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chocolateAnemone
Multiple Myeloma Discussion • August 15, 2025
A Tip for Managing Your Records on Healthtree
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Remember to give permission for your medical records to be downloaded automatically to Healthtree (the data will be all in one place for you, and made anonymous for researchers. One of my medical centers requires renewal every three months so I put it on my calendar. Yesterday I had difficulty with one, contacted staff through the chat box and she came up with a work around for a place that requires two step authentication. Shout out to Maru! She is ALWAYS helpful and positive.
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Cmckee68
Multiple Myeloma Discussion • August 15, 2025
Managing a New MGUS Diagnosis and Fear
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Hi new to this early stages of Mgus M protein high and lots of other things cdk3 trying to eat like Dr said and walk at least 5 days a week helps me a lot just scared!
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DIahanna • Admin
Multiple Myeloma Discussion • August 14, 2025
Copay Funds Open for Amyloidosis, Lupus, Asthma
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CPR Funds Now Open: Lupus, Amyloidosis, Asthma The specific eligibility criteria for each fund can be found at https://copays.org/funds/. For personal assistance with the application process please contact us toll-free at 866-512-3861 or visit our application portals at https://portal.copays.org/#/login, with access available for patients, providers, and pharmacies.
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Pauline
Multiple Myeloma Discussion • August 13, 2025
Starting Krypolis, Sarclisa, Dex: What to Expect?
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I have a 66 year old coachee (diagnosed in Apr. '24)that has relapsed and will be starting Krypolis, Sarclisa, and Dex. She is apprehensive about the new treatment and what to expect. She has some significant neuropathy and is taking B12 injections and magnesium. I have no personal experience with this line of treatment and some of the information I found here on Healthtree seemed pretty technical. If anyone has personal experience or suggestions for reading I would appreciate you sharing. I didn't want to overwhelm her. Thanks all!
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Annmae
Multiple Myeloma Discussion • August 13, 2025
Managing Smoldering Myeloma Anxiety?
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I’m newly diagnosed with smoldering multiple myeloma last week. I’ve been through a myriad of testing and have a M spike that is riding too quickly I’m told. This is incredibly nerve wracking like I’m a ticking time bomb.? How do you handle this ?
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violetDingo
Multiple Myeloma Discussion • August 13, 2025
Getting an MRI for Peace of Mind
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I am getting an MRI at the end of this month as about 13 years ago the Dr. said I was ok and then I had an MRI and I had multiple Myeloma. My new cancer Dr. says I don’t need an MRI as my bloodwork shows I am in remission, but I haven’t had an MRI for two years and want to make sure. I was on Revlimid but have been off of it for a year now. My old Dr. wanted me to stay on it, but my new Dr. didn’t think I needed it. I moved or I wouldn’t have changed Dr.
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olivia
Multiple Myeloma Discussion • August 12, 2025
Finding Remission With Ninlaro After Relapse
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Diagnosed with MM early 2019. 1st Oncologist had me on Velcade. Received excessive amounts of Velcade & experienced severe Neuropathy early on. Decided after 3 weeks to change Oncologist TG!! My New Oncologist recognized the damage bases on my 1st Chemo Treatments. He immediately aborted my current treament & began a series of Kyprolis Treatments. What a life saver!! in November of 2019 I went through a Stem Cell Transplant. It seemed to have worked for the 1st Month, soon after traces of MM were not at bay. Long story short, it was discovered I had a bad Chomosome, yup, P17 deletion, which began allowing the bad cells to enter in once again. Longer story short, im on now & Oral Med of 3mg of Ninlaro & has been wonderful, all my Markers are at bay & consider in a remission state! Thats my story for now & I'm sticking to it!!!