Luspatercept

[Len Tillem]

I had my first injection Friday, June 12.
I’m not sure yet how much it’s helping.
I’ll keep this message string posted.
I had a transfusion, 1 unit, the following Monday, June 15.
My HGB was 8.6 measured the day before, 6/11, I got the Luspatercept.
Does anyone know how long it should take to see a benefit from Luspatercept?

• This reply was modified 3 years, 10 months ago by Len Tillem.

[Bob]

I hope Luspatercept works for you. This is such a new drug that you are doing a real service by posting your experience and I hope you will hear from many others. I am not there, yet. I have not read anything about this drug at Marrow Forums and perhaps posting there will attract readers who are also using Luspatercept so you can exchange information. All the very best.
http://forums.marrowforums.org/forumdisplay.php?f=7

[fran]

I was diagnosed with MDS (no side blasts) December 2018. I am transfusion dependent and receiving 2 units of RBC’s every 2-3 weeks. Tried and failed Vidaza. Had my first treatment of Luspatercept, 2 injections (one in each arm) yesterday. Will repeat in 3 weeks. I am very interested in how others are responding to this new drug. I pray it works.

[Kenan White]

Hello:
I’m anxious to know how you are responding to Luspatercept! I’m on Procrit, and have been for a year, but my RBC numbers are dropping – trying to avoid transfusions, but think that it’s inevitable so hoping for an alternative. Please give me an update if you don’t mind, and I am hoping you are well!

[Len Tillem]

I have had 2 Luspatercept treatments.
So far I have not noticed a reduction in my need for RBC transfusions.
I had my 2nd injection on July 2 and I will receive a 3rd injection on July 23.
Yesterday I had another RBC transfusion. 1 unit.
If the first 2 Luspatercept injections do not improve my RBC production the 3rd injection amount will be increased.
The doctors follow the package instructions.
I have not noticed any side effects I can attribute to Lusoatercept.
Whenever my HGB count gets below 9.5 I get a transfusion.
For me it’s a quality of life decision.
I had heart bypass surgery 16 years ago and find that below 9.5 I have difficulty catching my breath.
I am bed ridden all day at that lower HGB count.
Don’t fear a red blood cell transfusion. I have had over 70.
My oncologist tells me that’s nowhere near the record.
My ferritin level is high, 3950.
I see a local oncologist and a MDS specialist at UCSF.
Both assure me I’ll dye of other causes before my ferritin levels affect my organs.
We take these cancer drugs and hope for the best.
I’d like to be in the lucky 60% that this drug benefits.
I stopped Decidabine treatment when the Covid virus appeared in March.
I had been receiving Decidabine for over 1 1/2 years. I never felt I benefited from that drug.
Decidabine, seemed to me, to only increase my need for RBC transfusions.

[maggiemag]

Hi everyone. I haven’t been on this message board in months, maybe years. But Len, I am EXTREMELY interested in how you got approved for the Luspatercept. That’s my goal. I am on Medicare with a supplement, and I have been told that you can’t get the drug without having ring sideroblasts, which I don’t have. It seems I am now transfusion dependent, about every 6 weeks for HB under 8.0 Are you paying out of pocket for it? Not what I want to do for sure. What did your physician say to get you approved? Thanks in advance.
margaret

[Len Tillem]

I have no idea why I was quickly approved for Luspatercept.
Perhaps because I’ve had so many transfusions.
Just have your oncologist write out the prescription and see what happens.

[maggiemag]

Well yes, but I would want to know if Medicare was going to cover it first. I don’t like surprises like that. Do you have a supplement as well?
Margaret

[Bob]

I could not find definitive information about Medicare coverage. It would be great if someone has that information and posts it here. A patient would not necessarily know the case made by their oncologist nor the circumstances that led to approval.

Celgene provides assistance for REBLOZYL including “educating patients about insurance coverage or other programs for which they may qualify.” There are restrictions.

http://www.celgenepatientsupport.com patientsupport@celgene.com 800-931-8691, Monday–Friday, 8 am–8 pm ET

[Bob]

If someone at the Foundation, or anyone for that matter, who has information about Medicare coverage for Luspatercept – please post it here.

[Gladys Mize]

I was diagnosed in 2014 with MDS & started taking Procrit in 2015 & did so for several years with 3-4 transfusions a year. Last September the Procrit stopped working for me and I was having transfusion weekly. I was taken off of Procrit & in February I had a round of Dacugen (chemo- 1 hour per day for 5 days) without any major side effects. In March my numbers dropped significantly & I ended up in the ER with a hospital stay of 6 days. I got out and COVID hit so we had been prolonging starting the chemo again & I have been receiving transfusions monthly. My HGB numbers get to 8.9 the highest. I read about Luspatercept & asked my doctor if we could try it. I had my first shot last Monday (7/20) and go back today (7/27) to see where my number is. The worse part is I have no energy, worse then when my HGB is low. Luckily, I’m working remote so I can rest & work with my laptop on my lap. I have heard good things about the results so I’m staying positive. Will update you all later. I’m grateful to not have other worse side effects & it’s good to hear it’s work for people. My ferritin level is close to 4000 so that’s another issue but not as bad as having low HGB. One day at a time.

[Len Tillem]

I just had my 3rd Luspatercept injection.
So far no discernible benefit.
I receive approx. 3 transfusions a month.
My ferritin # is close to 4000.
I decided with, my oncologists approval, to get a transfusion whenever my HGB gets into the low 9s.
A quality of life decision.
Below HGB of 9 I’m bedridden.
I saw a video by an oncologist put on by Leukemia Society about wheatgrass lowering ferritin.

Myelodysplastic syndrome. Wheatgrass acts as iron chelator

Google this topic.
I’m drinking 3 oz. of wheatgrass each day.
It’s pressed fresh and sold at a local market.
Has anyone else tried wheatgrass?

[Kenan White]

Gladys: Thanks for the very helpful information. I was diagnosed 2 years ago, in the summer of 2018, although looking back I think I’ve had it for quite a while. I’m currently on Procrit with a dose of Zarzio each week to boast the effectiveness of the Procrit. I ‘live’ in the 7.5 range, but for me, that is doable and am able to live pretty much like I want – no marathons but I’m not complaining. I’ve had one transfusion in the beginning when they were monkeying around with the Procrit and took me off for 6 weeks, but since then, I been able to avoid. My doc wants me to stay with this protocol until it stops working – wondering how you knew that Procrit had stopped vs a bit of a hiccup. I’m dreading the day when I go in and it’s obvious that we need to switch to a new protocol. Fingers crossed that the Luspatercept is your answer – it’s such early days right now for anyone to give definitive reviews. Keep us in the loop and best of luck. Stay safe.

[Chelsea Clark]

Real-time analysis of cell behavior can assist molecular biology research in a way that conventional cell analysis techniques have not been able to do in the past. Different from PCR, flow cytometry, immunohistochemistry and other technologies that only have images

[James McQueen]

I was diagnosed with MDS-MLD-RS about two years ago. Started treatment with Procrit without success followed by Vidaza which helped for 18 months without need for transfusions. Then the Vidaza treatments began to fail and transfusions were required to maintain Hgb above 8.0. Had my first injection of luspatercept on July 13,20. One week later on 7/20/20 my Hgb had increased to 8.9 with no noticeable side effects from the injection. On 8/3/20 my Hgb had increased to 9.7 and I received my second shot of luspatercept. So far so good.
Jim M.

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