Recently diagnosed with MDS with anemia and would like to connect

Posted by lindak123 @lindak123, Aug 4, 2025

I would like to share information with others. Thanks

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Profile picture for Lori, Volunteer Mentor @loribmt

Hi Linda, There are several types of hormone-like substances that stimulate bone marrow to produce blood cells, called hematopoietic growth factors. For instance, patients with MDS, if experiencing a reduction in the output of red blood cells, may be given a drug called Erythropoietin (Epo or Procrit), a growth factor that promotes red blood cell production. This may help avoid red blood cell transfusions in some people. There are other forms of this drug as well.

It’s encouraging for you and your doctor to see your hemoglobin rising. You’re probably feeling a little more energetic too. What was the name of the injection you received?

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Aranesp -Darbepoetin Alfa

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Profile picture for Lori, Volunteer Mentor @loribmt

Hi Linda, There are several types of hormone-like substances that stimulate bone marrow to produce blood cells, called hematopoietic growth factors. For instance, patients with MDS, if experiencing a reduction in the output of red blood cells, may be given a drug called Erythropoietin (Epo or Procrit), a growth factor that promotes red blood cell production. This may help avoid red blood cell transfusions in some people. There are other forms of this drug as well.

It’s encouraging for you and your doctor to see your hemoglobin rising. You’re probably feeling a little more energetic too. What was the name of the injection you received?

Jump to this post

@loribmt Aranesp -Darbepoetin Alfa

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Profile picture for lindak123 @lindak123

I was diagnosed in April. My hemoglobin dropped to 9.3 and my doctor suggested I start taking injections of a hormone. I've had one injection which brought my hemoglobin up to 10.6. Has anyone else received injections of a hormone?

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The injection I receive is Aranesp -Darbepoetin Alfa

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Profile picture for montauk @montauk

Compared to many people a 10.0 hemoglobin level would be godsend.

Many people are in the 6.0 to 8 or lower range without continuous blood transfusions.

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@montauk I started injections of Aranesp -Darbepoetin Alfa a few weeks ago. My hemoglobin raised up to 10.6. Better than what it was. I go every two weeks for lab work. Hopefully it stays above 10. I wish you the best of luck.

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Profile picture for Lori, Volunteer Mentor @loribmt

Hi Linda, There are several types of hormone-like substances that stimulate bone marrow to produce blood cells, called hematopoietic growth factors. For instance, patients with MDS, if experiencing a reduction in the output of red blood cells, may be given a drug called Erythropoietin (Epo or Procrit), a growth factor that promotes red blood cell production. This may help avoid red blood cell transfusions in some people. There are other forms of this drug as well.

It’s encouraging for you and your doctor to see your hemoglobin rising. You’re probably feeling a little more energetic too. What was the name of the injection you received?

Jump to this post

@loribmt Aranesp -Darbepoetin Alfa

REPLY
Profile picture for lindak123 @lindak123

@montauk I started injections of Aranesp -Darbepoetin Alfa a few weeks ago. My hemoglobin raised up to 10.6. Better than what it was. I go every two weeks for lab work. Hopefully it stays above 10. I wish you the best of luck.

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@lindak123

Great to here your results.

What was your hemoglobin start point, and did you reach this level new elevated level with transfusions PLUS your medication ?

The highest I have gotten has been 9.0 with transfusions.

Revlimid and Reboslyl ( spelling) both failed to raise my hemoglobin and I am totally dependent on transfusions.

I will look up your drug info.

Thank you.

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Profile picture for montauk @montauk

@lindak123

Great to here your results.

What was your hemoglobin start point, and did you reach this level new elevated level with transfusions PLUS your medication ?

The highest I have gotten has been 9.0 with transfusions.

Revlimid and Reboslyl ( spelling) both failed to raise my hemoglobin and I am totally dependent on transfusions.

I will look up your drug info.

Thank you.

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@montauk Hi. My hemoglobin hovered between 10.0 and 10.6 when I was first diagnosed. It dropped to 9.3 and my Oncologist started me on the injections. The last time I had my blood work done, my hemoglobin was 10.6 so I didn't get the injection.I have not had a blood transfusion. My doctor mentioned that he would infuse iron if needed. I am tired most of the time and take lots of naps.

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Profile picture for lindak123 @lindak123

I was diagnosed in April. My hemoglobin dropped to 9.3 and my doctor suggested I start taking injections of a hormone. I've had one injection which brought my hemoglobin up to 10.6. Has anyone else received injections of a hormone?

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Why not Procreit?

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Profile picture for shoch1957 @shoch1957

@katgob
I guess I should’ve mentioned also that I am a male. I was diagnosed 4 years ago. My symptoms have always stayed about the same with some days better than others. I am currently receiving REBLOZYL injections every 3 weeks.

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@shoch1957 Hi, and hope things are improving for you. I am about to begin Reblozyl after trying almost everything else. How are you reacting to it?

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Profile picture for lindak123 @lindak123

The injection I receive is Aranesp -Darbepoetin Alfa

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@lindak123. That’s one of the preferred medications given for treating anemia. With your latest labs it certainly looks as though it’s working for you by raising your hemoglobin numbers. That’s very encouraging. Have you noticed any changes such as a little more energy?

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