24. 6.21 Treatment Updates and Patient Outreach Program with oneAMYLOIDOSISvoice.
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- Опубліковано 20 чер 2024
- www.OneAmyloidosisvoice.com
Sharing my latest lab results along with Wednesday's Patient Education and Assistance Program where we have experts in the field of amyloidosis share tools for success.
Wednesday 26th Registration: us06web.zoom.us/meeting/regis...
Bravissimo Dan, I am so glad you are doing awesome.
thank you so much.. How are you?
Good to see you again! I like that white hair!
Thank you... and Thank you!
Hi Dan, I am very glad you are getting better. I was diagnosed in late 2020 with stage 1 AL light chain amyloidosis, had in early 2021 six weeks therapy with CyBorD and mid April the autologous stem cell transplantation after high dose chematherapy. I am "clean" since then and take no medication. As a passionated cyclist I started cycling a month after the transplantation, constanlty gaining my strenght back. Never felt better in my life! Greetings from Switzerland!
wow, that’s incredible. Good for you! Thank you for sharing!!
Great to see you again Dan! I was diagnosed in 2018 and am on kidney dialysis. It's not fun, but I still feel so much better than I did before my kidneys failed. I had chemotherapy for about 18 months in 2019 and 2020 and my numbers are still good. I'm so happy that you are doing so well Dan! Keep us informed!
Hi Elizabeth.. glad you are feeling better. No, doesn't sound like fun. Hang in there and hopefully I'll see you on our next Wednesday zoom
Good to see you, Dan!
HI... thank you!!
Register Here: us06web.zoom.us/meeting/register/tZAuf-GuqzgsEta_IXHOSmCoFu9Lj-oRXE1C
That’s great. I’m so happy your numbers are in the normal range or at least going down! Are you on Dara?
Thank you... no, Dara wasn't available when I started. I'm on Venclexta right now.
I was diagnosed in 2021 with aa amyloidosis. I'm on dialysis I'm having a hard time finding a doctor. I live in Philly do u have any suggestions?
Let me see what I can find out....
🤍🤍🤍
Hi Gina!