Has anyone used ozone therapy? Or PEMF?

I'm a multiple myeloma patient who is high risk - deletion 17p leading to lambda light chain problems. I've been warned many times that I am likely to relapse. Yet here I am almost 5 years since diagnosis and I am still alive and on line 2 of treatment. I had a stem cell transplant. The follow-ups failed and I started daratumumab, lenalidomide, dexamethasone in February 2021. My light chain counts decreased and have stayed low. I've had some infection problems. But what I would like to discuss here is medication build-up. We often talk about disease burden. But what about medication burden? I convinced my oncologist to lower my dexamethasone dose. Then I convinced her to lower my lenalidomide dose. This proved really helpful. My light chain count has remained great - but - and this is important - my blood readings have improved. Even my oncologist is surprised. We are now going to try lowering my daratumumab dose. I will keep you posted. My main point is that medication burden is real and should be considered in the course of treatment.

Researchers at the University of Arizona are investigating whether yoga can improve physical 🏋️‍♂️ and mental 🧠 health for myeloma patients through a national clinical trial. This study aims to assess how yoga affects symptoms like pain 🤕, fatigue 💤, anxiety 😟, and overall quality of life. Patients on active treatment can join weekly online yoga classes 🧑‍💻 and track their progress 📊 to help determine the benefits of this practice. While HealthTree will not be facilitating this study, we recognize the importance of physical activity 🚶‍♀️ within the myeloma community and wanted to share this exciting research opportunity with you. Learn more here: https://buff.ly/4eVRhJu

Can you tell me if there are ex pats living abroad that anyone coaches that I could speak with. Thanks

Hi, is there anyone familiar with rising Amylase levels? Thanks in advance Benno

Does anyone have a patient with Type 1 diabetes? I would love to chat about their treatment regimen, and she would like to connect with someone. She lives in Canada. Thanks so much!

Has any one used or heard of infrared beds for the treatment of multiple myeloma?

Has anyone had experience with heart valve replacement and myeloma? Wondering how the type of valve used - artificial or cow or pig might affect future options for myeloma treatment. With the artificial valve lifelong anti coagulation with warfarin is required. Thanks.

Trying to understand what my life will look like living with multiple myeloma. I am in my 3rd cycle of the 4 drug treatment Dvrd. I have no stamina whatsoever. Dr. Said I should limit my what I lift to 30lbs. I'm planning to do the stem cell transplant in late December. What other adjustment should I plan for. Will I regain my stamina 6 months after SCT.? Will I always be restricted to 30lbs lifting? I just don't know what to expect and how to plan for what comes. Relapse in 4-5 years if I'm lucky. Thank you for your insights.

I am interested in contributing to knowledge/understanding re: how environmental factors contribute to multiple myeloma. Both of my neighbors have multiple myeloma. That's three multiple myeloma households in a row, including me. We live near East High School in Salt Lake City. Does anyone have any suggestions about who may find this useful for research? I intend to contact my water provider to check our water supply. I have also considered a neighborhood survey to see if there are other neighbors with MM or other blood cancers. Any other suggestions?

Hello, I underwent autologous stem cell transplant after achieving zero M-Spike and less than 5% of my bone marrow having Myeloma cells. Has anyone else undergone stem cell transplant while having a zero M-spike, or with very little Myeloma cells in their bone marrow (less than 5%)? If so, did this help you stay in remission longer, or how long was your remission? I presume the lower the disease is when going into transplant, the better the outcome, as opposed to getting a transplant when the disease is still looming high in the body. Thank you.

I have been diagnosed with MDS/MPN unspecified - I don’t see that as an option here under diagnosis. It is very confusing. Other than ferrous sulfate for anemia I’m in a watch and wait stage. So many questions.

Hello, I was wondering how common MRD- is at the 3-month mark of CAR-T? I had Carvykti on July 11 and am waiting on the results of my bone marrow biopsy. So far blood work looks good but I'm nervous about the biopsy results. If I don't achieve MRD-, is that bad? And does that mean it still may be achieved at some point? Thank you!

I am excited to have found this group.