I had infusion of my Car T cell May 6th. I have lost my sense of taste and smell. Wondering if anyone has experienced this as a result of Car T or perhaps the lymph- depleting chemo that had prior to infusion caused it?

Is there a link to how to prepare your home when you get home from stem cell transplant. Also is there a link to the diet you are supposed to be on post transplant. I have information but I thought someone might have some other information to share. Thank u

I would like to know the success or not of using a cold cap for stem cell transplant.

I was wondering if anyone else is experiencing gum issues. I have had continuous problems with gum inflammation and infections since August 2021. Prior to this I always had outstanding dental appointments. My peridontist hesitates in doing any surgery that may help due to the fact I had Zometa for 2 years which I stopped in January 2018. He ran a CTX blood test which shows how well your bone turnover is. I was at 121 and a normal reading begins at 150. He is concerned with osteonecrosis. In my last visit, he says it is the myeloma causing the infections which doesn't make sense because I just had a CT/Pet in March 24 and it didn't show any bone involvement. Thank you in advance for your time.

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?

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)

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.