Hi, My husband got diagnosed with Myeloma just 3 months back. He is in his Induction since August. He is getting his treatment in Kaiser from a hematologist. When I joined different groups to know more about myeloma, everyone suggested to connect with a myeloma specialist. I would like to know how important it is to add a myeloma specialist in your treatment group and can we still continue with our current hematologist. He has an appointment with his doctor next week. We are a bit confused how to discuss this with him without hurting his feelings. Any advice on this would be greatly appreciated. Thank you in advance

I have high risk (1q gain) t14:16 MM + AL amyloidosis. I am in induction but my current hospital has expressed concerns about my eligibility for ASCT transplant at their center due to the amyloidosis. They want to see more organ improvement for their approval so my dr has suggested lengthening induction to 6 months from 4 and re-evaluating. It seems up in the air right now. Currently on Dara - Cybord. Has anyone else gone through this, where they decided to delay or not do it at all? Curious to hear about others exoerience with either delayed transplant or alternative treatments for high risk myeloma with or without amyloidosis.

HIVES! Anyone encounter body hives and/or scalp hives after their ASCT? Looking for anyone who may have developed a "new" medication OR food allergy after ASCT. I was never allergic to anything prior. I started to develop hives about one month after my transplant (APR 2025). At that time, docs started me on BACTRIM and acyclovir. The hives continued coming. My scalp was the worse, but random hives elsewhere also. Went to a derma and continued with oncology, both would tell me "it's an immune reaction." OK, but please fix this!!! I would use topicals, which helped some, but prednisone would clear everything. To keep this short, I stopped bactrim, acyclovir and do not take my REVLIMID at this point. I STILL encounter body and scalp hives. NOW, I am wondering now if this a food related allergy I have developed. I will say, SEPT 2024, when I initally started darza/K/dex and revlimid PRE ASCT, I always had a mild rash. Tolerable but nothing like it is now. Anyone else experience this?? THANK YOU! in advance.

Pangea vs. Mayo 20-2-20 Model Hi. Newbie here. VERY thankful to find this group! Diagnosed with HRSMM earlier this summer. Just starting, really. Have had just one conversation with an MM specialist. He used the Pangea model vs. the Mayo Clinic's 20-2-20 model in thinking through my situation (active surveillance). The Pangea 2.0 model is a VERY different progression % for me than Mayo Clinic's. (My M-spike is just over 2.0 and I have a 1Q gain and some other chromosomal abnormalities). Has anyone else had this experience of comparing the prognosis models and scratching their heads?

Hi everyone! It has been 21 months since my ASCT and I am MRD negative. I am taking daily Venclexta and monthly Kyprolis and IVIG infusions for maintenance. Here's my dilemma....I have been recognized by Virgin Unite for my non profit work and awarded a Caribbean cruise with Virgin Voyages. To say that I am honored is an understatement, but I am also hesitant to accept due to the fact that I will be on vacation with 2500 other people in close quarters. Has anyone else been faced with making a decision like this, and what did you ultimately decide? I have asked my oncologist for her opinion and I am waiting for her response. Thanks!

Has anyone had relapse with extramedullary disease. Found on PET CT. Don't see much information or discussion on this site? MRD positive at 4 x 10-4 BMB. Lambda light chain 49mg/l Kappa 5 mg/L Started DaraVd 5 weeks ago as not eligible for any trials at this point. Will have scan to see response.

I have multiple myeloma light chain as any of you had a succesfull zirconium teeth implants i want to have one , but afraid that well not heal is zirconium bad for Myeloma?

Well it’s been a long slow road. I started with anemia in 2004 and ended with a smoldering MM diagnosis. In 2014 the MM became active and it was time for treatment. I had several small lesions from head to tib-fib, and 60% mm in bone marrow. My second trip to Dana Farber I was offered a clinical trial. I had been interested in them for years because we needed something to help rid MM. the Determination Trial was basically the Gold standard at the time RVD and SCT. One arm waited on transplant, I ended up on the early one. After transplant I was put on revlimid maintenance. The dose was lowered several times due to severe diarrhea. Eight years later I had several small strokes. We still don’t know what caused them but on workup they found a brain aneurism. So I was taken off the rev and had 2 stents placed in the brain. it’s been 3 years and so far no return of MM. the neuropathy continues as does the diarrhea. I am on IVIG monthly because my immune system never rebooted, and Aredia every 3 months. I’m still here and going strong. Without the clinical trials we would never have so many more treatments! It’s the way to go!

I relapsed after 9 months after ASCT and now contemplating Bispecific or CAR-T. If anyone has faced this situation I would like to know what drove their choice to pick one or the other therapies.

Is your Myeloma specialist forceful with treatment decisions (e.g. my way or the highway), or is it just mine? My experience with my oncologist is he walks into the room and says this is what we are doing! He literally tells me if I don't want to listen to him, I'm more than welcome to go elsewhere (it's either I go with his plan or I go somewhere else; he's not interested in hearing my opinion). During induction therapy when my disease stopped responding to the four drug regiment (Dara, velcade, dex, and Revlimid), he tried to force me to start taking kyprolis, even though I kept telling him I was not comfortable with taking that drug because of the potential heart toxicity side effect. We got into a shouting match over it, until he finally backed down and said there was something else he could put me on. He eventually put me on venetoclax, and like magic, it drastically drove down my M-spike in just a few weeks and I was able to undergo stem cell transplant right away.... Have you experienced similar dynamics this with your mm specialist where they aggressively try to force you into going along with their treatment plan without giving you the opportunity to be involved in your own care? It makes me feel like my oncologist is driven by a secret motive such as meeting a quota or conducting an experiment or something 🤔

Hello, if you've had Car-T (Carvykti) can you please share your experience with me?🙏 My Myeloma specialist is scheduling me for it, but I don't know what to expect. I had autologous stem cell transplant in September 2024, and relapsed one year later last month. My oncologist insists on Car-T as my only next option to help me buy me longer time. How did you feel when you had Car-T, what were some of the side effects, how long did it take to recover, do you ever feel normal again? I look forward to hearing about your experience, thank you 🙏

💚 Thanks to your participation, we completed our Tree of Hope! We’re deeply grateful for every name shared. Now, by also sharing your records, together we can bring hope closer and move toward a cure. 🌳 Our Tree of Hope grew with every name shared; patients, caregivers, and doctors standing side by side to create something bigger than ourselves. 👉 Be part of the cure: https://htree.org/takecontrolofyourhealth 🩸 As we close Blood Cancer Awareness Month, we honor the strength of our community. From EDUCATION that empowers patients with knowledge and COMMUNITY that brings comfort, to tools that help you TAKE CONTROL of your care and ADVANCING CURES TOGETHER, this month has been about more than awareness. It’s been about ACTION. ✨ At HealthTree, we believe that within the greatest adversity exists the greatest potential for doing good. REMEMBER: Together We Care. Together We Cure. THANK YOU!!!

💚 Thanks to your participation, we completed the Tree of Hope! We’re deeply grateful for every name shared. Now, by also sharing your records, together we can bring hope closer and move toward a cure. 🌳 Our Tree of Hope grew with every name shared; patients, caregivers, and doctors standing side by side to create something bigger than ourselves. 👉 Be part of the cure: https://htree.org/takecontrolofyourhealth 🩸 As we close Blood Cancer Awareness Month, we honor the strength of our community. From EDUCATION that empowers patients with knowledge and COMMUNITY that brings comfort, to tools that help you TAKE CONTROL of your care and ADVANCING CURES TOGETHER, this month has been about more than awareness. It’s been about ACTION. ✨ At HealthTree, we believe that within the greatest adversity exists the greatest potential for doing good. REMEMBER: Together We Care. Together We Cure. THANK YOU!!!

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