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Molly
Multiple Myeloma Discussion • January 23
Sharing My Recent SCT Experience
Hi, I had a SCT September 24 and since had clear bone marrow biopsy June 24, clear scans in November 25 and clear bloods in Jan 26. I have started to have a sore leg and just wondering has anyone else had clear results and still had myeloma active. I a bit paranoid! Thank you
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RobinsonD
Multiple Myeloma Discussion • January 22
Decision to make
Hi everyone, first time here in this link. I was diagnosed with Multiple myeloma in Dec 2024 and have been in treatment since then. I first started with the 4 drug treatment in February 2025 (daratumumab (Darzalex), bortezomib (Velcade), lenalidomide (Revlimid), and dexamethasone (Dara-VRd). Everything was working good and i did not have any side effects, but in april we had to take velcade off due to a rash. Then i did my stem cell harvesting but did not do my transplant as my numbers went from 45 percent cancer cells to 1 percent. I then continued with the maintenance of dara and dexmathasone, revlimid. we did a biopsy and pet scan in december of 2025, my pet scan came back great with no active cancer, but my biopsy came back that my numbers went back to 10 percent. We are starting a new treatment next week of carfilzomib and pomalidome. Dr is telling me that i should really think about doing the stem cell transplant as we already have the good cells stored. i want to hear from everyone here, what are your thoughts and experiences about the stem cell transplant and is it worth it as i am 62 years old at the moment. please let mek now your thoughts and experiences of your stem cell transplant. Thank you !
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copperGiraffe
Multiple Myeloma Discussion • January 22
Zometa
Hello friends Anyone receiving Zometa infusions and how often do you get it . I’ve read different articles , I get it every month but recently read it should be given every 3 months . Thanks , Linda
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MRDMS
Multiple Myeloma Discussion • January 22
Making Sense of My FISH Results
t(11;14) : 28% cells Monosomy 13 : 30% 1q gain : 5% cells MYC translocation t(8;?) : 15% cells 17p deletion (TP53) : No 1p deletion : No Hyperdiploidy : No This report is in Standard risk. Intermediate risk or high risk ?
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HipsterGranny1960
Multiple Myeloma Discussion • January 22
Multiple Myeloma and Medicare advice
Hi. I just turned 65 and up until a few days ago, my husband had a great job and we had great insurance. Then he got laid off. I am scrambling to figure out my Medicare option before 2/1/26 as I have my infusions, etc next month. I spoke with Social Security and since my birthday was literally a month ago, I will face no penalties, but I don't know what plan to get. Someone said Plan G was the best, but with what company? And the Part D is totally crazy. Currently I'm on lenalidomide. Some plans have zero premium and seem to cover it and some have a huge premium and seem to cover the same. Help! Any insight anyone has regarding this would be so appreciated. I am hyperventilating with anxiety about this. Thank you!
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CarlWLarsenJr
Multiple Myeloma Discussion • January 21
MajesTEC 7 Clinical trial
Hi I am about start drug therapy under the MajesTEC 7 clinical trial . Anyone have experience with the financial responsibility under United Healthcare and Medicare Advantage.
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HDurf
Multiple Myeloma Discussion • January 21
CAR-T recovery
Anyone else having difficulty getting their CD4 T-cells above 200? It’s been 8 months and mine are still below 200. Also platelets, lymphocytes, neutrophils, are all low. Any tips to help these numbers rise?
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gknautz
Multiple Myeloma Discussion • January 20
Understanding Paraprotein Levels in SPE Results?
Hi All, this is a very good discussion board and thanks for everyone's insights: Question: I have been getting routine labs for over a year and within my SPE results there has been my paraprotein levels (0.1, 0,2 and once 0.4) my latest results did not report any paraprotein. Does this mean it wasn't ordered or there was no paraprotein in blood. I am hoping for the later.