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Flykaster
Multiple Myeloma Discussion • August 20, 2024
Slowing MGUS Progression: Diet & Lifestyle Tips?
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Diagnosed Mgus IgGkappa with 0.05 mspike 6/23 . All markers in normal range as of 5/24. 70 on 7/31/24 other then this M spike excellent health no medications, been seeing intern once yr. Hematologist once to just wait and watch mgus markers. Asking for any other proactive treatment, specail diet, other actions to be doing now to reduce m spike and possibly of progression to myeloma??
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Hephzibah
Multiple Myeloma Discussion • August 20, 2024
Exploring a Natural & Plant-Based Path
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I'm listening to Beat Back Cancer Naturally by Dominic Brandy, M. D. on Audible and it is helping me make the necessary changes in hope it will make a wonderful difference in my health. Plant based nutrition, specific supplements, exercise, stress reduction. 👍
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Larry5
Multiple Myeloma Discussion • August 19, 2024
Understanding Lenalidomide Pricing and Dosing
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Hello All, first ever question, however have read prior postings and have gleaned some very informative answers so here goes: Do to issues with side effects my 28 day 10mg Lenalidomide maintenance regimen was reduced to 5mg, 28days. With each delivery comes a patient guide, side effects page, and my insurance carrier's retail price. I had expected a reduction in the retail price as the dose was cut in half and was very surprised that the 5mg price was exactly the same as the 10. Asking if anyone knows and/or understands how prices are determined and set. Things that make me go MMMMM. Thanks in advance for the opportunity.
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kmburke60016
Multiple Myeloma Discussion • August 19, 2024
Finding Hope with a High-Risk Diagnosis
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Hello friends. I am a 53-year-old single mom to a teenage daughter. I was diagnosed on March 20 of 2024. I have high-risk myeloma, with four chromosomal anomalies. Currently on daratumamab, bortezomib, dexamethosone, lenalidomide. I had a spine surgery in April to stabilize the area where the myeloma ate my T1 vertebra. Planning a stem cell transplant for the end of October this year. I have no comorbidities. Every now and again, I look at my test results, genetics, etc. and search PubMed (I work at a med school). The words I see are not good. "Aggressive," "poor outcomes," "mortality." Not sure what I'm asking here. Maybe for hope? Does anyone here have a similar genetic profile?
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yellowStork
Multiple Myeloma Discussion • August 16, 2024
Strengthening After Transplant: Tips for Rubber Bands?
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hello, I'm Trey glad to check out this group I've had been given access 3 years ago but now I'm ready to have a chat. Has anyone used rubber bands to strengthen themselves after they transplant any tips would be greatly appreciated thanks ciao for now.
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Iliana • Admin
Multiple Myeloma Discussion • August 16, 2024
Opportunity to Share Your Elrexfio Story
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Pfizer is interested in finding patients who have been on Elrexfio (elranatamab) who would like to share their story as a patient ambassador. If you are interested, please email support@healthtree.org with your Name and Email. Have a great weekend ahead!
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Linda
Multiple Myeloma Discussion • August 15, 2024
Understanding MRD: Positive vs. Negative?
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My DIL had a bone marrow biopsy 8 months after a SCT and 5 months after maintenance therapy with Darzelex monthly and Revlimid 21/7. The flow cytometry showed an 0.011% of abnormal cells out of 1million. The oncologist told her she is MRD positive but the research I read from the NIH states any result 0.020% or lower is considered MRD negative. Does anyone have different information from their oncologist regarding these results? Thanks
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Julia
Multiple Myeloma Discussion • August 14, 2024
Welcome!
Welcome!
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peachHedgehog
Multiple Myeloma Discussion • August 14, 2024
Experiencing Dizziness on Maintenance?
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Hi all! I hope everyone is doing well. Is anyone else dizzy? Any idea what is causing it? I was diagnosed with MM last summer at 37 yrs old and started 16 weeks of RVD in August. I had an auto SCT December of 2023 and have been in remission since. I’m on monthly infusions as maintenance (velcade, faspro and solumedrol) along with a folbic acid supplement. It’s not traditional dizziness like the room is spinning but it almost seems neurological. The ‘dizziness’ is at its worst when walking down aisles at stores. It seems to be lessened when I have an electrolyte packet and the folbic acid, but it doesn’t go away completely. It does not seem like a change in vision.
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anapela1
Multiple Myeloma Discussion • August 13, 2024
Covid & Faint Test Line: What To Do?
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I am an 82-year-old woman who has Been diagnosed with MGUS for 25 years. After my husband passing in March 2024, I was diagnosed with smoldering multiple myeloma. I am seeing a hematologist at City Of Hope and I also have a hematologist at Saint Joseph’s Hospital in Orange County. My question is, I have been exposed to Covid by my granddaughter five days ago. I have taken two tests and they have been negative. however, this morning, I took a test and there was a very faint line under the T category. Should I be concerned about the faint line under the T category? If I have Covid, what should I be doing to keep safe? I will take the test again tomorrow to see what it shows. Thank you.