Cytogenics MDS – Prognosis v. Diagnostic?

[Malissa Kirszenbaum]

Hello. Hope this post finds all well. I have done a great amount of research prior to our appointment tomorrow morning to receive our bone marrow biopsy results and cytogenic report. I do have a question that maybe someone in the forum could help clarify. That is, the cytogenics report is really a tool for risk and prognosis? In other words, should we find this report “good, non remarkable,” it does not zero out the MDS diagnosis his doctor suspects? In my reading it suggests that having at least 1 cytopenia (low RBC, Hemi., Hematocrit) presenting as anemia with no clear reason why (everything else having been eliminated, I.e., autoimmune, etc.) – just curious if anyone can shed some light. I am preparing for tomorrow and want to ask all the right questions. Does anyone have a watch and wait for MDS?

Thx
Lyssa

[mdsfound]

Dear Malissa, You are correct, the IPSS is a tool to assess risk. The bone marrow biopsy will diagnose MDS and then we use the IPSS-R to assess risk.

[Donna]

Melissa, how did the bone marrow biopsy come out? Good news I hope.
Donna

[Malissa Kirszenbaum]

Hello Donna. My apologies, I have not visited the site for several weeks. Leon‘s oncologist put him on a watch and wait. The cytogenics was normal but his bone marrow was not. He is hyper cellular at 60% (should be at 39%), with increased iron stores. His blood still shows low RBCs (cells large); hemoglobin and a bit low on WBC count. He showed a blast count of 1% which the doctor said is good for now. Since receiving that report, the doctor appease my husband and agreed to look at some of his work in through sonogram. The sonogram for his liver showed that it was in largest with increased echotexture and fatty liver and fill Traciann. They called and we now have an appointment with a hepatologist. The oncologist has not tied anything together Right now and said that this liver abnormalities may not have anything to do with his anemia. MDS is something that he spoke about that he is going to watch and wait. He did mention another BMB in the future for Leon and will be taking blood every six weeks to monitor his counts. Our appointment with the hepatologist is in April. I have been trying to keep him occupied with small things but we just celebrated Passover/Easter and I noticed over the weekend how many naps he is taking, this is new for my husband who always had a fair amount of energy. I am not fretting because if this is the only thing we have to deal with, I will take it in a heartbeat. It is true that knowing is far easier than fear of the unknown. I hope this message finds you happy and well. Thank you so much for asking.

[Allan Romriell]

Lyssa,
Just a comment on your husband taking more naps. That is the one thing I notice from a year ago, I don’t have the energy or stamina I had then. I tire easier and have to take more breaks while working in the yard etc. I am sure it is anemia related as that is my main issue, low hemoglobin due to low RBC and the deformed RBC. AS you say though I can deal with that and just allow extra time for every thing. I hope he and I both can just keep it at that for a long while. Take care.
Allan

[Gopalan Vasudevan]

I have RARS which was diagnosed over 8 years ago and remained symptom free till recently. I am currently awaiting the results of the bone marrow biopsy. The question that I have about the IPSS-R risk score is whether the median survival is based upon the initial diagnosis of MDS or from onset of symptoms?

[Allan Romriell]

Gopalan,
That is a good question, my guess is from initial diagnosis. Median of course means average, which some of us are under that and some over to get the average. You are already at the median average on some scales so you are obviously going to exceed the mean average by quite a bit. I also have RARS so I hope I can stay if not symptom free, because I already have some minor symptoms but treatment free for 8 years, that would be great. I was diagnosed about a year ago at age 64, so even going the 3-5 years treatment free that my oncologist thinks I might make would be a blessing. I hope all goes well for you from here on, keep us posted and good luck.
Allan

[Malissa Kirszenbaum]

Hi all. I hope this post finds everyone feeling well and able to enjoy some much needed Spring air. So Leon’s Hepatologist explained that in order for his anemia to be secondary to liver disease, the liver would have to be in either a stage 3 or 4 stage (only 4 levels). They had a brand new Fiber Scan in their office and Leon was able to get a liver scan. Although this equipment has not been totally approved, it is the new latest and greatest scan that is not invasive (as a liver biopsy) and is very beneficial for cases such as Leon’s as it has been found to have excellent accuracy in identifying liver failure, scarring, etc. Although w3 have not found out results yet, the technician slipped and told Leon his liver looked great. The Hepatologist said either way, leon’s Low white blood cell count would not be linked to a liver condition. He thought Leon might in fact be monitored for pre-MDS. Assuming liver is okay, we have been tested for all other diseases and conditions that would have a connection to his anemia and now below normal WBC (3.5), neutrophils (1.4), RBC (11.2), MCV (102.7). His BMB show antigen precursor CD34+ but blast count only 1%, 60% hypercellular, increased iron stores. No abnormal cytogenics yet and his M/E ratio still normal. He is macrcytic w/o any B12, folate, or iron deficiencies. We have another round of blood work next week. Depending on the levels. We are probably going to make an appointment at the Kimmel Cancer Center at a Johns Hopkins Hospital for a second opinion.

Lyssa

[Allan Romriell]

Lyssa, Good luck with it all. My only liver issue is bilirubin at 1.6. My hemoglobin was 11.4 with white cells right on low normal and platelets 137. My marrow is 80% hypercellular blast count 1% with greater than 15% ringed sideroblasts, which gives me the RARS diagnosis. I am about the same as a year ago(except bilirubin higher and platelets higher as well) so oncologist pretty happy with the stability which of course makes me happy. I am even feeling a little more energy, I think its the spring weather and getting out in the yard more. I still tire more than a year ago but feeling a more lively than I did all winter. All the best to you both.
A.

[diana]

Please google copper deficiency related MDS If your husband is not tested for blood copper level.
Copper deficiency is very rare. It usually happens to stomach bypass patient, zinc supplement, diarrhea/dehydration.
I watched quite a bit MDS related videos, or read forums. It seems that about 1/3 MDs mention copper deficiency. They usually always mention B12 and folate deficiency.
This you may already knew that MDS-foundation.org under patient and caregiver forums has many great videos, audios, transcripts and presentations.

[diana]

The above post is for Lyssa.
Hope everyone feeling well.

[Author]

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