Dad diagnosed yesterday - confused

Please post here your experiences of MDS as a patient, carer, family or friend

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Re: Dad diagnosed yesterday - confused

Post by caroline74 » 11 Apr 2013 13:11

My dad finally got his Consultant's letter with his official diagnosis today. Results of bone marrow examination;

'Mildly hypercellular bone marrow with trilineage dysplasia...a moderate increase in blasts on morphology and a CD34+ cells was about 10-15% whereas CD117 staining was roughly 10%.... consistent with RAEBII.... cytogenetics were also abnormal, which showed monosomy 7. The rest of the test were within normal findings and DAT test was negative.'

I've googled everything so think I understand what this means!!

He has now completed his first cycle of Azacitidine and is having another blood transfusion today. The change in blood levels from pre and post Azacitidine treatment are;

-Haemoglobin down from 92 to 89
-WBC down from 3.6 to 2.5
-Platelet up from 64 to 70
-RBC down from 2.78 to 2.76
-Neutrophils up from 1.17 to 1.66
-Lymphocytes down from 1.16 to 0.84
-Monocytes down from 1.25 to 0.93
-Eosinophils up from 0.04 to 0.1
-Basophils static at 0.01

As it is early days with the treatment I was not expecting any significant changes, but would welcome any comments if anyone spots anything worriesome.
I haven't quoted all the elements as I am not sure of the relevance of other blood components.
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Joined: 01 Dec 2009 21:52
Location: Essex

Re: Dad diagnosed yesterday - confused

Post by chris » 12 Apr 2013 14:39

Hi Caroline

Good to hear you have all the information you need and have managed to decipher it all! Don't forget to ask Sophie if there is anything you cannot find on your own.

Please search this discussion forum for experiences of Azacitidine. There are posts particularly by David and also under the heading of MDS in the family where there is a link to a blog where a father and daughter both had MDS and the father is a long-term Azacitidine user. The important thing to remember is that it usually takes several cycles before it starts to work and that some cell counts will go down before they go up again.

I hope the Macmillan link was helpful? Some patients have found evening primrose oil helps alleviate the injection site soreness that some patients experience.

Best wishes

Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
Posts: 10
Joined: 28 Mar 2013 16:43

Re: Dad diagnosed yesterday - confused

Post by caroline74 » 23 Apr 2013 14:34


Thank you, yes I printed out a couple of the entries from the father and daughter blog for my dad. He has also been using the evening primrose oil for the injection sites, which has been a great help for the skin irritation.

Dad had his second meeting with the Haemotologist yesterday (I attended) and we all came away from this feeling much clearer on the ongoing treatment & process. Dad's WBCs have dropped following the chemo so he is having G-CSF injections in advance of next chemo.
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