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Isaac
Multiple Myeloma Discussion • May 22, 2024
Venetoclax Experiences & Side Effects?
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Hello, I was diagnosed in September 2023 at age 37. Luckily my disease was caught a little early before my bone lesions metastasized, so I haven't broken any bones. However I did lose vision in my right eye due to blood vessels bursting from hyper viscosity (thick blood). For treatment, I have been on the four drug (dex, Dara, Velcade, revlimid) regiment for 7 cycles. At first my disease responded well and reduced my M-spike from 6.0 to now 0.26. however for the past two cycles, my disease has stopped responding (M-spike is stagnant and fluctuates up and down around 0.24 to 0.26). As a result, my doctor is switching me to a new drug called venetoclax (it is not FDA approved for Myeloma yet, but it is promising for patients with translocation 11;14, which I have). Has anyone used this drug for Myeloma before, and what side effects effects did you experience?
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kmburke60016
Multiple Myeloma Discussion • May 20, 2024
Help Understanding My Genetic Test Results?
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Hello all. I was diagnosed on March 20, 2024, and on April 24 underwent a spine surgery to stabilize the area around my T1 vertebra (or, where it used to be... the myeloma turned it into a puddle). I start chemotherapy on Wednesday. I have high risk, and just learned about my chromosomal abnormalities. Where can I learn more about what these names and numbers mean? +15 (CEP15):Trisomy of chromosome 15 (58/100) 1q21 (CKS1B): Gain of CKS1B locus (45/91) 14q32 (IGH): Positive for IGH translocation (92/100) t(11;14)(q13;q32)(IGH/CCND1): Positive (81/100)
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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.