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Hammersmith Referral.

Hello everyone,

I have not been on for a while, but still view the site quite regularly. I moved back to Mid Beds in February this year for family reasons. My wife & one of my sons Chris (12 yrs) have never really come to terms with my CML, and family life has been very tough. Anyway, we are going to get some help now.

I thought I would share that my results have always been pretty good, but probably not good enough. I was very pleased to be referred to the Hammersmith, and had my first appointment with Prof Jane Apperley this Wednesday 18.7.07. It was great to be seen by one of the CML experts. We discussed whether I should go for the mini SCT, or try to get my PCT at Bedford to fund Dasatanib or Nilotinib. The Prof tells me that she is known as very much in favour of SCT, but in my circumstances advises other drug therapy at this time in my life, especially if my next PCR is in the same region of the last one.

I had quite a big increase in January 07, but down again in March so no obvious trend. Last year I had Trisomy 8 in the one PH Positive cell, but that has not been found since. I have been on 600 mg Imatinib since October 2005, and am only approaching a 2 log reduction. Having said all that, otherwise pretty fit and well & returning back to my full time career.

I go back to the Hammersmith at 11.30 on Wed 22.8.07, and it would be nice to chat with any of you that may be there.

Best Wishes,

Phil.

Dx 15.9.2003
Last PCR BCR-ABL 0.175

Hi Phil
First of all I want to wish you and the family all the very best in trying to come to terms with the bombshell in your lives. I really hope that you can all work it out. It is not easy and everyone is different etc... so full marks for having a go at sorting it out.
Your PCR is pretty good. If you were to change Nilotinib seems to have fewer sides effects than Sprycel and is a pretty powerful inhibitor. However either of those inhibitors will do the job and you are in the best place to get the best advice. Sorry to have missed you at HH, I was there yesterday and not back till 20th September.
With very best wishes
Elizabeth

Thanks for your kind words Elizabeth, look forward to meeting you & others at the HH one day.

Phil.

Hi
You are certainly at the right place my friend, I've ben a member since 1996, coffee is good as are the 'breakfasts' on clinic mornings. Look forward to meeting you there sometime, I'm the happy person there !!!!! I will be there on 8th August next.
Have fun and kep smiling
Keith

Look forward to meeting you there one day. Next there 22.8.07.
Phil.

Hi Dad,

it's Chris, and I know this post has been here for a few years or so, but I just wanted to post this reply to say how very proud I am of you, and no matter what happens to you, I'll always be here to help. I am hoping that you are happy and well, and that everything is going smoothly for you. You have been the best Dad, and I couldn't ask for more, and I will do everything I can to be the best that I can be.

You are a brilliant man and I am very grateful for everything you have done for me and the family.

Lot's and lot's of love from Chris x

P.S. Stay Strong Dad

Hello all,
I just want to thank you all for the support you have given my dad when he was going through an incredibly tough time!
I'm now 19 years old and still as proud of my Dad as I've always been, if not more!
He's doing well, and has a lovely place overlooking the sea.
Hammersmith Hospital is a very friendly and welcoming environment and even as an outsider, so to speak, it feels incredibly kind in general.
I know it's not really my place to comment on my dad's life, but rest assured, the man is still his hyper self and I love him to pieces!
I've been playing guitar for a long while, since before dad put up that first post back in 2007, and as a Blues player and a massive Eric Clapton fan, it was incredible to hear "My Father's Eyes", when sat next to my true hero! We are going again next year, and I cannot wait!
This is all proof that the treatment and support for CML, is incredible!
Thank you for everything and God bless you all!
Thanks, Chris.