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NKP64
Multiple Myeloma Discussion • February 4, 2025
1q Gain Relapse: Sharing Your Journey?
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My father has 1q gain and has relapsed after VRD for 5 months and maintenance of 6 months with RD. It would be useful to learn from anyone here in the community with 1q gain and their journey. The doctor is slightly pessimistic when he is consulted. So feeling a little concerned.
Thumbnail for Treating High-Risk Smoldering Myeloma using CAR-T - CAR-PRISM Study | Omar Nadeem, MD | #ASH24
Playlist: ASH 2024

Treating High-Risk Smoldering Myeloma using CAR-T - CAR-PRISM Study | Omar Nadeem, MD | #ASH24

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violetPuppy
Multiple Myeloma Discussion • February 3, 2025
Learning About Nutrition & Immune Support
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Hi All- I'm Gwen Aberer from Danville California, east of San Francisco. I am a Multiple Myeloma patient and look forward to learning more about how we can support our immune systems through nutrition and exercise.
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Kelela74
Multiple Myeloma Discussion • February 1, 2025
Thoughts on Early Treatment for High-Risk SMM?
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Watch and wait or treat now for Smoldering MM? Hi I’m 67 almost 68 female diagnosed with high risk SMM and made the decision to fight off this disease. I have a wonderful oncologist and his team working to do everything for me in this fight. Previously started on Revlimid but had side effects that my Oncologist suggested we switch to Darvalex infusions recently approved for this treatment which he said I may tolerate better. I had extremely itchy scalp, fatigue, constipation and a scary episode of Afib. Anyone here have thoughts on the wait n watch vs treat now? I feel fortunate that this had been found early enough for me to have an option and going forward live my life as long as possible! My parents both lived to 89 and have always thought I’d have a good long life also. Remaining positive! 🙏
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kwm69
Multiple Myeloma Discussion • January 31, 2025
Hair Regrowth Timeline: What to Expect?
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Hi everyone. I am 8 weeks post stem cell transplant and feel great. Because they gave me Melphalan, I lost my hair. My question is when does your hair usually begin to grow back post transplant? This has been one of the hardest parts of the journey for me. I am very thankful that I physically feel as good as I do so soon, and almost feel guilty that I am struggling with this. But thank you in advance for any input about your own personal experience with this. God Bless.
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BreeDee
Multiple Myeloma Discussion • January 31, 2025
Experiences Opting Out of Transplant?
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Hello, has anyone opted out of doing a stem cell transplant? I was on a clinical trial for my induction therapy, and I am now done with that. Now my doctors are saying up next is talking about the option of doing a stem cell transplant. I’m considering just harvesting my stem cells right now. I did really well during my induction therapy treatment with little to no side effects. I am 32 years old with 1 high risk factor. Please share if you decided to OPT out of doing a stem cell transplant. Thanks. 🙂
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yellowGoose
Multiple Myeloma Discussion • January 31, 2025
My Positive Experience With Talvey and IVIG
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I have IVIG once a month after my Talvey injection. I have intermittent diarrhea, but I think it's because I have had three stem cell transplants, and my digestion intestines are stripped. I usually sleep during my infusion because of the pre-meds given to me before my Talvey I have only been sick once since last year so I think it is helping.
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Pheba1
Multiple Myeloma Discussion • January 31, 2025
Experiencing Worsening IVIG Side Effects?
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Good day: Is anyone else on IVIG transfusions? I received mine yesterday. I had violent diarrhea, nausea, chills, no fever, tried to vomit several times, but I have surgery for reflux so can't vomit. Last month I broke out in a rash after receiving the transfusion. Just wondering if this is normal. This is my 5th transfusion. First three went off without any problems or side-effects.