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Dallman5002
Multiple Myeloma Discussion • May 15, 2024
First M-Spike Appearing After Transplant?
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Was wondering if anyone had any thoughts on this? Was diagnosed in August of 2023 with Kappa Light Chain Myeloma. At diagnosis, my Light Chains were 643. I had no M-Spike. I did induction (CyborD) until November. I stopped induction 1 month short due to Neuropathy from Velcade. Had an ASCT in February of this year at MD Anderson. Doctor said it was a VGPR. In all my lab work since diagnosis through ASCT, I’ve never had an M-Spike. Had labs done last week and had an M-Spike of 0.2. My Light Chains were normal, at the high end of normal. My Kappa/Lambda ratio was normal. Was wondering if this is normal to have an M-Spike this soon after a SCT? I have moderate kidney damage due to the Light Chains. Just thought it was funny that I have an M-Spike now with other labs all in the normal range.
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jadeHedgehog
Multiple Myeloma Discussion • May 15, 2024
Interpreting My First MRD Results?
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I recently received the results from my first ever MRD test after 3 years of treatment for multiple myeloma. I was diagnosed in April 2021, went through 5-6 cycles of initial treatment with VrD, and had a stem cell transplant in November 2021. After the SCT, I started out on Velcade as my maintenance treatment but switched to Ninlaro after having some side effects on the Velcade. I haven't taken Revlimid for maintenance treatment as yet. I have had three bone marrow biopsies, without the MRD test, prior to this. The MRD test I had was through Adaptive Biotechnologies using clonoSEQ. Since this was my first MRD test, the new bone marrow sample was compared to the sample taken when I was originally diagnosed, so I have a limited track record. The report does not state whether I am positive or negative for measurable residual disease. It just states that there were "residual sequences detected" and gives an estimated MRD value of "80 residual clonal cells per million nucleated cells." Does anyone else have experience with interpreting MRD test results and can you tell me if the report generally states whether they are positive or negative? Also, is 80 clonal cells per million nucleated cells a large or small number?
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rcuchel
Multiple Myeloma Discussion • May 15, 2024
Considering Stopping Revlimid Maintenance?
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I am thinking about going off Revlimid maintenance after taking 10 mg every other day for the past 4 1/2 years. I was diagnosed with stage one multiple myeloma in June 2019. I did six cycles of RVD and was MRD negative at the end of those cycles. I decided not to have a stem cell transplant, although I did collect my stem cells. I am 75 years old, and although the side effects of the Revlimid aren’t horrible, my biggest complaint being the fatigue, I’d like to stop all together. I’m just wondering if anybody has had similar experiences. I’m just wondering how much longer I can take it. I see my myeloma specialist at Sloan Kettering every three months and my blood work has been perfect. Any insight would be helpful. Rick.
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aramisv
Multiple Myeloma Discussion • May 12, 2024
Great Results Early: Continue Treatment?
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Hi, My lambda free light chains test went from 15 mg/dl to 1 mg/dl (Normal) after the first month of treatment with 10 mg of Revlimid, 40mg of Dexamethasome, Valcade and Darzalex. I still have 3 more month to go on the treatment and I wonder whether I should continue with it unchanged given that all my blood tests except for red blood counts are now good. History: Stage 1 Fish Standard MM March 2024 diagnosis
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Ktimb
Multiple Myeloma Discussion • May 9, 2024
Managing Talquetamab & Dara Side Effects
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Looking for any advice, insights or help. My husband has been on Talquetamab and Dara since February. He had stem cell, car-t and many in between. Cancer has come back 4 times. Blood numbers look good but it has come at such a great cost. He tries to eat but struggles with the saliva and no taste. He is continuing to lose weight. He gets Dara each week and Talquetamab every other week. This has been the hardest treatment so far. He shakes with chills after he gets treatment. Usually happens on the second day and I just feel so helpless. His stomach is sore and red. He doesn’t have a port. Not sure if you can get these through a port. Does anyone who gets these two treatments have a port? I wish there was someone on this thread that has gone through this and he can connect with, just so he knows he is not alone. We stay try to positive. I don’t know when they will pull back on dosing but I just don’t know what to do to help him. I will take any and all advice. He is continuing to fight so hard. He’s 59. I love him so much. Also if there is a caregiver of a spouse going through these same things, it would help me too to talk to them. Has anyone’s taste come back when they pulled back on Talquetamab?
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Kneyed
Multiple Myeloma Discussion • May 9, 2024
Pausing Treatment After Induction? Experiences?
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Diagnosed the beginning of last year I just completed 3 months of induction DRV + Dar and will start the 4th in 10 days. Good numbers getting blood work back in normal range and my IgmM is heading down below 2000. No bone lesion problems gratefully. The worst side effects are from the Dex ( takes longer and longer to clear out and it’s affecting my eyesight ) and the Velcade site rashes. Dr is talking SCT but I’m not convinced … even CART seems too invasive at this point. I’m asking to take a month off after this next round and travel a bit to enjoy life. My question is has anyone experienced taking a break after 4 months to evaluate progress and see if there is progression after the initial Pharma? Thanks for caring and sharing best of health to everyone 🙏🏼