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CHidalgo
Multiple Myeloma Discussion • June 11, 2025
Slight M Protein Rise After Steroid Reduction?
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Hello! I was diagnosed Dec 2024. I am 46 years old. I am on month 5 of treatment. I am high risk. My numbers had been going down pretty steady except for 1 month in the beginning when they kept stopping my treatment due to my low neutrophils. But since that is under control I have been consistently getting treatment. Just today my M protein came back higher. 6 weeks ago it was at .3 and today it was .4. I haven’t talked to my doctor yet it usually takes her some time to review and contact me. Doctor reduced my steroid last month from 40mg once a week to 20mg once a week. It was not letting me sleep. Could this be the cause of the increase? Is this a sign medication is no longer working?
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Jeannine
Multiple Myeloma Discussion • June 10, 2025
Runny Nose & Watery Eyes After CAR-T?
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Has anyone in this group after CAR-T started with a runny nose and watery eyes that have lasted for months? Went to a ENT and he prescribed Ipratropium bromide nasal spray and it helps slightly. It’s not allergies because I take Zyrtec daily. It started shortly after I received my Tcells back. Oncologist and Mm specialist has no ideas. Bone marrow showed moderate lympopenia (wrong spelling) and maybe this is part of it? Anyone experiencing this strange side effect? I also had Talvey for bridging which caused my taste to disappear for months but it has returned thankfully.
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Shieldmaiden
Multiple Myeloma Discussion • June 10, 2025
Sharing My Life in Treatment-Free Remission
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Remission! What a glorious word. Living beyond remission requires the mental fortitude to leave your cancer behind and forge ahead and live life. Being on zero treatment puts me in a fabulous mood daily. No nagging side effects , no infusions, no pills to remember and just a feeling of normalcy. I eat sensibly and do yoga and swim and exercise my brain by reading novels and playing guitar. I pray nightly that I remain MRD- and I am thankful for my family and all my blessings . I still must go for labs and keep track of all markers;however, I must admit , stepping foot into the oncologists office reminds of what I have been through and where I am today. I feel empowered and thank my body for getting me to the point I am at today , as I glance at all the patents around me wishing the same results for them
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Bratliffe
Multiple Myeloma Discussion • June 10, 2025
SCT or CAR-T for First-Line Treatment?
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I was diagnosed with MM April 1 and am headed toward a stem cell transplant. It seems to me the Car T is a better route. Is it true that the SCT is the first line of defense or is the doctor's choice?
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MHolden
Chronic Lymphocytic Leukemia Discussion • June 10, 2025
Navigating Greetings Without Handshakes?
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Hey Everyone! I'm looking for advice on meeting new people without shaking too many hands and still being warm and welcoming. I'm a 41 year old with High risk CLL and just started Calquence (acalabrutinib) and I receive monthly IVIg treatments because my immune system was really struggling. This week my family (husband and almost 10 year old) head out on a family retreat we do annually with several other families from around the state. Many events will be outside. My concern is that I'll be meeting or re-meeting several people, which of course involves hand shaking. Has anyone figured out a way to politely meet people without shaking hands? I'm trying to keep things as normal as possible. Thanks! Mollie
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XimenaG • Admin
Multiple Myeloma Discussion • June 10, 2025
Celebrate Survivor Month: Share Your Story
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🎗️ 💜June is Cancer Survivor Month, and we want to honor and celebrate the strength, resilience, and courage of survivors like YOU! 💜 We invite you to share your inspiring story with our community and remind others that survivorship is about living. How to participate: Send us a photo of yourself or a symbolic visual of hope and share your journey in a short caption. For example: Meet [First Name], a [cancer type] survivor. Diagnosed in [year], faced [brief challenge] but never stopped [something inspiring you continue to do]. If you would like to participate, please email support@healthtree.org. Remember, by sharing, you can change a life. 💜
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XimenaG • Admin
Acute Myeloid Leukemia Discussion • June 10, 2025
Celebrating Survivors: Share Your Story
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🎗️ 💜June is Cancer Survivor Month, and we want to honor and celebrate the strength, resilience, and courage of survivors like YOU! 💜 We invite you to share your inspiring story with our community and remind others that survivorship is about living. How to participate: Send us a photo of yourself or a symbolic visual of hope and share your journey in a short caption. For example: Meet [First Name], a [cancer type] survivor. Diagnosed in [year], faced [brief challenge] but never stopped [something inspiring you continue to do]. If you would like to participate, please email support@healthtree.org. Remember, by sharing, you can change a life. 💜
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XimenaG • Admin
Chronic Lymphocytic Leukemia Discussion • June 10, 2025
Share Your Story for Survivor Month
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🎗️ 💜June is Cancer Survivor Month, and we want to honor and celebrate the strength, resilience, and courage of survivors like YOU! 💜 We invite you to share your inspiring story with our community and remind others that survivorship is about living. How to participate: Send us a photo of yourself or a symbolic visual of hope and share your journey in a short caption. For example: Meet [First Name], a [cancer type] survivor. Diagnosed in [year], faced [brief challenge] but never stopped [something inspiring you continue to do]. If you would like to participate, please email support@healthtree.org. Remember, by sharing, you can change a life. 💜
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XimenaG • Admin
Myelofibrosis Discussion • June 10, 2025
Share Your Survivor Journey With Us
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🎗️ 💜June is Cancer Survivor Month, and we want to honor and celebrate the strength, resilience, and courage of survivors like YOU! 💜 We invite you to share your inspiring story with our community and remind others that survivorship is about living. How to participate: Send us a photo of yourself or a symbolic visual of hope and share your journey in a short caption. For example: Meet [First Name], a [cancer type] survivor. Diagnosed in [year], faced [brief challenge] but never stopped [something inspiring you continue to do]. If you would like to participate, please email support@healthtree.org. Remember, by sharing, you can change a life. 💜
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XimenaG • Admin
Multiple Myeloma Discussion • June 10, 2025
Celebrate Survivor Month: Share Your Story
AI-generated title
🎗️ 💜June is Cancer Survivor Month, and we want to honor and celebrate the strength, resilience, and courage of survivors like YOU! 💜 We invite you to share your inspiring story with our community and remind others that survivorship is about living. How to participate: Send us a photo of yourself or a symbolic visual of hope and share your journey in a short caption. For example: Meet [First Name], a [cancer type] survivor. Diagnosed in [year], faced [brief challenge] but never stopped [something inspiring you continue to do]. If you would like to participate, please email support@healthtree.org. Remember, by sharing, you can change a life. 💜
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Sasha
Multiple Myeloma Discussion • June 10, 2025
Balancing MM Treatment and Hormone Therapy?
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My husband is on Revlimid and weekly treatment with Emplicity. Now he needs treatment for prostate cancer with radiation and hormone therapy with Lupron and Zytiga. We are really concerned regarding the side effects from the hormonal therapy. Does anyone have a similar situation of treatment for myeloma and hormonal therapy? We would appreciate any advice or shared experience.
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DIahanna • Admin
Acute Myeloid Leukemia Discussion • June 9, 2025
Financial Resource for Copay & Gas Help
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Copays .org gas financial copay/co-insurance/deductible (medications and office visits) assistance available for AML patients. Max award $4,000.00/yr. renewable yearly. 500% or less of Federal poverty levels. This is adjusted for Cost of Living Index. You must be on Medicare, Medicaid, or Military Benefits.