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lubbeyz
Multiple Myeloma Discussion • June 3, 2025
Experiencing Shortness of Breath Post-ASCT?
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Since my ASCT last August, recovery has gone very well. However, I've noticed shortness of breath, and I get winded more quickly while hiking or exercising than before ASCT. A cough comes and goes. I'm on a maintenance treatment of 80mg Kyprolis 2x month, and lenolidamide 3 weeks on 1 week off. Otherwise, just supplemental vitamins. Has anyone else experienced noticeable changes in lung capacity post transplant?
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aquaVulture
Multiple Myeloma Discussion • June 2, 2025
Applying for LTD for Post-ASCT Brain Fog?
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Has anyone had any experience applying for long term disability due to cognitive effects post autologous stem cell transplant? I am 4 and 1/2 years out. I still have brain fog days and no longer can effectively multitask. Concentration on complex tasks is also an issue. This has been pretty consistent since the transplant. Thankfully still in remission and am on no medications for the last two years.
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DavidO
Multiple Myeloma Discussion • June 2, 2025
Exploring Exercise Benefits Post-Treatment
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Get out there and exercise (after consulting with your doctor)! Now a world-first trial involving patients from the US, UK, Australia, France, Canada and Israel has found that a structured exercise regime after treatment can dramatically reduce the risk of dying, the disease returning or a new cancer developing. The results were presented in Chicago at the American Society of Clinical Oncology (Asco) annual meeting, the world’s largest cancer conference, and published in the New England Journal of Medicine. Patients who began a structured exercise regime with the help of a personal trainer or health coach after they completed treatment had a 37% lower risk of death and a 28% lower risk of recurrent or new cancers developing, compared with patients who received only health advice, the trial found. Asked to put the effect of exercise on cancer patients’ outcomes into context, Gralow said: “We titled [the session it was presented in] As Good as a Drug. I would have retitled it Better than a Drug, because you don’t have all the side-effects.” “It’s the same magnitude of benefit of many drugs that get approved for this kind of magnitude of benefit – 28% decreased risk of occurrence, 37% decreased risk of death. Drugs get approved for less than that, and they’re expensive and they’re toxic.” While this study followed only colon cancer patients, Gralow said there was no reason to think the findings would not be applicable across other cancers. Booth said trials for other cancers would be needed, but added that data from this study suggested there were lower breast and prostate cancer occurrences in the exercise group. Full article at the link below: https://www.theguardian.com/society/2025/jun/01/exercise-better-than-drugs-after-cancer-treatment-international-trial-finds
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DavidO
Multiple Myeloma Discussion • June 2, 2025
Sharing Research on Exercise & Recovery
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Get out there and exercise (after consulting with your doctor)! Now a world-first trial involving patients from the US, UK, Australia, France, Canada and Israel has found that a structured exercise regime after treatment can dramatically reduce the risk of dying, the disease returning or a new cancer developing. The results were presented in Chicago at the American Society of Clinical Oncology (Asco) annual meeting, the world’s largest cancer conference, and published in the New England Journal of Medicine. Patients who began a structured exercise regime with the help of a personal trainer or health coach after they completed treatment had a 37% lower risk of death and a 28% lower risk of recurrent or new cancers developing, compared with patients who received only health advice, the trial found. Asked to put the effect of exercise on cancer patients’ outcomes into context, Gralow said: “We titled [the session it was presented in] As Good as a Drug. I would have retitled it Better than a Drug, because you don’t have all the side-effects.” “It’s the same magnitude of benefit of many drugs that get approved for this kind of magnitude of benefit – 28% decreased risk of occurrence, 37% decreased risk of death. Drugs get approved for less than that, and they’re expensive and they’re toxic.” While this study followed only colon cancer patients, Gralow said there was no reason to think the findings would not be applicable across other cancers. Booth said trials for other cancers would be needed, but added that data from this study suggested there were lower breast and prostate cancer occurrences in the exercise group. Full article at the link below: https://www.theguardian.com/society/2025/jun/01/exercise-better-than-drugs-after-cancer-treatment-international-trial-finds
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KenC
Multiple Myeloma Discussion • May 31, 2025
Sharing My Hopeful 16-Year Myeloma Story
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When I was diagnosed with high-risk mutiple myeloma in October 2009, my hematologist said: “Don’t despair. There’s a lot of research happening. With a bit of luck you might benefit.” That was nearly 16 years ago. Since then I have been through 5 lines of treatment. The last one was CAR T-cell therapy in May 2022, 3 years ago. I’m still in remission & take no myeloma-specific medicine whatsoever. I’m totally back to where I was before the myeloma diagnosis in terms of physical & mental health. A few weeks ago I ran into the same hematologist who cared for me in 2009. She had moved on to other things & couldn’t quite place me. Then she saw my bike (I make a point of going to every hospital visit, even for treatment, by bike), and she remembered me. I reminded her of our conversation those many years ago & she gave me a big smile. It made my day. My wish for all of you is to receive the Big Smile from your healthcare professionals to help you along your myeloma journeys with confidence & hope. May we all enjoy the benefits of advances in myeloma treatment until a cure is found. It’s coming closer!