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Fifth CML Anniversary.

Dear all,

I was diagnosed with CML on 15 September 2003, so it will be five years tomorrow! Quite a significant day for me, because as most will know Glivec became frontline therapy for CML in the same month I was diagnosed.

I was given the old prognosis, and told I could expect problems in a couple of years time,
and then I would die in 3 to 5 years. I made some big life changes because of this, some I lived to regret, but my love for my children kept me strong. I am happy to say that overall Glivec has worked very well for me. I have been in CCR since 2005, although it took a long time getting there, and my last and best PCR was 0.09. New drugs are now available, and in the last six months more than one potential donor match has been found, something I thought would never happen. Hopefully, I will never need to have a transplant but it was great to hear that it is now a possibility. My CML has been managed at the Hammersmith for the past year, and I feel very lucky to be there.

It has taken a long time, but life is finally getting back to normal! I am working full time, and try to help others as a care volunteer with Leukaemia Care. I have also met some amazing people, in particular a haematologist at my local hopsital, Dr. David Howes who is now retired. It has been a life changing experience knowing him, and being looked after by him. A great personal loss now that he has retired, but I am very happy for him.

Anyway, the moral of the story is to keep your faith and never lose hope. For me, I am going to enjoy the extra time!!

Best Wishes,

Phil.

Hi Phil, what a great story. May you have many more years of extra time!

Blessings,
Don

Congrats Phil - my story is very similar. In fact I don't know my exact anniversary date as I did not want to remember it at the time - I also received the pre-Glivec era 3-5 years life expectation and thought I did not want to count the years away so deliberately never noted the exact date of diagnosis. Was diagnosed at age 39 and did not celebrate at age 40 because again I felt at that stage birthdays were still a negative thing, counting off the years. Always thought if I reached 50 that would be major cause for celebration....family members better start saving now....

Have been on 400mg Glivec all the way with a slow response at the outset but PCR hovering around 0.05 now for three years or so, though it has its blips.

At diagnosis my kiddies were ages 1,4,7 and 8 - what an amazing difference those 5 years have meant. We have also lived our lives more fully than we might otherwise - we took everyone to a french school in Normandy for a term in Spring 2007 (just because we wanted a little adventure...) and had the time of our lives. In January 2008 we relocated ourselves from Edinburgh to St Andrews in search of a less urban existence - has been a great move for everyone and we have never looked back. Hoping to mark the 'I shouldn't be here' anniversary with a half marathon in November 2008 though a hamstring strain may mean this doesn't come off - proud to have a sporting injury at least! It has not all been plain sailing and, naturally, given the choice I'd rather not have CML, but I have nothing to regret over the last 5 years and am so grateful that I am still here!
Annie

Hi Phil,

Thanks for telling this story. As time goes on the story of CML since the Glivec era gets better and better, and I hope that in the near future those diagnosed with other cancers will also benefit from molecular targetted therapy.

Like Don, I wish you many more years of 'extra time'....;o)

Best wishes,
Sandy

Dear Annie,
Good to hear you are doing so well and will also be marking a 5 year anniversary. Lots of luck with the half marathon... and fast recovery from your hamstring injury!

Best,
Sandy

Hi there, This is a heartwarming story and I am so pleased for you Phil. Having inner strength really does help too.

Aaron (my Son - 15 yrs at diagnosis) was also diagnosed 5 years ago and we have already celebrated his 5 year post BMT earlier on in the year. Unfortunately Glivec didnt work for him (he was in blast crisis & resistant) but I know of many who tell stories similar to your own.

As Sandy has already said, the future for CML patients looks better and better with newer drugs becoming available and being trialed.

Love and best wishes.

Jayne xx