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DIahanna • Admin
Multiple Myeloma Discussion • April 10, 2025
Sharing Info on Social Security Notice Glitch
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Be aware of a supposed incident with the Social Security Office. If you received notification that your social security benefits are being terminated, according to the Social Security Administration, it is an error and glitches to the system. They said they are trying to update their technology. You can try calling the Social Security office to confirm when you will receive your benefits but know that you may have a long wait on the phone trying to reach anyone. Be patient and Keep trying.
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bkeane415
Multiple Myeloma Discussion • April 10, 2025
Zometa Reaction: Experiencing Severe Hand Pain?
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Zometa- wondering if anyone has had an adverse reaction upon receiving their first IV infusion. The day after I received the medication, I had hand pain at the thumb joint better known as the CMC joint. The pain was not relieved with Tylenol. The third day my hands were red, swollen, tight and I had limited movement. The pain was excuritating. I was told by my oncologist to take Tylenol and Claritn. Neither helped. I contacted my primary MD the next day and he prescribed prendisone. It took two more days on the steriod to get rid of the pain and swelling. It is now day 8, and I now have intermittent pain in both joints. I definitely had an adverse reaction.
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DIahanna • Admin
Multiple Myeloma Discussion • April 8, 2025
Heads-Up: Pomalyst Costs & A Potential New Tax
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Hello Everyone, What a difference a day makes!! or an hour.... OK, the latest. There are several drugs on the list coming up effect 2027 for cost reductions Pomalyst is one of them. For those of you who are covered under a employer group plan be aware. There is a possible upcoming proposal that may hit Congress that employer provided healthcare be taxed. Meaning, the employer paid part of the premium may show up as income to you, therefore taxed. I will keep you updated.
Thumbnail for BETA - How does the bone marrow (immune) microenvironment effect myeloma therapy response? How does the microenvironment influence myeloma cells growth, prognosis and treatment resistance?
Playlist: Understanding the Microenvironment

BETA - How does the bone marrow (immune) microenvironment effect myeloma therapy response? How does the microenvironment influence myeloma cells growth, prognosis and treatment resistance?

Video details & playlist
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MCoste
Multiple Myeloma Discussion • April 8, 2025
Mushroom Supplements & Chemo: Any Experiences?
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55yo IgG Kappa Refractory in C3W2 of D-kpd Consolidation Therapy. I recently purchased a tin of Mud/WTR and I've been drinking a serving each morning for about a week now. I add a ¼tsp of dark cacao, some coconut oil, a small blob of honey, and a small splash of grass fed whole milk and I love it. I had some questions for my Oncologist and just threw in this info on the MyChart for grins to get he opinion. She said she wouldn't recommend it as there isn't much known about the mushroom extract and chemo drug interaction. Has anyone else tried this beverage and had any issues? It's only been a week that I've been drinking it and I've felt really good with no noted side effects, but I'm generally not one for pushing boundaries!
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DavidO
Multiple Myeloma Discussion • April 8, 2025
A Tip on Measles Post-Exposure Protection
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Just a word about measles: as cases rise, it’s important for immunocompromised patients to remember how easily it spreads. An infected person who coughs or sneezes can expel droplets that remain suspended in the air for up to two hours. Unfortunately, a person with measles can spread the virus to others from four days before the rash appears (before they even realize they are sick.) Since the MMR vaccine is a live vaccine, many of us cannot receive it. A past case of the measles or vaccination for measles (especially after 1968 when live vaccines were used) should still give some amount of protection. However, this is something I didn’t know: “If you think you were exposed to measles…, Immune Globulin (Ig) treatment is effective *within six days of exposure* for high-risk individuals.” I hope none of us are ever affected, but it’s nice to know there might be a treatment available if we are. https://www.michigan.gov/mdhhs/inside-mdhhs/newsroom/2025/03/14/first-measles-case-in-the-state-confirmed-in-oakland-county
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XimenaG • Admin
Multiple Myeloma Discussion • April 8, 2025
Share Your Voice on MRD & Help Shape Future Care
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Help Shape the Future of Myeloma Care, Share Your Voice in a 10-Minute Survey. Be part of a patient-centered study led by Dr. C. Ola Landgren (University of Miami) exploring how multiple myeloma patients view MRD negativity as a marker of treatment success, its role in treatment success for access to new therapies, and its role in clinical trial design.  Your insights are vital to advancing care and making sure the patient's perspective is heard in research and regulatory decisions. Every voice in our community matters, and your participation could make a real difference in how we support blood cancer patients! Ready to contribute? Click here to take the survey: https://healthtree.org/myeloma/curehub/private/research/RxT3lYUKSbJuAqArLtdM?utm_source=social+media&utm_medium=connect&utm_campaign=mrdperception&utm_content=general If you’d like to learn more about MRD, you can check out an article published in March 2025. https://htree.org/MDRarticle2025survey
HealthTree

HealthTree

https://healthtree.org/myeloma/curehub/private/research/RxT3lYUKSbJuAqArLtdM?utm_source=social+media&utm_medium=connect&utm_campaign=mrdperception&utm_content=general