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Anna1
Multiple Myeloma Discussion • May 19, 2025
Considering SCT for an Older Patient?
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Can old people with mutiple co morbidities tolerate stem cell trnsplant? Suffering from myleoma or get worse post it Which one has longer remission?maintence or sct?
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Armando
Chronic Lymphocytic Leukemia Discussion • May 19, 2025
New to CLL: Thoughts on Diet and Fasting?
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hello everyone, I recently got diagnosed with CLL. I’m new to all this and it’s a little scary. I have a lot of questions.. I recently did a 21 day water fast, hoping it would help boost my immune system and I switched over. I’m currently living on a plant-based diet.. Any feedback or information is totally welcome.
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Anna1
Multiple Myeloma Discussion • May 19, 2025
SCT vs. Thalidomide Maintenance: Experiences?
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Hello fellows,hope ur doing well My mother diabetic hypertensive was diagnosed with myeloma in dec 2024 Dr we consulted in our country advised 6 cycles of chemo including bortezumb and thalidomide and dexa 20 to 10mg Now all the cycles are almost complete. Shes is 63 64 yrs old .she has become very weak post treatment. The hematologist said u can either opt for stem cell. Trnsplant or maintence therapy with thalidomide 100mg, your choice? Can you all please tell which one is advisable for longer remission?anyone who has experienced stemcell and those on thalidomide both please share experince
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shamharde
Multiple Myeloma Discussion • May 19, 2025
Managing Work and Safety on Watch and Wait?
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Hello everyone: I was diagnosed with Multiple Myeloma in 2021. I'm still in the Watch and Wait stage. How are you all handling your employment? Do you currently work? If so, do you work from home or in an office? If you work in an office, do you feel safe and comfortable (concerned with catching illnesses fom others) ? Do you find that it's best to work from home or around people?
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Jeff1956
Multiple Myeloma Discussion • May 18, 2025
Experience With PeopleBeatingCancer.org Courses?
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Does anyone know much about the peoplebeatingcancer.org website. It offers courses for people on both traditional and non traditional therapies for myeloma . I have been looking for more non traditional therapies to augment my care. I was seriously wondering if anyone has signed up for the courses and they felt they were worth it.
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Annie53
Multiple Myeloma Discussion • May 18, 2025
First Treatment: What Was Your Experience Like?
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I would appreciate it if someone could explain/describe what their first myeloma treatment was like and any side effects or problems if any were experienced. Were all the following treatments experienced in the same way, better or worse or just the same. What meds were used. Can you tell I'm scared!
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kmburke60016
Multiple Myeloma Discussion • May 17, 2025
Returning to Strength Training: Sharing MM Experiences?
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I am just over six months from my SCT, got my first round of vaccinations, so I'm finally going back to the gym. When I was diagnosed just over a year ago, the myeloma had eaten my T1 vertebra, so I now have rods and screws holding me together. Prior to diagnosis I had been doing a great strength training program through the app Stronger by the Day. I'd like to continue with it, but some people warn against lifting weights with MM. What has your experience with strength training been?
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Anne66
Multiple Myeloma Discussion • May 16, 2025
When to Start Treatment for Early Relapse?
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Hi I am 59 years old and was diagnosed in March 2022. I am 2 1/2 years post SCT, and my numbers are starting to rise. My Lambda count is at 217. I am currently only on Lenalidamide 2.5mg for maintenance as I didn’t tolerate a higher dose, ended up in hospital with fever. My question is when do I start new treatments? When I was diagnosed, my Lambda was 1500 and I had fractured ribs and a lot of lesions in my back and hips. They are telling me I am high risk, because my cancer has come back so soon, so will have to go on ISA KD treatment. But this men’s weekly IV, so no more travelling. I’m wondering how high my numbers can go before I need treatment. Is anyone else here have a similar situation? Thank you
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Marga
Multiple Myeloma Discussion • May 16, 2025
Managing Darzalex Cough: What Helps?
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Hi all, My husband has been in maintenance treatment (darzalex once a month + revlamid) since November 2024 after ASCT summer of 2024. He's developed what his hematologist diagnosed as some allergic reaction to darzalex, so he'll be getting a slightly higher dose of steroids next time he gets darzalex. And he got a prescription for allergy medication. What he's experiencing is a persistent cough. He's been tested for COVID, Flu or any other viral infection. All negative. He's not able to sleep through the night because of this never ending cough. Has anyone experienced something similar and did you all find anything that helps? He's tried cough medicine, honey, lozenges. Those help but not for long. He's also taking Pepcid as he has some reflux also related to his maintenance treatment. Thanks!
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salmonWhale
Multiple Myeloma Discussion • May 16, 2025
Hearing Loss on Myeloma Drugs: Anyone Else?
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Have any patients here experienced severe hearing loss while taking myeloma drugs? This happened to me and although I haven't read that hearing loss can be a side effect of these drugs, I'm wondering whether it's something that's under the radar. Has anyone ever suspected such a thing because of myeloma drugs? Over a year ago, I lost virtually all my hearing in my left ear, and much in my right ear. This is not an unusual thing for the general population, so mine may have nothing to do with drugs. Doctors call it "sudden hearing loss," which of course explains nothing, and there's no consensus on the cause. I've read speculations on viruses and autoimmune diseases.