My weeks break started last Friday, and is almost over ! And it has been bliss - I feel fabulous !
I had a little blip at the beginning of the week when a cold I had developed into a chest infection. Because I was so short of breath Dr P suggested I come to his clinic on Tuesday for a check up. A chest xray was completely clear - and I do mean completely. The medistinal line was thin and uninterrupted - and this was where tumours showed on the lymph nodes on my last CT scan. So he prescribed me some anti biotics and pronounced me fit and well - which I am now they have started working. So Im just waiting for the all important CT scan which I should have any day now.
Next Wednesday 5 of us from the protest group will be attending NICE's board meeting in Plymouth. There is a question and answer session prior to the meeting and we have been invited to submit some questions. Originally I think this was intended to be a quiet affair but after yesterdays headlines about NICE spending more on 'communications' than actually evaluating drugs I think press interest will be intense. Which is great - we must keep the pressure on.
The clinic I attend produced results from a reseach project it has been doing into the effectiveness of Sutent and Nexavar. They really are astounding. Patients given these drugs lived on average for 22 months (!!) Those denied them lived on average 7 months. So it is finally clear that these drugs extend life not for a few weeks, or even months, as NICE reported - but can extend it for almost 2 years !
With proven statistics like this how can NICE continue to deny the effectiveness of these drugs?
And with the true cost of Sutent factored at 28K a year - well under NICEs limit of 30K - the preliminary decision, at least for Sutent, must be over turned. Mustn't it?
I think the board meeting next week will prove very interesting - thats if I dont get lost on the way - its an awful long drive !!
9 comments:
Good Luck next week. You will be in my prayers... as you always are...but special ones will be winging there way...Hope you don't get lost on your way !!! I did last week when I went to Kingston on Thames got ino the one way system !! twice round the town !! in torrential rain is not to be recommended !! Love for now Sybil xxx
Keeping you in my prayers on the smoke for the board meeting! Wish results like that how can they deny the results...
(Hugs)Indigo
Take your x-rays and let them try and tell you Sutent doesn't work well enough to fund it.
You look amazingly well in your photographs, I think they alone speak for Sutent. Good luck and let them have it! x
Take your x-rays and let them try and tell you Sutent doesn't work well enough to fund it.
You look amazingly well in your photographs, I think they alone speak for Sutent. Good luck and let them have it! x
Excellent news, Jane. You make the point for funding Sutent very well. Good luck with your campaign!
Hello Jane, so glad to hear you had a good week 'off' even if it did start with a blip - hope you are now over that chest infection. It seems to me that NICE will yet have to do a U turn, the evidence is being massed against them. Good Luck, and take care.
Luv Jaynee X
I am going to keep you in my prayers honey and wish you well on your journey I know you can do it .
hugs
Sherry
Thats great news for you and well done with the campaign. . no one should have to fight for some medication,Im still disgusted with NICE.Wishing you so much and much more than that.
Hope it goes well. I think I just seen you on my local news!!
Red Top??? :o)
I will wait to read about it on here!
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