Your Feed

Filter by
See content from
Back to the latest
Avatar
Ilikepuzzles52
Multiple Myeloma Discussion • March 18
Experiencing Issues Post-Transplant?
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.
Avatar
Donna
Multiple Myeloma Discussion • March 18
Received a Patient Coach: Anyone Else?
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.
Avatar
MPNULIMBO
Myeloproliferative Neoplasm Discussion • March 18
MPN-U Triple Negative CSF3R mutation
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.
Avatar
jadeHedgehog
Multiple Myeloma Discussion • March 17
MRD Testing
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.
Avatar
DIahanna • Admin
Acute Myeloid Leukemia Discussion • March 17
Join Financial Connect Group
PLease join our Financial Connect Group where you will get relevant timely information regarding costs, access to treatment and other topics.
Avatar
DIahanna • Admin
Multiple Myeloma Discussion • March 17
Join our Financial Connect Group
PLease join our Financial Connect group. Here you will find very important relevant information that you may find very useful in your cancer journey.
Avatar
Iliana • Admin
Multiple Myeloma Discussion • March 16
A Patient's Story: Taking Control of My Data
"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