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NICE ACD - Imatinib Intolerance

para 2.5
Other treatment options include interferon alfa, busulfan and hydroxycarbamide.

Sandy I thought Inf etc had been taken out of the running. Is this saying they are back in there as alternatives to Glivec in cases of intolerance?

Do these people have ANY IDEA about Quality of life issues?

Also there are many of us who went onto Glivec post Inf due to intolerance (in my case very severe reaction)

What is the suggestion for intolerance? Go into a corner and die !!

Yes I am so angry about all this.
Pennie

Hi Pennie,

yes- transplant/hydrea/interferon/chemotherapy (busulfan) or nothing---- this will be the choice for those who cannot tolerate imatinib. Of course- we should all be angry.

Sandy

Dear Pennie, Yes I too am very angry - I can bardly believe this situation. I spent two and a half years injecting myself daily with interferon in the early days before Imatinib and it was all pointless because inteferon did not do a thing for my counts. Furthermore I spent two and a half years sleeping most of the days and nights away as a direct result of the side effects. Even worse was to follow - after two years of interferon my thyroid gland gave up completely and my Specialist was very upset for me and said it was as a result of the prolonged interferon treatment. I have taken thyroxine ever since then as my thyroid is caput simply because of interferon. Don't the NICE gang realise what it can do?

I was also on Hydrea for three months and it did nothing for me except side effects.

It is about time Andrew Dillon and his gang all got myeloid leukaemia in blast form isn't it? Yes I am livid. Whatever was his knighthood for? Pennie should we chain ourselves to the railings at Downing Street and start to be more like Emily and Sylvia Pankhurst? Sorry about this outburst Sandy. Whatever can we do?

With love, Pat P.

Oh Pat do you remember those early days when we were planning a 'CML refugee from NICE' coach to Scotland - seems we are almost there again.

Chaining ourselves to the railings in Downing street - You bring the Thermos of very hot very very strong coffee and I will bring the blankets - its snowing in London!!!!

Seriously maybe we should think in terms of a mass protest - well it would be a small mass as there are not very many of us - but maybe we would be able to make that very point? What do you think everyone?

Pennie

I have a decent bike chain that we could use and I was in the Brownie's so I htink I can remember a few knots if someone brings the string!!!
Kx

This whole issue does anger me as it does everyone. Sandy knows best the battle with NICE over imatinib but my impression seems to be "here we go again". They simply won't accept the notion that these drugs show incredible promise to provide very significant life extension or even better, including for intolerant patients. If they accepted that premise, the debate would not be happening. What especially angers me is the fact that we in England suffer this and other parts of the UK don't. That's not acceptable and in an election year I will tell every party hack that knocks on my door my view on this. The reason we suffer I suspect is because NICE has an agenda to negotiate price reductions and this is influencing the process - an agenda the other bodies do not have. Otherwise, I cannot understand the inconsistency. Rant over.

I am preparing a statement over the next few days.... I have also decided to see how many of us can be present at the FAD meeting on March 9th in Manchester. I will let you know how this pans out. If only one or two can get into the meeting then maybe a poster demo outside? That should attract media interest?

Sandy