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.

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.

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

PLease join our Financial Connect group. Here you will find very important relevant information that you may find very useful in your cancer journey.

"It took me probably the better part of a day the first time to figure out what kind of myeloma I had." Dave Braucht’s story is a familiar one. Between different labs and multiple specialists, his medical history was scattered everywhere. By getting his genetics and lab work organized into one visual interface, he cut hours of confusion down to minutes of clarity. Dave is sharing his experience this Myeloma Awareness Month to help others feel more in control of their own data. Watch full video here: https://htree.org/myelomaawarenessmonth2026

So I'm reaching out to anyone on here who has done quadruplet therapy (either dara VRD or dara KRD) and has translocation 11;14. Just wondering how you have responded to your therapy and whether you have decided to proceed to ASCT or defer that to a later time. I have one more treatment left in cycle 5. As of end of cycle 4 my M spike had decreased from 3.05 to 1.18, my kappa has gone from 103 to 21, and my IGg down from 4500 to 1780. i don't think my m spike will go to 0 by the end of cycle 6 but I'd still rather try to extend therapy at least for two more cycles to see how low I can get those levels. Just searching for those of you who may be or have been in the same situation. FYI-I am being treated at MSK.

A friend of mine on east coast was recently diagnosed with myeloma and would like to see a myeloma specialist at Dana-Farber or Memorial Sloan Kettering. I told him that I would ask if you have any recommendations for myeloma specialists at either of these organizations. I’d appreciate any names that I can pass along. Thanks!

Hi all, so i had a sct in December 2024, It didnt work unfortunately so I started treatment again the folling June 2024 and have been doing well on weekly treatment since with my number all in range, last week my period came back after 15 months and I was full sure I had gone or was in the pre menopause I had all the symptoms hot flushes, bad night sweats, and now they are all gone, has this hap o ended to anyone else? Im waiting on a referral from a gynaecologist, im just curious for anyone else, im now 38

Preparing to start on a clinical trial at U of Penn. It is a new trial with Bispecific antibody Elranatamab (Elrexfio) and investigational drug Inobrodib (CCS1477). Is there anyone out there that is in this trial or anyone on one of these drugs and if so how is it going (response/side effect profile). The Bispecific is commercially available.

Join the conversation about MRD in multiple myeloma. 🩸 The 13th Annual Miami Myeloma MRD Meeting 2026 will bring together leading experts to share the latest research and insights on Minimal Residual Disease and its role in advancing myeloma care. If you're interested in MRD or following the latest updates in myeloma research, this is a great opportunity to learn and discuss with others in the community. 🗓️ April 10, 2026 ⏰ 7:30 AM – 5:30 PM ET 📍 Miami, FL | Virtual access available https://healthtree.org/myeloma/community/events/apr26-miami-myeloma-mrd-2026?utm_source=&utm_medium=meta&utm_campaign=socialmediaorganic&utm_content=general