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Multiple Myeloma Discussion • April 1, 2025
Experiencing Fatigue That Prevents Work?
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I was diagnosed with stage III MM in 2016 at 58. The MM is high risk IgA light chain. After a stem cell transplant, I went into remission. Since then I’ve relapsed several times. The treatments have caused a level of fatigue that keeps me from working. I hear a lot of people with MM still work whether full-time or part-time. Does anyone else have this level of fatigue? I simply can’t handle a lot of stress anymore. Does anyone else experience this?
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Isaac
Multiple Myeloma Discussion • April 1, 2025
Venetoclax Maintenance Dosage Check-In?
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Hello, for those of you who are taking venetoclax for maintenance therapy, how many milligrams does your doctor have you taking everyday, and how long have you been taking it? I'm currently taking 400 milligrams/4 pills everyday, and have been doing so for about 4 months now. Just wanted to see if others are taking more or less daily. Thank you
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Sherry
Multiple Myeloma Discussion • April 1, 2025
Getting a Measles Vaccine After Transplant?
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I had a stem cell transplant in 2014. Was told after not get the measles vaccine because it was a live virus. Now measles are going around and was wondering if anyone has gotten the vaccine? Don’t know if I would have any immunity after having the transplant?
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NormaL1
Multiple Myeloma Discussion • March 29, 2025
Formulary Changes Mid-Year: Any Recourse?
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I am smouldering and not in treatment, but during open enrollment last year in the fall, I made sure the usual mm drugs were covered. Now I am finding the formulary is dropping drugs. These are unrelated to myeloma but I am upset to think they can do this during the year. Can they also drop some of the previously approved myeloma drugs? Would I have any recourse?
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MariaM
Multiple Myeloma Discussion • March 28, 2025
SSDI Application Experience for Under 55s?
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Hi all~ I’m wondering if anyone in the 55 & under group who has applied and received Social Security Disability would have the time &/or energy to talk with me about your experience. I just applied online in February. Thanks for your help!
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DIahanna • Admin
Multiple Myeloma Discussion • March 27, 2025
Navigating New Social Security Overpayment Rules
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New Social Security overpayment law goes into effect today. If you were notified by the Social Security office that you were overpaid you used to be able to repay the department at 10% per month until it was repaid. that is still ineffect for overpayments made prior to March 27, 2025. For Overpayments that occur after 3/27/2025, you will have to repay it 100% of payments until the overpayment is payed back. Over payments may have happened if the Social Security department miscalculated your payments or if you failed to update earned income with them. You can appeal the issue or if you agree and cannot afford to pay it back as stated, you can request a change in the overpayment recovery rate. Go to ssa.gov for more information
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Qunbin
Multiple Myeloma Discussion • March 27, 2025
Connect With Experts at In-Person Meetings
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Amyloidosis Support Groups In-Person Meetings https://www.amyloidosissupport.org/upcoming_events.html April 5th, 2025 (VA, D.C., MD) (Drs. Ibrahim Saeed, Timothy Welch, Sumeet Mitter, Farooq Sheikh, Joban Vaishnav, Ana Barac, Amitabha Sarma, Marion Cole, Carol Ann Huff,, Neeraja Tandra, Carmen Elena Cervantes, Robert Bulat) April 26, 2025 (PHILADELPHIA MEETING) (Drs. from UPenn and more to follow) April 26, 2025 (PORTLAND OREGON-OHSU) (Drs. from OHSU and more to follow) These are small and topic-targeted meetings, where you have the chance to meet with local experts and ask personal questions face-to-face. Also, a place to get to know your doctors personally! I highly recommend it to everyone. Register here: https://www.amyloidosissupport.org/upcoming_events.html
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Sally T
Multiple Myeloma Discussion • March 26, 2025
Webinar: My Story on Fighting Revlimid Denials
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On Wednesday, April 2, I am participating in a roundtable webinar with the Cancer Support Community on Utilization Management. We will discuss the recent prior authorization and formulary changes being used by insurers to delay or deny patients’ access to Libtayo or Revlimid. As I have recently experienced this denial of Revlimid, that will be my role on the panel. If you are interested, here is the link to sign up; https://events.zoom.us/ev/Aj20IEYrxUTUTJvmuZRZYoK0coIymO172n9rJbxSXr4y7Edaj4J9~AuKsJhJs6t_WcTqHERh5jfXlOUo0_ccTSEwY2RzY62ezzKufnBEdtv7wYQ?eType=EmailBlastContent&eId=117faff7-9e6b-4c66-a0ae-c1f626f9279e
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ChioOsuna
Multiple Myeloma Discussion • March 26, 2025
Hike & Wellness Challenge for Patients & Caregivers
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🌿 Patients & Caregivers – This Challenge is for You! 🌿 The HealthTree Challenge: Hike & Wellness is not just about hiking—it’s about overcoming obstacles, building resilience, and supporting blood cancer patients and caregivers. We’re looking for 50 participants to join us in this transformative experience—a weekend of connection, wellness, and physical challenge in honor of those impacted by blood cancer. 🎗️ If you’re a patient, caregiver, or supporter, this is your chance to: ✅ Take part in a wellness-focused event ✅ Hike with a team of fighters & advocates ✅ Raise $1,500 to drive critical support for patients & research 💙 Together, we can turn strength into action. Join us today! 🔗 https://give.healthtree.org/event/healthtree-challenge-hike-and-wellness/e663485?c_src=socialmedia #HealthTreeChallenge #SurvivorsAndCaregivers #StrongerTogether #HikeForACause #HealthTreeFoundation