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Bev22
Multiple Myeloma Discussion • September 24, 2025
Experience With a Seizure During ASCT?
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Has anyone had a seizure during an ASCT? The doctors believe it was from the wrong dosage of chemo and a combination of lack of kidney function (on dialysis). It was very frightening to my family and we are hoping it was a one time event. Any experience with this?
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Rosaida
Multiple Myeloma Discussion • September 24, 2025
Widespread Pain And Stiffness Post-Transplant?
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Antes del transplante no tenia dolor y no tengo lesiones. Nunca recibi radio. Ahora a 4 meses del transplante tengo mucho cansancio, dolor en todas las coyunturas y en mis musculos o piel, no se identificarlo bien, es como si me hubieran dado una paliza y me doliera todo, tambien mucha rigidez al levantarme y dolor en las manos. Esto comenzo a 2 meses del transplante. Alguien mas le ha pasado de esa forma? A eso es que llaman neuropatia?
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crimsonWalrus
Multiple Myeloma Discussion • September 23, 2025
Sharing My Journey: Femur Break to Remission
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My Name is Emma Groff I was diagnosed in July 2019 Had right femur pain for five months. Woke up one morning went to get out of bed my femur broke. I didn’t know what was wrong at the time. My daughter took me to the ER . X-rays showed my femur was broken. I was amitted to the hospital for further testing and was told I had multiple myeloma. It was stage one started treatment in August and was told I was in remission in October. Talked to a doctor at Penn Medicine Abramson Cancer Center in Philadelphia Pennsylvania. Went to Philadelphia in February for stem cell harvest had chemo in March. I have been in remission ever since. Had two back surgery last year. My doctor wanted to make sure my back issues weren’t coming from multiple myeloma. The last one was in November and my doctor had me get a biopsy no cancer cells. Than had a pet scan no lesions. So my journey has been a breeze compared to most.
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Iliana • Admin
Multiple Myeloma Discussion • September 23, 2025
Share Your Voice to Improve Myeloma Care
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We need your voice to help improve cancer care for everyone. HealthTree is supporting a new study led by Dr. Craig Cole and Dr. Jeff Zonder at the Karmanos Cancer Institute. This important research explores how race, ethnicity, and socioeconomic factors impact access to care and treatment outcomes for people living with incurable cancers. 📝 If you are 18 or older and have a self-reported diagnosis of myeloma, you can help by completing a 25–35 minute survey. Your experiences and insights can make a difference in creating a more equitable future in cancer treatment. JOIN 👉https://www.healthtree.org/myeloma/curehub/private/research/I0DOs0JGGcOEncW1Vc67?utm_source=social_media&utm_medium=meta&utm_campaign=smmsurvey&utm_content=meta Together We Care. Together We Cure.
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https://www.healthtree.org/myeloma/curehub/private/research/I0DOs0JGGcOEncW1Vc67?utm_source=social_media&utm_medium=meta&utm_campaign=smmsurvey&utm_content=meta
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dshaffer11
Multiple Myeloma Discussion • September 22, 2025
Sharing Experiences After Stopping Dex?
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I got off of Dex in June. I am on Sarclisa and Revlimid. I had a few weeks of upper back pain after getting off Dex which could be from working out or withdrawal from Dex. I'm not missing the Dex now that I have adjusted to being off of it. Interested in others' experience who aren't on Dex anymore.
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Pheba1
Multiple Myeloma Discussion • September 20, 2025
Managing Revlimid Shaking: Does Dose Timing Help?
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Good day all: This question is for those on Revlimid; What time of day do you take your Revlimid. I am on 10mg. 3 weeks a month. I also do Darzalex once a month. I have a terrible time waking up in the morning. I take Revlimid at about 8 p.m. I wake up shaking, like I am vibrating. Even my vision is vibrating. I suspect neuropathy. My oxygen is good at around 98, my pulse is around 60. I do have mild sleep apnea, but can not do a C-Pap machine. I only have apnea if I lie on my back. I tried a C-Pap for 18 months I developed some serious problems with air in my stomach and my ears. I am seeing a specialist, who recommended I just sleep on my side. I see her again in 3 weeks. I believe if sleep apnea was causing the shaking my waking pulse would be higher. My waking blood pressure is about 115/65. I wonder if the Revlimid is causing part of the problem. Does anyone take Revlimid in the morning? Thanks, Sharon