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Results

Hello everyone
I feel a bit guilty for asking this but should I question more my blood results? When I come on this site I see lots of people who talk about their blood counts in a really informed manner but when I go in for my appointments I always work to the assumption that if everything is within 'normal' range then all is well and I just say thank you very much and wait for the next appointment - does anyone else do the same?
Karen

Hi Karen
When I started on Glivec at Kings they gave me a treatment book in which all the results are logged. I like to know my blood counts etc, as it gives me a sense of achievement and also shows any trends. But you are possibly right and I need to get out more.
Best Wishes Tony

i think it comes down to personal choice some people like to know and track the minutia of details, and others are happy to be just told everything is going well or not.

If you fall into the later and are confortable with that then I would keep to that and not force yourself into knowing all the minor details.

I just remember the PCR number all the other CBC stuff I don't write down, minaly as they have always been OK. If I get told int he future there is a problem i might take more notice

rob

rob - http://cmlblog.spaces.live.com

Hi Karen, we are the same when we go to the hospital, as long as the results are ok I do not make any note of them. Becky who is 16 does not feel the need to know her blood counts, as long as we hear the word normal thats good enough for us. Its down to personal choice, obviously should these blood results become a problem then I will start to write them down to show any differences from appointment to appointment. Dawn xxx

Hi Dawn
Sorry to hear about Becky - thats a really young age - are you coping OK and are they planning on a transplant for her? I just mostly want to forget it which is probably why I just check its OK and then run away! I think if I had been given a book (like Tony) then I may have done more. Are you going to Hammersmith next weekend?
Karen x

I always get the results of all blood work. I also insist on receiving copies of the reports. I'm becoming very adept at following my son's trends & I've even learned that my son's blood actually goes through "cycles" - where numbers are up one month & down the next. I think it's good to know & to have handy in the event you need or desire a second opinion or you're switching hospitals or consultants (which we've done 3x so far.)

By following even the CBC counts, I was able to get additional testing of the thyroid, B12 levels & ferritin levels.

I like having as much information as possible.

Best wishes to you.

Regards,
Tracey

Hi Karen, sorry not been on for a while to reply to you. Becky is on Glivec 500mg a day, we may try Datasanib if her bloods do not come down to zero but we are not sure yet whats happening. A BMT is the last resort really, Becky keeps changing her mind saying she wants one then she doesn`t, typical teenager!!! We didn`t attend Hammersmith, we hope to attend some meetings in the future hopefully.. Love Dawn xxx