5q deletion

[Chirley]

Hi,

It looks as if I finally might have a diagnosis. The hematologist told me today that everything points to 5q deletion.

My problem has been that I also have telangectasia (sp) in the small bowel, so the blood results were also effected by the iron deficiency anaemia caused by that.

It's actually a good thing because I don't have any iron overload problems. I am probably getting another BMB in 4 weeks time and we are going to see what to do after that.

If I have to have MDS, it looks like I picked one of the best forms to get. I asked my doctor what my blasts were and they are good at 3%. My only concern is that I was told that because my white cells are effected that the MDS may not respond to treatment as well.

I have had anaemia for over 5 and a half years now and I've been transfusion dependent for most of that time. I think I'm doing okay.


Chirley

[Birgitta-A]

Hi Chirley,
Very good that they at last discovered the bleeding telangectasia in the small bowel! As far as I understand many patients that take Revlimid for MDS with 5q deletion have good effect of Neupogen or similar drugs for low white blood cells.
Kind regards
Birgitta-A

[tytd]

This is just an FYI for those 5q- patients or caretakers that have enough medical knowledge to find a New England Journal of Medicine article useful. There are 2 articles on 5q- MDS in the Sept 8 issue of this journal. I have only read the abstracts as I don't have computer access to full article and don't know how to do the links thing. One talks about how some bad stem cells develop resistance to Revlimid and the other article is a case study of an elderly lady with anemia and MDS.