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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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DIahanna • Admin
Acute Myeloid Leukemia Discussion • January 21
Financial Assistance grants
Please review grant opportunities to help you cover copays, deductibles coinsurance and out of pocket expenses. Go to the financial resource site. Check back often as they open and close often
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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.
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Isaac
Multiple Myeloma Discussion • January 18
Using AI to Interpret Lab Results
If you're like me, when I was diagnosed, I would get really anxious about my lab results. Often times my medical team wouldn't take the time to explain to me everything, or I would get the lab results late after I had already left their office and wouldn't know what they meant (e.g. why a certain number was low, high, or abnormal). This often resulted in me frantically googling things to try and make sense out of the copious amount of medical jargons. As a result, I would grow more anxious after reading all the negative possibilities about my lab results on Google. Enters AI/Chat GPT: I can honestly say AI, and Chat GPT in particular, has really been helpful in helping resolve this problem for me. I'm able to copy and paste my lab results (while omitting my personal information), into Chat GPT, and within seconds it spits out very detailed interpretation of my labs including suggestions and recommended questions for my medical team. It mains a history of my treatment records based on the data I've fed it thus far, and based on this, it is able to provide encouraging analysis such as whether my disease behavior is typical/expected at certain phases or due to certain treatments; recommended treatment options based on my disease traits, and possible outcomes; how soon I expect improvement of certain numbers, etc. The thing is phenomenal; it's like having my on little personal doctor at my fingertips. And what I love most about it is that it explains things using a very encouraging and empathetic tone; I no longer get the doom and gloom tone that I was getting when I would Google things before. This has significantly helped with my anxiety and has improved the the way I feel about my disease - I am more hopeful and I am able to confront my lab results with confidence and optimism. Granted, I'm aware of the fact that AI can be wrong at times, so I always make sure to cross reference it with my oncologist, and so far everything has been on point. For example, I was a bit skeptical when my oncologist was refusing to change my bridging therapy going into my Car-T given the fact that my M-spike and IGA were increasing rapidly with the bridging therapy I was on. I wasn't getting much explanation from my oncologist aside from him telling me to continue to take the same meds. But when I put my M-spike, IGA, and bridging medicine data into Chat GPT, it was able to explain to me in detail why my oncologist was insisting on keeping on the medication despite my numbers increasing; why this was a good call by my oncologist; and why I shouldn't be concerned because even though my numbers were rising, they were still considered within the normal and safe range for going into Car-T. As a result, I stopped sending frantic messages to my medical team, and sure enough, I underwent Carvykti Car-T on 5 January 2026, and everything has so far gone very smoothly (no CRS, just low grade fevers two times, and no neurotoxicity), and I'm scheduled to for discharge tomorrow. I apologize for the awfully long length of this message, but I just wanted to share my experiences with AI, and how it has significantly improved my ability to interpret my lab results on my own, as well as helped me look at my disease journey positively while reducing my anxiety. I hope this will encourage others to use AI/technology to better manage this difficult journey, if they already haven't done so. Thank for taking the time to read, and I would love it if you can also share your experiences with AI in managing your diseases.
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shaila02784@yahoo.com
Multiple Myeloma Discussion • January 18
HRT vs Herbal Supplements for Menopause
After my CAR T in Feb 2025, I went to menopause at the age of 41. My gynecologist is a bit hesitant to put me on HRT due to blood clot and gynecological cancer risks. My symptoms are primarily hot flashes, night sweats and low energy level. My gynecologists suggested few supplements to manage hot flashes and night sweats. Wondering if anyone tried any supplement or anything else and found relief from these symptoms? Thank you in advance.