Your Feed

Filter by
See content from
Back to the latest
Avatar
fleetalee
Polycythemia Vera Discussion • August 31
Hair loss
“Has anyone with PV taken givinostat and experienced rapid diffuse hair thinning or hair loss? If so, what happened when the drug was continued or stopped?
Avatar
Lyn4750
Multiple Myeloma Discussion • August 31
Lenalidomide side effects
I’ve been on Lenalidomide 15 Mg 21 on 7 off for 8 months. Have constant yellow dysentery on the 21 days on. Tapers off on the 7 off. Finally had a new doctor prescribe Colestipol tablets twice a day. Some relief the first month. They cut back the Lenalidomide to every other day but Colestipol not working. Is this a sign I should stop the Lenalidomide? What have others experienced.
Avatar
DebC65
Multiple Myeloma Discussion • August 27
Acupuncture?
Has anyone tried an Oncology Acupuncturist for BIPN? Do these nerves in the legs and feet ever regenerate? I refuse to take another drug…Gabapentin was prescribed.
Avatar
Daddie
Multiple Myeloma Discussion • August 27
Kyprolis
Experiences with this drug
Avatar
Joseph
Multiple Myeloma Discussion • August 24
Darzalex Side Effects: Heart Rate, Headaches, & Heat?
AI-generated title
I was diagnosed withMM in January, 2024. Followed by 12 weeks of induction therapy and then ASCT in June. Took Revlimed as maintenance therapy until June, 2026 when I became neutropenic. Restaging at 24 mos showed healthy bones, no kidney issues and full remission. I am very active. Transitioned to Darzalex Faspro and remain on weekly injections for 4 more weeks, then a month biweekly, then monthly. Question I have is that I seem to be more sensitive to heat while exercising and my heart rate is more elevated than previously. I sometimes have a headache during the week. This is new since starting Darzalex.
Avatar
violetLobster
Multiple Myeloma Discussion • August 20
Coach meeting
I can never find our meeting on the website