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CarolP
Multiple Myeloma Discussion • September 29, 2024
Managing Fatigue Post-ASCT: Tips?
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I did a autologous stem cell transplant, three weeks ago. I was discharged from hospital and I'm struggling with fatigue 😩. Can you kindly advise on what to use
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Flykaster
Multiple Myeloma Discussion • September 27, 2024
Thoughts on SCT Effectiveness and Timing?
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Open question to anyone, I have read that stem cell transplants are not as effective as once thought, and only for last resort treatment. Is this based on new research or just an opinion floating out there???
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Tete555
Multiple Myeloma Discussion • September 26, 2024
Worried About Increasing Kappa & Lambda with MGUS?
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Hi everyone, I am a 35 yr old F. In 2022 after doing routine bw, my family MD found M spike of 10 g/L (I am Canadian) with a kappa of 18 mg/L and lambda 52 mg/L. FLC ratio within normal range. My other bw were normal. I was told I had mgus and the plan was to do routine bw yearly. In 2023, my m spike increased to 11.9 g/L and kappa 24mg/L and lambda 66 mg/L. I have since been following a hema/onc doctor. Now in 2024, my numbers doubled! My lambda is 130mg/L and kappa is 55 mg/L. My FLC ratio has stayed within the normal range. We are still waiting for the M protein to come back. My other bw is normal. I am freaking out, I have been under a tonne of stress because of my increasing numbers but my hematologist says everything is fine. I know a bone marrow biopsy would be helpful but my anxiety is too high I could not handle the stress of undergoing that and waiting for results. Has anyone who has been told they have mgus have this happen to them before where both kappa and lambda numbers increase. I am terrified and now I have to wait, yet again for my m protein to come back and I pray it has not increased as well. But if my kappa and lambda double, I am nervous my m protein would as well. I also see a naturopath who recommended some supplements that have been discussed in the group. Thank you in advance!
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MLichtenstein63
Multiple Myeloma Discussion • September 26, 2024
Preparing for DVRd: What Side Effects to Expect?
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I am sure this has been discussed, but I can't find it... I am starting my treatment protocol in a month or so, consisting of the 4-drug regimine: Daratumumab, Bortezomib, Lenalidomide (Revlamid)and Dexamethasone (DVRd). What side effects can I expect?
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jamorsch
Multiple Myeloma Discussion • September 24, 2024
Sharing Experiences With Motixafortide?
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I am scheduled for stem cell collection at the end of October. My doctor has suggested using Motixafortide (instead of Mozobil) for mobilization. Does anyone have any experience with this drug? I understand there are some unpleasant side effects.
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TimJohnson
Multiple Myeloma Discussion • September 24, 2024
Weird Hair Question: Cowlick From Treatment?
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Somewhat embarrassing self-image question... I've been on DRVd induction therapy since the end of March of this year and a cow lick on the back of my head has reappeared. It's been gone since I was in 3rd or 4th grade but now it's back. I'm wondering if this is just a normal aging thing (now 66yo) or if it's weird side effect of the drugs. Anyone else experienced anything like this?
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Iliana • Admin
Multiple Myeloma Discussion • September 24, 2024
New Clinical Trial for Relapsed Myeloma
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A phase III study is open comparing a new drug called mezigdomide (CC-92480), carfilzomib and dexamethasone vs. carfilzomib and dexamethasone. Mezigdomide is part of a new class of drugs called CELMoDs. Study participants who have relapsed or refractory myeloma, at least one prior line of therapy (that included either lenalidomide or 2 cycles of an anti-CD28 monoclonal antibody) are welcome to join. Learn more: https://www.bmsclinicaltrials.com/us/en/clinical-trials/NCT05552976?cid=s_2839275
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Julia
Multiple Myeloma Discussion • September 24, 2024
New Allergies From Donor Cells?
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Good morning. I have a patient that I'm chatting with. She had a donor stem cell transplant. She now feels as if she has developed allergies and wonders if it is possible to have gotten them from her donor cells? Has anyone heard if this is possible?
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shaila02784@yahoo.com
Multiple Myeloma Discussion • September 24, 2024
Humerus Rod Surgery: What to Expect?
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Hi, due to my myeloma tumor progression in my right upper arm/humerus and how the tumor affected the bone, the orthopedic surgeon recommending to go through surgery which is putting a rod inside. Has anyone went through this kind of surgery? Would love to hear any pros and cons the individual has experienced. Thank you!
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Iliana • Admin
Multiple Myeloma Discussion • September 23, 2024
Learn About a New CAR T Trial for Myeloma
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CAR T therapy is a growing option for multiple myeloma patients and investigational CAR T treatments and targets are now in development. Investigational treatments using different targets could help patients who have relapsed after standard of care myeloma therapies including the newest BCMA-targeting immunotherapies.   The QUINTESSENTIAL Phase II clinical trial aims to test the impact of an investigational CAR T therapy called BMS-986393, which targets GPRC5D, in relapsed or refractory multiple myeloma patients.  This multi-center study is open in over 35 locations. Please click the link to learn more or to join the study: https://www.bmsclinicaltrials.com/us/en/clinical-trials/NCT06297226?cid=s_2839282 Funded by Bristol Myers Squibb
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Iliana • Admin
Multiple Myeloma Discussion • September 23, 2024
A New Study Exploring CAR T After Transplant
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A research study is being performed with the goal of improving outcomes for newly diagnosed multiple myeloma patients whose myeloma hasn’t responded optimally to traditional induction and stem cell transplant therapy.  Lenalidomide is traditionally used as a maintenance therapy to deepen responses after transplant, but this study aims to test whether adding CAR T therapy can further improve responses and outcomes.  Learn more about this study at: https://www.bmsclinicaltrials.com/us/en/clinical-trials/NCT06045806?cid=s_2839286 Funded by Bristol Myers Squibb.
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Lindsay
Multiple Myeloma Discussion • September 23, 2024
Advice & Hopeful Stories for IgA Kappa?
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Hello, does anyone have any advice/suggestions on IGAKAPPA myeloma with it being 70%. ? If there any hopeful stories as well as holistic stories I would greatly appreciate to hear them. Thank you
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BarbaraH
Multiple Myeloma Discussion • September 23, 2024
D-VRd With Only One Kidney: Experiences?
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Hello! I’m pretty newly diagnosed High-Risk SMM with the complication of only having one kidney. They’re discussing starting me on D-VRd & I’m just wondering if anyone else here has kidney issues & is on this regime & how it’s working out for them? They did mention modifying the dose of one of the meds in the Quad in order to lessen the burden on the kidney. Any info anyone has would be great ~ thanks!