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NICE review of imatinib

I have just heard that an expected review of imatinib by NICE has been deferred until early 2009.

I may be worrying unecessarily but could they decide to withdraw funding for the drug to patients already receiving it? My husband David, has shown a good (although not brilliant response) to it but if funding was withdrawn there would be no way we could afford to pay for it ourselves.

I don't know anything about the process used by NICE but on top of everything else just can't stand the worry that this treatment might be withdrawn.

Does anyone know anything that could be of reassurance.

Good to know you are all there - love to you all.

I absolutely can't see how NICE would ever withdraw funding for imatinib given the staggeringly good results which are now published. By 2009 there will be 10 years of Glivec data so I am sure it will be a mere formality for NICE to give themselves a pat on the back for having granted NHS funding in the first place [being dragged there kicking and screaming]
I really would not worry.
Elizabeth

Thanks for that Elizabeth. I know what you say makes perfect sense, its just that I'm so low at the moment that any hint that we could lose the treatment is totally unbearable.

Thanks for replying so promptly - what you said has really helped.

if NICE assesses a drug or therapy and recommends its use as the first line therapy for a named disease (as in glivec and CML) then PCT's (primary care trusts) are legally required to fund that drug.

the review in 2009 will be to update the trial data (IRIS and others) and assess the overall impact of the drug in terms of efficacy and therefore value for money to the NHS.
that is a rather over simplified explanation but do be reassured that this review is not going to mean a withdrawel of glivec.
the figures from the IRIS trial are astonishing with over 90% (and this figure keeps increasing) of newly diagnosed patients achieving CCR with rates of relapse/resistance falling year on year.
please do not worry,
best wishes,
sandy C ;o)

Hi could someone please explain to me where a pcr of 3.7 % is in terms of CCR/MMR.
This was Robs 18 month result. he went yesterday for bloods taken for his 21 month test. he was told if the result is the same or has gone up he will go to see graham Smith in Leeds with a view to being included in the Nilotonib trial. If the result decreases even slightly he will remain on 600 because there is still a downward trend. However at nearly 2 years I don't feel it is downward enough.
have been trying unsuccessfully to get referalto Dr Smith for last 12 months.
Spoke to 1 of the drs at the conference who said There was evidence of failure to respond and he should definitely be refered on from our local hospital. We are always fobbed off. It's hard enough to deal with the cml without having to fight for referral.
Any advice welcome
sal

Thanks Sandy. That is extremely reassuring.

Sue x

Hi Sal,

I'm not as clued up as alot of people on the correct terms but thought I'd give you info based on my experience...

I achieved a PCR of only 2.8% at 12 mths (600mg Gleevec). The only way to find out cytogenetics (I think) is from a bone marrow biospy. Mine returned a 0% reading, meaning that I'd reached CCR (Complete Cytogenetic Response) as well as a Negative FISH test.

I was referred by my doc after initial consultations about my PCR remaining at around 2.5%, to be moved onto Nilotinib. However, I've just found out that I don't qualify because I attained CCR but not a 'good' enough PCR result. I think Novartis and the trials don't clarify 'failure to respond' well enough...

Have you thought of 800mg? I've just started 800 from 600mg.

Any other thoughts on this would be good?!

MJS

"I was referred by my doc after initial consultations about my PCR remaining at around 2.5%, to be moved onto Nilotinib. However, I've just found out that I don't qualify because I attained CCR but not a 'good' enough PCR result. I think Novartis and the trials don't clarify 'failure to respond' well enough..."

hi matt.......... mmmm, i am suprised that you do not qualify for the trial given that you obviously do not have CCR if your pcr is at 2.5% bcr/abl. it may vary but i have been led to believe that ph negativity which is required for a CCR is under 1.5-2% bcr/abl.

however i do hope that you get a better response with the increased dose.
have you had a look at the ASH summary highlights video discussion between goldman, stone and talpaz? click on the link under essential reading for a listen/look at some expert current thinking.
best wishes,
sandy C ;o)