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TimJohnson
Multiple Myeloma Discussion • August 9, 2025
WGS Testing: Sharing Results and Doctor Opinions?
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Whole Genome Sequencing testing experience I participated in the Whole Genome Sequencing test that Predicts Biosciences ran here through Healthtree and got results that were startling, to the point of "Failed the test successfully." My result came back with "Test failed because <50 Circulating Tumor Cells detected in 21.4 million." That works out to less than 0.000002% zombie cells in my blood stream. My specialist is on mat leave until next month and my local was quite skeptical saying it was likely an "absence of evidence" rather than an "Evidence of absence." In other words, he's not convinced of the efficacy and accuracy of the test. Of those here that did the test, what were your results and what did your local/specialist think of the test and your results? Thanks.
Thumbnail for Are MRD tests and detection thresholds standardized across labs or is it important to complete MRD testing with the same lab each time?
Playlist: MRD in AML

Are MRD tests and detection thresholds standardized across labs or is it important to complete MRD testing with the same lab each time?

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auburnWolf
Multiple Myeloma Discussion • August 8, 2025
Experiencing No Sweating on Talvey?
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Talvey. Week 11. Starting in the first few weeks, I quit sweating. It's very dangerous. Has anybody else had this side effect? I've now talked to 6 people that experienced this side effect. When I called Talvey and the federal adverse reaction recorders, they both said they had never heard of that before. The Talvey lady acted like she thought it was not the Talvey causing the no sweating situation. One reported side effect is anhidrosis, a condition where the body does not sweat normally or at all. Call in and report all of your side effects. To your Dr, the manufacturer and the adverse reactions people. https://www.google.com/search?q=talvey+no+sweating&oq=talvey+no+sweating+&gs_lcrp=EgZjaHJvbWUyBggAEEUYOTIHCAEQIRigATIHCAIQIRigATIGCAMQRRg8MgYIBBBFGDwyBggFEEUYPTIHCAYQIRigATIHCAcQIRigATIHCAgQIRirAtIBCTE2MDcxajBqNKgCArACAQ&client=ms-android-verizon-us-rvc3&sourceid=chrome-mobile&ie=UTF-8
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Livvy
Multiple Myeloma Discussion • August 8, 2025
Stopping Revlimid Maintenance: Anyone Else?
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My husband had multiple myeloma but has been in remission since 2017. He had a stem cell transplant in 2017 and had been on Revlimid since after having his transplant. Just recently the oncologist he seen, took him off the Revlimid and told him that now he will just come in every 3 months for blood work instead of every month. We are concerned because we were told back when he had the cancer that he would be on chemo for the rest of his life because this is a cancer that will come back. We just need to make sure this the right decision.
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MsLor
Multiple Myeloma Discussion • August 8, 2025
Experiencing Headaches Before Treatment?
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I was just diagnosed July first. I have not had any treatment as of yet but a PET scan and 2 bone marrow biopsies. I am having more labs before seeing my specialist September 2nd. The doctor discussed induction treatment that would probably be for 3 months. Maybe a bone marrow transplant afterwards. I have only one issue at this point… headaches! Did anyone have a similar experience?