[Debbie Gill]

Hi Steve,

The 3% that you see in you BMB is the amount found in your bone marrow, where if you see “blasts” and a percentage on your CBC w/Differential that is the percentage that is found in your circulating blood.

There was pages and pages of information in my BMB report too, but unfortunately I don’t understand 99% of it! lol

Hope you’re doing well!

Debbie

[Debbie Gill]

Hi Steve,

If there are blasts, they will appear under the “Differential”. Mine showed up like this:

If there aren’t any, it won’t show up.

Debbie

[Debbie Gill]

Hi Steve,

Thank you so much for your response. This is very helpful. I was diagnosed in October 2018 with MDS (unclassified). This was the first time that blasts have shown up on my CBC w/differential, so my concern was that it may be something that indicates a progression of the disease. The oncologist that I had was monitoring my LDH, which was slowly rising each month, with the high at 258 on May 1st. I have a new oncologist and he doesn’t believe it is necessary to monitor it! I think I am going to advocate for it when I see him at the beginning of July.

Keeping positive thoughts for you, Steve! Best of luck and thank you once again!

Debbie

[Debbie Gill]

Hi Kathy,

Thanks for your response. I know that I need to discuss this with my oncologist, which I will do in July (I will have one more CBC w/differential before the appointment). I was just wondering about the addition of blasts in the peripheral blood and if others have experienced it with declining numbers and what their experience was. I do know that MDS is different for everyone…a scary disease to be sure!

Thanks again! Have a great day!

Debbie

[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

[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

[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

[Debbie Gill]

Hi Michael,

Thank you very much for your reply. I appreciate it!

Best,

Debbie

[Debbie Gill]

Hi Michael,

Thanks so much for your comments. I will talk with the hematologist, but with more general questions. I really am not a science person (I’m a Spanish professor!), so I wouldn’t understand the “science” behind it anyway! I do watch my numbers, though. I have panocytopenia, with my ANC most recently dropping to 0.25 (and the reason for the “stay at home unless it is to go to a doctor or the ER”). I have blood work in a couple of weeks, so I’ll see what happens then. I also am not going to live in a bubble because until six months ago I didn’t know any of this was going on and I was living a normal life. So, I need to be aware and careful, but at the same time not worry about it and go on with life! 🙂

Have a good day and best wishes to you too.

Debbie

[Debbie Gill]

Hi Donna,

Thanks so much. I was supposed to have my surgery for the endometrial cancer at the end of September, but because my platelet count was in the low 50s (and my other counts were a little low) the surgeon didn’t feel comfortable operating until I went to a hematologist and the two of them consulted. So, in October I went to a hematologist, and at the end of October he did a bone marrow biopsy and consulted with the surgeon to let her know that he thought it was important for me to have the surgery because of fear of the cancer spreading. I met with the hematologist for the results of the bone marrow biopsy and it was at that time that he told me that I had MDS and that we would be doing a “wait and watch”, with blood tests every four weeks. Of course, as I said, I didn’t ask the questions that I should have asked because I was worrying about the endometrial cancer (which was the only reason I had gone to see a doctor in the first place…long story 🙂 ).

So, in November, I had the surgery (my platelets had gone up to 67,000 and my other counts will not too low) for the endometrial cancer and I am very happy to say that she was able to get it all (I had a complete hysterectomy) and I did not have to have radiation or anything. We did a three month check and everything was clear and I have been cleared to not come back for another check for six months!

I go back for a follow up about the MDS in June. I am not going to a Center for Excellence for the MDS (although I have heard that I should consider it). The doctor I have specializes in MDS, although he is not at a Center for Excellence, but rather at one of the other UPMC cancer centers (UPMC has a Center for Excellence in Pittsburgh) who treats MDS patients in the other part of PA. We’ll see what he says at that time. He has been in touch with me every month since January because my ANC has now dropped to 0.25, my WBC to 2.0, and my RBC is dropping once again. He has me on “house bound” because he is worried about infections.

This is all just a bit scary!

Do you have MDS and do you go to a Center for Excellence?

Debbie

[Debbie Gill]

Hi Donna,

Thanks so much for responding. Please don’t worry about it. I’ll just worry about my counts and not these and when I go back to the doctor’s in a couple of months, I will ask him to explain the results to me instead of just saying “Your biopsy results are back and you have MDS”, and handing me a two-page document that he printed off of the Internet and with very little explanation. My fault, I should have asked for more of an explanation, but I was thinking about the surgery that he was finally going to okay for me to have for endometrial cancer.

Have a great evening and thank you!

Debbie

[Debbie Gill]

Hi Donna,

Thanks so much for your response and sorry for the confusion! I at times are in panic mode when I see some things.

The CD Markers were part of a bone marrow biopsy. For example, this was a list from part of the biopsy:

(3.3% of the analyzed cells)
CD34 positive, CD117 positive, HLA-DR positive, CD33 mostly positive, CD13 partially/dimly positive,
CD123 dimly positive, CD7 subset positive, CD56 negative, CD14 negative, CD64 mostly negative, CD36 negative,
CD15 negative, CD11b negative, CD16 mostly negative, CD19 negative.

Then there was more about “many maturing myeloid cells/granulocytes”, etc.

I just didn’t know if the positive/negative of certain markers would mean something that I would understand (which I probably wouldn’t, but…).

Thanks again!

Debbie

[Debbie Gill]

Hi Michael,

Thanks again for your message.

I am on “watch and monitor”, with an antibiotic and an antiviral medicine. I am very diligent about hygiene and washing hands, etc. The doctor has told me he wants me “house bound” and not to be around more than two or three people (who aren’t sick!) at a time, until he figures out what is going on and definitely no air travel (we talked about this because I am supposed to be presenting a couple of papers at a conference). I also don’t want to shut out the world yet, but I will listen to him for now. I teach at a University and was lucky this semester to be teaching only online (only because I had been diagnosed with endometrial cancer and had surgery for it). Teaching online will change in August, so we’ll see what happens!

I am not feeling bad, except fatigued, chills, and bone soreness (worse at night than in the day). I did have an infection in my lower leg which was treated, but seems to be acting up again, so we’ll see.

I definitely will continue to live as full a life as possible too!

Take care and thank you!

[Debbie Gill]

Thank you for your response, Michael.

I was diagnosed with MDS (unclassified) in October 2018. I also have monthly blood tests. All of my counts (White, Red, and Platelets) are low: White at 2.21, Red at 3.79, and Platelets at 67. My most recent ANC was 250, down from 400 the month before. That was the reason for my question as I have a doctor who is a little bit
non-communicative, although he does tell me to not worry about the numbers, that he is trying to figure why they are doing what they are doing.

Thanks again!

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