MDS and anemia

@slmaples

I, too, was in clinical trial 0974 & it did not work after several months although it did increase my hemoglobin a bit. I was then put on Aranesp in May 2025 & my hemoglobin has pretty much stabilized between 10-11 with a 300mcg injection every 3 weeks. I'm happy to report, no apparent side effects at this point.

@montauk I felt really good the first few weeks then I settled into the 11.3. I would definitely pursue the clinical trial. I have Intermediate risk Myelofibrosis - MPL with an adverse mutation - SRSF2. I’m headed for a BMT. I’m 66 now so most likely before I’m 70.

@davi0937

Glad to hear you remain positive and are a candidate for a BMT.

There are so many variations of blood diseases that treatments are complicated and results uncertain.

Hopefully in 5 years discoveries are made to increase the success of treating these conditions.

In the meantime tiredness, dizziness, lack of energy, heart palpitations and life shortening are experienced by millions of people world wide with blood disorders.

@montauk agree! In some ways we are lucky with the amazing new drugs to help us. Not a cure but symptom relief. I was reading about the research with CRISPR where the technology can actually change mutations back to normal. It’s not happening on humans yet but 5 years? Maybe?

@jeffreykassover1

I was on Revlimid for a total of 4 months straight with pills every day ( no breaks).

Started at 5 mg for 2 months with no affect and then switched to 10 mg with zero affect.

Doctor discontinued me because of failure to work.

Then went to Rebolyl ( spelling) .
I have had 3 shots at 3 week intervals and scheduled for 4 th shot this New Year’s Eve morning.

So far the first 3 shots have done nothing.

My weight has stayed static at 160 pounds.

My biggest complaint is very dizzy. It feels like vertigo..

I test myself in a blood pressure cuff and have normal blood pressure.

QUESTION:

Is you weight gain from drug induced holding water or an calorie consumption increase ?

@montauk ...Thanks for your reply. I certainly do not think I am eating too many calories; in fact the opposite. I'm eating very few calories but continuing to either gain weight or not lose weight. I put on about 30 pounds in a few weeks and went into the hospital over Thanksgiving. Then lost 28 pounds in 3 weeks. Now, the trend up again, and my cardiologist is involved. Trying a different dosing on Remlivid, and checking blood regularly. Transfusion, last week. Rebozyl next, I suppose. Stany Strong.

@jeffreykassover1

That is a large weight swing.

I hope they identify the cause and treat it.

I get weekly blood tests for the past 7 months with my next one in 3 days. and transfusions every few weeks
.
I estimate my hemoglobin is 7.5 today based on my dizziness.

Keep me in the loop.

Thanks, I will.

MDS and Cladribine - I had (have) hairy-cell-leukemia ("successfully " treated). According to AI,
Cladribine can give you MDS. I think my excellent hemo-doc is doing cya, telling me the MDS was there before, but "hidden" from the bone marrow analyses by all the hairy cells.
Looking up MAIDS.