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.

Hello. As of 2024-05-07 I haven't yet been formally diagnosed - still undergoing a battery of tests. It looks to me that it'll be either IgA kappa smoldering MM or active MM. I have no symptoms yet. Suspicion of a plasma cell dyscrasia was triggered by blood test results for an unrelated issue I was having. - My m-spike on 2024-02-13 was 1.29 in the beta region of the SPEP test and rose to 1.39 on 2024-04-09. Gamma region is low. - My FLC ratio is aggressively moving upwards. It was 45 on 2024-02-13, jumped to 72 on 2024-04-02 and then jumped again to 89 a week later. If this trajectory continued as expected, I'm past the dreaded 100 level for MM. - My IgA level is around 2200 mg/dL as of 2024-04-09. - Bone marrow biopsy done on 2024-04-02 showed neoplastic plasma cells that represent 15%-20% bone marrow cellularity. - Urine immunotyping done on 2024-04-09 shows two free kappa paraprotein peaks. - Urine protein electrophoresis done on 2024-04-09 shows two m-spikes: #1 is 4.8% and #2 is 3.1%. Interpretation on the report is, "Two peaks in the beta region consistent with paraprotein peaks". - Bone density test done on 2024-04-12 showed osteoporosis in lumbar region. I start receiving Xgeva shots 2024-05-08. - PET-CT scan done on 2024-04-17 showed no lesions and no sign of malignancy. - As of 2024-05-07, still waiting on the FISH / cytogenetic analysis report(s). Calcium level is normal. No sign of renal insufficiency. No anemia. No bone lesions. While not yet committing to a diagnosis, my hema-onco said treatment in my future is likely. He wants to do some more blood work to establish a definite trend in the numbers and to see if I reached that myeloma defining event of FLC ratio >= 100. When the time comes for treatment, he recommended an outstanding myeloma specialist at Mount Sinai. I'm confident that I'm in good hands.

I’m day 20 following 2nd ASCT, home but absolutely exhausted. I’ve never felt so tired. Does this pass? Thanks.

Hi there, as a newly diagnosed myeloma patient in the Netherlands I personally prefer the option of delayed transplant instead of upfront transplant. Giving quadruplet therapy the chance to do a good job and hopefully reach Mrd negativity without transplant. My myeloma specialist in the Netherlands says this is not really an option in the Netherlands yet. He says it’s more an option in the United States. So I have some questions about this option for my fellow patients in the United States: 1) Anyone having experience with this option? 2) If so: How many cycles is the induction therapy when you choose this option in the United States? 3) What is maintenance therapy when you choose this option? 4) What are the criteria for starting the transplant when it is needed later on? 5) Do you start induction therapy again when you are on maintenance therapy and get a relapse or do you go straight to transplant when this is needed? Hope to hear and learn from your experience in the United States with the option of delayed transplant. Wishing all Of you all the best.

I had CAR T first (I am a long time survivor, as my med was not working well so the CAR T. I have had 4 lines of therapy) CAR T did not work for me. I then was given Teclistamab. this did not work. Now Dr is recommending talquetamab. I need to travel to receive the shots after hospital stay, about 2 hours each way. I am not adverse to this if it works but CAR T and teclistemab did not work t all for me. I am now trying to decide on talquetamab or a treatment to include Selinexor etc. all oral. I wonder if a break from Bispecifics would be an advantage in that my T cells would have some recovery. Plan B so to speak is Selinexor, Dex and Pomalidamide. SOme tough choices here. The side effects of Talqueamab are difficult. Any thoughts? I have searched Health Tree hoping to get some thoughts that will guide me. Thankyou!

Is there an app for healthtree? I tend to forget about the site until I get a notice about something.

Does anyone on here have IGM Multiple Myeloma? I was diagnosed at the beginning of January 2018. Originally the doctor thought is was Waldenstrom but the bone marrow biopsy confirmed IGM MM. It took several months to get it under control we finally tried Darzalex and that seemed to be working at the moment.