MDS Diagnosis?

[Allan Romriell]

Lyssa,
Best of luck. Yes I remember sitting waiting for them to take me to the room for the biopsy. Surreal is the word. I had gone in for a checkup last april, thinking I should get a PSA as well as general checkup(I was 64, now 65). Doc thought things looked pretty good so sent me for blood work. I didn’t hear anything for a couple of weeks so figured all was well. About a month after the visit his nurse calls me to tell me my platelets were 1/2 of what they should be and they had set me up with a hematologist for follow up. He told me my platelets were 75,000 1/2 of low normal, my white count was slightly low and my hemoglobin was 11 so I was anemic and sent me for the BMB. I then followed up with Hemo guy again and he gives me the MDS cancer diagnosis. Sitting there listening to him my head is spinning and my wife and I walked out in a daze. We have 5 children and so started the calls and visits to fill them in plus calls to siblings and visit with my mother(very hard). Now I am almost 9 months since the first call from nurse and my numbers have all improved so that I am only low on the red blood side (as of Jan this yr), my Hemo guy is optimistic and we have learned a lot more about MDS and we are starting to get a handle on where we are and what the future will probably hold. It still messes with my head at times, not how I figured my life would go I guess, I was always very healthy, never sick much or had need for a doctor. You mentioned bilirubin and mine has been moving higher the last few months, now up to 1.6 I believe so I have been trying to drink lemon water everyday and other liver cleansing things to see if I can get it down naturally. Just caught my eye that your husbands is high and that’s the first I have seen others comment on that, so maybe that can be effected by this. Well I hope all goes well for the biopsy, it didn’t hurt too much, I only wanted to cry once… lol …. god bless you both, keep us posted.
Allan

[Malissa Kirszenbaum]

Thanks Allan. Just started a new thread after doing some research.
We have 4 children and we are going to wait until March 8th result day before speaking with them. They are young adults now. Leon is 62 and is a pharmacist – hoping to retire at 65. He is on his feet 12-14 hour shifts and is tired! I am 55 and worked as a paralegal for 34 years but stopped in 2015 after we became empty nesters. 35 years married and we are so scared for the first time of how much time we will have. My eyes hurt from all this reading. I saw fear in his eyes early tonight, real fear. Your story is encouraging. I read your entries to him tonight; uplifting. Thank you so much!

[Allan Romriell]

Best of luck, hope your results are as good as possible.
Allan

[Malissa Kirszenbaum]

Thanks Allan. Some of the serum tests are rolling in. I was a bit alarmed to see that his WBC is now a bit low. So far we have been looking at primarily RBC, HmG, Hem., MCV, etc. of course other results are coming in that require me to “search” definitions just so I can understand what results represent. His IFE and PE Serum was normal with normal SPEP pattern and no monoclonal proteins bit the serum a Kappa light chains was a bit high alongside a Kappa/Lambda ratio slightly elevated. I gather this test was for multiple myeloma. In addition to MDS, I guess he is looking for other stuff too. Bothers me on the low WBC though.

Hope you are feeling great.
Lyssa

[Allan Romriell]

Lyssa,
Yes getting a handle on the new “lingo” takes time and I still don’t understand some of it. Hope they get you some answers soon. I had a good weekend, didn’t do much and rested up, so feel pretty good to start the week.
Take care,
Allan

[Malissa Kirszenbaum]

Hi all, my best to everyone and hope that all are feeling strong and happy. I need a little help, we got some results back, not all but it is difficult to understand. I have the following information which states three things, one – mildly hypercellular marrow 50 to 60% with maturing trilineage hematopiesis and increased iron deposits, M E ratio is 2:1, immunostains highlights rare CD34(+) blasts (<5%), mildly increased storage of iron on clot section. The myloid disorder immunohistochemical analysis, CD34, QBEnd10 Cline, Endothelial & stem cells, GIST, Blasts = <5%. Help? Does this sound like MDS?

Thanks.
Lyssa

[Malissa Kirszenbaum]

Hello again. Took several hours to decipher and I believe the posted results above appear to be good news, although we have not seen his cytogenetic report yet. I imagine if this report is favorable the cytogenics should be too. Still does not shed any light on his low RBC, WBC, Hemoglobin, Hematocrit, high MCV, high MCH, low neutros, etc. and whether the MDS he suspected is even present given the prelim report. I guess we still have to wait until a March 8th for the rest (cytogenics). Hope this note finds everyone feeling good.

Lyssa

[Allan Romriell]

I can’t decipher it all but the fact that blasts are less than 5% is a good sign, mine were low as well which is good. My marrow is hypercellular at almost 80%, my doc said that is one MDs indication. HE said normal for me should be 40-50% so that seems to be a good sign for you as well. Mine was RS which means I have an iron ring around the red blood cells, due to iron not processing right some how so that was the clear indication of MDS although a mild form. Once again my main problem is with red blood cells and hemoglobin/hematocrit, which is the main problem with MDS-RS. I hope they can give you some definite answers soon. Take care,
Al

[Malissa Kirszenbaum]

Thanks Allan. I think, after additional research, w/o cytogenics, is MDS positive. His Anemia, and the rare CD34(+)(<5%) Blasts, increased iron deposits. I do not like the presence of the CD34(+), nor do I like the very high Kamma light chain number – over 276 (Kamma/Lambda ratio high). He is 61 so the 60% hyper cellular is a bit high like yours. I agree with you, Leon’s sounds a bit like your which is very comforting in the whole scheme of things in this MDS realm. I suppose we will have to wait for the cytogenics this Thursday. Thank you so very much for your presence here on this discussion thread. It is so comforting for me (caregiver), to be able to converse and share. I will let you know Thursday results. Enjoy this weekend. We are MD Eastern shore, right on the Chesapeake Bay with sustained winds of 39mph with gusts over 60mph. Feels like we might fly to Kansas or beyond lol

Best,
Lyssa

[Allan Romriell]

Lyssa,
Hope for good report on Thursday. Hope you all survived the storm, looked pretty fierce. We are in SW Idaho right next to the Oregon border. Its a fairly mild climate with very few really fierce storms. Nothing like the coasts or the Midwest gets. I too appreciate getting feedback from others. I share much with my wife as well as she is living it with me, as you are with your husband. So far the only people I know with this disease are those I have met online so this forum is great. Take care, good luck Thursday.
A.

[Rich]

As an update, more results show a “copy neutral loss of heterozygosity” of the 5q Gene. CN-LOH of the long arms of chromosome 5q is recurrent abnormality and in MDS it may be associated with adverse survival. What does this mean?

[Malissa Kirszenbaum]

Rich, here is something that may help but it requires a bit of reading. https://www.intechopen.com/books/myelodysplastic-syndromes/myelodysplastic-disorders-5q-syndrome. Also, there are a few good sites that will help decipher chromosomal results. Articles are a bit hard to get through but their charting is helpful. Sorry I cannot help you more in this. We are waiting for an Mds diagnosis o e way or the other tomorrow. My husband is 61.

Best,
Lyssa

[Rich]

Thank you Lyssa. This tells me a good deal more.

[Malissa Kirszenbaum]

HibAllan, hello everyone. Well, we Leon had his BMB result appointment this morning. We had good news yet no news. While Leon’s bone marrow is approximately 60% hypercellur, his blast count is <5%, but is showing increased iron deposits. His cytogenics report was normal and this fed into the Dr.’s good news that at present he sees no cancer within the BM. The frustrating news is that they are putting him in a “watch & wait.” His anemia remains “unnamed.” When pressed by a Leon in whether he has MDS, the doctor said it was possible but he wants to wait before giving that diagnoses. Dr. Determined that he has been anemic “unknown origin” for almost 3 years now. He did have one addition antigen clone they will watch, st present he is just under 1% Blasts. This Cd antigen is looked at as it is linked and sometimes a precursor to Leukemia. They will begin taking blood every two months to watch his counts which are low and abnormal, RBC’s mostly but WBC’s too which are low but a normal low for now. He mentioned another BMB in the near future. So, there it is. We both decided to celebrate today because today he is cancer free. We will trust God on the “watch and wait” and enjoy each day until he can’t. The Dr. said he wants monitor 6 mo this before making an MDS diagnosis. And yes, he did confirm cytogenics are prosnostic, not diagnostic necessarily.

Hope everyone is feeling well.
Best,
Lyssa

[Allan Romriell]

Lyssa,
That is indeed good news. I am sure not knowing the cause of the anemia is frustrating but still better than a cancer diagnosis. All the best to you both.
Allan

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