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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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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
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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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.
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DIahanna • Admin
Multiple Myeloma Discussion • June 9, 2025
Finding Financial Aid Through PAF
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Patient Advocate Foundation (PAF) has a program called Health Equity Funds that provide financial support to eligible patients living in certain counties. Go to copays.org to learn more.
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DianaSoto • Admin
Acute Myeloid Leukemia Discussion • June 9, 2025
Help Improve Our AML Resources
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Hi everyone! I'm Diana, Product Designer at HealthTree. We're working to make your experience with our products and resources even better — and your feedback plays a key role in that. If you have 5 minutes, we’d greatly appreciate your input through this anonymous survey: 👉 https://forms.gle/aLChy5jwzUVQhox36 Thank you so much for your time and support!
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DianaSoto • Admin
Multiple Myeloma Discussion • June 9, 2025
Share Your Feedback With HealthTree
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Hi everyone! I'm Diana, Product Designer at HealthTree. We're working to make your experience with our products and resources even better — and your feedback plays a key role in that. If you have 5 minutes, we’d greatly appreciate your input through this anonymous survey: 👉 https://forms.gle/aLChy5jwzUVQhox36 Thank you so much for your time and support!
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MaureenF55
Multiple Myeloma Discussion • June 9, 2025
Vaccines After SCT: Sharing Experiences?
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Can anyone comment on vaccines after SCT? I had my transplant in January and am overwhelmed with all the vaccines I’m recommend to get. I’d like to know what ones you got or didn’t get and why. And most importantly do you feel they were effective. Lastly, did you have any side effects from any of them. Thanks. Maureen
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LYP
Multiple Myeloma Discussion • June 9, 2025
Help Connecting to Financial Support?
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Thank you for the information. I have tried to access the porthole and not been successful. I’ve also called the helpline and been unable to connect. Do you have any suggestion suggestions?
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goldShark
Multiple Myeloma Discussion • June 8, 2025
Experiencing Chronic Back Pain With Prolia/Xgeva?
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i was wondering if anyone has experienced mid to upper back pain after taking Prolia or Xgeva? I don't mean the acute pain that you get after the shot for a few days but rather chronic back pain and back fatigue. It dawned on me the other day that at the end of the 6 month interval right before i am due for another shot and the Prolia is wearing off, that my back pain is much improved. So wondering if all this back pain is being caused from Prolia. I have been on it far too long...7 years and would stop tomorrow except for the pesky rebound effect which no one really seems to know how to manage.
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Heather4321
Multiple Myeloma Discussion • June 7, 2025
Experiencing Arthritis After Treatment?
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I have Multiple Myeloma and Amyloidosis. When I was getting treatments for several months, my joints started making grinding, popping and cracking noises. I told my doctors about it but they didn't seem concerned. After my treatments and stem cell was done, my joints kept on making the grinding noises. I thought in a couple of months to a year it would stop but it never did. It's a little over 4 years since my stem cell transplant and I found out that my right knee is getting a full knee replacement. Before my treatments I never had any problems with any of my joints. They said I have bad arthritis in my right knee and it really damaged the bone. I'm just wondering if the treatments caused my arthritis to begin with. I guess I'll never know for sure but was just wondering if anybody else is going through the same thing.
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Absimms
Multiple Myeloma Discussion • June 7, 2025
Managing Vomiting and Pills After Transplant?
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Hello. I recently received a stem cell transplant two weeks ago. I barely have an appetite, but I keep eating foods to gain my strength. Unfortunately I haven't been able to swallow my pills. If I do, I always vomiting them back up, along with anything else I ate during the day. Has anyone else experienced this? I'm hoping I don't have an infection. Since it's the weekend now, I'll follow-up with the doctor's office about this on Monday. Thanks.
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Jeff1956
Multiple Myeloma Discussion • June 7, 2025
Vaccinations Again After CAR-T: Experiences?
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I was wondering if a person is supposed to get their vaccinations again after CAR-T. I had a stem cell transplant two years ago and I got my vaccinations after that. I was told by my doctor that it was not necessary after CAR-T. A myeloma fellow who saw me with my doctor last visit made reference in his notes that I needed to get the vaccines. What are your experiences?