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Pearlcoo03
Multiple Myeloma Discussion • March 28
Duffy null phenotype
FYA Antigen and FYA Antigen values Negative meaning
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KB2025
Multiple Myeloma Discussion • March 27
Heart rate
Have noticed, thanks to my Fitbit, my resting heart rate has lowered significantly since I started maintenance. Anyone else have this occurred?
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tarzannojane
Multiple Myeloma Discussion • March 26
Anybody elso out there with HIV and MM?
HIV+ for more than 30 years, with undetectable status thanks to ART. Dx of Stage 1-2 IgG lambda MM t(11;14) 18 months ago. Responding, although slowly, to Venetoclax/Dara/dex therapy for past 6 months. M-Spike down to 0.7, and recently increased Venetoclax daily dose to 800mg (up from 400mg). Tolerating this regimen fairly well. Very interesting science with respect to B-cells, T-cells, BCL2 and the connections between HIV and MM. Have not encountered anyone else with HIV despite numerous inquiries in support groups & forums, specialists at UTSW and Mayo.
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azureAnemone
General Discussion • March 26
M-Spike % is rising
My M-Spike % a few months back began to rise from 0 beginning at: 2.7%, then 3.5, 4, 4.2, & currently at 5.3%. I'm on Dara once per month injection only. I immediately contacted my Doctor who advised me to continue thru my 6 month therapy regimen, & then meet in April. Is 5.3% considered alarmingly high? Also, how do you go about discussing changes in therapy? I've had a Stem Cell Transplant in 2021 that didn't reduce the cancer. Any advice would be greatly appreciated. Ken
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TannerT • Admin
Multiple Myeloma Discussion • March 26
NEW HealthTree Platform is Coming/Update on Groups
Hi, I’m product manager here at HealthTree Foundation. Our team has been hard at work, and we are excited to be releasing a new platform to better help our users find content and discover our tools on the HealthTree platform. We anticipate launching early May. Some of you may have noticed many of the Connect groups are no longer appearing. All posts in these groups should now be under the general discussion group. Thank you for your patience while we make this transition! Additionally, we plan to open up testing on the new platform in the coming weeks. If you are interested in being one of the first to test out the platform, please leave a comment, and we can let you know when it's available for testing. We look forward to this next step at HealthTree! 😃
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Ktimb
Multiple Myeloma Discussion • March 26
Talqutamab + Dara
Hi all, My husband is going on 4 years since being diagnosed. Myeloma attacked his kidneys when he was diagnosed and was in renal failure. They missed it with Covid. The great news is after dialysis for months and then healing, his creatinine is in the normal range now. A true medical miracle. He has two types 414 and another mutation. He had a stem cell that lasted 7 months and car-t that lasted 4 months. Both difficult treatments. He always remains so positive. He has been on a combination of Talq * Dara and he has a fantastic Dr at Cleveland Clinic. Dr Jack Khouri. He is the absolute BEST. Treatment has worked but has come at a huge cost. His nails are deformed and he hasn’t been able to taste in 2 years with the exception of orange Crush. Is anyone else on this combination and what side effects have you experienced?
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3sisterskaye
Multiple Myeloma Discussion • March 25
Can’t find other groups I have joined.
I had joined about 5 different groups. On this discussion but now the only one that shows up is newly diagnosed and others that I didn’t join. One I joined was relapse myeloma. Side effects Cant remember the rest but they aren’t there when I look at groups I’ve joined. Anyone else have this problem? Thank u