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Hi I am Sara, my Husband Mike was diagnosed with CML at the end of August 2006. We suspected it may be Leukemia as he was getting terrible black bruises all over his body, after seeing the doctor in the morning and having a blood test he called us in the afternoon to tell us to go straight to hospital.

As haematology was too busy we were directed to the emergency admissions Department and left in a waiting room for over two hours with no one doing any thing. Finally a Dr from Haematology came to see us and we were told he had CML, in the waiting room with people banging on the door to get in. An awful experience. I am pleased to say that ever since then every one at Nottingham City Hospital has been fantastic.

Mike had 3 months off work until Christmas and is now back working. It seems so strange when such a bombshell happens to you 3 months later your life is back to a strange kind of normality. He looks normal and people are always asking if he is cured!

He is on the spirit study taking daily glivec and once a week injection of interferon. A mistake was made initially and instead of building up the interferon doses he took the full dose straight away which may be why everything seems to be working so well. His last test after Christmas showed he had gone into cytogenetic remission.

He was always one of these people that was never ill he had to register with a doctor the day he had the tests as he hadn't been to the Dr for ten years.

We are all still trying to come to terms with it we have good days and bad days but think about it every day, he gets tired but hasn't let it stop him doing anything. He goes to the gym nearly every day and is starting back playing five a side foot ball.

Sorry I have gone on a bit but it is so nice to come across people who are having the same experiences as us and to be able to there is someone to talk to and pick their brains.

I remember my husbands diagnosis like it was yesterday! He was diagnosed in August 2004. He went to the DR. about a large lump in his abdomen and had a blood test a week later. The same day as the blood test we were told that his White Count was excessively high and told to go the hospital a few days later. The lump turned out to be his spleen which was enlarged due to the amount of white cells in it. We were'nt given any warning before the haemotologist broke the news and we felt that life was over, it was awful. But over 2 years on, Gary is doing well and still works hard as a double glazier. Gary also hit cytogenic remission quite quickly but recently has gone above the level the Dr's are happy with, so his dose has been increased to 600mg since October 2006. In fact, we're due back this week for an update and checkup. Any time you have a question or worry, just log on her and ask away. I've found it more helpful as our haemotologist's manner was not very reassuring. RACHEL

Hi Sara
Glad you found us. Mike seems to be doing just great and after a bad start, which many of us have had - insensitive doctors and so on, he seems to have his life back on track and taking the correct medication. He got into cytogenetic remission real quick and this is really very encouraging. As Rachel said you can lead a normal life with Glivec, the tiredness is to be expected with both Glivec and IFN but Mike appears to be in good physical condition and I am sure this will help. I find when I get tired the gym actually energises me.
Rachel, good luck with Gary's results this week. Hope the PCR is back where it was.
with very best wishes
Elizabeth

It is good to know how people are getting on who are further on in treatment as we are still very new to all this. Hope your check up goes well. We are back towards the end of April for some more blood test results so keeping our fingers crossed even though our consultant said the results would probably slow down a bit.

Sara

Y A H O O O !!! Y I P P E E E !!!

Number 1050 in the Zero Club

Zavie

Please write me at zmiller@sympatico.ca

Zavie Miller (age 68)
Ottawa, Canada, dxd AUG/99
INF OCT/99 to FEB/00, CHF
Gleevec since MAR/27/01 (400 mg)
CCR SEP/01. #102 in Zero Club
2.8 log reduction Sep/05
3.0 log reduction Jan/06
> 4 log reduction Nov/06