Recently diagnosed with MDS with anemia and would like to connect

@shoch1957
I do find myself more concerned wrt IO than the MDS as my iron saturation % is 92 and ferritin level has been as high as 600. Have not started any chelation treatments. How to spare organ damage from IO is my concern but oncologist seems not concerned.

@easrham
Same here. IO 585, 94%?saturation. They have given me phlebotomy’s to control IO that pushed my hg levels too low, then iron chelation medication “Jadenu” and that messes with kidneys and liver. Now, just controlling hg levels.

@shoch1957
It is difficult to find a treatment program that helps as one thing that helps in one area messes up another.
I must say I am new at this texting but it is helpful to speak to others who are going through the same or similar situations.

@montauk
I can definitely relate. I am 78, and my MDS was diagnosed about a year ago. Tried everything with no success—transfusion dependent now and receiving blood about every two weeks. Revlivid did not work for me either, nor did it after about 6 months, despite trying it again based on another opinion. It's a battle every day with sluggishness, sleep, water retention, and nausea. I guess, STAY STRONG is my only advice. Keep in touch on this site, and hope something works. Best of luck.

@jeffreykassover1

I went from leg pressing 1000 pounds for 3 sets of 10 in
May 2025 to laying on a couch right now ( 7 months later) typing this. I live near the water in Florida and yesterday I tried to force myself to go to a beach for the sun and I could not carry a 10 pound beach chair 100 feet without thinking I was going to faint. I never got to the sand. Laying down right now at 3 in the afternoon. My hemoglobin right now is about 7.0

@montauk
I totally get that feeling but my hemoglobins could be anywhere from 10-8 and I still feel that way. I was a contractor. Very active. Now I watch tv.

@montauk I
I know the feeling. I'm in Boynton Beach, Fl, and mostly housebound. Late afternoons and evenings seem to be better for me. 7.0 probably needs a transfusion. I've gotten so many this year...right now is my longest at 3 weeks. Trying to see if the Remlivid will do anything. Hang in there. Jeff

@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.

@jeffreykassover1

I am in Naples so we share this beautiful State.

The longest I ever went without a transfusion was about 21 days, with the last few days of this time span without a transfusion, I wasn’t sure if I would awake the next day.

However what is mind boggling and eye opening and sobering
is to see how many people are in the blood clinics and blood transfusion centers battling the same condition.

Keep the faith !

@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.