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TimJohnson
Multiple Myeloma Discussion • May 17, 2024
Velcade Neuropathy vs. Rev Rash Echo?
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Rev Rash after effects/masking Velcade neuropathy? Six weeks into induction I got walloped with Rev rash. That has thankfully abated but I'm left with some odd hyper-sensitive patches of skin that move daily. No rash. No visible irritation. Just patches here and there that a REALLY sensitive - like overstimulation. My doctor from UCSF says she has seen this previously and some of the anithistamine stuff seems to work. I keep seeing the neuropathy from Velcade described as tingling in the extremities. My expectation is that it starts at the ends of the fingers and toes and progresses from there. As I write this, I have patches on both forearms that are sensitive but nothing in the fingers or toes. I think it's just the echo of the Rev rash but can't quite suppress the dread about the neuropathy. Can someone who's gone through the Velcade neuropathy offer any insights on how it manifested, please?
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grayDolphin
Multiple Myeloma Discussion • May 16, 2024
Post-ASCT Questions: M-Spike and 'Chemo Brain'?
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Now nearly 5 mos post ASCT! Husband sailed through it for the most part. Anticipation and Fear were way worse than the process! As an outpatient at Mayo in Phoenix, the Stem Cell Therapy Unit was amazing! Hematologists declared he had a very good partial response. MRD positive. Light chains are normal but still with a small m- spike of .276, he is now on maintenance Rev Dex and Dara. Two questions for my kindred spirits here: 1. How worrisome is m-spike? 2. Do others notice confusion ( a lot over schedule/planning and calendar issues) , memory and problems with ability to focus? Though I have adult daughters, I feel I can’t discuss the latter reality with them without sounding cruel.
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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.