MDS and anemia

Posted by shoch1957 @shoch1957, Dec 17 9:02am

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 ?

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shoch1957 | @shoch1957 | Dec 19 1:05pm

In reply to @vng "Thank you for your quick reply . May we know what type of MDS you have..." + (show)

@vng
As far as the type “ patient underwent bone marrow biopsy for the macrocytosis. This showed MDS with ring sideroblasts. Cytogenetics showed 46 XY. Next generation sequencing showed an SF3B1 mutation confirming diagnosis, along with hemochromatosis. I’m not familiar with Vidaza at all.

shoch1957 | @shoch1957 | Dec 19 1:11pm

In reply to @vng "Thank you for your quick reply . May we know what type of MDS you have..." + (show)

@vng
Also, IPSS-R score 1 for cytogenetics

easrham | @easrham | Dec 20 7:51am

I have MDS SF3B1 and my Hgb currently is 9.9 and I have those same symptoms. I have opted not to take any EPO meds at this time. I also have iron overload although I have NOT had any transfusions.

shoch1957 | @shoch1957 | Dec 20 8:56am

In reply to @easrham "I have MDS SF3B1 and my Hgb currently is 9.9 and I have those same symptoms...." + (show)

@easrham
Thanks for the reply. I too have iron overload with no transfusions. I can see I’m not “the only one” who feels this way.

easrham | @easrham | Dec 20 9:53am

In reply to @shoch1957 "@easrham Thanks for the reply. I too have iron overload with no transfusions. I can see..." + (show)

@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.

shoch1957 | @shoch1957 | Dec 20 10:36am

In reply to @easrham "@shoch1957 I do find myself more concerned wrt IO than the MDS as my iron saturation..." + (show)

@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.

easrham | @easrham | Dec 20 11:15am

In reply to @shoch1957 "@easrham Same here. IO 585, 94%?saturation. They have given me phlebotomy’s to control IO that pushed..." + (show)

@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.

jeffreykassover1 | @jeffreykassover1 | Dec 20 12:57pm

In reply to @montauk "I am 80 years old and have hemoglobin levels between 7.0 to 8.5 with transfusions every..." + (show)

@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.

montauk | @montauk | Dec 20 1:43pm

In reply to @jeffreykassover1 "@montauk I can definitely relate. I am 78, and my MDS was diagnosed about a year..." + (show)

@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

shoch1957 | @shoch1957 | Dec 20 3:08pm

In reply to @montauk "@jeffreykassover1 I went from leg pressing 1000 pounds for 3 sets of 10 in May 2025..." + (show)

@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.

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