CD Markers

[Debbie Gill]

I am pretty new MDS and I was wondering if there are certain combinations of CD Markers (i.e., certain numbers and +/- of those) that would flag something. Or, is this something that I wouldn’t be able to tell by looking at it (i.e., that only a discussion with the doctor would be needed)?

Thanks in advance for any light that can be shed on this.

Debbie

[Donna]

Hi Debbie,
I’m not sure what you mean. Do you mean in blood work results……the numbers of white blood count, platelets, red blood cell count, etc?

[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

[Donna]

HI Debbie,
I’m sorry that I can’t help. I really don’t understand that CD stuff. I will look at my biopsy results and see if it says anything about all the CD numbers.
Donna

[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

[Donna]

Debbie…Wow…I am sorry to hear you have endometrial cancer. Is that a recent diagnosis along with the MDS? So if he gave you the okay for surgery, maybe your numbers aren’t too low. When do you have surgery and when do you follow up about the MDS? Are you going to a Center for Excellence for the MDS?
Donna

[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

[Michael]

Debbie
Your question about cd markers is likely way above the pay grade of we patients using this site. Best to ask your hematologist.
At mds dx 3 yrs ago, I tried to learn as much as possible and overthink the whole ball of wax. At one time my wife suggested that if I kept asking questions that the MDS expert I am seeing at a Center of Excellence was going to toss me on the street.
I have been on watch and wait for three years. I get monthly blood work locally and travel to NYC (3 hrs each way) every six months to see the expert. It took awhile before I stopped paying attention to the numbers and stayed concerned about symptoms( as recommended by the expert). I am a retired accountant so ignoring numbers didn’t come easy.
Maybe your local hematologist can refer you to someone at a C of E and you can follow an approach similar to mine. I have one cytopenia (neutropenia) and my anc is nearly always below .5 (severe neutropenia). To date I’ve only suffered skin infections and while I am careful I don’t live in a bubble.
Best wishes.

[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

[Donna]

Hi Debbie,
Yes, I do have MDS and I do go to a Center of Excellence. I am a nurse so I have an interest in learning whatever I can about MDS, however, I have been away from clinical nursing for many years and frankly, never heard of MDS until Robin Roberts, a TV personality in Boston got it. She talked about it when she was diagnosed and they kind of followed her whole journey on TV. Her sister was a donor for stem cell transplant and Robin is fine now. At least she is still on TV and looks fine. I pay attention to my numbers because, in my case, numbers and mutations seem to matter. Because my platelets have been in the 40s for a few months, my last bone marrow biopsy showed some disease progression, WBC around 1.9, RBC around 3, hemoglobin stays above 10, ANC .60. Everyone has a different experience with this MDS. I think some docs go by symptoms. Mine wants to, rather than do palliative care, try to slow down the progression, so I guess I’ll be starting Dacogen soon. I go back next week but he had me sign the consent forms last visit. Maybe if my numbers are better, we will wait another 3 months. I’ll soon find out. I just get tired easier and have to pace myself a bit. I also get a lot of bruises. Well, take care. Keep us informed as to how you are doing.
Donna

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