BETA - In addition to your myeloma specialist what other healthcare professionals should you consider adding to your healthcare team?

In addition to your myeloma specialist, what other health care professionals should you consider adding to your health care team?

So besides the myeloma specialists, I think it's important one to have your, certainly your local oncologist and even your general practitioner on your medical team. You may well have other specialists on your team as well. For example, a nephrologist, who specializes in kidneys. A cardiologist who specializes in heart and pulmonary issues. Pain management doctor. Because you may go through some pain that they can help you with. A neurologist, who specializes in nerve issues and more. They can all play a role in your overall health and quality of life.

With many specialists on your team. It can be difficult to understand each person's role. Not all specialists are at every hospital or treatment facility, and additionally, they may go by different names, share names, and or responsibilities. Therefore, it is very important to identify the specialists you'll be working with, as well as their job titles and responsibilities. Diagnosis and treating myeloma is often very complex.

Patients may often require the help of several different medical professionals. First, is your oncologist. The oncologist is a doctor who specializes in diagnosing and treating cancer. When treating myeloma, it is advantageous to align yourself if possible, with an oncologist who specializes in myeloma. Being a specialist means they exclusively treat myeloma patients. Your oncologist oversees your care from diagnosis throughout the course of the disease.

They will become your primary doctor. The oncology nurse may also be known as the oncology nurse navigator. Oncology nurse navigators serve in many roles depending on their experience. Advanced education and specialized certification. This person will likely be by your side majority of the time that you're on site at the hospital or treatment center. They will offer education and resources to facilitate informed decision making and access to quality, health and psychosocial care throughout all phases of the cancer continuum.

The responsibilities of the oncology nurse may include giving physical examinations, administering chemotherapy, and other medication, identifying patient needs, coordinate with other members of the team, educating and counseling patients and families, and performing research as part of a clinical trial. There's also the oncology nurse practitioner, or NP. NPs usually meet with patients independently while collaborating with the rest of the oncology team.

They are always under the supervision of an oncologist. The responsibilities of the NP may include performing physical examinations and patient evaluation, diagnosing and treating certain conditions, recommend and diagnostic and laboratory tests, and reading the results. Describing medications and giving chemotherapy, helping patients manage cancer and treatment side effects. Educating and counseling people about cancer and their medications. Performing certain procedures, and performing research as part of a clinical trial.

Palliative care doctors and nurses. The palliative care teams work closely with other oncology team members to prevent and to treat the symptoms and side effects of cancer and its treatment. A palliative care doctor is especially helpful when a person is still experiencing pain and other symptoms, despite treatments for these symptoms. The Physician assistant, or PA. A PA works with a doctor delivering a broad range of services.

The responsibilities other PA may include performing physical examinations, recommending diagnostic, and laboratory tests and reading results. Helping with surgery, managing cancer and treatment side effects, prescribing medications, and administering chemotherapy. Educating and counseling people about cancer and performing certain procedures. Oncology social workers are usually assigned to you upon entering a hospital or a treatment plan. These specialized clinicians can help you cope with every part of your cancer journey, from understanding the diagnosis and treatment plan to navigating financial, social and emotional issues, to assisting patients transition back to work and regular activities during or after treatment.

You can also ask your social worker to connect to you with available resources, to help with financial challenges and help you navigate the unique resources available to your hospital or treatment center. Oncology Resource Specialist Not all facilities have these professionals, but it never hurts to ask. The oncology resource specialist can answer questions regarding the transportation options for patients, as well as local lodging for patients and their families during treatment.

They will also help navigate other resources we will discuss, including government and organizational support. The Registered Dietitian, or RD. And RD provides education on eating well and provides recommendations to help people with cancer cope with dietary needs. You may find during your treatment that your appetite has changed. These are great resources to rely on during that time. The pathologist, a pathologist, is a medical doctor who specializes in looking at cells, tissues, and organs to diagnose disease.

You may never meet your pathologist, but he or she plays an important role in determining the type and stage of cancer. The responsibilities of the pathologist include determining the results of tests done on tissue samples, providing the final diagnosis of cancer, and working closely with the treating doctors. A diagnostic radiologist A radiologist is a medical doctor specialized in using imaging tests such as X-rays and MRI, is to help diagnose disease.

The responsibilities include reviewing and interpreting the results of imaging test patient financial navigator may also be known as a financial patient advocate or patient navigator. There may or may not be one of these professionals available at your facility. Don't hesitate to ask. If they are not available., there are outside cancer organizations or private organizations available, such as the American Cancer Society, Patient Advocate Foundation, and Critical Care Financial Consultants.

It's important to remember that navigators are unbiased and help you work to find the best health plan for your needs. This individual helps guide patients from diagnosis through survivorship. Their responsibilities may include assisting a person in finding counseling and assisting in finding financial resources and other supportive services. A rehabilitation therapist such as a physical, occupational, speech, or recreational therapist.

These professionals help people with cancer return to their highest level of functioning. Patient billing or hospital financial services. Please remember that the hospital won't refuse to treat you if you don't pay your bill right away. However, your account should be in good standing. A payment plan can have many benefits, including discounts on the total amounts you owe. Many hospitals have billing departments that will meet with you and set up a plan that works well for your individual circumstances.

Some even offer meetings with a financial counselor who will work closely with you on your insurance, costs obligations, and identifying the right resources for you. The chaplain or other religious support. A chaplain offers spiritual support and rituals for people with cancer and their families. These professionals may also lead support groups. Most hospitals have clergy on staff that will work with people of all faiths.

Some people may prefer to work with their own clergy person. Again, it is a very good idea to find out who your team is. Please keep a list of their names and phone numbers with you in the event you have questions.

You need the best players in all your position. Right in the middle is you. You need a myeloma specialist right beside you. Inurance provider. You need good chemotherapy. Nurses. You have to have a good local oncologist hematologist or I'd say a good family physician. My goodness, we know what the heck we're doing. But you need somebody who can coordinate your care.

And they all have to work with this person right here in the myeloma specialist. And as Greg said, remember and love your caregivers.

Every every patient should have a good family practice physician. I'm a little biased, I guess, because for 25 years I was a practicing family physician. But I can tell you that an educated family practice physician can put all of these things together. They can keep track of some of your myeloma treatments. They can definitely keep track of all the other medical concerns in your life, such as your high blood pressure, checking you for diabetes, all of the many things that a family practice doctor can do.

It's also important to have a good oncology nurse that you can trust, and that oncology nurse can even help you with things like payment plans, which different companies have for their myeloma drugs. A good specialist myeloma nurse will know these various treatment plans. They'll know the phone numbers to call. They'll know who to contact. So you should get a nurse that you can trust and rely on as well.

In addition to myeloma specialists, there are often depending on the situation orthopedist involved, there may be radiation oncologist involved. Physical therapists, there are a variety of specialists that may be involved, depending on a particular situation. If a patient has significant bone disease, we may need an orthopedist to assist, either surgically or it's assessing. Sometimes patients present in their first presentation is actually with a fracture.

And we need to address those situations. So, all of those members can be part of the team for a given patient. So integral also to your team and when you're newly diagnosed is not just the team at your site, but actually all of the wonderful resources of the patient advocacy groups, and the the education resources that are available both through through HealthTree, but through the other myeloma foundations that are out there as well, too, because it is really critical, I believe, for patients to get good quality information to help because I believe that knowledge helps deal with some of the anxiety and the fear that comes with a new diagnosis.

Well, you know, for example, if you have a, if we're having a stem cell transplant, it's good that you go to a location that has a significant, transplant. You know, a transplant, a history, for example, UMS had done, I think, 10,000 when I went there. And, and in addition, there's, like six new drugs that have been passed, I think, in the last four years.

And as a result, you know, this is pretty amazing, but it also provides a lot of complexity that wasn't there, before, you know, myeloma is an orphan disease. And as an orphan disease, there's just not a lot of money spent on that disease. For example, I'll give you a, like me. So psyllium, which is a very high profile.

They got billions in the settlement. But up until recently, over the last 13 years, they had no drugs approved for me. So for glioma, they just recently had a drug, approved for the treatment. And here we've had six drugs in four years, and they've had 1 in 13 years. Another one, which is probably as important or bigger than myeloma is, triple negative breast cancer.

Breast cancer, affects some I think 200,000 Americans each year. 20% of those patients have triple negative breast cancer. There's been a number of drugs for those that aren't triple negative, but triple negative is a very a significant, proportion or probably like 38,000 or so patients, which is more than myeloma. And they have just recently had one drug in testing that looks like it might be a possible winner.

So, and that's, that's the first lot. So we've had some great, some great success. But the change is so fast that even myeloma professionals are hard. You know, hard, to, to, to find and to keep up with all that's going on. So, you know, what you need to do is you need to make sure you have one in your corner, either as a consult for your local oncologist with a treatment plan for your local mycologist, or, better yet, one who's providing you with a cure.

That's one thing for sure. Myeloma specialists save lives. Also. The next one and I talked about it briefly, is all the patients on Medicare, 65% of the myeloma patients are on Medicare. Our government, for whatever the reason, decided that, they had they wanted to prevent people from, not using, drugs that were generic. And they thought if in fact, they allowed or, didn't allow non generic drugs to have, copay assistance from drug companies that they could in fact, prevent that from, from happening and that more people would take generics.

Well I'm sure they've done that. But what they didn't understand or were too stupid to understand and I'm sorry I use that word because I, I can't think of another one that's more appropriate that they had chosen to prevent it from happening, even with, single source, drugs that are under, or under patent. And that means the vast majority of myeloma drugs are under patent.

So those will not be covered and you can't get assistance. And what patient can, effectively, spend 20 to $40,000 on the drugs with co-pay plus, $5,000 for A, B, D and F? So, I think it's important that, people know that there are places available. Drug companies do give it to third parties like LLS

PANF which is, patient assistance network path, which is patient assistance assistance Foundation assistance fund, cancer care good days and health. Well, good days seems like a pretty sad, name for a cancer company or a fund. But in any event, so all of those, are available. And the unfortunate thing is that they're all always under source that they never have enough money.

And here in August already, they run out of money twice, and now there is exactly zero of them available. So what you need to do is to find a, I think they get, their funds usually in January or February. So you need to get in to those funds on January and February and get into more than one fund, because they'll give you about 10,000 to $15,000 each fund.

So, you know, at a minimum, you're going to pay 20,000. So, you need to get into fund it in it early and to make sure that you at least have that kind of coverage, because most people who are retired, Social Security and Medicare, I think the average income is like, $43,000. So how many times does 20 to 40 go into that and you got to pay your rent and all the other things associated?

So I think that's important that, that you get on board with the 65% of patients. Because the thing I really don't understand is why these drug companies and I say stupid, I, I shouldn't or maybe it's ignorant if they just knew. Right. What they're doing is they're putting the vast majority of their income streams at risk, meaning that, you know, if you can't take your drugs, there's a high probability you're not going to make it.

So I just it just it slays me. It's beyond my understanding. But, it is what it is. So hopefully, the government will one day see at least that they should approve the drugs that are, are single source and or, are under patent that, that they can, be available to myeloma patients and that they, can be reimbursed by the drug companies so that this does not have to happen in the future.