Hello, I am in my second month of maintenance after SCT in August 2023. I have IGG Kappa. At the end of my first month my kappa (and lambda) levels were elevated. I had gotten COVID at the time as well as a bad ear infection and my doc attributed the raised levels to that. As luck would have it, I ended up getting the flu around the time of my second month testing. Kappa and lambda levels are higher and now they have detected free kappa in my urine. Could this be the start of a relapse? Or could this again be attributed to something else (the flu). Thank you!

Hi everyone, has anyone had multiple myeloma and at the same time myelofibrosis. My mom was diagnosed with this rare case and she is being treated with KRD treatment. Her response has been slow, her hemoglobin is in 5,9 so she had blood transfusion and he palettes are in 43,000 which is better because two weeks ago she was lower than 10,000. Any recommendations?

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

Curious to know if anyone had a LOT (13!) of cavities following treatment. In my case, after 6 R-CHOP treatments that also left me with osteoporosis. (I’m a 59 year old man, if that makes any difference.)

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?