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

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.