Living with this diagnosis teaches you something very quickly: There are things you don’t get to choose. You don’t choose the numbers. You don’t choose the results. You don’t choose what shows up on a scan. And if you’re not careful, it can start to feel like you don’t get to choose anything at all. But that’s not true. Because there is still a place where our choice is fully ours. We may not choose what the test says. But we choose what we make it mean. We may not choose when we get checked. But we choose how we live in between. We may not choose what needs to be monitored. But we choose the relationship we build with our body. And that matters. Because there is a version of this path that is built on waiting, on scanning, on holding your breath between appointments. And there is another version. One where you live. Where you breathe. Where your life is not paused until the next result comes in. Not because you are ignoring anything. But because you understand something deeper: Your life is not in the test. It never was. So we come back here. Again and again. To the space where our choice still lives. In the thoughts we stay with. In the way we meet our body. In how we move through this day. And we protect that space. Because that is where life is actually happening. Not in the numbers. Not in the scan. Not in the next appointment. Right here. Where we still get to choose.

If this is not allowed please delete. A few months ago I started a podcast entitled “Through MYeloma Eyes” Here I talk about my stories, insights and lived experience from a myeloma survivor navigating life, identity and resilience. I invite you to have a listen via https://SolomonAlexis.podbean.com

FYA Antigen and FYA Antigen values Negative meaning

Have noticed, thanks to my Fitbit, my resting heart rate has lowered significantly since I started maintenance. Anyone else have this occurred?

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.

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

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! 😃

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?

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