Just heard from my local paper they are going to print our story next week and want to chat to me on the phone. As I am new to CML, only diagnosed two months ago I am worried I might get something wrong! What do you think it is important I mention?
Thanks for your help!
Em x
Hi Em,
just be yourself tell your own story. It might be good to mention this website as good for information - but also mention the current 2 petitions and if you give this website address say that the petitions can be accessed here.
The fact that you are newly diagnosed and on first line standard therapy with Glivec means that should you not respond well enough (and I am not saying you will not but it is a risk for a small number of patients) and NICE go ahead and refuse patients who do not respond or are resistant to 400mg Glivec, access to either, higher doses of imatinib (Glivec), or nilotinib (Tasigna) or dasatinib (Sprycel) - then will be not much choice for you to access effective treatment - other than interferon -which has very bad side effects- or stem cell transplantation for which you will need a matched donor- which is not an option for the majority.
This means that for you, there is not only the shock of diagnosis to cope with but also the worry that you might not get access to the other drugs that could be equaly life-staving.
I hope this outline has not worried you even more- but it is the issue we are campaigning on.
Best wishes,
Sandy
Thank you sandy that is helpful. I am in a slightly better situation as I am already on Nilotinib as part of a clinical trial and so far, 5 weeks in, doing ok. However i know that i will more than likely need alternative drugs in the future. And I am very worried about the future, very worried, as we all are.
I will mention the web site and petitions, how long will the petitions be on line for?
Thanks again
emma x
Dear Em,
do not worry unduly for the future.. if you are doing well on nilotinib then it is very likely that you will continue to do well. nilotinib is a very good drug and an improvement on imatinib in that in first line use its targets the abnormal gene (bcr/abl) and fits into the signalling 'pocket' of the abnormal cell much deeper than imatinib does. Hence it works much faster and goes much deeper.
this means- for newly diagnosed chronic phase CML - you are likely to see a molecular response quite quickly- and your CML will be kept at low levels over the long term- if you can get this kind of response (MR) and you get to see anyting up a 4 log reduction in the levels of bcr/abl- then you are unlikely to relapse in the future.
best wishes,
Sandy
