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6 years since diagnosis (long)

On the 9th it will be 6 years since those 3 horrid letters CML were confirmed as the source of my bad health. Life is a peach in comparison to the expectation I had when I was told I had CML. In those not so far off days, interferon was the only treatment on offer here in UK. Also at that time the prognosis I was given wasn't very clever. I felt as if my world had come to an end. Weeks and months of research started, consultations with specialists - Prof Goldmann was one - contacts with other CMLers. The support of many people, Sandy and Elizabeth, Anjana, Roy and many others, including many who are members of the European group, the Asian list and the American list, gave me hope, help and knowledge. Over those early months I fought for and got Gleevec. I have no doubt that the support I found with these wonderful people gave me the chance to get the treatment that has given me these 6 years.

Since then life has become a dream in many ways, I take it slowly and love every moment. 2 wonderful little grandsons, a beautiful loving and caring family, and a supportive ever giving husband make that possible.

In those early days I didn't think I would see my next birthday, see my son Paul graduate, see my daughter become a mother. All those milestones have been celebrations. All the more important because of the unexpected joys they bring.

Now Bill and I have moved back into London, the house is slowly becoming home, the contact with family is wonderful, the closeness to the hospital a bonus. Slowly we are finding our way again in this great city. Theatres and art galleries, museums and parks are all within easy distance now. So far we have been to the Globe theatre, the Royal Festival Hall, the Tate Modern, and many National trust houses and gardens. There is so much to do.

CML is a part of my life, but not the most important. I acknowledge its presence then dismiss its limitations! Life is for living and long may it continue.

Strange to say but in some ways its a bonus to be a part of this CML world, there are such fantastic people involved, thank you all.

Love and healing thoughts
Pennie.

You are a very positive lady. My dad was recently diagnosed with CML (I've started another thread about that) and as I knew nothing about it I was worried I was going to loose my dad very soon. After reading a lot of information I realise that it can be controlled and should not rule his or our lives. Life is for living and my dad is a fighter as you are.

Love Mistymoo

Pennie

As Mitsymoo says, what lovely words. Thank you for them and keep enjoying your life to the full.

David

Pennie, very well done, remember those days all too well, still gone into the past now. I am approaching my eleventh anniversary on 20th October, days of interferon, does not bear thinking about now does it. Perhaps it is all up to personal resolve or sheer bloody mindedness, not accepting what we were told in those early days especially when it related to life expectancy. I am still here, with my cml living alongside of me, interestingly though I have reached the dizzy heights of a pcr of 4.4, whatever that means, would seem to excite some especially after all of this time. Today I was fixing an anti-freeze seepage on our motorhome, lying underneath in the sunshine looking for water droplets, inspiring on a day like today. Not till I was cleaning up afterwards was I taken to task by my long suffering wife, Carole, when she spotted the bruising and bleeding under the skin on my hands did I remember that perhaps cml did not want to join in and help fix the van.
Enjoy your life and your family Pennie, it's what it is all about.
Lots of love
Keep smiling
Keith

It's encouraging to those who more recently became a part of this 'on line' commnuity to get postings from people like Pennie and Keith.
My wife has cml - dx September 2003, although I'm sure she had symptoms very early in 2003.
She too, then is 4 years down the line from dx.
Even though in 2003 Glivec was readily available in the uk, experience with the drug was still fairly limited, no one really knew if it would be well tolerated, or effective over the long term.
I well remember the consultant who gave Anne the dx mentioning very tentatively giving her a few years by starting her on Hydroxycarbamide!! - he wasn't sure at the time about using Glivec, didn't know if it could be prescribed at the hospital where she was being treated at the time, needless to say we didn't hang around there too long, and rapidly got a referral to our local teaching hospital.
I'm glad to say, four years on and Anne is doing well, having achieved a 3 log reduction in pcr since dx.
She has been able to take early retirement (sends me off to work though!!) and ike you Keith - she does not restrict her activities because of her cml - but gets on with what needs to be done.
Best Wishes to all

Paul

Sorry for the late post, but I just wanted to say I love to read inspiring words like yours Pennie. It was my 4th. anniversary yesterday, the 15th. I wish you a continued very happy healthy life. Also reading Paul's words struck a chord. I was also dx in Sept 2003, when Glivec was approved as front line therapy. I had initial problems tolerating the drug, and was also being told I probably only had up to five years left. Anyway, thats old news now, & here's wishing us all a great future.

Very best wishes,
Phil.