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Hemoglobin counts!!!!

Hi all

Just a wee update. I've been on 800mgs Glivec now for 6 weeks. My hemoglobin count is starting to drop. I found out today . I had a blood test done 10 days ago and was asked to get them done now weekly. I'm a bit worried about this. What happens if it keeps dropping??? What do i do next? The hospital says its the increase that has caused this to happen but are watching it carefully. Had more bloods taken today get results before the end of the week.Fingers crossed its ok.

Any advice would be great.

Elaine

Michelle

Hi Elaine,

I also had this problem when I was put on 600mg of glivec, I am back to 400mg at the moment. I had to have a blood tranfusion every ohter week whislt on the higher dose although my hg count was always very low about 7.00 before a transfusion and then about 8.6 after one. I always felt really rough when it was about 7.00 with headaches, feeling breathless and aches in legs, but you know in the end I got used to it being low and it just became a routine to have these blood tranfusions! They did regulate back to normal after I had a thermal ablation (to stop heavy periods) and I tollertate 400mg much better than 600mg of glivec, having said that I might soon have to up my doseage deppending on latest pcr abl test and an impending bone marrow test next week, so may be back in the same place you are now! I really feel for you, but I have noticed that sometimes my hg count not great and because I am no longer having weekly blood tests, I have noticed that the count can recover on its own sometimes. My consultant leaves it up to me to come to the day unit if I am feeling rough and I really know when my hg is low, if I start getting a drumming in my ears when I lay down and a really bad headache I know its time to check out hg coung and I am usually spot on! I have posted before to ask others if they have this problem, so it would be interesting to hear from others as well, wish you well, let me know how you get on.

Hiya Michelle

Thanks for your reply. The symptoms you mention are similar to mine. I will let you know how i get on with latest blood tests. Should know by the end of the week.

Thanks again. Take care

Elaine

Hi Elaine
I had low haemaglobin levels for a while when I was on 400mg of Glivec. I had a virus and was a bit run down at the time and it took a couple of months to recover - but it did on its own and I am sure they will have plans to deal with your anaemia.
This summer I was very anaemic between April and September post BMT (record low of 5.8 and hovering around 7). They gave me blood transfusions which helped a lot, and EPO injections (which I am not sure did).
I recognise the symtoms you both describe: feeling light headed and the drumming in the ears. I don't think there is a lot you can do except go for the blood tests and try to take it easy if you can.
Good luck
David

my mom has had cml now for almost 3 years and her hemagbion has been dropping alot in like the last 5 months. Can someone please tell me if this is something serious or is the some what normal for CML patients.