[janis hamada]

Hello Cerby Sam and Kenan White,
I’m sorry that you were not feeling well on Luspatercept…are you being closely monitored by your MDS or MPN specialist? Sometimes it takes a while (Kenan–6 months transfusion-free is really great!). Hopefully Cerby, you will eventually see improvement or perhaps this medication is not working for you.

I have MDS/MPN crossover (double whammy) with severe anemia in the 6’s and was on Luspatercept for about 8 months last year. It did not make me ill, but also it did not work at all, which was very disappointing.

There are new therapies being developed, and am optimistic that soon there will be a medication for anemia that will help those of us with these rare diseases.

May you feel better soon! jen

[janis hamada]

Congratulations John Bradley on your success with Luspatercept– May you continue to have good results! Please do keep us posted on your progress.

[janis hamada]

Hello everyone,

I quit taking Luspatercept after 20+ injections did not help raise hemoglobin. (it works better for those with ringed sideroblasts, apparently). I only had side effects after the first dose (lightheadness) After that, none, even with the highest dose, and I am a very small person.

My oncologist prescribed Revlimid. Research shows that it is “supposed” to help those with MDS with 5q deletion become transfusion-independent.

It costs between $20-50K per month, but the manufacturer, Bristol Myers Squibb (BMS) has an assistance program where patients can get it for no cost. It is a “black box” drug with many possible side effects. Haven’t taken it yet.

Has anyone had experience with Revlimid?

Please let us know.

Sending good wishes to all, janis

[janis hamada]

Hello,
Thank you for providing this valuable and informative report. Congratulations on achieving positive results with Luspatercept!!
The potential synergistic effect of Luspatercept combined with an epo agent is very interesting.

As a result of reading your post, I may ask my oncologist whether a larger dose (1.25 mg/kg) may be beneficial as opposed to the 1.0 mg/kg dose given to me for the last 10 times (since June), although side effects will probably increase as well. 🙁

Please keep us updated on your progress!

All the best, janis

[janis hamada]

Hello Mr. Tillem,

Phone is 1-510-459-7330. (Bay Area, CA) Please call at your convenience!
Or if you prefer, please forward your contact information.
Looking forward to hearing from you.

Thanks, janis

[janis hamada]

Hello Mr. Tillem,
Thank you for sharing your experiences with Luspatercept. I had my 10th injection yesterday and still do not believe it is helping. Would you consider speaking to me about this further? Apparently there are not that many of us with MPNs who have tried Luspatercept. Am sending you good thoughts as we are battling these “orphan” diseases.

Thank you, janis

[janis hamada]

Hello, Thank you for responding! MDS/MPNs seem similar to the way Covid-19 affects people in so many different ways. My only side effect from luspatercept is high BP. (systolic increased by 30 points), so had to start amlodipine 2.5 mg. Yuck. BP had increased only very slightly while I was on Aranesp for 2 years previously-but-the Aranesp stopped working. Agree with you–we might be in the other 63%. I’m still on HU and hate it, but doc says I need it for the ET.

Where are you located? Are you satisfied with your current medical team, and have you considered getting a second opinion? A friend has ET,Jak 2 neg, CALR + and is getting tele-appointments with Dr. Ruben Mesa. He has helped my friend so far.

Please keep me posted–sending good thoughts to you. Stay safe, janis

[janis hamada]

Hello, I’m a 74 y/o female diagnosed with MDS/MPN Thrombocythemia 4 years ago. Have had 9 injections of luspatercept so far and am not convinced that it is working. (at 1 mg/kg weight dose) Had one transfusion in mid September which brought Hgb to 10.0. It is now almost in the 7’s, and I can play golf almost every day (for what it’s worth!)

Are we guinea pigs for this newish drug for MDS?

Please advise your experience with this drug. Thanks–hope you are feeling well.

[Author]

Posts