Myelodysplastic Syndrome (MDS): how to increase red blood cells?

Is md Anderson in New Jersey a good place for 2 nd opinion I’m currently in Inqovi an needing a lot of trans fusions

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?

@kgerbitz, Whether or not you’re a candidate for a transplant is something you’ll need to discuss with your doctor. There are a number of factors besides age that are taken into account such as the overall health and any co-morbities. There’s an extensive testing and evaluation week beforehand that lets the transplant team know if a patient a potential candidate.

But I’ve recently been mentoring several patients referred by my local oncologist who have gone on for transplant and 3 of them have been in their mid 70s…so, never say never. I was 65 at the time.
But I will be honest, it’s not a walk on the beach and is a last resort. So if there are other options available to you, your doctor may opt to proceed in that direction.

What is your current treatment and how long have you been receiving the shots so far?

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.

Dropping 8.1 to 7.7 isn’t too drastic in itself, But having that low level of hemoglobin definitely has you feeling that fatigue and lack of oxygen throughout your body.
There’s not much you can do right now except listen to your body and take rests as needed. I can truly appreciate the frustration in having to be sidelined a little more when you’ve been very active all your life!

But seeing that you haven’t had consistent treatment since your first injections almost 5 months ago, it’s not a fair test. So you may be surprised when you start the medication again on a more consistent level. The red blood count may level out and start reversing. 😉

Just curious if you were spending the winter down south? When I required treatment my nurse coordinator at Mayo set up appointments for me in the infusion center of a hospital in the same city where we stayed in Florida. Would this be an option for you in the future?

Are your other blood numbers down too? A drop in the white blood counts would allow for more infections and drop in platelets, along with the red blood cells would have you bleeding and bruising more. It’s not uncommon for patients with MDS to require blood or platelet infusions. Have you had either one of those yet?

White count is ok. No other treatment so far.