Your Feed

Filter by
See content from
Back to the latest
Avatar
MM2022
Multiple Myeloma Discussion • July 1, 2025
My Carvykti Journey: Managing CRS on Day 8
AI-generated title
Day 8 carvikti hospitalized for CRS toci treatment works well This is a harsh perhaps even grueling process which I elected in order to get to a point of remission with no additional treatments. I think it will be very important to be monitored not only for disease progression, which I don't expert, but for the longer term side effects and problems identified in cartitude 4 trial.
Avatar
Lola
Multiple Myeloma Discussion • July 1, 2025
Navigating ACA Insurance & Costs?
AI-generated title
Hi Diahanna, could you point me to your resources on how to navigate ACA policies? How much will it cost for myself and spouse to have good coverage (meyloma level coverage), including premiums, deductibles, prescriptions etc. I’m still 8.5 years from Medicare and have to find a way to get care that won’t bankrupt me. I should get 1.5 years on Cobra but still have to find care for the remaining 7 years. Thank you
Avatar
Lola
Multiple Myeloma Discussion • July 1, 2025
Seeking MM Specialist in Johannesburg?
AI-generated title
Can anyone recommend a MM specialist in Johannesburg? I’m moving there and need to establish with a new doctor. It’s just maintenance care at the moment 🤞 but still need to get blood tests and lenalidomide refills regularly. Thanks!
Avatar
Lisa521
Multiple Myeloma Discussion • June 30, 2025
Experiencing a Tough ASCT Recovery?
AI-generated title
I had my ASCT on May 23, 2025, about 6 weeks ago now, and I am still feeling awful. I am very weak and fatigued and feel as though I have been run over by a train with body aches all over my body. My appetite is still poor and I have recently begun vomiting after eating, not every meal but much more frequently than when I first had the transplant. I try to walk and move around but get very winded and have to stop and rest after going a very short distance. My doctor said that it can take 100 days to start feeling better. My blood results are great — white blood cell count, hemoglobin, platelets are all normal. Is what I am going through normal for other people who have had a transplant? I think I expected to start feeling better much and getting on with it much faster and am just wondering what other people’s experience has been. Thank you so much for your feedback.
Avatar
MikeW
Multiple Myeloma Discussion • June 29, 2025
Heart PVCs After ASCT: Anyone Else?
AI-generated title
I’m 3 years post ASCT, and recently been diagnosed with cardiac PVC’s at 26% and will undergo a cardiac ablation in the coming weeks. Have others that have cone through MM treatments experienced the same??
Avatar
Mallorylee7
Multiple Myeloma Discussion • June 28, 2025
Managing Migraines on Quad Treatment?
AI-generated title
Hi, I am not a patient, however, my dad was diagnosed with M M in March. He is in his final week of his quad treatment, and for the most part has done very well. However, he has been experiencing migraines for the last two weeks. They are progressively getting more frequent and are debilitating. His local oncologist prescribed him Sumatriptan which helps for a little while, but they come back. He also scheduled him to have an MRI this week. Has anyone experienced this with the quad treatment? Does anybody have any recommendations for something else that can be prescribed to him? He does not meet with his specialist at city of Hope until July 8 and his local oncologist is on vacation for a week. His primary care doctor will not prescribe him anything because of his treatment. Thank you in advance!
Avatar
JohnEustace
Multiple Myeloma Discussion • June 28, 2025
Myeloma Minutes Podcast: New Schedule
AI-generated title
Those of us awaiting a new episode of themyelomaminutes.podbean.com I have news! Jam and Sally have decided to publish every other week. So 14 should be with us next Thursday. hnPlease look out for it and tell others Jo
Avatar
Gebharka
Multiple Myeloma Discussion • June 28, 2025
Question: Does No M-Protein Mean Remission?
AI-generated title
I was diagnosed with MM in 2018 stage 4. I started chemo and velcade. Didn't get Stem Cell because soon after I was diagnosed Covid started. So after a year and a half I was reduced to only Remicade (pill form) now I am told I am in remission because there are M-protien showing in my blood work ( also must add this is my 3rd doctor in this practice, due to alot of the doctors leaving this practice. I am starting to not feel comfortable anymore. So is it true that if there are no M-protien that you are in remission?