive the treatment you need if you became ill. Move around during flight or transit time to prevent blood clots that could lead to a major lung problem.

Many patients travel home within the first 6 months after transplant. As with any activity involving risk, weigh the specifics of your situation. To minimize risks when traveling:

• Take a copy of critical medical records with you.

• Seek medical care promptly for new symptoms.

• Control your environment by avoiding crowds and maintaining infection precautions.

• If you must fly, partner with your physician prior to your trip to discuss added precautions you can take. On the flight, ask to be moved if you are seated near someone with respiratory symptoms. Wear a mask, wear gloves, do not touch your face or eyes during the flight, carry hand sanitizer and wipes.

  Other reminders

  • Minimize exposure to dirt and aerosolized material

  • Minimize sun exposure, use sunscreen (SPF greater than 30)

  • Wear a hat, long-sleeve shirts and long pants if outside for long period of time

  • Avoid construction sites

  • Avoid contact with people that:

    • Have cold and flu symptoms like coughing and sneezing.

    • Display symptoms of other types of infections such as vomiting or skin rash

Immunizations

Post-transplant immunizations usually start at one year post ASCT (immunizations may continue upto 2 years post ASCT). The immunizations schedule may vary from each facility. These immunizations may include:

• Tetanus

• Diphtheria

• Pertussis

• Meningococcal

• Inactivated polio

• Influenza

• Pneumonia

• Haemophilus influenzae type B

• Hepatitis B

• Hepatitis A

• HPV (ages 9-26)

• MMR (mumps, measles & rubella)

If a household member receives the Varicella (chickenpox) vaccine, you should ask your oncologist if you should be taking acyclovir. If a household member develops lesions (or pox), you need to be isolated while their lesions are present.

Medications

Your oncologist may prescribe the following medications to help protect you while your immune system is compromised. Your medications are important to help you maintain your general health. Please take them as prescribed.

• Bactrim® (sulfamethoxazole-trimethoprim):This is a broad-spectrum antibiotic specifically for the prevention of pneumocystis pneumonia and for prevention of certain types of bacterial infections (Streptococcus pneumonia and Haemophilus influenza).

  • -  Take this medication if prescribed for at least 6 months after transplant.

  • -  Always take Bactrim® (or an alternate drug) when taking immunosuppressive medications.

• Acyclovir or Valacyclovir: These drugs are antiviral agents used to prevent varicella zoster (shingles). If one of these is prescribed, it should be taken for the entire first year, and should be given concurrently while on immunosuppression and for six months after completion of an ASCT
• Hormones: Hormones may be prescribed for women in premature menopause due to the effects of conditioning therapy.

Secondary cancers

There is an increased risk of getting a different cancer in long-term survivors after transplantation. The risk starts to increase at five years after transplantation. Skin, mouth, thyroid, and breast are the most common sites of secondary cancers after transplant. Cancer screening evaluation is recommended and includes:

• Complete skin examination

• Oral exams

• Breast exam and mammograms (woman)

• Prostate exam (men)

• Colonoscopy (according to age and history) ● and others as needed

Original disease restaging is also recommended at periodic intervals depending on diagnosis.

Reconnecting with life and survivorship

It is normal to feel vulnerable after returning home. These feelings are valid, but don't push the panic button every time someone sneezes! It's important for you to see your friends and return to normal activities too. Just use common sense-"when in doubt, don't." Some patients, especially those who had a stormy transplant course, find it hard to plan for the future. Make a specific detailed plan for something you want to do. This helps you to feel like you are moving toward something, not just marking time while you recover.

Helpful hints to remember

• It is healthy to find a "silver lining" in your situation. It doesn't mean that you forget the clouds, it's just that the clouds are not the whole story.

• You are your own best friend. Take care of yourself. Get enough rest, exercise, and good nutrition. Be patient with yourself and others.

• Watch for changes in your body, hair, nails, eyes, skin, mouth, and joints. Tell your physician about any changes.

• Try to take one day at a time; focus on your goals for today, particularly after you first return home. Make sure you include something you enjoy each day.

• It is normal to feel alone at times; it's true that no one else has been down your road and really knows what it is like for you. Make it a goal to connect with people and do activities you enjoy so that you start to feel like part of your community, even if at first you don't feel like it.

• Remember that your caregiver and family have also been through a major challenge. Check in with them weekly to let each person describe what they are experiencing. You don't need to fix each other's concerns; just use this as a time to listen and reflect upon what each person is feeling. Ask if there is anything that would make things better.

• Do not be afraid to ask for professional guidance; you deserve it! Almost everyone receives some kind of help.

• Check with your employer to see if you have access to an Employee Assistance Program.

• Return for follow up appointments as recommended by your oncologist for re-evaluation.

Relationships

It may be difficult to resume relationships as they were before your ASCT because your experience has changed your perspective on life. Your illness may have affected the feelings and perspectives of the people around you. It may have produced role changes that can affect relationships. People report that these changes can be very positive, but they also can take some time to sort out. Make sure each person in your family has a chance to describe their fears and concerns. Even if it is hard, try to give each person time to describe what is going on in their lives and thoughts. Caregivers may be used to taking care of you and home tasks. These role changes can take time to get back to normal. You can help them along by discussing a weekly plan of who will do what.

As you are ready for more responsibility, make this clear to your caregiver. With friends, it might help to discuss what is different in your life and how much the friendship means to you. Sometimes you may have to reach out to friends rather than waiting for them to come to you.

Survivor syndrome

I feel like I went to war and I am fighting every day to survive. The ASCT was not easy for me (I had heart complications that lead to a mild silent heart attack) but I made it out the other side. I have close friends with MM who did not. I sometimes find myself avoiding interactions that find space to compare myself to them, if only in my head. I am alive, they are not - why? And then I need to add - why not me?’

- Mary Sage - ASCT patient and 6 year survivor

Survivor guilt is something many of us must cope with as cancer survivors. At the same time, we hit the milestones of being cancer-free—or at least being alive with cancer—invariably someone we know, and love has a downturn or succumbs to the disease. Instead of the “why me” questions we may ask ourselves when diagnosed, the question becomes: “Why not me?”

You may have feelings of guilt because you are alive when others did not survive. You may also have a strong sense of grief and loss. Even though you are glad to be alive, it is normal to feel that you have lost things that you will never again be able to regain. Discussion with a counselor, minister, priest or rabbi can help put this in perspective. If you aren't sure what you want to do, or feel like you want a change, give yourself time to recover while you discover what you want most. Some people re-evaluate what they want to do for the rest of their lives. Having survived this adventure, you might decide to try another new one.

Some points that may help you navigate this:

• Acknowledge your guilt

• Reach out and express your feelings

• Allow yourself to grieve and remember the less fortunate

• Accept that there are no answers

• Embrace your spirituality

• Practice stress relief

• Consider joining a support group

• Ask for help and support
• Celebrate your survival

Returning to work or school

Returning to work or school is very complicated. You need to be ready both physically and emotionally. We suggest that you wait 6-12 months after transplant to return to work or school, but home tutoring or work in a home office can precede these dates. You may be eligible for social security benefits because of your inadequate immune system. This will be the case for at least one year. There are many organizations that assist cancer and transplant survivors with employment issues. For more information and things to consider before returning to work - link to Return to work page.

The Department of Vocational Rehabilitation offers counseling for emotional or physical disabilities. Some people are eligible for social security. See below for additional information:

Department of Vocational Rehabilitation www.dshs.wa.gov/office-of-the-secretary/division-vocational-rehabilitation

Americans with Disability Act www.ada.gov Cancer and Careers www.cancerandcareers.org

Financial concerns

Many people report insurance and financial concerns. We recommend that you look into social security and private disability insurance For more information and resources and financial planning and questions - link to Financial page

A note from the Author - Mary Sage

As I write this section I am 2 years post ASCT (7/5/2019). The burning questions I receive most are ‘did it work and was it worth it?’

Did it work? Once I realized getting an ASCT was only part of the bigger picture I realized there are many small parts to this larger puzzle. For me, the ASCT was a two part journey. Part one was getting my numbers in a good place from which the ASCT had room to ‘work’. Once I got my numbers right I knew the foundation for the ASCT was set to go. Around my 6 month mark my blood work showed the MM to be present but ‘too low to quantify’ which for MM is a great place to ‘live’. The second part of my journey involves maintenance therapies. I am a strong advocate for maintenance therapies and am grateful there are so many effective options.

Was it worth it? Yes, I believe the ASCT did exactly what I had hoped - it gave my maintenance therapy a good base from which to work and be more impactful.

The multiple myeloma journey for many is not a one and done type therapy - it is a lifetime. I believe dipping into as many therapies and protocols available to multiple myeloma patients sets us on the path of long term success.

It’s easy to suppress some of the unpleasant aspects of an ASCT. I am often reminded the destination is just part of the journey. My body is working hard daily to remain ahead of the disease. Little victories and celebrations are always a great way to celebrate the hard journey I have been through to get to this point. Be well!

Survivorship resources and websites Post-transplant networks

Blood and Marrow Transplant Information Network 

Be the Match 

Bone Marrow Transplant Forum, BMT-TALK: To subscribe to the mailing list, send an email with "Subscribe BMT-TALK" in the message body along with your first and last name to: listserv@listserv.acor.org

Patients Cancer Survivors Network: emotional support for transplant

Center for International Blood & Marrow Transplant Research

Help with post-transplant medication costs Patient Access Network Foundation 

Fertility

Resolve support group for infertile couples

Insurance

American Cancer Society Health Insurance

National organizations

National Bone Marrow Transplant 

National Cancer Institute
Search "Facing Forward: Life After Cancer" 

National Marrow Donor Program Search "Post-Transplant Care" 

National LGBT Cancer Network 
American Cancer Society 
National Coalition for Cancer Survivorship 

Men's health

Men's Health Network

Skin care

Skin Cancer 

Sun Safety
Search "Sun Safety" 

Sun Precautions Clothing
phone number 1-800-882-7860

Women's health

North American Menopause Society 

National Women's Health Network 

Young Adult

Livestrong 

About the Author Mary Sage

Return to page contents

14. Returning to Work

Returning to Work

After the Autologous Stem Cell Transplant (ASCT) has been completed and you are making good progress, you may be thinking about returning to work, shifting to a new position or even a new career path. For many patients work is tied to a sense of self or sense of purpose and the need to get back into the workforce is part of wanting to move forward to the “new normal”.

The progress of re-integrating into the workforce can often bring feelings of excitement, relief, and hope, along with nervousness and uncertainty. Examine those feelings to determine:

1. If returning to work is a necessity or do you want to work? How does this factor into your decision-making?

2. What are your short and long-term goals for work?

3. Whether your career priorities have changed? If they have, in what ways?

4. Can you be comfortable with infection prevention strategies in the workplace

   and along your commute?

5. Consider if you will need accommodations to return to work in a safe

   environment (ADA accommodations or germ precautions). You will need to have a conversation with your HR department prior to re-entry. You may also ask your oncologist or primary care physician to write a letter or prescription for your specific needs/accommodations.

You may feel mentally ready to return to work, but you want to be sure you are physically ready as well. Even if your job is not physically demanding, the responsibility of being productive for several hours at a time, having to be responsive and alert can be

unexpectedly tiring. You’ll also need to get back into a routine of waking and getting ready, as well as commuting and protecting yourself along the way. Take time to consider any level of stress that you may be faced with. You will be re-entering the world of deadlines, expectations, and responsibilities and want to be as prepared as you can be.

Returning to work or seeking a new position is a personal decision. When you determine it is the right time for you, having a good plan in place can make for a smooth transition back into the workforce.

If you are returning to a position held before the transplant here are some things to consider that will help that plan fall into place:

• Talk with your care team. Your doctor may want you to hold off returning to work until after your 100-day follow up tests and visit, but you may want to return earlier. You should review your blood counts and other factors with your team and discuss what mitigation factors you can use to reduce the risk of infection, during this recovery time and beyond during your post-transplant life.

• Speak with your employer, let them know you are ready to return to work. This will give your employer time to start preparing for your return. Explain

  reintegration issues: fatigue, infection prevention, and possible treatment schedules. You may want to consider returning on a part-time basis for the first few weeks, if that is an option.

  The following items are suggested topics to explore.

  • FMLA leave – did they hold a spot for you? You will need to find out if your position was held for you or if you will be coming back to a position equal to what you were doing before you took leave? Note that FMLA notice usually needs to be filed ahead of time. You may have done this at the time of diagnosis. The need to file FMLA forms is often dependent on your position, your employer’s leave use policies, and other factors.

  • How will treatment affect work schedule?

• Often after a transplant you are asked to start a maintenance therapy that will aid in keeping any residual myeloma at bay. Sometimes the therapy is given IV and will require trips to the clinic. This will influence your work schedule.

• Demands of the job
  Will you be able to perform all previous job requirements or function at the same capacity as you were prior to the transplant? You may find that you need an accommodation. Reasonable accommodations could be in the form of modified workspace, flexible schedule, teleworking or working remote, etc. You should ask for an accommodation as soon as you think you need one. A letter from your oncologist outlining your accommodations would be helpful and may also be required.

• Brain Fog (Chemo brain)

• Thinking and memory problems are often described as chemo brain or brain fog by cancer survivors. It can occur during and after cancer treatment. Chemo brain is also referred to as feelings of mental fogginess, difficulty concentrating, being unusually disorganized, or having a short attention span. The effects of chemo brain can be short or long term. Careful consideration should be given to how chemo will affect you and how it could affect your work performance. Keep in mind chemo brain impacts each differently. Some may feel this for up to 2 years post transplant while others recover more quickly. Also keep in mind if you are receiving maintenance therapy your ‘chemo brain’ may be an ongoing concern.

• Work schedule

Can your schedule and hours be adjusted if you get back to work and find that the work hours you previously had are not working for you? Partner with your employer on options that might work better for you while still accomplishing your job responsibilities.

•  Disclosure

What about your illness do you need to disclose? When and to whom does the information need to be disclosed? You are not obligated to disclose your cancer history to a current employer. When looking at potential employers, you are not required to disclose information on the application, in your cover letter or during an interview process. Deciding whether to disclose is a personal choice. Take some time to think about your specific needs as well as the pros and cons of both sharing and not sharing the information.

• Short-term disability
  Utilizing short-term disability is an option for those that can only work at certain times of the year due to compromised immunity and are at risk for infection. For example, you may work in a job where the risk of infection may change over time, such as a higher risk of pneumonia in the winter. Work with your care team to identify such situations and conditions that may require you to step away for an extended period of time.

• Ticket to work
  The Ticket to Work Program is sponsored by The Social Security Administration. If you were awarded Social Security Disability Benefits and want to re-enter the workforce, the program allows you to gradually get back into the workforce until you are fully self-sufficient. The program offers several incentives that help you succeed at getting back to work. You can work with confidence, knowing that if work is too much for you, you still can maintain your benefits.

Additional Considerations

In addition to the subjects covered for returning to a position there are a few things you may want to consider and plan for if you are changing careers, searching for a new job, starting your own business, or considering something different. You may want to consult or hire a Career Counselor to assist you through the process. Career Counselors can help with career exploration, updating your resume and cover letter, provide guidance for networking and managing your online reputation, in addition to helping with the job search for a new position.

Networking is a tool that can help you find the position that is right for you. You may have to call or email people that you have not spoken to in a while, and this may cause you to feel uncomfortable at first. Do not shy away; many people are willing and eager to help. Be specific and reasonable with your request for help when networking.

Look beyond your usual circle for connections. Use industry contacts, join a professional organization or group, reach out to former co-workers and bosses. Build an effective LinkedIn profile to display your experience, skills, and endorsements. Mention your job search when you chat with acquaintances at the doctors, church, and support groups. Once the connection is established be sure to continue to engage with them. Offer to help your connections in return. Reciprocity is key when networking.

Managing your online reputation is something else that you want to be aware of as you prepare to search for a new position. As you went through cancer treatment and recovery you may have used social media platforms as a means of support. Whether the information was posted to Facebook, Twitter, or any other social media platform it is public knowledge and can be seen by current or potential employers. Sites that include

info on volunteer work, patient advocacy forums, as well as Caring Bridge, and Go Fund Me pages are not exempt from being seen by your employer or potential new employers. Each social media site that you used can come up in a search of your name on the internet, and each one is an element of your online brand. You want to be sure that your personal branding is conveying the message that you wish.

To protect your personal branding pay attention to privacy settings on social media. This allows you to control who sees what. Remember that privacy setting options change frequently so test your privacy settings occasionally. Remember, the best course of action is to make sure you are not posting anything you do not want seen.

Google yourself and use sites like spokeo.com and intelius.com to see what information about you is out there. Checking to see what exists allows you to be aware of what current or future employers can find out. This can help you be prepared to answer any potential related questions.

Now that your focus is returning to work you may regret some of the information online detailing your diagnosis, treatment, complications, frustration, and recovery being out there. If you decide that you no longer want this information public there are steps you can take to lessen the impact that it may have. There are professional companies that handle online reputation management, but it can be costly. You can work to improve your own online reputation by finding out what information is out there that you do not want to be public. Keep track of what information is listed where. Delete what you can from social media platforms. If there is medical information you need to have deleted, you will need to send an email asking for the information to be deleted or blocked from being searchable.

Whether you decide to hire a professional to help manage your online reputation or choose to manage it yourself, keep careful notes about conversations and other actions with your boss or interviewer that may be related to your online medical information. For instance, if you posted medical information about your cancer, and shortly afterward, a job offer you were expecting does not come through or a promotion is canceled, recording that on your timeline might be valuable if you decide to talk with your boss, interviewer, HR person or an employment attorney about discrimination.

When the time is right, returning to work can be an immensely worthwhile achievement. Do not rush the process. Returning to work before you are physically and mentally ready can have an impact on your health.

Cancer and Careers is an awesome place to find help when going back into the workplace after having a transplant.

References:

Cancer and Careers
Compass Oncology
Job Accommodation Network Chemo Brain
Ticket to Work

Cancer. (n.d.). Job Accommodation Network. Retrieved May 4, 2021

Cancer and Careers | The Top Resource for Working People with Cancer. (2021, May 9). Cancer and Careers

Kleutghen, P. (2021, May 21). Chemo Brain for the Multiple Myeloma Patient. HealthTree.

Returning to Work. (n.d.). Compass Oncology. Retrieved May 3, 2021

Work, T. to. (n.d.). Timely Progress Review (TPR). Ticket to Work - Social Security. 

Cancer Advocacy

Employment Rights Cancer and the Americans with Disabilities Act 

Fair Employment for Cancer Patients and Survivors 

About the Author Valerie Traynham

Return to page contents

15. Recovery and Young Children at Home

ASCT Recovery and Young Children at Home

While preparing for an autologous stem cell transplant (ASCT) can be quite overwhelming, considerations for a young family adds additional deliberations. Communicating with young children and preparing a “younger” household presents unique challenges, such as preparing children for an extended absence of a parent, establishing stringent hygiene habits to promote a clean environment, and bracing a child for further physical changes that their parent may experience following the procedure.

Sharing the myeloma journey in age appropriate ways can ease the stress on a child and household. Obviously, the needs of each individual child varies and most often a parent knows what works best for their child.

Preparing for the transplant

For inpatient transplants, telling a child “Mommy or Daddy will be gone for 14-30 days” is tough. Never mind sharing with them that their parent may not be able to play with them or participate in school activities for a while once they return.

Since most children enjoy being helpers, empowering them in age appropriate ways throughout the journey helps give them a sense of control in a situation where it’s difficult to find that feeling for everyone involved. Something simple, such as letting a child pick the way they wish to communicate while the parent is in the hospital, can make a big difference. Additional ways that a child can be included in preparations for their parent’s stem cell transplant include the following:

• Setting the expectation that mommy or daddy will lose their hair

• Establishing a communication plan or schedule

• Preparing the child for other physical changes the parent may experience, such as fatigue and weight loss

During the hospital stay

Along with the expected concerns around an ASCT, a transplant patient who is the parent of a young child also faces the stress of an extended hospital stay away from their family. Younger children, while resilient, may not understand why their mom or dad has to be hospitalized or why they are unable to visit.

Fortunately, with the technologies available today, there are so many ways to keep in contact with young children during the hospital stay and see them in real time. Some current ways to stay in touch over video chats include the following:

• Facetime for iPhone users

• Google Duo / Google Hangouts for Android phones

• Clubhouse is a fun app where multiple users can not only chat but play one of the many built-in games together

Some other ways to engage with young children during the ASCT hospital stay include the following:

• Sending cards and letters to each other is a nice way to keep in touch. Decorating cards and writing notes is not only a nice way to surprise a child, it is also a great way to pass the time for a patient if they feel up for it.

• Playing online video games together. There are a lot of online games available that allow for Co-Op play together, many of them are in app form and can be played through a smartphone.

• Create a fun calendar to count the days until mom or dad come home from the hospital During the first couple of days in the hospital, a patient may feel fine and perhaps even bored. Post Transplant Recovery

  Returning home following an ASCT can invoke anxiety for a patient with young children. Concerns around keeping safe with a compromised immune system while still caring for children may be challenging. Additionally, a parent may worry about their child’s reaction to physical changes such as hair and weight loss.

  Preparing children early in the journey may help alleviate some stress on them. Some ways in which parents can prepare their children may include establishing good hand washing habits, laying the groundwork for physical changes the parent may go through, and reinforcing the fact that while recovery may take time, it is not forever.

For parents with school-age children, there are a several ways to keep safe upon returning home, including the following:

• Teaching children to wash their hands every time they enter the home

• Having children change their clothes when they return home from school

• Keeping distance from children if they are showing any signs of illness

• Limiting visitors from outside the home

While it may be tough on a family if a parent is unable to participate in ways they did prior to the ASCT, most often this is temporary.

About the Author Nancy Colvin

Return to page contents

16. Communication with Family and Friends

Communication with family & friends

As you prepare for your transplant, keep in mind that there are many people around you that care about you and are interested in your treatment and recovery. It is important that you keep these people informed on your progress, but it is also important that communication doesn’t overwhelm you at a time when you need to be focused on your health and treatment.

In this section, we focus on ways patients can keep lines of communication open with their family and friends.

Set Expectations

Let people know of your condition, sharing as much as you are comfortable. Consider sharing that Multiple Myeloma is a serious blood cancer that requires intense therapies and your energy and focus are affected by both the disease and the treatment.

Tell people when and how they should contact you, or if they should wait for you to contact them. Also, let people know how often they can expect to hear from you and/or how often you wish for them to reach out to you.

Let people know how you prefer to communicate.

• Telephone

• Text

• Email

• Video calls

• Other messaging, such as, Facebook Messenger
• Blogs, such as CaringBridge

Determine what information you’ll send

While you are preparing for, undergoing, and recovering from your ASCT, you will have many activities including mobilization treatments, Catheter/Port placement, stem cell collection, admission, chemotherapy, and stem cell infusion. You’ll also have side effects , which will include loss of energy and concentration, so you may not be up to writing or talking much for a few days.

You may want to report all the details, or limit the information.

Decide if you will share photos while you’re in the hospital, clinic, or recovering at home.

Decide on a schedule to update people, or to receive calls

For a good portion of your time post-transplant, you will have very low energy. You should not try to write or talk too much during times that may be best spent resting or napping.

Consider having a caregiver, as the communications point of contact, to give updates.

Many find that a “one and done” approach with a central hub or blog, like CaringBridge.org, works well. With CaringBridge, you can easily access it from a PC, tablet, or smartphone. This makes it ideal for giving updates while you’re undergoing treatment or recovering. With this process you “push” an update, and everyone can see it and comment back to you if they want. You can review responses at your leisure. The positive comments from friends and family can be very uplifting.

A personal perspective

“While I was in the hospital, I made a point to write at least a line or two on my CaringBridge blog to let family and friends know my status. I received comments from family and coworkers that I could read at my leisure. But, what I did not expect was getting responses from several people that I had not been in contact with for more than 40 years. Their comments raised my spirits. I still update my blog after tests and doctors’ visits, and see that I still have many who “drop in” to see my progress. “

Prepare messages you know you’ll need ahead of time

Regardless of the way you choose to keep others informed, you should set up your process ahead of time so you aren’t rushing when you can least afford to rush.

If you are going to call, text or email people you’ll need to assemble your call or email lists. If you plan to use a blog, like CaringBridge, you should have an email or contact list so you can let people know where they can find your information on this site.

The exact date of your transplant procedures may not be known as there are many factors that affect the date, including space available at the clinic or hospital, as well as your condition. However, there are specific steps in the process that you may want to highlight, things that your family and friends will want to know and you can at least outline the message. You can then edit those with more details or photos when you send or post them. These may include:

• Pre-transplant clearance

• Mobilization

• Stem cell collection or harvest

• “The call” to report for the procedure

• High-dose chemotherapy

• Stem cell infusion

Things to consider when writing your messages:

• Share as much or as little as your comfort permits.

• Tell people what’s important to you. Let them know you appreciate their interest.

• Do not feel obligated to say something, if you have nothing to report, or if you are too tired (which will be a lot of the time after your transplant).

Some sample messages:

For “the call” (typically by email) for just before you go in for your ASCT

As most of you know, I’ve been dealing with a serious medical condition for the past few months. I’ve been successful so far in part to the great support I’ve received from many of you.

Today, I’ve received “the call” from my doctors to report to the hospital for the next stage of my treatment. I plan to unplug from work as completely as possible and expect to be unavailable for about 6 weeks. During my absence, [who to contact for work related issues].

This may come to some of you as a surprise, and I apologize for not telling you sooner. We may not have had the opportunity to talk in the intervening time.

So, in short, after a couple months of tests, I was diagnosed with Multiple Myeloma, and started chemo immediately. While myeloma is not curable (at the present time), it is considered to be treatable as a chronic condition. However, the next stage of my treatment is a stem cell transplant, which will happen this week! The recovery process is a bit involved with much follow-up, hence my absence.

Many of you have expressed your concern and requested updates. I have been told that I’ll be “knocked down” much of the next few weeks likely, and therefore will not be up to juggle a lot of email.

For those interested in updates, I’ve set up a blog on CaringBridge.org to keep family and friends informed. I hope to make an entry or two every day or so. I’ve set security on the site to require people to log in to the site (new account, Google, or Facebook) to find me.

Thanks for your support. I’ll be back in touch when I return.

For when you are being released from the hospital after your ASCT

To my family and friends:

I am recovering from a stem cell transplant. I can return home; however, my recovery from this procedure can take months. The following is a list of some of the ways you can help with my recovery.

My risk for infection continues

It will take up to 6 months for my immune system to recover. It's possible that it could take even longer, depending on what medications I will need or what complications I might experience. I am at a higher risk for infection and will need to pick activities that will minimize my risk of infection. Family and friends need to be up- to-date with their vaccinations.

Hand washing etiquette

Hand washing is the most effective way to prevent infection from spreading. I was taught to wash my hands frequently. My family, friends and visitors will be asked to do the same when in my company. Please don't be offended if I remind you to wash your hands.

Time to eat

I have to follow a special diet while my immune system recovers. If you wish to help by providing meals, I would be happy to give you a list of what I can and cannot eat.

Fatigue

I will have good days and bad days. I would like to see you; however, short visits will be better for me. Some days I might not be up to visitors, long conversations or involved activities. Exercise can help with fatigue so

please offer to walk with me.

Memory and concentration

The treatment and medications I take can affect my memory and ability to concentrate.

My caregiver

______________ had a lot of responsibility while we were in _______. Now that we are home, He/she will still have caregiver responsibilities along with all the usual home and work routines. If you would like to help, please see the list of suggestions below:

• Drive me to and from appointments.

• Run errands for my caregiver or visit with me so my caregiver can have a break.

• Take my children out for an activity.

• Help with household chores and/or yard work.

• Remember my caregiver with a phone call or offer to do something fun.

• Join me for a walk.

• Walk the dog.

  And please remember, all help and phone calls are appreciated as I move forward with my "post transplant" life. The support of family and friends is an integral part of this transition. Thank you so much for your support.

  Sincerely,

About the Author Don Bathurst

Return to page contents

17. Understanding and Managing the Costs of ASCT

Understanding and Preparing for Your Financial Responsibility of the ASCT

So, you’ve either decided to get an ASCT or are in the process of gathering pertinent information about the transplant to decide if you are ready for it. First and most important, make sure you have a Myeloma Specialist that will work with your Oncologist/Hematologist.

It’s imperative that you consider the financial repercussions of the treatment from preparation to maintenance because there can be so many steps in the process. Let's take a deep dive into what you need to do, who you need to contact, what information you will need, what questions to ask and to whom, and where to seek help. And, we will go over areas that many people forget to do or put off doing.

What you need to do

Ask your doctor what medications will be involved for every step, the stem cell harvesting, as well as the transplant itself. Determine where your transplant will be, and if it will be in or outpatient. You will need this information so that you can contact your medical/health healthcare insurance provider to make sure you will be covered. If you have an insurance plan that will take you out of the network, it is even more important because of the cost burden you may have. Get a list of the medications, as well as the treatment center and then contact your insurance company. Even if you think Medicare will pay for it, double check!! Get copies of all promises to pay for your records as well as the person you spoke with, date, and time of your call in the event you need to refer back to the conversation. This is so important that I will remind you again later.

Start with your doctor and other members of your healthcare team. These may include; the oncology nurse navigator, social worker, or patient navigator. Generally, they can help you work out the financial game plan.

What to do if you find your insurance denies ASCT coverage?

Appeal the decision. Get a letter of need from your doctor and if treatment is in a different city, specify that your current city or state does not have the resources to perform the treatment. IE facility, specialist, or support. Refer to the articles written in the HealthTree Newsletter. May 11, 2021, Filing an Internal Appeal Part, I, and Filing an External Insurance Review Appeal, Part II, May 28, 2021. At www.healthtree.org

Be very mindful of timeline requirements for the appeal. And, keep copies of everything!

How to pay for prescriptions associated with the ASCT and other miscellaneous costs.

Again, know your insurance. If you don’t anticipate the ASCT being done soon, you may have time to review your insurance program and make changes to gain better coverage. If you are going on Medicare soon or your insurance program is changing. Remember, “Timing is Everything."

Consider reviewing topics on Medicare, and Commercial Insurance or look for Financial Resources from pharmaceutical companies to non-profit organizations to private organizations.

Also, SIGN UP (scroll to the bottom of the page) to recieve articles in our Newsletter. Consider signing up for a coach to help you through all the aspects of Myeloma from initial diagnosis through to maintenance. They can help you navigate insurances including Medicare, income needs, medical bill management, SSDI, SSI, Disability FMLA, ACA, Financial Resource help and a lot more.

Cancer is difficult in and of itself, the costs of treatment is even more of a challenge.

On a personal note: My husband was diagnosed with MGUS and later Myeloma at stage 3. We did all "we thought" we were supposed to do. Calling our insurance, getting the SCT and the harvesting approved etc. Unbeknownst to us, his insurance carrier had dropped coverage at his ASCT treatment center which was not only out of state but also out of network. This change was after his stem cell harvesting and before his ASCT. We didn't know this until after his transplant. We had to file many appeals and pay thousands for much needed immediate drugs out of pocket. The associated stress was very difficult on my husband and his recovery.

This experience happens to too many patients. The fear of financial toxicity is real and we can help you avoid or minimize its effects on you and your family so that you can get back to focusing on yourself or your loved one and staying on treatment plan. A first line of defense is to talk to your doctor and healthcare team about the associated costs of your ongoing treatment and work with them to establish payment plans for your treatment. Even if you think you are alright, it's best to get a second opinion. Please don't wait until you are in a financial crisis.

If you find there are too many associated costs, direct and indirect, and it is affecting your ability to make a decision, reach out to a Myeloma financial coach who has experience in these matters. There are resources that can help. We have links to resources for medications, travel, lodging, co-pays, deductibles, premium pay, child-care, utilities, and so much more. My husband and I didn't realize these resources existed until years later and we had already paid tens of thousands of dollars out of pocket.

Visit the resources available on HealthTree, find and sign up for a coach, find a Myeloma specialist, find financial resources and become more financially literate. Educate yourself on myeloma and sign up for HealthTree, find articles, find education videos, all there for you.

Questions to ask your doctor:

• What medications am I on now and the foreseeable future and for how long? Review your costs.

• How often will I get labs, scans, additional tests? Review your costs.

• What additional treatments do you anticipate, i.e., ASCT, CAR T, additional chemo?

• Where will the treatment be and what is the associated cost for the harvesting, lodging, travel, childcare? Review your costs.

I repeat, contact your healthcare medical/health insurance company to find out what will be covered. Get documentation of what they agree to and keep track of the date, time and with whom you spoke.

Prepare a household budget. This is good advice for everyone, especially if you have cancer where your out-of-pocket expenses can be devastating to your personal finances. Preparation for an ASCT can be daunting, but the work you put in ahead of time will pay off in spades. Seek help when you are unsure or need direction. Take advantage of all that HealthTree has to offer, including its coaches.

Seek out legal help for Estate Planning, temporary medical and financial Powers of Attorney, (there are several types so make sure you have the best one for your needs), Living Wills or Advance Directives Etc. These are aspects of planning we tend to put off, but are very important.

About the Author

Diahanna Vallentine, BCPA Myeloma Financial Coach