Living with MDS (Myelodyplastic Syndromes)

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?

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!

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?

Thank you for your input. You are right this is a very complex disease.

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.

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).

Thank you for this information I really appreciate your comments!

Hi @statmatics, just popping into the conversation for a moment. If your wife has future Neupogen or Nulasta injections to boost her neutorphils, one of the usual recommendations from oncologists is for the patient to take regular Claritin (not Claritin D). One capsule per day from the day of the injection for up to 7-ish days or more. I had to take them up to 10 days. Neupogen promotes a rapid production of the white blood cells which can cause pain in the bone with the expansion. It is usually relieved as the cells spill out into the blood stream.
The Claritin really helps with the pain. Ask her oncologist if it’s ok for Rachel to take them.

Thanks, Lori. Who would guess? Claritin? We will run it by the hematologist tomorrow. Yes. Blasts were in the blood soon after the Filgrastim shot. The hematologist does not like it for that reason. -- Our main question tomorrow is what caused Rachel's neutrophils to increase during her hospital visit of February this year. Why did they go up? See chart.

I asked the doctor about the neutrophil increase while Rachel was in the hospital. You can see from my chart that her neutrophils are historically low, but, during her February hospital stay, they shot up to almost normal. The hematologist surmises that, because she was fighting a major sepsis infection in the hospital, the bone marrow went into overdrive and produced white blood cells to save her life. Thank you, bone marrow!