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600mg

Hi all,hope everyones having a good christmas.I had an app on wednesday last week and the doc has increased my glivec to 600mg,im starting to worry.she said even though the last three results have shown an increase im still in cyto remission,i really dont know what to think.take care,love kathy

Hi Kathy,
You know I'm no expert in these matters, but would anyone else think that maybe now is the time to do mutation testing?

Also, am I right in thinking that you have a matched donor if necessary?

Kathy - we had a good Christmas and I hope you have a great New Year!

Do you know what your last three results were? Sometimes small differences can just be because once you are in cytogenetic remission, the changes are the result of testing variations, rather than changes in you. Your doctor must have a reason to put the Glivec up to 600mg. What did she say to you about the increased dose? Where are you being treated? I am sure if you can give a bit more information, some people visiting this site, who have more knowledge about 600mg than I do, will be able to give you some information.

Good luck.

David

Thanks david,he never gave me any results he showed me them on a graph,he said he would like me to be further down the graph than what i am.Im treated at manchester.take care ,kathy

Kathy - could I suggest that next time you go to the hospital you talk all this through with your Doctor and ask for a copy of the test results. Then, if you need anything else after talking to your doctor, you can think about putting your results in a post here for people to have some input.

Regards

David

Kathy, I do wonder where you are being treated? I was diagnosed in 1999 in Nottingham and put on 400 mg Glivec in 2001. In November 2005 although my PCR's were really low - sometimes 0.000 - there was a sudden increase but still not too much. I was put on 600 mg. and since then my PCR's are back again at 0.000. At first the extra dose gave me more side effects but now after a year they have disappeared and I sometimes nearly forget I have CML. I had a mutations test alongside the increased dose - the test was negative. Have you had a mutations test and what is your current PCR compared with what it was? Try not to worry because Glivec can work wonders. Happy New Year. Pat P.S. It is interesting that currently there is talk of putting me back on 400 mg by one Consultant and leaving me on 600 mg by another. I favour the continuation of the 600 mg dose if I am allowed any say - which I think I will be.

Thanks pat,thats whats happening my results are still low but he said he would like me to be alittle lower,im treated at manchester ,im going to ask for the mutation test next time i go,thanks pat i feel better for your comment,love kathy

hi dennis,
your post was posted as annonymous rather than as your registered user name....... if you do this it will be put automatically into the queue for approval (due to problems with spam) which means it will be delayed in appearing on this page. please make sure you log in with your user name before posting then there will be no problems.
best wishes,
sandy