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ChioOsuna
Multiple Myeloma Discussion • April 10, 2025
Sharing Your Story: Macon Panel Opportunity
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📢 Join Us for an In-Person Event in Macon! We’re hosting a special event on Saturday, May 31st, to educate and connect blood cancer patients with valuable resources in their community. 💙 We’re looking for patients and caregivers to participate in a 30-minute panel discussion alongside others. We'll provide everything you need—just bring your experience and willingness to share! 💬 Want to be part of the discussion? Comment below or reach out to rozalynn@healthtree.org to participate or learn more! #BloodCancerCommunity #Support #Education #Connecttocures #HealthTree
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1finegrandma
Multiple Myeloma Discussion • April 10, 2025
Deciding Between Kyprolis and Velcade - Thoughts?
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I have been receiving Darzalex Faspro shots since November 2024. I am not happy with the results. I am currently taking Pomaylst 3mg too. It dropped my m-spike by 25% and cut my Lambda Light chains in half but they are still elevated. My last blood test showed a drop in my Kappa light chains to the point of them being low. My specialist is ok with a wait and see approach I don't think I am. I am considering switching out the Pomalyst for either Kyprolis or Velcade. I have been on Kyprolis before and it did work and realize it is an infusion. I would like to be on the most effective but yet least cumbersome treatment and of course the least side effects. My understanding is the Velcade is weekly shots where the Kyrpolis is 3 weeks on and 1 week off. Any thoughts?
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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!