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sapphireFly
Multiple Myeloma Discussion • May 24, 2023
Bridging to CAR-T: Best Drug Options?
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I am about to collect my cells at City of Hope this coming Tuesday. I'm curious what people/doctors think is the best bridge drug while the cells are being altered? Part of the challenge is; I'm reading it takes 4-8 weeks, and occasionally, the process fails and you have to start over.
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pmfkelley33
Multiple Myeloma Discussion • May 24, 2023
Tips for Guiding New Members to Join Healthtree?
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Is it just me or does anyone else find it difficult to tell coachees where to sign up and join healthtree? Maybe I can't see it, as I am already signed up and the system recognizes me as being signed up. I have had friends with MM (not coachees through HT) who have gone to the site, and simply signed up for the email subscription but that is it. Is Healthree tracking the number of new members, and considered making the sign up more navigable? I would appreciate any tips or comments.
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pmfkelley33
Multiple Myeloma Discussion • May 24, 2023
Navigating Healthtree University: Any Tips?
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Is it just me or does anyone find Healthree University hard to navigate. I know its under Apps, but can coachees and the average Joe find it. Then when there how to find the videos on the drugs and experts? It now seems to be focused just on a few basic courses. Again, if I am a coach, and find it hard to navigate, how do we expect coachees and members to? I would appreciate any tips or comments.
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Glyndon
Multiple Myeloma Discussion • May 24, 2023
Experiences With Dara, Pomalyst, and Dex?
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Hi, all, I am about to start my third round of treatment. Have been in remission from Sept 2020 and just zoomed into relapse. Previously, RVD & SCT in 2014 and KPD in 2020. Got along well with those though final higher dose of Kyprolis was challenging. I have not been on maintenance. Dr. is recommending Dara, Pomalyst and dex. Any comments on this mix? Thanks in advance.
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Qunbin
Multiple Myeloma Discussion • May 22, 2023
Choosing Immunotherapy Instead of SCT?
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Hi everyone, as we learn more about the new drugs available to BETTER treat myeloma, I wonder how many of us choosing or going to consider to continue immunotherapy of resistant and or refractory myeloma, instead of going for SCT?
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kittyhawkes
Multiple Myeloma Discussion • May 21, 2023
Sun Protection & UPF Clothing After Transplant?
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I read that as a post-transplant MM patient I am now very susceptible to secondary cancers with melanoma being high on the list. Summer and sunshine has arrived and I long to be in the sun but am now scared. Does anyone know if clothing that touts built-in sun protection really works?
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Qunbin
Multiple Myeloma Discussion • May 21, 2023
Connecting With Others on AL Amyloidosis
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I feel I am a rarity with AL Amyloidosis in this community; I love to connect with anyone who shares the same journey with me; how is your heart? How are you treated? Most importantly, how are you feeling every day?
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Monikarobinson111
Multiple Myeloma Discussion • May 20, 2023
Starting My CARVYKTI Journey
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Very excited about being part of a CARVYKTI CAR-T procedure here at Phoenix Mayo -had the T Cell collection April 28- went smoothly and now they are growing them in NJ should be ready mid June
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Emdition
Multiple Myeloma Discussion • May 19, 2023
Experiencing Low BP After SCT?
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I had a SCT on 03/31/23. Since then I have struggled with low blood pressure and accompanying dizziness. I’ve been home since 04/13/23. I’m doing well otherwise and have been feeling overall good. I asked my Dr about the BP and she said it’s normal, but didn’t elaborate more. It is now the middle of May and I’m still consistently having BP’s around 90/60. Has anyone else dealt with this, and if so how long did it last? (On a side note, I drink a ton of water)
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dooley628@sbcglobal.net
Multiple Myeloma Discussion • May 17, 2023
Pacemaker Questions: Treatment & MRIs
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Hi I was diagnosed with MMin 2015 with Igkappa myeloma. I have had 2 SCTs and have gone thru several treatment regimes with krypolis/dex being most recent. That was working for me and I decided to have Carvykti therapy July 2022 and am currently in remission. Recently I have been experiencing some dizziness with one episode where I lost consciousness for 30 seconds my primary recommended I wear a heart monitor and it recorded I had 1 episode of my heart pausing for 30 seconds a couple of times. But this episode occurred on the same day I had forgotten to take bp med and took it later in the day and then at my usual time in the morning the next day. 50 mg. Metropolo. So was referred to electrophysiology cardiologist and he wants me to get a pacemaker. Does anyone have experience with pacemaker? How does it affect your treatment? Can you get MRIs?
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amgucci
Multiple Myeloma Discussion • May 16, 2023
Experiences with Teclistamab Long-Term?
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Has anyone had Teclistamab therapy? I have to make a decision soon and I know about the initial first round treatment. What I' am interested in is the experience later on after several doses. Really need to get feed back to make a major decision. I have been in treatment for almost 9 years and have had several treatment types. My current treatment is Selinxor but I cannot stand it after 9 months.
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indigoDingo
Multiple Myeloma Discussion • May 16, 2023
Bone Med Options for High ONJ Risk?
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Hi, I am very new to the world of multiple myeloma and have just gotten a positive MGUS result, but no further testing at this point. Because I am also newly diagnosed with osteoporosis, my doctor wants me to take bisphosphonates. I have Achalasia (disorder of the esophagus) and so cannot take oral treatment--and must have an infusion. I also have Ehlers-Danlos Syndrome (a genetic connective tissue disorder) and so have continuous, chronic dental problems and poor healing. My dentist (and oral surgeon) do not think I should take Reclast because of my high risk of osteonecrosis. I also have Leiden V Factor which makes me prone to blood clots. None of my doctors seem to know what medication I can take with the lowest risk of osteonecrosis. I currently take a calcium and mineral supplement (AlgaeCal), but don't think it will be enough. Does anybody have a suggestion for what I can take with the lowest risk of osteonecrosis?