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vishu
Multiple Myeloma Discussion • January 24, 2025
Deciding on Transplant vs. RVD-Only
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My mother was diagnosed with lambda light chain multiple myeloma in December. After 2 cycles of RVD treatment, her lambda/kappa light chains are within normal range. Doctor has started 3rd cycle and is recommending autologous stem cell transplant post that. I would like to understand from the community as to how they made a decision whether to proceed with the transplant or continue with RVD treatment only. My mother is quite apprehensive about implications of full chemotherapy as part of transplant, and of course it being a major process which will take longer time for recovery. Thanks!
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NKP64
Multiple Myeloma Discussion • January 23, 2025
Managing Pain and Fatigue on a Weekly Cycle?
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My father is under VPD and he has his back pain He takes his Bortezomib on Sundays with 20mg Dexa. Pain normalises for 3 days. But then picks up for the rest of the week. And during these days when he has pain, he feels very lethargic/fatigued. We do the weekly blood profiles on Sundays and all parameters are always normal. Could someone from his experience suggest, what might be the culprit for this fatigue- is it dexa effect, bone pain related as he does not feel like doing anything then.? Also, what solutions do you advice to manage the pain and this fatigue. He takes tramadol sometimes for this the pain. This has become a cycle now. Any quick remedy to fight this pain if it is unbearable. Many thanks
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Pheba1
Multiple Myeloma Discussion • January 23, 2025
Juggling Meds and Low BP – Anyone Else?
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Just feeling awful, and blaming it on MM and chemo. This week was week off of Revlimid, and still feeling awful. Slowly figuring out it is not the MM or chemo making me feel like a can of busted biscuits. BP in the a.m. is around 100/57. Eyes sticky all of the time. Problem getting out of bed in the morning. I am on a calcium channel blocker called Verapamil. From what I am studying it is the Verapamil making me feel lousy. What we have to juggle is amazing. The cancer, the side effects of meds, the loss of appetite. I see the kidney doctor next week. I am going to ask to be weaned off of Verapamil. The dose is already cut in half from two months ago. BP was my presenting issue with MM, as I have MGRS, the renal/kidney version of MM, plus MM. Since ASCT, no more cancer in kidneys driving BP high. BP has plummeted. I also learned that both Revlimid and Darzalex can carry low blood pressure as a side-effect. Has anyone else had issues with some of the meds, especially the BP meds? I have to take valacyclovir with the chemo, and they had to cut that dose in half because it is very hard on kidneys. This is all such a delicate dance we do, and I don't know about you folks, but some days I get real weary from medical stuff.
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NKP64
Multiple Myeloma Discussion • January 22, 2025
DEXA Scans for Bone Density: Experiences?
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While researching, learnt about DEXA scan. Is this something that should be done or can be discussed with the doctor to check bone density to calibrate bone strengthening doses? More insights and experiences with this will be super helpful.
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salmonWhale
Multiple Myeloma Discussion • January 22, 2025
Worsening Bone Pain During Remission?
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Are there myeloma patients here that experience a progression of bone disease even though you are in remission? I experienced compression fractures in my spine because of MM damage and in the first year of treatment for the cancer, those fractures healed pretty well. I've been in remission for most the past ten years. However, through the last several years, I notice that my spine hurts whenever I rise up from a lying position. Years ago, it was only a mild pain that lasted less than a minute, then went away without problems. But in the last several months, the pain has gotten much worse - around 7 - 8 on a 1 - 10 scale - and it lasts for many minutes. I've read that myeloma can cause permanent changes to bone chemistry that causes continued damage even without the presence of cancer cells, and I fear that's what I'm experiencing now. My doctors haven't explained much of this to me and I've decided to find out as much as I can about this and what the prognosis is. So I wonder how common this kind of bone pain is among MM patients and would appreciate any input from others. Thanks.
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Annborell
Multiple Myeloma Discussion • January 22, 2025
Experiencing Carpal Tunnel, Amyloidosis Link?
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I am 8 months post Car T/Carvykti, doing well. MRD negative, blood counts coming back very slowly. I have always struggled with some wrist issues, due to ulnar impact syndrome (ulnar bone in wrist too long and over time causes pain/damage from the impact- basically bones in my wrist are too long). In July , just a few months post Car T I started to have alot of wrist pain/weakness. I have been doctoring with an orthopedic as these aren’t new issues. The pain/numbness in my hands got so bad about a month ago I had an EMG which showed moderate carpal tunnel on my right hand and mild on my left hand. Very odd to basically develop carpal tunnel over such a short amount of time. Today when seeing my MM specialist he mentioned that there is a connection between Amyloidosis/MM and carpal tunnel. The carpal tunnel is basically a precursor to amyloidosis and he advised that if I have the carpal tunnel fixed to be sure they do a biopsy of the tissue to test for amyloidosis. I was very surprised by this connection and started to do some research but curious if anyone has had the experience to develop carpal tunnel and then eventually amyloidosis.
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Sasha
Multiple Myeloma Discussion • January 22, 2025
Newer Treatment Options After Relapse?
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My husband (65 years old) was diagnosed with multiple myeloma in 2016, had a bone marrow transplant in 2017, took the Revlimid (Lenalidomide) for a while, was in remission but in 2023 had to have more chemo treatments and another bone marrow transplant in January of 2024. Recently he started taking the Revlimid again. Does anyone have an information about a different or a new oral medication that may be better in treating multiple myeloma? Or any other treatments that you may have information about?
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CuriousGeorgina
Multiple Myeloma Discussion • January 21, 2025
How to Search Past Discussions?
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Is there a way to search discussions? When I use the "Search HealthTree" UI element at the top of the page, it only returns results for news articles. A way to search the discussion forums would be very useful and would probably reduce the amount of repeated questions.
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DonO
Multiple Myeloma Discussion • January 21, 2025
Vibration Therapy & Bone Strength: Experiences?
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Vibration therapy. Does anyone have results of using vibration therapy for helping with Multiple Myeloma? It shows to be able to help build bone strength and there is another encouraging study concerning Smoldering myeloma. I can not find any data on using it to strengthen bones or prevent tumors in a patient in remission.
Thumbnail for Building a Myeloma-Specific Score to Predict CAR-T Therapy Toxicities | Utkarsh Goel MD | #ASH24
Playlist: ASH 2024

Building a Myeloma-Specific Score to Predict CAR-T Therapy Toxicities | Utkarsh Goel MD | #ASH24

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Thumbnail for Minority Access & Outcomes with Anti-BCMA CAR T Therapy in Myeloma | Luca Paruzzo, MD | #ASH24
Playlist: ASH 2024

Minority Access & Outcomes with Anti-BCMA CAR T Therapy in Myeloma | Luca Paruzzo, MD | #ASH24

Video details & playlist