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Giovinazzo61
Multiple Myeloma Discussion • September 4, 2025
Carvykti for 17p Deletion: Seeking Experiences
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Hello everyone My husband is considered high risk Multiple Myeloma failed the stem cells transplant this May, I was going through his test and found the Gene testing, I asked Chat GPT to explain in simple terms and he is diagnosed with 17p/TP53 loss, has anyone been diagnosed with 17p/TP53? My oncologist never mentioned or explained it, only she kept on telling me he is high risk Has any one had the CAR T CARVICTY with some good results with 17p? It will help me a lot with your experience. Thank you
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Moni64
Multiple Myeloma Discussion • September 4, 2025
Experiencing Increased CMV Post CAR T?
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Hello , Has anyone experienced an increase of CMV 38 days post Cart T? If so how did you progress and/or treat? Hasn’t shown up until now and post IVIG…. Not sure it is related though. Hope you are all doing well🙏🏼
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Blondie1746
Multiple Myeloma Discussion • September 4, 2025
Experiencing Chills After Kyprolis?
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I have been on kyprolis/pom/dex for 3 months now. For the past month, on the day of my kyprolis infusion I get the chills that evening. It is gone by morning. Has anyone else experienced this?
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Nickymoore
Multiple Myeloma Discussion • September 3, 2025
Sharing My Journey & Liver Lesion Concerns
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I was wondering if anyone else had liver lesions associated with MM.That is my greatest concern right at this moment in my journey. Here is my MM journey so far! II was diagnosed with multiple myeloma in January 2025 at 50 yrs old. . I broke my right femur the day after Thanksgiving in November 2024 after trying to connect an air fitting to an airline. I went to the er that night and they informed me that I had cancer, due to part of my bone missing from X-ray. After MRI, CT, PET, Biopsy of femur, and Bone marrow biopsy all within about 4 to 5 weeks. They told me I had MM igG kappa with a 1q+. M-spike was at 3.0 igG was 4241. Pet scan showed multiple bone lesions and liver lesions. I had 10 radiation treatments the end of January for the tumor on femur, was in sling for about 6 months due to bone being hollowed out by MM. It took till May to get cleared to do any kind of therapy to rehab it. Started treatments in Feb but due to not having insurance we just started with dar and Dex. Got insurance first if March. We added valcade and revelmed. All my MM numbers dropped m-spike got down to .26 and igG was 610 but the lesions on my liver have gotten worse more and they have grown, m-spike was slowly climbing to .46 and igG was up to 680. So first of August we switched to Kyprolis and revelmed(had just refilled) still with Dex and dar dropped the valcade. Then yesterday I started pomolyst dropped the revelmed. I will be having a biopsy on liver within next 3 weeks to determine if it has mutated from the original for of MM that was in my femur. If this line of treatment doesn’t work on the liver lesions then next step is car-T treatment. I actually started feeling pretty much normal in June for the first time since November. I think for me it was just getting back to doing all that I could versus just setting thinking I couldn’t do anything like I could before. There are things I cannot do like I did before MM but I can still do things just have to pace myself and know my limits(which I overdue sometime. Sorry this is so long been trying to get it posted for month or so. Just want to say Thank You to everyone who post on this forum. It has been very helpful in my journey. My greatest comfort in all of this is I know God is in control. Even though the outcome one day may not be what I want, I know it will be for His Glory and I get to set a example for my children to trust Him in good times and not so good times.
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Nickymoore
Multiple Myeloma Discussion • September 3, 2025
Sharing My Journey Through Treatment Changes
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I was diagnosed with multiple myeloma in January 2025 at 50 yrs old. I broke my right femur the day after Thanksgiving in November 2024 after trying to connect an air fitting to an airline. I went to the er that night and they informed me that I had cancer, due to part of my bone missing from X-ray. After MRI, CT, PET, Biopsy of femur, and Bone marrow biopsy all within about 4 to 5 weeks. They told me I had MM igG kappa with a 1q+. M-spike was at 3.0 igG was 4241. Pet scan showed multiple bone lesions and liver lesions. I had 10 radiation treatments the end of January for the tumor on femur, was in sling for about 6 months due to bone being hollowed out by MM. It took till May to get cleared to do any kind of therapy to rehab it. Started treatments in Feb but due to not having insurance we just started with dar and Dex. Got insurance first if March. We added valcade and revelmed. All my MM numbers dropped m-spike got down to .26 and igG was 610 but the lesions on my liver have gotten worse more and they have grown, m-spike was slowly climbing to .46 and igG was up to 680. So first of August we switched to Kyprolis and revelmed(had just refilled) still with Dex and dar dropped the valcade. Then yesterday I started pomolyst dropped the revelmed. I will be having a biopsy on liver within next 3 weeks to determine if it has mutated from the original for of MM that was in my femur. If this line of treatment doesn’t work on the liver lesions then next step is car-T treatment. I actually started feeling pretty much normal in June for the first time since November. I think for me it was just getting back to doing all that I could versus just setting thinking I couldn’t do anything like I could before. There are things I cannot do like I did before MM but I can still do things just have to pace myself and know my limits(which I overdue sometime. Sorry this is so long been trying to get it posted for month or so. Just want to say Thank You to everyone who post on this forum. It has been very helpful in my journey. My greatest comfort in all of this is I know God is in control. Even though the outcome one day may not be what I want, I know it will be for His Glory and I get to set a example for my children to trust Him in good times and not so good times.