Living with MDS (Myelodyplastic Syndromes)

Hi Drawl - Rachel is taking Retacrit treatment only at this time. It seems to be helping the hemoglobin, but the neutrophils are still way, way down around 100. She took a Filgrastim shot in the hospital which brought the neutrophils up momentarily, but they crashed back down almost immediately. Right away after the Filgrastim shot, Rachel had a very painful experience as the drug messed with her bone marrow. The nurses said this happens quite often with Filgrastim (also called Neupogen).

Hi Pat -- It took about a year for the hematologist to cement in an MDS diagnosis. Before that he would call it using wishy-washy words like "lazy bone marrow" and "a tendency toward MDS." As I understand it, MDS in particularly hard to discern, even with a bone marrow biopsy. Again, I am an amateur, but you can certainly ask for Procrit (or Retacrit) treatment, which is a well-known treatment for low hemoglobin. There might be reasons your hematologist has not suggested this, but Rachel finally took Retacrit and her numbers are improving nicely over the past few months.

Is Rachel on any kind of treatment/chemotherapy?
Reason I’m asking is that I was diagnosed with MDS in March. I’m being treated with Dacogen. I was hospitalized with a blood infection in April. Man, my white cell count dropped so low.
It stayed low until my Dr dialed the Dacogen back, allowing my body to recuperate and bring my white count up on my own in between treatments . Last week my absolute neutrophil count was 1450 - ‘almost’ normal. I was so happy. But then yesterday I had bloodwork done & it had dropped to just over 500. I was very upset; I’m trying to do all the healthy things but it’s the Dacogen wiping out the good, the bad & the ugly.
Did Rachel get anything in the hospital for the low white count?

I am too waiting to have MDS confirmed. I have had two bone marrow biopsies and have very low hemoglobin and large red blood cells. My hematologists csnt confirm that I have MDS. Do I’ll have a third biting August. Basically o have no energy! I would love to get some treatment!

I had low platletts and thought it was a drug interaction but my oncologist sent me for a bone marrow biopsy and they found two mutations, one with poorer outcomes, Since then, it is one of the conditions he follows me for.My impression is that it is so individual, one has to not try to see it in generalities. Every one seems to experience it in a different way.

For you experts: We see the hematologist on Monday and I have some questions for him. We have been tracking my wife's CBC numbers for 18 months. She developed a stomach ulcer which led to sepsis which crashed her into the hospital in February 2025.

The graphs show her hemoglobin and absolute neutrophils over the past 18 months.

The hemoglobin is responding nicely to retacrit shots and blood transfusions. Thank God.

But look at Rachel's neutrophils. They have always been super low, even when the hemoglobin was normal back in January 2024. However, something in the hospital sent the neutrophils upward, almost to normal. After the hospital, they returned to super low. What do you think is going on?

Hello @momz @nbadry @rrivory @honeymae. I know that you’ve all been diagnosed with a blood condition called MDS or myelodyplastic syndrome. Some of you are still in the ‘watch and wait’ period or a kinder term would be active surveillance, where you don’t require any treatment. But because the bone marrow isn’t functioning properly, you may already start feeling some of the symptoms of your bone marrow not turning out healthy blood cells. I thought it might be helpful to give you some articles to read which really help spell out the conditions of MDS in an attempt to answer some of your questions about why the wait for treatment and what treatments are available should you require them.
Because I’ve already had a very aggressive blood cancer (AML) and happy to say I’m now ‘fit as a fiddle’ and in a durable remission, I want to help you understand that even though your diagnosis can be scary, this doesn’t have to take over your life or define you going forward! @rrivory summed it up nicely, we can’t dwell on the “what ifs”…that just gives us too many opportunities for negative self talk.

So, the best attitude is to pick up where you are and face this head on. Knowledge is power so here are the articles I feel are good sources for your information.
https://www.healthline.com/health/cancer/mds-hematology#symptoms
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https://www.verywellhealth.com/what-are-myelodysplastic-syndromes-mds-2252548#:~:text=Myelodysplastic%20syndromes%20%28MDS%29%20are%20a%20group%20of%20bone,how%20the%20bone%20marrow%20creates%20healthy%20blood%20cells.
I really do appreciate how frighting it is to read through these articles and worry that your diseases may progress. @rrivory, is already having discussions of having a bone marrow transplant which will give her a completely new immune system…for a second chance at life. It works! I had one 4 years ago and now feel amazing, like nothing every happened. I was 65 at the time…now 69 and feeling incredibly healthy and fit. A friend I met at the same time I had my transplant at Mayo-Rochester had MDS! She is also doing fabulous…no more blood cancer!

@rrivory, there are quite a few of us in the forum who had a SCT using donor cells (allogenic transplant) and we’ll help you along your journey so keep me posted with updates, ok?

Thank you Lori. I will do my blood work next week to see if the white cells have come down. I will talk to my oncologist about my itching. I did a bone marrow biopsy so will get the results. I hope the CMML isn’t progressing. I also
Started a new medication my oncologist put me on for my kidneys. It’s called allopurinol. It could be that too that is giving me the hives.