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.

How many people are relying on clonoSEQ testing to determine if they have relapsed? I have been getting this test done every six months and my specialist is recommending that I do it annually instead. She feels the light chain blood panel is a better indicator of a possible relapse. I'm not sure how I feel about this yet and am curious if anyone else has dealt with this issue.

PLease join our Financial Connect Group where you will get relevant timely information regarding costs, access to treatment and other topics.

I was sent this link from Howard Seibel. It is a wonderful tool you can use to be more effective at fighting insurance denials. https://www.counterforcehealth.org