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.

Has anyone considered HRT with transdermal estrogen and micronized progesterone after ASCT? Wondering if feedback from your myeloma doc is supportive or not? Mine wants me to take a blood thinner with the HRT due to combined blood clot risk with Revlimid (10mg maintenance). Modern HRT doesn’t have the blood clot risk it used to, so I’m concerned she’s being overly conservative based on old data. I don’t want to take any more meds than really necessary.

Hi All I was just diagnosed with SMM a month ago. I live under a mile from a farm that uses pesticides weekly - they spray, I called and asked they said they do it late at night or early in the morning. I don't know what to do short of selling my house. Outside of closing my windows on the dates they spray any advice? Anyone in a similar circumstance?

Hello all! Was diagnosed with IgA Lambda MM in July 2023 and underwent eight cycles of VRD. Am now in remission. Unfortunately developed peripheral neuropathy in my toes, likely from the Velcade/bortezomib, and have been taking gabapentin, but to no avail. Any suggestions?

Newly diagnosed low risk SMM. Getting looked after at Dana Farber in Boston. I’m truly devastated and shocked by the diagnosis. I feel like I can’t plan for the future and have sunk into a depression. I have an 11 year old that I fear I won’t be able to be there for. Watching and waiting approach feels like absolute mental anguish. Should I try to find a clinical trial? My family thinks since it’s low risk I’m “crazy” for not being able to mentally move on. I don’t know really what to do next.

I am on Acyclovir and have been since my transplant. Is it others experience to be on it indefinitely? Also, has anyone gotten the shingles vaccine? I was under the impression Acyclovir was a preventative for shingles.