Hi, I'm new here and wondering if there is any sort of virtual support or discussion group? Or is anyone else interested in having one? I've had MGUS for about 10 years along with several genetic disorders (probable mastocytosis, hereditary alpha tryptasemia, hypogammaglobulinemia, Ehlers Danlos, Grover's, pilomatricoma, etc). Basically I don't make enough normal antibodies and I'm allergic to everything. Makes me extremely hard to treat. I'm new to Colorado and have not been able to find physicians who are familiar with the interactions of what I have. Plus the extremely dry air and high elevation here seem to make everything worse. Any chance that anyone knows a geneticist who treats? A rare disorders specialist? I'd welcome any suggestions, or hearing from anyone in a similar position. And a support group might be lovely. Thanks! My best to all.

Has anybody not been able to have enough stem cells collected for an autologous transplant. It’s a month since GCSF and Plerixafor, they only managed to collect just over a third of 1 million today. They’re going to try again tomorrow but I wondered what would happen if they just can’t get enough. Thanks and I hope you’re all keeping well. Janine

For anyone with newly diagnosed MM, I would suggest looking into enrollment in the Cartitude 5 or Cartitude 6 clinical trials, both of which test CAR T-cells as an initial therapy. CAR T-cell therapy has been around for several years and has shown good results with relapsed and refractory MM patients. I'm enrolled in Cartitude 5 and scheduled for infusion of my genetically modified CAR T-cells this Monday. The goal is to prolong my current remission. I've also had stem cells extracted and stored for possible backup therapy. Good luck to my fellow MM warriors!

I have a question about multiple consecutive ASCTs. I’ve been reading on this site that some people had two or even 3(!) SCTs in the recent years. I know that two consecutive SCTs used to be standard practice years ago, but then it was found that it didn’t work better than a single SCT in the long run, so the standard practice changed to a single SCT, especially with new treatments such CAR-T and bispecifics available for refractory MM. Given all the new available treatments before and after SCT, why would someone still go through multiple SCTs?

Greetings fellow MM warriors and Thankyou for sharing your experiences. Just started my treatments this week with the RVD and they will also add Darzalex at my request next. I have a question since the only side effect immediately noticed was Hiccups! Like frequently and especially bothersome at night. I think it is from the Acyclovir that they gave me as a rash side effect precaution… no rash symptoms yet. Any thoughts or suggestions?

Has anyone been diagnosed with the 4-14 mutation? Just wondering what your journey has been like and what treatments you have had. My husband had Dara+Dex+Velcade for 4 months, came back and had a stem cell transplant that lasted 7 months, came back again and had a car-t transplant that lasted 5 months and now is getting Talquetamab.

I went through the Car-T transplant in February 2023. It started out very well but now has stopped working. They are now talking about bio-specific antibodies. Has anyone gone through this ?? This is what I Love about this website because folks are willing to listen and then give up information !! I have other options but this is what the doctor advises. Just curious about side effect and other things !! We are going to whoop this. Love all of y’all and praying for you all !! Remember, never give up because new drugs are being made every day !!🙏🙏🙏

Interested to hear if anyone has had a similar experience or explanation of how this may have occured. I was diagnosed with smoldering myeloma in 2016 that progressed to full blown disease in 2021. I was found to have an IgG lambda variant. Standard therapy (Revlimid, Darzalex, Velcade, and Dex) got my numbers down. Covid delayed my ASCT until Jan of 2023. Afterwards I initially went into complete remission but then routine followup in December of 2023 showed an uptick in my M-spike to 0.2. Protein electrophoresis still showed no evidence of the IgG lambda clone but now showed a spike consistent with the presence of an IgG kappa variant. There was some thought that may have been somehow related to an RSV infection I had just experienced but labs repeated mid February 2024 showed similar findings with still no evidence of the IgG lambda clone I had originally but a continued spike consistent with an IgG kappa variant. I'm scheduled for restaging with a repeat BM and PET/CT and further treatment based on those results but I am curious as to where this IgG kappa variant came from especially in light of what appears to have been an otherwise successful ASCT. Any thoughts?

Hello Everyone, Don't forget you have until March 31 to find a new Medicare Advantage Plan. Be aware that your Medicare Advantage plan probably changed from last year. Is it still going to provide you the coverage you need? Are your doctors still in network or taking your plan at all? Read your plan's fine print. A lot is hidden there. to review your options, go to medicare.gov and then to the Medicare Plan Finder. Because of the proposed federal policy changes to Medicare that are expected to reduce reimbursements from Medicare to doctors, you may be faced with higher premiums and benefit cuts. Don't wait until it's too late111

Hi all - I recently went through a bout of Covid. It was quite different from the one other time I had it, with nasal congestion, some fever, fatigue, and major coughing. It lasted for about a week, and I recovered well. Shortly after recovering, I had my labs done and noted to my surprise, that my lambda (involved) light chain number shot up from about 16 mg/L (well within normal) to 157 mg/L (WAY above normal) with my kappa:lambda ratio dropping to 0.12 (way below normal). Those tests were run only a month apart from each other. My M-spike stayed at the 0.4 level it's been at since my last stem cell transplant, over a year ago. This was, of course, very concerning. I messaged my doctor and she had me wait a week and then repeat the tests. After just two weeks or so, my lambda light chain level dropped to 46 mg/L, a little above normal, and the kappa:lambda ratio went up to 0.43, within the normal range. And for the kicker, the M-spike dropped to 0.1. So basically, over the course of a few weeks, I went from normal to way high lambda light chain results back down to close to normal. The M-spike stayed where it had been and then suddenly dropped significantly. My doctor has no explanation for this and has never seen anything like it. My question is whether any of you have experienced any similar weirdness with your light chain numbers during or after a Covid infection (or any other infection for that matter). Thanks very much, Mike

Hi, My husband started on Talquetamab in the hospital. He was in for 12 days. He had 1/4 dose on day one, 1/2 dose day 3, 3/4 dose day 5 and full dose on day 7. He had allot of swelling in the hospital and bruising. After two weeks of being home, he has no taste and the skin is peeling off his hands and feet. Is this normal? Will it peel off only once? What can he do to bring back taste. Anything you can share would help. He will start getting a full dose every two weeks starting tomorrow.

I saw this news report and I am posting for others see. It came out today. Title: Elotuzumab Misses Mark Again as Frontline Treatment for Multiple Myeloma — No PFS benefit from adding the monoclonal antibody to standard therapy https://www.medpagetoday.com/hematologyoncology/myeloma/108823?xid=nl_mpt_DHE_2024-02-20&eun=g2146371d0r&utm_source=Sailthru&utm_medium=email&utm_campaign=Daily%20Headlines%20Evening%202024-02-20&utm_term=NL_Daily_DHE_dual-gmail-definition

Is there anyone in this forum who has experience of fasting or a fasting mimicking diet (FMD) before melphalan and ASCT treatment? I am about to go through ASCT and have been reading allot about the supposedly positive effects of fasting before and during chemo. 48 hours water fasting before and 24 h after is frequently referred to as well as the alternative of FMD such as Prolon.