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Giovinazzo61
Multiple Myeloma Discussion • March 6
CAR T failed
Hi to everyone, my name is Santa I am a caregiver for my husband he is 67year old, we live in New Jersey he got diagnosed in August 2024, with Kappa light chain with high risk cytogenic TP53 abnormality and 1q gain. in June 2025 did stem cells transplant failed in one month. November 2025 did CAR T (Carvicty) it’s been 3 months and his Kappa light chain went from 17.1 mg in February and in March 308 mg. Anyone had a similar experience failed CART in 3 months? What medications you are taking? Any bad side affects? I just want some quality of life for my husband. I appreciate any advice. I feel like having a second opinion from another myeloma doctor.
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chocolateKitten
Multiple Myeloma Discussion • March 6
Managing Care With Multiple Diagnoses?
I turned 40 in 2016. That same year I was diagnosed with a myeloproliferative neoplasm (MPN) with a Jak2 mutation. In the years that followed I have been diagnosed with Multiple Sclerosis and Smoldering Multiple Myeloma. I'm wondering if anyone else has experience, and some advice, for balancing their treatments and care for a variety of chronic illnesses.
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chocolateKitten
Polycythemia Vera Discussion • March 5
Introducing Myself: PV with Jak2
Not sure if anyone actually participates in this group since I see the last post was in July so I guess this is me attempting to connect. I'm a 49 year old woman who was diagnosed with the Jak2 mutation back in 2016 when routine labs came back with barely elevated platelets. Since then I have added a few more diagnoses to my list. Wondering if anyone else has experience balancing their treatments and care for a variety of chronic illnesses. Thanks
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Karen
Multiple Myeloma Discussion • March 5
Bone Marrow Biopsy results
I finally received the last report. All results were pointing to mrd negative until the last one. The one that digs the deepest. I am just above the cut off. So still in a deep remission but not Mrd negative. I was given a few options. 1 - continue with 10 mg lenalidomide 21 days on and 7 off. 2 - drop to 5 mg instead of 10 to help lower some side effects and secondary cancer risks. 3 - add darz shots once a month to try to push me to the negative. I hear that sometimes it will get there on its own with the maintenance med. I am three years post stem cell transplant. Kappa light chain 11:14 trisomy 9. I am taking some time to digest this. Looking for any advice. Thanks!
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Donna
Multiple Myeloma Discussion • March 5
Navigating a Medication Stop
So I had to stop taking my medication for a month so I could get my T cells harvested for car t. I’m a bit worried because I just had bloodwork done after the month and my kappa is normal but my lambda is low and my ratio is high. (4.9) I know that the ratio is the most important. I started my venetoclax back up today and will take the pomolyst tonight. Should I be worried
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XimenaG • Admin
Multiple Myeloma Discussion • March 3
Run Global Marathons to Fund Research
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Playlist: Graft vs Host Disease

What are the latest research advancements and future directions in managing graft versus host disease in acute myeloid leukemia patients?

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