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Funding agreed

Wow That was a short but intense battle.

I just got the news that my PCT has reconsidered its decision not to fund Nilotinb - and has agreed to pay as from now.

Am I over the moon - you bet I am.

excited, relieved and going to have a large glass of wine.
Pennie

That is great news,please keep us informed,interesting that if you have Diabetes, Nilotinib may cause hyperglycaemia.

Dear Pennie

That is such good news, you must be so very relieved. Enjoy your glass of wine!

Hugs, Janet

Hi Pennie

So delighted to read that the funding is in place. Celebrate, but isn't it ridiculous that you have to! It should have been automatic.

Nice to see you last weekend

keep well

Susan

Dear Pennie,
Fantastic news... well done.

Sandy

Wonderful news! So pleased for you.
kestrel

Hi Pennie, so pleased that the funding has been agreed, what a relief.
How are your nodules, have you seen anyone yet? Let us know.
Well done,
Ali.

Hi Ali

Had a biopsy this week, now I have to wait until May 13th to see thyroid specialist

Hope you are well.
Perhaps we could manage that coffee soon?

ATB
Pennie.pennie

Pennie
hope it will be ok, let us know your results.

Coffe sounds great but a bit of a way to travel..I'm in Devon, perhaps you thought I was someone else!!

What side effects have you experianced from Nilotinib? I now have very sore bloodshot eyes, they think due to the drugs.
All the best
Ali

Sorry Ali - there is an Ali up here in London near me I have been trying to get in contact with !!! Where abouts in Devon are you based? My family lived in Paignton, and I know that area really well.

No horrid side effects from Nilotinib except the blood balance stuff - high cholestrol and problems with glucose tolerance. These are being controlled with Statins and diet.

I feel OK at the moment - so much better than on Glivec. Do get some terrible days of fatigue, but those are fewer than on Glivec. Some problems with insommnia, and dry eyes. Also problem with very dry itchy skin, using loads of mosturiser every day.

ATB
Pennie

Hi Pennie, what a small world, I live about 1/2 away from paignton. I have a house there which is let out, its on the cliff (where the steam train runs) overlooking Broadsands beach! It would be great to meet up with you if you venture this way.I live at Drewsteignton, where castle Drogo is, do you know it?

I feel much better on Nilotonib, but as you, still with some side effects, see my post on the eyes! The fatigue has crept up on me & has been for the last 2 months. I have been on Nilotinib for 6 months now, having spent the first 2 months on & off it due to sore mouth/palpitations/ manic rash. Steroids control it mostly.

Hope your biopsy results are ok.
BFN
Ali.