my dad's cmml

[sdrake]

I am new to this forum. I have been reading messages for several months and decided to write. In January of this year, my 66 year old father went to our GP because of a full feeling on his left side which turned out to be a very enlarged spleen. After seeing an oncologist and having a BMT done he was diagnosed with CMML-1. We went to the Mayo Clinic in Rochester in February where the diagnosis was confirmed. Dad started Vidaza in February with immediate results. His white count was under control, red count and hemoglobin up, and platelts in the 125 range. He tolerated the treatments well. We were all encouraged by this until about the end of May when his white count got down to below 2.0 and his red count and hemoglobin began falling. He started his 5th round in June when his ANC dropped to below 1500 and treatments were delayed. From June to the middle of July we waited for his counts to come back up. His white count got to 1.1 at its lowest. Red counts were down to 2.5 with his hemoglobin bottoming out at 7.9. The last week in July he started rebounding and Vidaza was started at 67% dosage. The red counts came back up to 3.0 and his hemoglobin up to 10 – 10.5. He had another round at the lower dosage and just finished a full-dose round. His numbers are: WBC- 2.4 RBC- 3.44 HGB- 11.7 HCT- 36.4 MCV- 105.8 MCH- 34.0 MCHC- 32.1 PLT- 125 SEG NEUTROPHILS- 77 BAND- 1 LYMPHOCYTES- 20 MONOCYTES- 1 EOSINOPHILS- 1 ANC-1872
I think he is doing well, but I would sure like someone elses opinion. What can we expect?

[sarah]

Welcome to forum. Was curious what Dr did about your dads enlarged spleen. My husband just had his spleen removed last week. Dr said it was 4 lbs, larger than a football. Your dads counts look pretty good, how is he feeling?

[Caroline]

sdrake

My Dad was diagnosed with CMML last week after a BMB. He had MDS for 2-3 years before that. He is 79 years old. In the summer, he had an ultrasound of his spleen taken and it was normal.

I only know his hemoglobin results so far. They are at 99 right now and that is after a blood transfusion 2 months ago. Actually, the hemoglobin is the only number that the Oncologist ever tells him. I noticed that you said that your Dad’s hemoglogin was at 7.9. I wonder if where I live, the doctor would refer to that as 79. We live in Ontario. Our Dr. never uses a decimal number. He said that he starts to worry when the hemoglobin drops below 100.

Dad starts Eprex tomorrow or Friday.

I haven’t been going to his appointments so far as my Mom was going along with Dad but over the past while, both have become very ill and I have included myself in their healthcare plan.

At our next appointment, I will ask for more of Dad’s test results and I will try to share them with you. You know alot more about your Dad’s counts than I know about mine.

Caroline

[sdrake]

My Dad’s spleen started to shrink with the Vidaza treatments. His oncologist says that he cannot feel it any longer – I assume this is good. When it was so large we asked about removing it. The doctors told us that it was too dangerous. It makes me curious as to why some are removed and others are not.

I assume that 7.9 and 79 would be the same thing but am not sure. Here they use 8.0 as the transfusion number. When Dad’s got to 7.9 they said we would wait another week and see what happened. Thankfully they started coming back up and the Vidaza really brought them up again.

As to knowing more about Dad’s numbers, I ask LOTS of questions. Probably make a nusance of myself, but I just remind my Dad that it is because I love him. It seems one way I feel like I am helping is by trying to find out everything I can about this nasty stuff.

I am also curious about Revlimid. I read that it is working for 5q MDS. What exactly is 5q and does Revlimid work for CMML? It sounds so promising. I just keep praying that it is something that will help Dad.

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