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@kgerbitz

My red blood count is decreasing despite shots. What’s next ?

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Replies to "My red blood count is decreasing despite shots. What’s next ?"

Good morning, @kgerbitz Myelodyplastic syndrome is a group of blood disorders that can occur when the blood-forming cells in the bone marrow become abnormal. They can include one or all of the blood products with an underproduction of healthy red and white blood cells or platelets. In your case it’s your red blood cells.

Despite the best efforts with treatments sometimes that can’t slow the progression of the disease. Blood transfusions are one way to make up for the decrease in red blood cells but that’s not a long term solution.

When that happens, generally your oncologist will suggest a bone marrow transplant if it’s feasible for you. Because your own bone marrow is no longer able to churn out productive stem cells, having a stem cell transplant from another donor who matches your DNA is a positive alternative. It is the only option for a potential cure.
I had a bone marrow transplant for AML, another type of blood cancer 4 years ago and “feeling fab”. I’m also currently mentoring a woman in our hometown who has MDS and just underwent a transplant. She’s doing very well at day 40 post transplant. Another friend, whom I met when we both underwent stem cell transplants at Mayo at the same time 4 years ago is living like this never happened. I’m only bringing this up because this is an area where I’ve had a great deal of experience. Only you and your hematologist will be able to decide what happens next in your treatment. But the stem cell transplant is often the ultimate treatment for MDS.

May I ask how long ago you were diagnosed with MDS? Has your doctor talked about other options for you?

Thank you for your very knowledgeable reply !
I was diagnosed 3 years ago but had no significant changes until this past winter. I am 78 and have always played golf and tennis and walked daily so being short of breath is new to me.
My doctors current plan is a shot every 2 weeks until I see him in 4 weeks.
Do you think someone my age is a candidate for transplant?

I had 3 injections nov/Dec of 22, then paused without knowing if blood count had improved or not bc of being out of town till April. I’ve had 3 since I got back; so far the rbc has declined from 8.1 to 7.9 to 7.7.
I don’t feel bad but I find myself short of breathe and not as coordinated as I’m accustomed to.

I should add that while I don’t feel bad, I look not good. My skin is a mess with bruises all over and I bleed if anything touches me. In the last year, I’ve had 4 un-accountable infections that required antibiotics.

@kgerbitz, I add my welcome. I moved your conversation with @loribmt about descreasing red blood cell counts and MDS to this existing discussion:

- Myelodysplastic Syndrome (MDS): how to increase red blood cells?: https://connect.mayoclinic.org/discussion/mds/

I did this so you can read previous helpful posts and widen your support circle with fellow MDS-ers like @jaylevel1 @littlelindysue @loula @tyson1221 @teteryan1 @shels93 @marcyjo and more.