Has anyone experienced bad skin rash around the Velcade injection spot and elsewhere on the body ? If yes how did you manage ? I am on quadruplets induction therapy second month and I am experiencing pretty bad skin rash with Velcade. 1st month it went all over the abdomen and even under the armpits. We had to stop Velcade for 4 weeks … Second month - We slowed the injection pace and it helped contain the rash around the injection spot. Still after the 4th jab the skin rash has again migrated to the armpits… My haematologist was suggesting intravenous injection instead of subcutaneous… Would appreciate any feedback. Update - I now have done 2 - IV Velcade injection and so far all good 👍🏽. No skin rash .

Has anyone gained a lot of weight since the have been diagnosed with MM? My weight may be contributing to more bone pain. If so has it been discussed to use Zepbound or Wegovy to help lose weight? If you have been prescribed one of these which one and how did you do?

Hello, I was diagnosed in August of 25, with a solitary Plasmacytoma in the L2 vertebrae. Course of action was radiation. It was only 20% effective and doctors want to start doing treat all over. Do a new biopsy, follow up with new blood work and another PET Scan. It feels like we are wasting the next 2-3 months chasing after info they should already have. Anyone have a similar diagnosis with unresponsive radiation treatment and did a follow up treatment that resulted in remission?

I found this article on game theory and cancer treatment enlightening. It helped me reconcile my discomfort of thinking of this journey as a battle. Here's an excerpt: "Cancer is a strategic game. A cold, calculating, endlessly adaptive game played inside your own body by an opponent that does not sleep, does not negotiate in good faith, and has absolutely no concern for your retirement plans." https://nutmegphantasy.substack.com/p/this-might-help-explain-cancer-what?utm_source=share&utm_medium=android&r=1ecdop&triedRedirect=true

Anyone else out there?

Paraprotein and Kappa Lamda numbers are going up seeming that the Dara/pom/dex treatment is not working. No other health issues related to MM, so looking to make decisions about where to go from here.

Hi all, I just recently finished my 24 months of Zometa infusions post diagnosis and stem cell transplant. I had a lot of bone involvement with 7 spinal compression fractures and a multitude of lesions elsewhere. I had a bone density test and it says I am osteopenic but there is a list of things that might falsely influence the result. My primary oncologist in Tennessee says based on this we do nothing and repeat the bone density at 2 years. My consulting oncologist in Boston says I should have infusions every 3 months to continue to support bone health. What do other doctors out there do? This is such a wide response in recommendation I am not sure what to do. Thanks for your response. Judy

“My innovation moment came when I successfully became my own advocate.” At 70 years old, living with IgG Lambda multiple myeloma, Nancy took a different approach to her care, one rooted in knowledge, intention, and self-advocacy. By studying immunology, she was able to clearly define her goals: maintaining balance in her body while supporting effective cancer surveillance, and prioritizing quality of life alongside treatment. Her journey hasn’t been linear. After years of slow progression, a serious fall led to multiple fractures and a peak in disease activity. Treatment brought her into remission, but what followed was a more measured approach—one that values low-dose therapies, time off treatment to rebuild, and careful attention to how her body responds. Nancy also faced challenges with treatment-related side effects, reinforcing her belief in making thoughtful, personalized decisions about her care. For her, innovation isn’t just about new therapies; it’s about understanding your body, asking questions, and having the confidence to stand by your choices. Her story is a powerful reminder that innovation in myeloma lives not only in research, but in the everyday decisions patients make. 💬 What was your innovation moment? Share with us in the comments.

Has anyone had a problem getting their vaccines post asct? My transplant was February 2025. I received an influenza vaccine in August 2025. I’m due for a second one now, but the pharmacy won’t give it to me. I’ve tried a couple of pharmacies. According to the transplant surgeons vaccine schedule, I am also supposed to get a third one in July. Not sure why this has to be so difficult. Thanks for any advice.

I see I received a coach suggestion but I can’t send them a message. Her name is Lou Sears. I would love to connect with them.

Hi there! Is anybody else out here that has MPN-U Triple Negative with a CSF3R mutation? I am a 60 year old female and I was diagnosed with this over the last 5 years and have been on Jakafi for 3 of those years. I have a great MPN specialist and GP, which I’m very grateful for because I know how hard it can be to find the right Doctor. Just wondering if you have a similar diagnosis. Are the co-morbidities progressing and still diminishing your QOL? I have IDA W/ low storage, Fybro, Chronic Inflammation, serious weight gain w/no explanation, bone and nerve degeneration, Ramsey-Hunt and osteoarthritis just to name a few. And my immunity is low. Yikes! Just looking for my tribe, lol.