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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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Rauchka60DAF
Myelodysplastic Syndromes Discussion • June 9, 2025
Managing High EPO Levels - Any Tips?
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My EPO IS up to 1763….. STOPPED Aranesp about 6 weeks ago, My EPO came down to 910 still extremely high. Can’t get any injections until below 500. Anyone else have this issue and what did you do to help bring down your EPO??? Mai am getting red cell transfusions.
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DianaSoto • Admin
Myelodysplastic Syndromes Discussion • June 9, 2025
Sharing Feedback on HealthTree 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
Chronic Lymphocytic Leukemia Discussion • June 9, 2025
Share Your Feedback to Improve HealthTree 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
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!
Give Feedback to HealthTree!

Give Feedback to HealthTree!

Welcome! We really appreciate your participation in this survey. This survey will take you 5-10 minutes to complete. Your participation is anonymous. Try to be as honest as possible. This will help us improve our products and provide the best experience to you and other blood cancer patients. Thank you!

https://forms.gle/aLChy5jwzUVQhox36
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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!
Give Feedback to HealthTree!

Give Feedback to HealthTree!

Welcome! We really appreciate your participation in this survey. This survey will take you 5-10 minutes to complete. Your participation is anonymous. Try to be as honest as possible. This will help us improve our products and provide the best experience to you and other blood cancer patients. Thank you!

https://forms.gle/aLChy5jwzUVQhox36
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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?
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Moni64
Multiple Myeloma Discussion • June 7, 2025
Considering CAR T: What Was Your Experience?
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Good evening, My husband was diagnosed 2023 and is now considered non secretory. Currently on Kpd with most lesions showing no activity but new ones appeared on last PET. Looks like we may be heading towards CARVYKTI CAR T. My question to this group in particular is what was your experience if you received CART T therapy? Thanks!
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Lindsay
Multiple Myeloma Discussion • June 6, 2025
SCT Recovery At Home: What To Expect?
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Hello 😊 I was just wondering what everyone’s suggestions/experiences are with the stem cell transplant process. Mostly after coming home from after. Thank you