Hello everyone! This is my first post on this platform. As a 66 year old MM survivor who was diagnosed in 2013 and who is gratefully thriving today, I just want to say a word about exercise and encourage you to stay physically active. I realize that some of us have had severe bone/skeletal issues and are limited as far as physical activity - but if your skeletal frame is stable enough for normal, daily activity, I want to recommend weight-bearing and strength training exercise. When diagnosed, 80% of my bone marrow was displaced by malignant plasma cells, my kidneys were severely damaged, and I had scattered lyric lesions throughout my skeletal frame. With treatment, bone deterioration stopped and things stabilized. As soon as I regained some energy I began to diligently strength train, first at home with body weight exercises, and then at a gym with weights. What benefits have I seen as a result? - Resistance training builds bone mass. My bones are stronger now. - Increased muscle mass. Muscles serve to stabilize the skeletal frame and protect bones and joints - all the more important as we age. - Increased muscle mass boosts metabolism and results in more energy. Fatigue is a frequent complaint of MM patients and exercise improves energy levels. - Resistance training boosts the immune system. - Resistance training is one of the best ways to manage weight. Excess weight puts strain on the body in a variety of ways - joints, cardiovascular system, and respiratory system. Resistance training burns more calories over a longer period of time than simply walking or running. I travel internationally for work, to some very difficult places (going to Sudan next week), and regular exercise has been a key to maintaining my health and stamina, even while doing monthly maintenance chemo to keep the myeloma in check. I encourage you to get active, stay active, and build strength! I’m happy to respond to questions about this post. Wishing everyone the best!

I will be posting in the Financial Connect site up to date information about current status around the New Administrations possible changes to a number of issues, such as Medicare, Medicaid, ACA, SSDI, etc.

Be aware there will be some changes coming to Social Security. Many employees with the social security administration are being laid off from an already short staff. The average wait times for application processing was 255 days and will now be pushed out much further. There is a 1.2 million app backlog. If you need to put in an application, my suggestion would be to consider hiring a Disability attorney to make sure your application is complete the first time to reduce even further delays. Also, if you are not working du to a disability, contact cms.org - Center for Medicare, and see if you can get started on Medicaid and SSI, Social Security Supplemental Income. Doing it sooner than later may be a better option.

While many of you post with your experiences or seek advise about your situation, i feel its quite difficult for the people to correlate your situation clearly. To give a better knowledge of your situation, I feel, you could add your age, gender, etc. and some disease Diagnostic history to your profile under About Me section. That way, people can have more clarity on your demographics and disease state to give better advice or support. Do you all agree? Or am I expecting something too much?

Hello, I was diagnosed with MM about 4 years ago with translocation 4;14. I recently relapsed after 6 months post Carvykti Car-T where they found 17p deletion as well as 1q gain. I am quite concerned about all these high risk cytogenics and was wondering if there was anyone out there with similar profiles and what your treatment/myeloma journey has been like. Thank you!

I just finished all my 90 day post transplant testing. I see the doctor next week, but have access online to some of my results already. Anyone have an echocardiogram that shows pleural effusion? I compared it to my pre transplant echo 4 months ago and there was no mention of it. I had an autologous transplant with Melphalan given two days prior to it. Just wondering if it’s cause for concern. No trouble breathing or shortness of breath. Thanks

As part of Myeloma Awareness Month, HealthTree is announcing Myeloma Mondays, where we will share new technologies designed to help patients and advance a cure each Monday. This week, we launched our new Clinical Trial Finder, which uses AI to match clinical trials to your medical records. We've already heard from patients who are discovering treatment options they didn't know existed. 📺 Watch the full video here and learn how to use this new tool: https://www.youtube.com/live/vhbk1KnyQKk

Severe pain in clavicle area. I had a lesion in that area on the last PET scan. I am preparing for a CAR-T transplant at the end of the month. Has anyone had this type of pain ? What can a person do to control this pain ?

My husband was diagnosed with MM 3 months ago and is responding well with treatment. He is trying to decide whether to get stem cell therapy. Any advise or thoughts ?

Hi my name is Anne I am a Welsh Canadian and 58 years old. I was diagnosed with MM March 11 2022. I have Lambda type MM with 1 qg. I was put on CYborD (Cyclophosphamide, Bortezomib, Dexamethasone) after 2 weeks I ended up in Hospital with fevers and swollen glands due to the high doses of Dex. My Dex was reduced to only one day a week instead of 4 days. Because of this I began to experience severe pain in my back and legs and started having trouble breathing. Long story short my Diaphragm was half way up my lung. The Velcade (Bortezomib) had damaged the nerve connecting to my diaphragm. Dexametasone was the only thing that helped with the pain, but my Dr refused to increase my Dose again? She doesn’t like Dex and refused to believe it caused my Diaphram issues? Even though with CT scanning my diaphragm was fine when I was diagnosed. I had a Stem Cell Transplant Oct 2022, it has taken me almost 2 years to recover my strength from this. I have nerve pain in my lower body, dry eyes, dry mouth and stomach issues, which is my new normal. I am currently on revlimid 2.5mg daily, I was unable to tolerate 5mg and ended up in hospital. My numbers are slowly beginning to climb, not enough to be alarmed, but enough to know things are beginning to change. In the mean time I have traveled to Mexico, Costa Rica and heading on an African Safari while I still can. I’m anxious about my options for my next round of treatments as I seem to have a lot of nerve damage issues. I am from Canada, so my options aren’t as great as the US.

Hello everyone, I am currently on Revlimid, Velcade and Darzalex for light chain multiple myeloma. I am experiencing stye/chalazion for past 3 plus weeks. I started with few stye on my left eye then it tuned into chalazion. I took tobramycin and dexamethasone eye drops for almost 7 days. My left upper eyelid is still pretty swollen. Now my doctor recommended to take doxycycline oral tablet for 7 days. I have been doing warm compress also but it seems like nothing is helping. My question is did anyone experience stye/chalazion while on this treatment? How long did it last and how did you get rid off? What treatment help you for stye/chalazion?

As neutropenic diet is prescribed for MM patients. Which fruits can I consume and how? Which fruits should I avoid? Been a challenge figuring out. Many thanks

I was diagnosed in May 2023. Did velcade/Dex/Revlimid.... Have been in"remission" since 2/2/24. The disease destroyed 30% of my kidneys to where I'm at CKD 4. This Revlimid makes my scalp break out with bumps/blisters and my legs swell. I was told I can't take vitamins because of my kidneys. This Revlimid although the best they have seems like poison to me. I'm worried it will ruin my feet due to the neuropathy. Also I've had temporary blindness in my left eye... Not for long... But it's worrisome. Thank God I don't have bone lesions. Plus I get heart burn as I had esophagus problems before anyway. These things didn't stop me from living but I want to be symptom free as much as possible.

Do we have data or a diagram that shows percentage age-wise distribution of people who were diagnosed with SMM or MM?

Hello all. Diagnosed in December of 2023. Had Car T carvykti in July of 2024. Still trying to navigate this disease.

Healthwell foundation has grants available for Cancer Home Care Services via phone application only as well as grants for AML, CLL, MCL, MM -Medicare Access, Oncology Caregiver Behavioral Health Fund go to: healthwellfoundation.org. Support Near Me is a website provided by an organization called Aunt Bertha, a Public Benefit oCorp (also doing business as find help and findhelp.org, that provides a searchable list of local services that you may find helpful in addressing your needs. Access to Support Near Me is licensed by Merck solely as a convenience for patients and caregivers. CancerCare at copay.org has grants available for: ALL, AML, Cancer Genetic Genomic Testing, Social Needs Assessment & Intervention Fund, Myelodysplastic Syndromes.