Forum Replies Created
Pat, I had Dr. Alan List from Moffitt. He has since left tho. He told me as long as there is no tumor involvement you can get a transfusion <9 HB. Would get a 2nd opinion. They’re not walking in your shoes with the fatigue & feeling lousy. GL
Len, read my previous comments, I have INS, as I’m 60. You can call Medicare to ask? What is the protocol if you’re denied etc… Then take that info to the Dr to see if he could facilitate it.
Len, I have hemochromatosis before this all started 2 yrs ago. As transfusions add to your iron content on spleen & liver your Dr should run a ferritin lab to see your #’s. Your Dr’s can write medicare to help with this. In the long run if this drugs works, it could be more nominal for medicare to opt for this drug,seeming the long term issues with transfusions on your organs. It’s $12k per shot + the margin markup which Orlando Health is charging $21k for me. RIPOFF… I’m 60 not on Medicare. Good luck!
Janice, I’ve tried EPO injections same. Do you have any side effects? That’s my problem. I’ve had MDS for 2 yrs. So no bounce at all for you? Fingers crossed the increase will give you a boost.
Mike Abrams & Kenan White, I’m on Luspatercept,had my 3rd shot past Fri. 9wks total. Started with HB @ 8.3,bounced to 9.1 & received a transfusion 2 units 4 days later got HB to 10.8. Fatigue after transfusion no energy. My #’s,10.7,10.5,10.3,10.5,9.8 HB. My Hematrocrit was a high of 32.7,now 28.5. Hoping fatigue along with joint pain will lessen? My Dr doesn’t want to increase the mg of the shot due to side effects.Dr says my body might have to get adjusted to this drug. This drug got rave reviews, hoping it’s going to work for me? Let me know if you’re going to try it? Best of luck!
Ian Palanglo, I have it mild compared to you. I’m not a BMT candidate. I’ve gotten my 3rd shot of Luspatercept but my HB is not responding,along with side effects. I’ve had 26 transfusions so far. Procrit didn’t work for me @ 60k units. I wish you well & thank you for sharing your journey. My thoughts are with you
My Dr told me awhile ago that alcohol suppresses the bone marrow. Don’t know about wine? Ask your Dr when you see him next.
April 20th. That’s what my Dr told me @ Moffitt a couple weeks agoJanuary 4, 2020 at 12:38 pm in reply to: Has anyone seen Dr Alan List @ Moffitt Cancer Center #49917
Sad day Marge, I saw him in early Dec. I asked about Luspatercept, which he thought would be approved. I was there yesterday and met Dr Komrokji who is also versed in this field, currently taking part of his patient load. Knowledgeable & trustworthy, first impression. Will continue to seeing him. Brought up Luspatercept again because the procrit isn’t working for me. Great news!! End of April I was told. Ins will cover it too. Good luck Marge, things are looking positive for a change 🙂
Ann,still doing Procrit once a week now 40k units. I’m sorry Luspatercept isn’t yet :(. The FDA has fast tracked it. My Hemo says maybe early 2020. I’m in Fl. My hemoglobin is 9 for the last month. Was bi-weekly now every week. It was to late for me to enroll for the study, as I was already on Procrit. I apologize that I didn’t make that more clear.
Haydee, I also have MDS/MPN RS T. I posted several months ago and no one replied. It’s a rare branch of MDS. My Hemo/Onc said the same. I’m 60, with iron overload too. I told him quality of life. My wife can’t understand why I have to rest for an hr or 2 a day. My hemoglobin was @ 10.8 last Dec 2018. And has been going down since. When it got to 9.6 the hemo started me out on 40k units of Procrit. I go every 2wks for blood work. If I’m 10 no shot. I’ve been on it for 3 months now. Took awhile for the levels to get to 10. Nothing above. 4 weeks ago I was 9.7 and need a shot. 2 weeks ago I slipped to 9. It might no be working for me?? This Tue I see him with current blood work in hand. the lowest was 8.9 for me and that was 4 weeks after I started Procrit. No side effects. My Hemo said the FDA was fast tracking a drug named Luspatercept which he said maybe early 2020 it will come to market? Aranesp might be the next option if my level doesn’t rise.Fingers crossed. You have to be your spokesman. Your living with this not the Dr’s… I was given 8yr survival As you know its only 30% odds to transform to leukemia. Please feel free to call me. 239-247-2982. I’m in Florida. And stay positive.:) Best Jimmy