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My name is Ian Hinley, I have just turned 40 and am a self employed computer programmer. Married with 2 children 6 and 4, boy and girl. I am based in Haywards Heath, West Sussex.

I was diagnosed just over a month ago with CML after having an enlarged spleen. Had WBC of 355(000). After weeks of chemo count came down to 32 so have just started Glivec week and half ago. Getting achy bones but apart from that no other side effects. See specialist next Tues for 1st post Glivec appointment...

I regularly check on the site and have passed on the url to the petition to as many people as I could. I personally feel like the semi-safety rug is being pulled away from me if I am resistant or intolerable to Glivec, feels like a human rights issue...

I have just found this following link which may help in the fight against Nice... Seems like Novartis are really going to push this drug next year after these exciting results.

Tasigna news

Look forward to posting updates as and when I get them and continuing the fight for the 2nd line drugs as well as the fight against the disease!

Ian

Hello Ian...... welcome to this forum. Thanks for sharing your story and providing the link to the press release about Tasigna.

I have posted the first part of an overview of the ASH 2009 conference, written by my friend and fellow advocate Jan Geissler who is a CML patient. He runs the German online group leukemie-online.de and attended this years ASH meeting.
I have posted the first of Jan's updates under Newswire and will add more updates over the next week or so.

ASH contained some very good news for CML patients this year and I hope that amongst all the bad news for UK patients we can find a more positive message from the ongoing research and drug development.

All the positive news of more effective therapies such as nilotinib and dasatinib plus other TKI's coming out of this years ASH can only help all of us in our determination to get NICE to change their negative recommendation to a positive one. We must not lose hope that we, as CML patients and citizens, can change things for the better.

Once again, welcome here and please ask if you need advice on any aspect of living with CML and therapy with imatinib (Glivec).
Best wishes,

Sandy

Hello All,
I agree with Sandy, it will be nice to hear some good news just before Christmas from what happened in New Orleans. Everybody has had there backs up with that decision by NICE. But that article is 100% positive, i have also used the link from Ian.
At our next support group meeting Dr G.Smith is giving a talk on his findings from the ASH meeting, and also a local MP is willing to come along and listen to the facts from him, and bring it up in the house of commons. Lets hope it is not too late as we are looking at the first Monday in Feb.
Chris.

Hi Chris,

Do you think you could contact Dr. Smith and ask him to write to Prof.Mike Richards (see my post on this on string higher up the page) with an outline of why it is important that the NICE recommendation not to fund dasatinib and nilotinib should not be supported?

best.......Sandy

Sandy,
I am pretty sure at our last meeting our SLN said Dr Smith and his team were already putting there case together to tackle NICE. But i have read your post about Prof.Mike Richards and will pass the message on for him to contact him. Thanks Chris.