Recently diagnosed with MDS with anemia and would like to connect

@montauk ...23 days without a transfusion, my record. But, going tomorrow for 2 units, Blood count was 6.9. Oh well. It was great at 8.9. About a year now with no real success, but it is a year. Hopefully, something positive will happen soon. All I can say is 'stay strong', the same thing I tell myself every day.

@jeffreykassover1

I have been multiple times at 6.9 and gotten two units of blood.

Now they transfuse me at 7.4 to one unit of blood.

Living alone at 6.9 I was not sure I would wake up.

Also having to get a blood sample for antigen reaction the day before allowed a transfusion is a mental challenge.

I wish they could use the weekly blood test sample as the same sample as the antigen test.

@shoch1957

I was an engineer and now I scour the internet looking at different medications for 6,8 to 7.5 anemia without transfusions.

I know there are no miracle drugs out there, but I interestingly read about other peoples success stories and feel good for them.

I think I have read about every drug write up, as now being a couch potato pseudo scientist.

Because I hover between 6.9- 7.5 without transfusions, and at best peak at 8.5, I dream of what 9.5-10.0 would feel like.

Take care of yourself and cherish your good days, and know there tens of million of people in the world in the same condition.

I have MDs with hg levels between 9.0 & 11. When doing any activity I lose energy quickly, my heart speeds up & I feel air hungry, like not enough oxygen. I have to stop, sit down and recover for a minute. My hemotologist says I shouldn’t feel this with my hug levels sniff it must be something else. I think I just use more oxygen than others. Anybody else have this ?

I have MDs with hg levels between 9.0 & 11. When doing any activity I lose energy quickly, my heart speeds up & I feel air hungry, like not enough oxygen. I have to stop, sit down and recover for a minute. My hemotologist says I shouldn’t feel this with my hug levels sniff it must be something else. I think I just use more oxygen than others. Anybody else have this ?

@montauk disc 0974 clinical trial. Took me from 8 to 11.3

@davi0937

I have MDs with hg levels between 9.0 & 11. When doing any activity I lose energy quickly, my heart speeds up & I feel air hungry, like not enough oxygen. I have to stop, sit down and recover for a minute. My hemotologist says I shouldn’t feel this with my hug levels sniff it must be something else. I think I just use more oxygen than others. Anybody else have this ?

Wow !

With 2 units of blood tho highest I ever got was 9.

Can you honestly say you feel tremendously better, or is it better, but just marginally ?

The reason I ask is my dream, once in my remaining lifetime I would love to see what 10 or 11 hemoglobin would feel like from my normal low value of 6.9 to high transfused value of a high of 9.0.

My levels go up EXACTLY one digit per transfusion unit.

You had a marked higher elevation per 2 units infused.

Sometimes you get a transfusion which it right at its expiration date limit which already had hemoglobin degradation,

So glad to hear you are in the 11’s.

Let me know how much better you feel, and is it real as measured by significant energy improvement or more psychological .

You went up so much in hemoglobin !

I hope it stays above 9 for as long as possible.

That is fantastic !

Merry Christmas.

@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.