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Suemcenteegmailcom
Multiple Myeloma Discussion • April 25
MRD- and 17p deletuion
Since I had a clean PET scan and I am MRD negative through my bone biopsy and blood work. does the 17 P deletion still apply to me?
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kenlevy
Multiple Myeloma Discussion • April 24
Patient Advocate Foundation (PAF)
Did you know that with TotalAssist, patients can use their grants for medication copays, coinsurance, and deductibles; health insurance premiums; office visit charges; and treatment-related administration charges? TotalAssist’s comprehensive approach reflects how patients actually experience care—and helps remove the financial barriers that often prevent or interrupt treatment. Join in at 1:00pm ET on Tuesday, May 12, to learn more about how TotalAssist can support you, your loved ones, or your patients during our free webinar, Empowering patients through financial help: Introducing TotalAssist.
Bactrim is given as a prophylactic antibiotic to prevent serious lung infections. Please share your experience with this drug, concerning its side effects and the fact that it can do much damage to the gut biome. I understand there are alternative antibiotics offered in difficult cases, and I'd appreciate it if anyone can share their experiences if they've tried those alternatives. I've been taking Acyclovir, an antiviral is also given as a prophylactic, for years without problems. But I'm concerned about the side effects of Bactrim. How have patients here been able to maintain their Bactrim therapy? I've read that alternatives to Bactrim could be Pentamidine, Atovaquone or Dapsone. Pentamidine is given by nasal spray and both it and Atovaquone do not appear to be too damaging to the gut biome. Has anyone here tried these alternatives? Any comments would be appreciated.
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XimenaG • Admin
Chronic Lymphocytic Leukemia Discussion • April 23
Share Your Experience in a CLL Research Survey
Every experience with CLL or SLL can make a difference 💛 HealthTree is partnering with Dr. Deborah Stephens from the University of North Carolina to better understand how different treatment approaches impact patients’ quality of life. This short survey explores real patient experiences with options like watch and wait, fixed duration therapy, continuous therapy, and chemotherapy. 🕒 Takes 15 to 20 minutes 💬 Share your experience 🔬 Help improve care for others 👉 Take the survey here: https://healthtree.org/cll/curehub/private/research/P5RRAR98W3AivMM7H3On
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ChioOsuna
Multiple Myeloma Discussion • April 23
Join us in our next event! Comment this post to send you the link.
✨ Discover the latest innovative clinical trials in multiple myeloma currently underway at Winship Cancer Institute of Emory University—and what they could mean for the future of treatment. 💬 Plus, stick around for a LIVE Q&A where you can ask your questions and hear directly from an expert in the field! 🌟 Don’t miss this chance to learn, connect, and stay empowered in your myeloma journey.
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Espitia
Multiple Myeloma Discussion • April 23
ASCT (Autologous Stem Cell Transplant)
What is the success rate, does it really add years to your life, and is it worth having this procedure. My Oncologist wants me to have this done in a few months.
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ChioOsuna
Multiple Myeloma Discussion • April 22
Join us in our next event! Comment to send you the link.
💬 Join our Non-Secretory & Oligosecretory Multiple Myeloma Community Gather 🤝 This special gathering is designed to bring together individuals living with non-secretory or oligosecretory multiple myeloma in a safe, understanding space. ✨ Connect on a personal level, share your experiences, and learn from others who truly understand what day-to-day life with this diagnosis can look like. 🌱 Whether you are newly diagnosed or have been living with this condition for some time, you are welcome here. ⚠️ Please note: This meeting is exclusively for individuals with non-secretory or oligosecretory multiple myeloma. If you’re unsure whether this group is the right fit for you, feel free to reach out at 📧 cynthia@healthtree.org 💜 We hope you’ll join us for this meaningful conversation!
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Donna
Multiple Myeloma Discussion • April 21
Supplements
I was just wondering if everyone that has high risk myeloma is taking supplements as well as their treatment. I have read about people taking them and it seems they are the people that are having the longest remissions. Anyone not taking any and still having a long remission with high risk Myeloma ?