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

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.

I had another bone marrow Biopsy and the result came back MDS Low risk and very likely CMML Cronic myelomonosystic leukemia.- high risk. My oncologist took me off Vidaza and said there was nothing else they could do for me other than blood transfusion…. Dacogen could possibly give me about a 25% chance. Or clinical trials…. It I am looking more towards quality of life as I am 85 and more than likely will not have much time on 5his earth anyway.. I have several mutations JAK2 TET2, , etc,,etc. also have many antigens and antibodies when i need blood transfusions. What would you do ?

When did you start looking for palliative care,….. how ill were you, what did they do for you to make you more comfortable. Was it helpful……

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!