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Meljoy1221
Multiple Myeloma Discussion • August 28, 2025
Safety of Mushroom Supplements on Maintenance?
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Hi I my name is Melanie and I am 50yrs young. I was diagnosed in June/2022. I have been in remission since Jan/2023 after my stem cell transplant. I take a chemo shot every two weeks and am on lenalidomide from Monday to Friday taking weekends off for 3 weeks and off for 7 days. My question is does anyone know if it’s safe to take a 5 mushroom capsule it has ( reishi, turkey tail, lions mane, cordyceps, change)?
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TAWisner
Multiple Myeloma Discussion • August 27, 2025
Managing Numbness From Velcade: Any Tips?
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I am 2 years post SCT for Multiple Myeloma and fortunately still in remission. I am still on a regimen of Dara / Revlimid, but before my SCT I was also taking Velcade / Dex. My feet have been numb since I started treatment, but seem to be getting worse. I have been told by my doctors that Velcade is the culprit and after 2 years it may be permanent. I have tried several supplements and even acupuncture, but nothing has helped. Has anyone found a treatment that has helped reverse the numbness in their feet?
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Debbie
Multiple Myeloma Discussion • August 27, 2025
Chemo Options With Less Neuropathy?
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Hello Everyone Are there any chemo drugs that do not cause neropathy or are less likely to cause? I wss in remission and Dr switched me to Darzalex for maintenance. It cause terrible neuropathy in my hands. feet and legs up to my knees. Right now I am not on any treatments. Just monitoring bloodwork for now. Just want to resesrch in advance. Thank you for any recommendations. Have s blessed day!
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Bev22
Multiple Myeloma Discussion • August 27, 2025
ASCT With Neuropathy: Mobility Concerns?
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Has anyone gone into the ASCT with leg weakness due to severe neuropathy? Did your mobility worsen? My husband is 57 and is using a walker/cane due to nerve damage (temporary, we hope) from Velcade during chemo. His doctors advise him to go ahead with the transplant, but we are worried his mobility will get worse. Any experience with this?
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Jeannine
Multiple Myeloma Discussion • August 26, 2025
MM Meds and Skin Cancers: Anyone Else?
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Has anyone had multiple skin cancers diagnosed after taking many MM medications? My oncologist warned me to get 3 month full body skin check ups and glad he warned me because I’ve had many I’ve had to have removed. Both basal and squamous cancer cells.
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Earnie
Multiple Myeloma Discussion • August 26, 2025
Facing a New Path: Biopsy Tomorrow
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Sunday morning I received a call from my oncologist and she let me know that the chemo wasn't working. So tomorrow I am to get a biopsy to figure out what other path I will be taking. Wish me luck...🙏🏾
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srqualitytec
Multiple Myeloma Discussion • August 26, 2025
Myeloma Concern for Former Accuride Canada Workers
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I retired from Accuride Canada in 2007 after over 38 years. It wasn't until December of 2024 that I was diagnosed with Multiple Myeloma Cancer. I have MGUS. In the months since being diagnosed it has come to the attention of the London and District Myeloma Cancer group that there are other former employees of Accuride Canada that also have been diagnosed with Multiple Myeloma Cancer. So far the number is at 10. In the general population the diagnosis is small but in the retirees there is a spike. If you or anyone you know that worked at Accuride Canada/Firestone Steel then please tell them to get tested.
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Moni64
Multiple Myeloma Discussion • August 26, 2025
Pain in Old Lesions Post-CAR T: Experiences?
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Husband doing his day Cart T + 30 PET/CT tomorrow and is anxious as he’s been experiencing pain the last two days in areas of old lesions. Anyone experience the same? What was your outcome? 🙏🏼
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cncahoon • Admin
Multiple Myeloma Discussion • August 26, 2025
Share Your Insights: Paid Atlanta Focus Group
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We’re hosting two in-person focus groups near Atlanta on: 🗓 September 16 & October 21 (late morning) We’re looking for people who: ✅ Have multiple myeloma ✅ Have had at least two relapses and completed two or more lines of therapy ✅ Have not received CAR-T therapy ✅ May or may not have received a bispecific antibody (Talvey, Elrexfio, Tecvayli, or Lynozyfic) ✅ Get care at a community practice or academic medical center 💬 We especially welcome Black/African American and male perspectives! What to expect: 📍 2 in-person sessions near Atlanta ⏱ 4 hours each 📚 Pre-read materials to help you prepare 💵 Compensation for your time and insights If this sounds like you (or someone you know), comment below or email cynthia@healthtree.org for more details!
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DIahanna • Admin
Multiple Myeloma Discussion • August 26, 2025
Navigating Hopkins & UHC Insurance Changes
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MARYLAND (WBFF) — Doctors at Johns Hopkins Medicine hospitals and facilities have stopped taking in-network insurance from UnitedHealthcare after Hopkins and the national health insurer failed to reach a contract by a Monday deadline. Just under 60,000 patients on UnitedHealthcare plans see Hopkins providers in Maryland, Virginia and Washington, D.C. Hopkins said all of its providers or facilities, except for Johns Hopkins All Children’s Hospital in Florida, are considered out-of-network by UnitedHealthcare as of Monday. “This means that UnitedHealthcare may cover less, or none, of the care patients with UnitedHealthcare insurance receive from Johns Hopkins providers or at Johns Hopkins locations,” the health system said on its website