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Iliana • Admin
Multiple Myeloma Discussion • November 27, 2024
Online Yoga Study for Myeloma Symptoms
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Researchers at the University of Arizona are conducting a national clinical trial to determine whether yoga can improve the physical 🏋️‍♂️ and mental 🧠 health of myeloma patients. This study aims to assess how yoga affects symptoms like pain 🤕, fatigue 💤, anxiety 😟, and overall quality of life. Patients on active treatment can join weekly online yoga classes 🧑‍💻 and track their progress 📊 to help determine the benefits of this practice. While HealthTree will not be facilitating this study, we recognize the importance of physical activity 🚶‍♀️ within the myeloma community and wanted to share this exciting research opportunity with you. Learn more here: https://buff.ly/4eVRhJu
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RickJ
Multiple Myeloma Discussion • November 27, 2024
Managing High-Risk 17p Without An SCT?
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People with 17p (TP53) R-ISS stage 3, how has your life been since diagnosis. I am 68, was diagnosed 9 months ago did not do the SCT and have responded well to treatment so far. Am now on maintenance. I have 37% involvment of 17p (TP53), I also have 4p16 (3 copies) in 69%, 11:14 in 73%.
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alexandra.sazonova.prokouran@gmail.com
Multiple Myeloma Discussion • November 26, 2024
Connecting Dara Reactions and High PTH?
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Has anyone experienced or heard of severe reactions to daratumumab? During recent chemotherapy, I had a severe reaction with nasal swelling/ angioedema and pain, making it impossible to continue treatment, along with significant nausea. Three months ago, I had blurry vision for five hours after another reaction. My recent tests show elevated parathyroid hormone (PTH) levels, and I’m unsure if this is related. I also had persistent jaw pain that resolved after removing two dental implants. Could these issues be connected? Any advice would be greatly appreciated!
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TimJohnson
Multiple Myeloma Discussion • November 26, 2024
Studies for Good DVRd Response, No ASCT?
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Are there any clinical studies for newly (recently, as in February 24) diagnosed MM patients who responded really well to DVRd and are NOT proceeding to ASCT?
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Long4Tahoe
Multiple Myeloma Discussion • November 25, 2024
Experiencing Kyprolis Side Effects?
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Would like feedback on Kryprolis treatment journeys. I have low risk multiple myeloma, but my numbers have been creeping up which means my immune system is crashing down. Doc wants me to do Car-T Cell Therapy which I am in agreement with. In preparation I started carfilzomib a bit over 3 weeks ago. First infusion was a half dose, along with an anti nausea and dexamethasone. Handled well. Second infusion was full dose with Dex, I was okay that day, day two felt like I was coming down with the flu, day three and four slept, could hardly eat. Day four spiked a 101+ fever that broke after a few hours. Day five I feel like I'm coming alive again but I'm weak. Just had a repeat with my third infusion and feel even weaker than I did last week. My hemoglobin is down to 7.9. Not too bad but low. Is this anyone else's experience? Thank you!
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Dawnmjo
Multiple Myeloma Discussion • November 21, 2024
Can Re-Vaccinations Impact FLC Levels?
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Hi, I am 14 months post AST and have recently started the re vaccination process. I was wondering if that can impact your bloodwork specifically Kappa Lamba FLC? Thanks
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DIahanna • Admin
Multiple Myeloma Discussion • November 21, 2024
Navigating 2025 Revlimid Coverage Changes
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Hello Everyone, Please make sure you check your Medicare Advantage plans and stand a lone Part D. Most of these plans will no longer be covering Revlimid or Lenalidomide for 2025. This is presenting a problem for many Patients. Speak with your doctor to get exceptions. Check your other medications as well.
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Iliana • Admin
Multiple Myeloma Discussion • November 20, 2024
MagnetisMM Clinical Trial Info
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About 35,000 people will be diagnosed with multiple myeloma in the US this year. Consider joining a MagnetisMM clinical trial, for people with both newly diagnosed and relapsed/refractory multiple myeloma.      For more details about Pfizer’s MagnetisMM clinical trials, please visit: https://bit.ly/3ZfzQOF
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Foxy55
Multiple Myeloma Discussion • November 20, 2024
Interpreting a High K/L Ratio With MGUS?
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I was recently diagnosed with MGUS. My kappa reading was 55.592 mg/dl. My lambda was 3.89 mg/ml (0.389mg/dl)which gives a ratio of 142.91. Should I be overly concerned at this stage? This is all new to me so I'm somewhat worried. I had 3 covid 19 jabs in 2021.