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Dasatinib

This is my first time on the forum and I would like some advice on how to progress in supporting my father to get Dasatinib.

He was diagnosed in 2005 and has been on Glivec for some time, we were informed in July that this was no longer controlling his condition and that he should be on Dasatinib (based on advice from Hammersmith) I wrote to both the PCT CExex and local MP but to no avail.

His consultant is being advised against putting in a formal request to the PCT on the basis that PCTs will only accept requests if the patient is intolerant to imatinib- which he is not.

Should I push his consultant to submit a formal request, or should I be concentrating my efforts on getting him onto a trial?.

Any advice would be greatly appreciated
Nazeya Hussain

Hi Nazeya
I am so sorry that you are still fighting this. There is a procedure to be followed for Consultants to apply to the PCT for Dasatinib and Sandy has posted this information I suggest you email her at Sandr1ne@aol.com. There is a contact at Bristol Myers Squibb who will advise how to proceed.
In the meantime the consultant does need to submit a formal request to the PCT. Your father is resistant to Imatinib and therefore qualifies for Dasatinib. Your father could possibly qualify for ENACT trial and Hammersmith will be the best place to advise.
Best wishes
Elizabeth

hello Nazeya,

yes i advise you to insist that your dad's consultant goes ahead with contacting the pct. if your dad is resistant to Glivec then this is a serious situation and he should be able to have access to an alternative therapy such as Sprycel (Dasatinib) or Tasigna (Nilotinib which is still in trial-- see the current list of ENACT trial centres by clicking on the link under Newswire to the left of this page)

i also suggest that you write again to your MP... and go and see them at their weekly surgery to press the point home.
you should also contact your local newpaper/radio with your story. this has had a 'magical' effect in some cases. but first you have to get the PCT to make their position known. it is no use for a consultant to make an initial enquiry and then give up!
i have emailed you privately with more information should your PCT refuse, in writing, to fund Sprycel. this would help the consultant tackle the PCT should they refuse.
the other way is to use the patient tribunal system, but again you need to know if the PCT will actually refuse before using this or any other strategy.
if your dad would prefer to access Tasigna by taking part in a clinical trial through ENACT then i suggest you contact a centre near you. where is you dad treated?

clincial trials are preferable as you can be sure you are getting the right sort of disease management and monitoring.
let me know if you need any further advice.

sandy C ;o)