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DEVYANI (Aditi)
Multiple Myeloma Discussion • January 25, 2024
Suggestion: A Search Function for Posts
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It would be really nice if there was a search function for these posts so we could look up if a question or concern has been raised before and what the replies were. Will also help to build on earlier discussions Just my two cents
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Ktimb
Multiple Myeloma Discussion • January 25, 2024
Starting Talquetamab: Any Experiences?
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My husband was diagnosed with multiple myeloma two years ago at the age of 57. He was in great health prior to that. His cancer is a very aggressive form. When he was diagnosed, he was in renal failure. After undergoing 3 months of dialysis, his kidneys have recovered better than they hoped. He has since gone through a stem cell transplant, car-t transplant 5 months ago. That was preceded by a round of 96 hours of chemo. He developed CRS a few days after Car-t that landed him in ICU. This past week, just 5 months after car-t, they found myeloma cells. We were hoping to get more time out of it but it’s a cancer that is relentless. We are fortunate to have a great Dr at the Cleveland Clinic and my husband has a great attitude. He is such a fighter. They are going to do a newer treatment that involves a hospital stay of 10 days due to FDA requirement. It’s 4 shots over 10 days with a omnew med called “Talquetamab”. Has anyone had experience with that treatment? We are hoping this is the miracle drug for him. We are staying positive.
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NKP64
Multiple Myeloma Discussion • January 24, 2024
Clarifying R-ISS Staging With 1q Gain
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Hello everyone. My father has been diagnosed with MM recently. I am very confused with the stage of MM he is in The reports states that S beta 2 microglobilin @ 4.58 Serum albumin. @ 3.6 FISH analysis : 1q gain and not amplification While I have researched a lot and according to me as per R ISS , this should be stage 2 But the doctor in one prescription mentioned stage 3 as he said 1q gain is still a high risk. I dint want to argue with the doctor here as he is treating my father but such mentions might disrupt someone mentally as well. Could someone suggest what should I consider his stage to be? Many thanks
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emeraldLobster
Multiple Myeloma Discussion • January 23, 2024
Finding Strength and Answers Within
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Never give up on yourselves. If the process can't find a way, search for a way and never give up on yourselves. Sometimes the answers or the clues to the answers come from within.
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salmonWhale
Multiple Myeloma Discussion • January 23, 2024
Sudden Kappa Spike for a Non-Secretor? Any Insights?
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Greetings. Subject: sudden increase of Kappa light chain in blood serum. I've had non-secretory myeloma now for ten years, and I have been in remission most of the time while taking Kyprolis, which I've been taking for the last 9 years, except for the last 15 months, in which I've been taking an alternative medicine and no other cancer drug or supplement. A bone marrow biopsy about a month ago could detect no cancer, by microscopic evaluation (no Minimum Residual Disease testing). I get blood tests every two weeks and the last measurement shows my serum Kappa free light chains to be 30.7 mg/L. This is surprising because as a non-secretor, my light chains have always been in the normal range (from 3.3 to 19.4). If this is a sign of relapse, my guess is that the cancer clone has changed to a different kind of myeloma that is not non-secretory. It's a bit complicated, because in the last month, my Immunoglobulin A, G, and M, which had been below normal for many years, are now in the normal range. This last fact makes me wonder if my immune system is now finally recovering from the damage done to it by my cancer medications. Or, is the Immunoglobulin response also a sign that I'm experiencing another kind of myeloma cancer clone? My hopes are of course that even the elevated Kappas are an indication that I'm returning to normal, as my immune system goes through adjustment. I agree that it's probably too early to tell, but my main question is, how common is it for Kappa light chain levels to pop a little above the normal range and how concerned should I be? The Kappa/Lambda ratio, which had always been in the normal range is also slightly elevated to 1.85 (normal is 0.26 - 1.65). Have other non-secretors here experienced a clonal change to a cancer that deposits light chains in the blood serum?