It all started in 2004 may when my friend said i should go and get my sore on my stomach checked out ,so when i did the doctor did a routine bloodtest
The next day i had a phone call to come back to see him which i did, not expecting what he was going to tell me.
He said you have a form of chronic myleiod leukeamia and to go and see dr watson in the maelor for a bone marrow test which detected my count was 79
i went into complete shock trying to get on with everyday life!!
this all happened 3 weeks before i was due to be married which all i did at the time was think about the wedding
when all the wedding and honeymoon was over it was back to reality!!
The next thing was to go to christies and have a bloodharvest done,then once that was completed i was put on a drug to bring my count down then onto the gliveec 400mg it was tough for the first 12months but now im leading a normal life my count has been normal for a few years now. I do have a brother which they were testing him a few years ago which went out the window cause he had his own problems !!!i do suffer fluid retention in my face alot and get lots of cramps especially at night time i go for checks to the hosp every 8weeks and my count stays the same.the worrying part is when does this all change.
I do worry about the future and having children .Is there anybody else who feels like this?I do get down alot lately but try to be strong
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my story
Hi Clare, I read your post and saw Christie's which made me think you are based in the North West, is that right? We (myself and Gary) are in Bolton and Gary was dx in July 2004. All his treatment has been at Bolton except right at the start when he had a meeting with Guy Lucas in Manchester, along with Leukopheresis and a Bone Marrow Test. He is not in CCR yet as his PCR is higher than the haemotologists would like but it is slowly dropping now that he is on 600mg per day. Gary has a half brother and to my knowledge, no Bone Marrow matches have been investigated, in fact I'll ask next time we go but we never discuss that side of things! The Glivec seems to be good enough for him for now and he may even try alternative treatments if the PCR remains at its current stubborn level. We have one son who is almost 5 but would love another little 'un. It just doesn't seem to be happening for us at the moment! Don't know if Glivec has anything to do with it but we have sperm banked at Manchester just in case. The only problem there is that as we already have a child, we would have to fund any treatment ourselves in order to help me get pregnant. I'm 36 in June and Gary is 42 so we don't really have an awful lot of time but I am grateful that we are blessed with our son. I don't know what the future holds but it seems to be a lot more promising as new treatments and drugs are discovered and trialled. This site is great for meeting people in the same boat as you and you can always get a response from someone. Take care RACHEL
Thanks for getting back to me rachel
I live in the wrexham area went to manchester christies that was 2 years ago now i go every 8 weeks for blood tests to the shooting star unit in wrexham maelor and they send clever tests( which they call them) to liverpool every 3 months and they all come back negative .Ive just been reading a post about another girl on the topics and she is 6 weeks pregnant and they have allowed her to come off gliveec how cool is that maybe there is hope for me and your partner x
did you attend the manchester seminar last year?
Hi Clare,
We were unable to get to the seminar last year which is a shame as it was so close to us. We are currently undertaking a large renovation on our house and have been living with my parents for almost one year. We are nearly ready to move back in but its just been too hectic to do anything else other than work on the house. I may suggest a trip to Edinburgh though for this years meeting and tie it in with a little Xmas shopping! Edinburgh is fab. We went in Nov 2005 and had a great time and I've always wanted to go back. Did you go to Manchester? I know that Garys results are usually sent there for PCR's and the like. Are you planning to have kids soon? I'd speak to your Dr. who's taking care of your treatment but if you can come off Glivec and conceive, that would be great for you. Your counts sound like they're in the right place so I'd seriously discuss it. Take care. Rachel
Yeah went to the manchester one felt like alot of men were there more dont know wether it was just me,felt like the youngest aswell ,some of the information was good alot was in science with proffesors talking alot they talked alot about the new drugs which are available now ,and really wanted to hear about if i could become pregnant but didnt get chance to find out .
I do want kids but if i have to wait then i will dont want to become ill and then have to look after a child that would be hard and not very fair on my husband
speak soon its good talking to somebody rather than myself
clare x
Hi Clare,
If you ever want a chit chat, I have an email of rachelhalsall@yahoo.co.uk or stick a post on the CML site. It's a great site, I log on much more frequently now, just to keep updated on stuff. Hope your counts continue to stay stable and at zero and let us know how you go on on the baby front. RACHEL x