Low blood counts

[Debbie Gill]

Hello all,

I was diagnosed in October 2018 with MDS (unclassifiable). Although my hematologist/oncologist did not discuss my BMB with me (he gave me a two-page handout about MDS and said “you have MDS, read this”), he said that the treatment would be “watch & wait”–blood work once a month. Fast forward to January 2019. Before then, my blood counts had been low (WBC in the 3’s, RBC in the low normal, platelets low 70-100’s, and ANC 0.7-1.6). Then, in January, things started to go down and have not stopped going down. Most recently (June 7) they are:

WBC 1.93
RBC 3.75 (still not too bad); HGB 11.3
Platelets 45,000
ANC 0.18

On May 20, my ANC had dropped to 0.23 and the oncologist (a new one!) ordered an injection of Neupogen (which was to be given to me every week that my ANC was not > 1.0). I had a severe reaction to it and therefore he stopped it immediately after the first shot.

The RBC Morphology has been Abnormal all along, but now it notes different cell types that it never has before (Anisocyte 1+, Ovalocyte 1+, Polychrom 1+, Teardrop 1+, Burr Cells 1+, Poik 1+). The Platelet Morphology is also Abnormal now too, with large platelets (few) and giant platelets (few).

Has this happened to others of you? Does it indicate that there might be a progression in the disease? I go back to see the oncologist in July, but I am so anxious about all of this!

Thank you all for listening to such a long post! My apologies!

Debbie

[Kathy Stermer]

Your best bet is to find a physician at a Center for Excellence that is an expert at treating this disease. It’s hard to find someone with your exact numbers/symptoms as this disease is as variable as there are cells in our body. Find someone who can more thoroughly explain what is going on so you can move forward with less stress.

[Debbie Gill]

Hi Kathy,

Thank you for your reply. The hematologist/oncologist that I am now seeing is experienced with MDS, so hopefully he will be able to guide me when I see him in July. I will have blood work twice more before I see him, so we’ll see what happens and I would hope that if something becomes urgent he would contact me. Going to a Center for Excellence is, unfortunately, not a possibility at the moment as I do not drive and I still work full time and need to continue to do so for as long as I can for insurance purposes. I just thought I would post just in case anyone else has had the experience of all of a sudden blood counts taking a dive and what was the result of that.

Thanks again! I do appreciate your reply.

Have a great day.

Debbie

[Bob]

I am not sure where you live; however, it is always better to go to a Center of Excellence. The real expertise is at one of the Centers. They just see so many more patients and I would be shocked if you were given a handout. Try to find someone to drive you.

[Debbie Gill]

Hi Bob,

Thanks so much for your response.

I have a new hematologist/oncologist who is well-versed in MDS and treats a good number of patients with it. One of the reasons for going for the second opinion was because the first one (who was affiliated with a Center for Excellence hospital, but at one of their branch locations) was because he was not very talkative, although very nice. It was this first one who gave me a two-page explanation of MDS (“Patient Education: Myelodysplastic syndromes (MDS) (The Basics)” from UpToDate–Wolters Kluwer).

I’ll see the new oncologist for the second time in July (the first time he still didn’t have the medical records from the first oncologist). Hopefully he will be able to answer questions and explain a little bit about what is going on. Going to a Center for Excellence is just not in the cards right now, but I do have the information ready for a Center for Excellence when it becomes a possibility.

Thanks for your response!

Have a good day!

Debbie

[Michael]

Debbie~

I go to Center of Excellence every 6 months (3hr drive each way) and see my local hematologist monthly. I was diagnosed with MDS in June 2016 and remain on watch and wait. At today’s visit: WBC 1.17, RBC 4.35, HGB 12.3 Plts 209k and ANC .11. These are pretty standard results for me. WBC and ANC ☹️

My local hematologist has more concern about my wbc and anc than my Ctr. Of Excellence physician. Fortunately in 3 years I only have had one infection requiring medical intervention. In March of this year I had a MRSA skin infection that required 3 rounds of antibiotics before clearing. I also received Neupogen shots to assist in wound healing process related to the infection.

[Debbie Gill]

Hi Michael,

Thanks so much for your response. About four months ago the old hematologist put me on an antibiotic and an antiviral as precautionary. So far I have only had one infection in my right leg and it cleared up with another antibiotic. Both of the hematologists I have had have been concerned with my WBC and ANC (and I figure the platelets will start to be concerning now too), the first one telling me to only go out of my house to go to the doctor or to the ER and the other one telling me it is okay to go out, but to be extremely careful and to avoid crowds as much as possible. So, I guess I’ll just wait and see what he says in July. Whereas there are different cell types now, that is what caused me to start to panic a little bit.

Thanks again, Michael!

Have a nice evening.

Debbie

[Robin Smith]

Debbie, did you eventually find answers regarding your platelets and blood counts? I’ve had “large” platelets for a while and now my last CBC revealed “giant” platelets. Both my WBC and platelet count (175K/uL) are within the normal range so I’m confused over the change from large to giant and definitely confused as to the significance of that change. Last week I was given my normal Procrit injection of 30 units at the same time I received Evusheld so I’m not sure if this change could be related to that. I did have the worst week of side effects I’ve ever experienced and, of course, spent the entire week contributing it to Procrit completely forgetting that I also got two injections of Evusheld at the same time. In any case, like you I’m sitting here wondering if the change in platelets is a signal of disease progression. Or if the platelet change could be related to the Procrit and/or the Procrit/Evusheld combination. The only thing I’m fairly confident in knowing right now is that giant platelets are, in fact, associated with MDS. Fortunately, I have an appointment scheduled with my oncologist in a couple of weeks and will, hopefully, be able to find some answers. Sincerely hoping you’re much less panicked at this point and doing well. Take good care..

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