Has anyone experienced facility fees for PET scans? I've just noticed this charge for a PET done last September. With the amount of money cancer centers are receiving for treatment it seems this fee is truly unfair especially if you have reached your maximum out of pocket limit. I should mention the facility I use is MSKCC. With regard to this PET scan, I had not reached the out of pocket max so my bill is $3600 for the PET plus $345 facility fee. For 2026, since I have already reached the maximum would any coming PET also incur this fee? I'm sure this is not sitting well with patients. Any experiences with this are welcome to be shared.

I will be having my T cells collected on the 23. Car t in April. I would like to hear from other people who have been through this process.

HealthTree Foundation, in collaboration with Mayo Clinic researchers, is conducting an observational survey to better understand how smoldering multiple myeloma (SMM) is monitored and treated in real-world settings. If you are 18+ with a history of SMM (whether or not it has progressed), your experience matters. The 10-minute survey is voluntary, confidential, and designed to help improve insights for the SMM community. Participate here: https://htree.org/yoursmolderingmyelomajourney Questions? email support@healthtree.org or call 800-709-1113

We’ve started a new series of smaller community gatherings and would love anyone living with Non-Secretory Myeloma to join our Non-Secretory Gather Community Event tomorrow. To help create a comfortable space for open conversation, these meetings are not recorded. We hope to see you at one of our Community Gather events soon! If you have Non-Secretory Myeloma and would like to attend, please register here: https://healthtree.org/myeloma/community/events/feb26-myeloma-non-secretory-gather-community

I've been on one chemo or another since my diagnosis of MM in 2011. SCT in 2016. Now in 2026 food tastes awful and I have no appetite. Is anyone else having this problem with food? I've lost 25 lbs. over the past year. My Dr. doesn't seem concerned. Peanut butter is the most recent casualty. Right up until a few weeks ago It was one of the few things left I liked, but now it just tastes off. Horseradish sauce, butterscotch pudding and cinnamon rolls are still good.

Is it safe for myeloma patients to take melatonin as a sleep aid. I have heard conflicting points of view.

I had a bone marrow biopsy last Wednesday and just saw the results in my chart. I see the Dr on Feb 18. It looks like I am MRD-. Which is wonderful, however I am nervous about going off of the Lenalidomide 10 mg 21 days. I have been on this maintenance for three years starting after my stem cell transplant. I am ready for a break but feeling a bit overwhelmed with stopping. Wondering if anyone else has experienced this and how they are doing? Thanks for any input!!!

Can you get side effects six months later from Car-t I heard even a year later As anyone experienced this???

Has anyone had a stem cell boost after Cart t-cell therapy for bone marrow failure? G-CSF shots haven’t worked to boost neutrophils.

I’m going in for my transplant February 16. Any suggestions or last minute thoughts for my recovery?

Recently due to Insurance changes my insurance has forced me to switch to Generic Teva Lenalidomide. If your on Teva Lenalidomide and had been on Branded Revlimid in the past what has your experience been with the switch. Also if you changed back to Branded what was your reasoning or documentation you used to get an override to go back to Branded Rev? Thank you Rick

I was wondering if it is helpful to get a coach and submit your medical records to Health tree. Also is it hard to connect. Thank you.

Hello- wondering if anyone is involved with a trial AZD0305. It targets GPRCH5. I am 20 month post Car T (Carvykti ) and relapsing. Small lesion in my pelvis and Kappa climbing monthly (16 then 25 now 60). So not awful but in light of lesion and climbing kappa monthly we need to start treatment due to my history of developing lesions with small kappa numbers. I treat at U of Penn. Thanks for any information available to share.

Hello- wondering if anyone is involved with a trial AZD0305. It targets GPRCH5. I am 20 month post Car T (Carvykti ) and relapsing. Small lesion in my pelvis and Kappa climbing monthly (16 then 25 now 60). So not awful but in light of lesion and climbing kappa monthly we need to start treatment due to my history of developing lesions with small kappa numbers. I treat at U of Penn. Thanks for any information available to share.