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?

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.

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.

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?

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.

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

Great presentation from Dr. Angela Dispenzieri. See attached from Kyle Mayo Symposium. https://www.facebook.com/groups/amyloidosissupport/permalink/10160433537645279

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?

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 🙏🏼

Looking to see if anyone else has had similar contradictory SPEP and MASS-FIX findings. I am in the high risk MGUS category since having a rib plasmacytoma in September 2022. My M spike on SPEP was holding steady at about 1.6. I had my every 3-4 month blood work on April 25th that showed my M spike on SPEP rising to 2. A repeat M spike was done a week later in the myeloma specialist's office and came back 1.9. At the same time, my blood work was sent to the Mayo Clinic where a MASS-FIX found the M spike to be 1.3. Has anyone else encountered this? Does this mean that there is another protein source being picked up by the SPEP? I am waiting for my myeloma specialist to get back to me.