Advice - Dad has MDS diagnosis
Hi All,
I wonder if I could ask for a little advice. I will relay all the information I currently have - I know it's not complete - but hope it's enough to paint a picture.
My Dad has been anaemic for about 18 months maybe now. After having many tests looking for a bleed somewhere (internally) pretty much the last test was a bone marrow biopsy. From that he was diagnosed with MDS.
Generally his health has been good apart from the anaemia. He's 70 years old.
The results I know so far are that he has had a blood count (I assume red blood cell count) of about 9.5 for a year or more now. Obviously it should be in the 14's. I also know he has between 10-12% blast cells in his bone marrow.
He has been put on Vidaza... 7 days on, 21 days off. He just finished his first cycle. Felt fine until about day 6, then had some quite serious (but bearable) side effects for 4 or 5 days after. Chills, little fever, loss of appetite, lethargy and pretty serious fatigue. After the first round his blood count fell to about 8.8.
As far as I know he's being treated by a haematologist.
I was wondering, what should we expect going forward? I'm a little confused because on the information page about MDS on this site it says 10-20% of MDS patients go on to develop AML. However, on Wikipedia it says 'most' MDS patients will develop AML. Generally the stats I have seen on prognosis', even with Vidaza, don't make for happy reading.
Also, I am wondering if it's worth seeking a second opinion? MDS seems quite a complicated condition. I am wondering if it's worth finding a haematologist or oncologist who is an MDS specialist?
Any advice or thoughts would be appreciated.
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