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Zelda
Multiple Myeloma Discussion • April 20, 2023
Grateful for This Community
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Thank you for starting this group. I feel like this is the exact type of group I've been searching for and in a platform I can readily follow. :-)
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audrey • Admin
Multiple Myeloma Discussion • April 20, 2023
Topic Brainstorm: What Should We Discuss First?
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Hi everyone! Welcome to our new group. I'm excited about this one. Here's a list of brainstormed topics we could talk to each other about in the group. What are you interested in tackling first? Any other suggestions? Sexual Wellness (Maintaining Intimacy) Deciding to Have Children (Freezing Eggs, Side Effects of Medicine on Potential Pregnancy) Financial Concerns and Resources (Retirement, Grants, Loans, etc.) for Younger Myeloma Community Estate Planning, Wills and Guardianship Presenting the disease to your children/parents/grandparents Getting back to work post-transplant Managing side effects and life balance (Revlimid, Dera, etc.) Regaining independence and increasing activity post-transplant How much and how you share about MM with work, friends, etc Female Hormemones post SCT Maintaining Fitness Mental Health/Therapy Dealing with the Stigma of Being Diagnosed with Cancer Coping with Self Esteem Issues Grieving the Life You Thought You'd Live (Career, Life Goals) Nutrition
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Kneal
Multiple Myeloma Discussion • April 20, 2023
Caregiving Through CAR-T: What to Expect?
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Hi - I am the caregiver for my husband who is current 54. He started treatment in 2014. He has had an auto-transplant in 2015. He got a short partial remission. Has had 4 lines of treatment and getting ready to get his CAR-T cells back on May 15. I am not sure what to expect but hope it works to give him a break from treatment for a while. His recent BMB has shown a change towards high-risk markers that are new.
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greyElephant
Multiple Myeloma Discussion • April 19, 2023
Carvykti Experience: Timeline & BP Issues?
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Has anyone recently had Car-T using Carvytki? If so, how long did it take for your cells to come back, after collection? My cells are coming back this week. They were collected on March 20th, so 8.5 weeks. Chemo next week, then into the hospital Memorial Day weekend. I recently received my cells and spent 2 weeks in the hospital. I am now having some issues with ortho static blood pressure. Has anyone else experienced this?
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accollins@optusnet.com.au
Multiple Myeloma Discussion • April 18, 2023
Experiencing Balance Issues & Back Pain on Revlimid?
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I have been on Revlimid and Dex now for 3 years and my paraprotein is keeping down, but wanted to ask if anyone has experienced balance issues. I also experience significant pain in my back,worse on the days I don't take Dex. I try and walk each day and am doing exercises from my physio.
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Judith
Multiple Myeloma Discussion • April 18, 2023
Tolerating Dex: What's Your Dosage?
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Hey everyone, curious how much dex and how long you all are tolerating it. I was on 24 mg spread out over 3 days an dit was way too much. Now just taking 4 mg week, can still feel it but so much better
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Momcruse
Multiple Myeloma Discussion • April 16, 2023
Sudden Allergic Reaction to Maintenance?
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Hi Everyone, I pray you are all coming along well. My post is regarding my allergic reaction that I experienced this past week. I started on my maintenance regiment on Wednesday, which consists of Dexamethasone, Lenalidomide and Faspro. Two hours after my treatment, I started itching, broke out in hives, shortness of breath, nose and throat began to close. Rushed to the ER, where they administered an antihistamine, Benadryl and another medication, can't remember. Symptoms subsided, thank God and I was able to return home. Question: Has anyone ever experienced this situation when starting their maintenance treatment. What could it have been? I had taken these medications prior to the transplant with no reaction. Could it have been my new immune system? I don't know and neither does my doctor seem to know. Any help would be appreciated.