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Malissa KirszenbaumParticipant
Hi Nazina. This is an excellent article for you regarding your question – ways read too. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5625474/
Hope it is helpful, be well.
Best,
LyssaMalissa KirszenbaumParticipantRich, 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,
LyssaMalissa KirszenbaumParticipantThanks 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,
LyssaMalissa KirszenbaumParticipantHello 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
Malissa KirszenbaumParticipantHi 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.
LyssaMalissa KirszenbaumParticipantThanks 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.
LyssaMalissa KirszenbaumParticipantThanks 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!Malissa KirszenbaumParticipantThank you so much Allan. I am happy to hear that you are doing well and I hope you continue on this path. Sitting in the waiting room and it feels so surreal; scary. Last Thursday, we did not even know where this place was; life can change in 4 days. We will hope for the best until our results. I am happy to have found this forum and it does feel better speaking with others. My husband is 62. His PSA went up to 4.3 in January and his Bilirubin high too. His WBC still within the normal range but on lower side of. His MCV is also a bit high. He also had a few weird back to back stomach viruses (so we thought at the time) and developed A-fib rather suddenly last spring. He is now on a heart med and blood thinner. Fatigue, as you pointed out, is what is most noticeable. I am just preparing with knowledge and information. We have 4 adult children. Waiting for results before speaking with them. Maybe it is something else. 🙏 for all.
Best,
LyssaMalissa KirszenbaumParticipantAllan, my husband has had anemia almost a year now. His red blood cell, hemoglobin and hematocrit have been counted Low. After checking all the obvious, a blood smear showed abnormal red blood cells. We are scheduled this morning for a Bone Marrow Biopsy. MDS was mentioned by hematologist. He is a bit fatigued (hematocrit indicates approx. 2 pints short). It was explained that MDS is most often “watch & wait.” Does this mean that if he can make it through 3.5 years, his prognosis is favorable to live many years beyond? I hope you are feeling good and your numbers continue to be good.
Lyssa
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