You are here

geting to know....

I would like to be able to speak to others via e mail or on line here about CML, their experiences etc to compair to mine. I don't know of any support group in our area or of any others that could understand having CML other than us of course. I am female 40ys and was diagnosed Jan 20/06. Had BMT right away put on Glivec and nothing since. Except for regular blood tests to monitor white count, which is within normal ranges. I have seen my specialist today and I will be having my first PCR test on Jan 03/07, excited about that. I read this site at least 2-3 times a week and I am glad i am able to grab info from others posting experiences. I hope to hear from you...thanks for listening,
suzanne North East uk.

Hi Suzanne
Am I correct in assuming that you had a mini transplant ? I am thinking this as you say you were put on Glivec after - which is the mini protocol. I had a mini transplant in May last year and you can read my story in the Diaries listed on the Home Page, just scroll down, mine was a bit more complicated than just CML but all to say that the transplant was very successful and I am now 18 months post transplant with a PCR of 0.00000 - Sandy also had a mini transplant, bit more straight forward for CML and is also now doing very well. Her diary also on Home Page. If there are any questions you want to ask etc... please feel free to post and if you don't want to post pubicly you can email on erees@hotmail.com
Wishing you a very happy Christmas and a great PCR result in January.
Elizabeth

Hi!

I've had CML for just over two and a half years, I'm in the North East (Durham).

For my appointments I go to Durham and the RVI.

I've been on Glivec since diagnosis (after a few weeks on Hydroxyurea etc.)

I met a lot of people at Leukaemia Care meetings held at the RVI which was really nice.

I'll try to get the details for you.

Steven.

Hi Suzie,

I am also in the north east ( east durham ) diagnosed june 05 at 37 years old. Have been on Glivec for around 15 months and am doing pretty good with a PCR of 0.05 at the last test, my e-mail addy is arrowsc@msn.com if you have anything you would like to ask

Craig A

http://www.leukaemiacare.org.uk/volunteersNetworkInfo.asp?RegionID=3

PS Hi Craig! :-)

How yer doing mate, hope your recent results are looking good

Craig A

Hi Elizabeth,
I didnt have a bone marrow transplant, just a test. I mustve used the wrong abbrieviation, sorry about that however im thrilled to hear your pcr results. I will be sure to read your diary, thanks for taking the time to respond...suzanne x