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Marga
Multiple Myeloma Discussion • April 16, 2024
Outpatient SCT Prep: Tips & Experiences?
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Hi everyone, My husband is getting ready for SCT this summer. He was given the option of not stay at the hospital for the 4 - 6 weeks. Rather, he'll be going each day to the hospital for labs, etc and return home every day. He'll only remain at the hospital if any complications arise. Are there any others that have done SCT this way? Also, if you could share how you got your home ready, and any other preparations that were helpful, that would be much appreciated. Thanks!
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DIahanna • Admin
Multiple Myeloma Discussion • April 15, 2024
Financial Assistance Update: Programs Open
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Hello Everyone, Update on Financial Assistance Programs. HealthWell is open for Medicare Access -it still semms to be 12K Patient Advocate Foundation (copay assist) is open for Multiple Myeloma
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MariaM
Multiple Myeloma Discussion • April 14, 2024
Kyprolis & Pomalyst: What Was Your Experience?
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I was diagnosed with IGA Kappa January 2023. I had my ASCT in October 2023 & have relapsed 6 months later. I have high risk features. I started maintenance therapy Feb 2024- Darzalex & Revlimid but my IGA fell in above normal range last week and Monoclonal protein showed up as well. I will be starting 2 x week Kyprolis & Pomalyst (daily) for 3 weeks on/ 1 week off. If anyone would share their experience with this regimen it is most appreciated 🙏
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Msginas63
Multiple Myeloma Discussion • April 12, 2024
FISH Results Improved Without Treatment?
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Hello! I’m currently smoldering since December 2022. My initial fish test showed abnormal with 1q gain, four copies and 9p24(jac2) gain, 3 copies. I just had a new bmb in March, the fish results indicated everything was normal. Does anyone know if it is normal to go from abnormal to normal without having any treatments? Have anyone experienced this?
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JohnK
Multiple Myeloma Discussion • April 12, 2024
Sharing My Journey: BMT in India, Home in Kenya
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I am a multiple myeloma patient from Kenya in East Africa. I was diagnosed with MM on June 2022 after many years of health problems and intractable epistaxis from 2020. Due to lack of facilities in my country I decided to go for BMT in India in late 2022. I had a successful transplant on March 2023, I am back to my country and I am currently on Lenalidomide during this post-transplant management period. I have been responding well apart from very low white blood counts which are regular but I normally get Neutas immunotherapy booster from time time.
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Dave P
Multiple Myeloma Discussion • April 11, 2024
Managing Kidney Disease With Myeloma?
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Anyone else here dealing with Stage 3 kidney disease also? Any advice? Might have to switch meds as the dara/Pom doesn't seem to be being very effective...
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Slapshot04
Multiple Myeloma Discussion • April 11, 2024
Managing Kyprolis Heart Rate & Insomnia?
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After my first relapse last fall, I was placed on a DKd regimen. Very effective, but the Kyprolis causes my heart rate to elevate by 50% the night of the infusion, which makes it impossible to sleep. The Dex doesn’t help either. Has anyone experienced this and found a way to lower your heart rate and overcome the insomnia?