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Peter Miles on 9 June 2011

Category: Uncategorised

Replies: 10

Last updated: 10 June 2011

Granada Reports and BBC North West Tonight Regarding todays's NICE meeting
by RachaelB (Jun 10)

Hi everyone.

Brilliant press coverage - congratulations to all involved. I would also like to say thanks to everyone who turned up on Thursday to demonstrate - you made quite an impression and

by sandy craine (Jun 10)

Dear Patricia... thank you so much for joining us both at Manchester and now here on the forum- I hope you will continue to post here. It was wonderful to meet you.

Thanks so much for your

by sandy craine (Jun 10)

It is not clear when they will publish- but I understand it could be anything between 10 days and 8 weeks! I think it really does depend on how much pressure the government choose to put on NICE- or

by Rev Patricia (Jun 10)

Thanks to everyone there in Manchester,and those who were there in spirit. It was encouraging to see the onenesss of support in this battle for the drugs we all so deserve. The fight will not end
Category: Uncategorised

Replies: 10

Last updated: 10 June 2011
EmChops on 9 June 2011

Category: Uncategorised

Replies: 11

Last updated: 28 June 2011

Platelets have dropped - questions
by keith Pratt (Jun 28)

Hello Emma

Your Doctor is right, diet will nit affect your platelets, well didn't for me. Nothing really to get to worried about. In my case they have been down to 2 at one time, and last

by jolanda (Jun 28)

Hello Emma and others,
I feel the same,I just heard my platelets dropped again from 21 to 17 on 50 mg Sprycel, so now they are going to do a PCR test to see if the Sprycel did enough to continue

by sandy craine (Jun 27)

Hi Emma,
Of course we all try to be 'cheery' and 'brave' because that is what is expected we do. The public at large do not want to hear about cancer- let alone a Leukaemia- that's kids isn't it

by EmChops (Jun 27)

Hi everyone

Thanks for all your comments, had a rough couple of weeks, platelets kept dropping, white blood cells and neutrophils too so not been on Nilotanib for 3 weeks now. Just escaped a
Category: Uncategorised

Replies: 11

Last updated: 28 June 2011
michelle on 9 June 2011

Category: Uncategorised

Replies: 5

Last updated: 10 June 2011

Dasatanib please advice with side effects.. switched from Imatanib yesterday.
by karen (Jun 10)

I think like most people i had the bad heads but they have continued and my migraines are pretty bad now and i get mouth ulcers but that was all really. I may well be coming off Dasatinib now though

by michelle (Jun 10)

Many thanks for your comments..I did sleep last night but had to take a sleeping pill in the end. I don't know if its a mixture of anxiety over making the switch or the actual drug making me unable

by cmlblogger (Jun 10)

Hi Michelle - I switched to dasatanib after 4 years on imatinib early this year.
my first night was exactly the same as you, but the next night/day I was totally fine. Since then things have only

by marsy (Jun 9)

Hi

I have been on Dasatanib since last August and after a couple of month of minor rashes am now generally OK.

I was worried about the side effects and checked with the Consultant if I
Category: Uncategorised

Replies: 5

Last updated: 10 June 2011
sandy craine on 4 June 2011

Category: Uncategorised

Replies: 15

Last updated: 9 June 2011

9th June - Manchester
by Steven Davies (Jun 9)

http://www.bbc.co.uk/news/uk-england-manchester-13716986

by Richard42 (Jun 9)

You've made the BBC news website too
http://www.bbc.co.uk/news/uk-england-manchester-13716986
Richard

by Star (Jun 9)

http://menmedia.co.uk/manchestereveningnews/news/health/s/1423176_cancer...

by Star (Jun 9)

Just come home from the protest outside the NICE meeting and about to go on hols. Thought I would update you all first. We did interviews with BBC North West, Granada TV, Heather Stott Radio Show (
Category: Uncategorised

Replies: 15

Last updated: 9 June 2011
sandy craine on 3 June 2011

Category: Uncategorised

Replies: 1

Last updated: 6 June 2011

NICE
by shelleycharing (Jun 6)

You are amazing - thank you on behalf of my partner Alan Quarterman

by sandy craine (Jun 3)

I posted the petition- NICE?I don't think so!- to both Andrew Lansley and Earl Howe yesterday- guaranteed delivery for today.

I had both of them professionally printed and bound and it was
Category: Uncategorised

Replies: 1

Last updated: 6 June 2011
welshlass on 2 June 2011

Category: Uncategorised

Replies: 19

Last updated: 18 October 2011

Can CML be totally cured?
by Richard42 (Oct 18)

Hi Nigel
I got nausea the first day, and a fair bit just after taking the pill for a few weeks. It passed in about 30 mins, and after a few weeks gradually it was less of a problem (only get

by Anonymous (Oct 18)

Hi Sandy, yes thanks that would be good to meet up.
A question please, any reaction to Glivec, for most does this happen right away for after a few days / weeks ?
Just a note ( and this is

by sandy craine (Oct 18)

Dear Nigel,
I would like to endorse everything that Richard has said... and yes, please do lets take time to meet up at the patient seminar.
Do try to read as much as you can over the

by Anonymous (Oct 17)

Richard thanks hope to meet Sandy and David at the patients day and have a chat, would be good to raise some funds for both, and sure we can Nigel
Category: Uncategorised

Replies: 19

Last updated: 18 October 2011
sandy craine on 2 June 2011

Category: Uncategorised

Replies: 3

Last updated: 4 June 2011

Petitions
by Kate (Jun 4)

Thank you Sandy for all your hard work and determination. We are lucky to have such an excellent champion for this important cause.

Kate

by marsy (Jun 2)

Thanks , on behalf of everyone for all the good work you are doing on this. It must be taking an enormous amount of your time, but believe me we all appreciate it!
Hopefully your efforts will pay

by spence11 (Jun 2)

Thank you so much Sandy.x

by sandy craine (Jun 2)

Roger (our technical guy) has kindly put the 2 petitions on the left hand menu so you can now easily access both of them. There is also a 'map' of the signatures so you can see in more detail where
Category: Uncategorised

Replies: 3

Last updated: 4 June 2011
John M on 31 May 2011

Category: Uncategorised

Replies: 1

Last updated: 1 June 2011

Message from Minister - Charles Hendry
by sandy craine (Jun 1)

'As a result of these changes, NICE will not be able to issue formal

restrictions on the use of treatments on the NHS. Instead, these

decisions will be taken locally.'
This means that

by John M (May 31)

Hope this may be helpful. Response received by a friend who wrote to his MP - forwarded to me.
Dear Richard
Thank you for your email and kind wishes.
There is indeed an EDM 1831 but as a Minister, I
Category: Uncategorised

Replies: 1

Last updated: 1 June 2011
sandy craine on 30 May 2011

Category: Uncategorised

Replies: 8

Last updated: 31 May 2011

5929
by Andy Parkin (May 31)

Thanks to Sandy for organising this. A fantastic effort. Fingers crossed re positive outcome !!

andy

by ni2i (May 30)

This is fab. Lets hope it makes a difference to the not so NICE people x

by John M (May 30)

Huge effort and great result.

by spence11 (May 30)

Woohoo!!! How brilliant.x
Category: Uncategorised

Replies: 8

Last updated: 31 May 2011
sandy craine on 29 May 2011

Category: Uncategorised

Replies: 9

Last updated: 14 June 2011

Zavie
by Basil from RSA (Jun 14)

I am sure all who have somehow crossed paths with this remarkable man are praying for his speedy recovery. I sorely miss our regular Skype chats and his warm manner. Come on Zavie get well soon so

by lynnsch (Jun 10)

So happy to hear you are on the mend Zavie. You are an inspiration to us all and thank you for celabrating with us by making us part of the zero club. My message from you welcoming me to the club

by David (Jun 6)

What good news!
Zavie, when you get to read this, I want you to know how incredibly special and uplifting it was when you posted a few years back to give my wife a number in the Zero Club. She could

by sandy craine (Jun 3)

Just to let you know that Zavie is responding to treatment and is improving every day. This is good news ;o)

Sandy
Category: Uncategorised

Replies: 9

Last updated: 14 June 2011
louisepim on 26 May 2011

Category: Uncategorised

Replies: 9

Last updated: 6 November 2012

Glivec 400mg - is it going to get cheaper and more readily available?
by Basil from RSA (Nov 6)

As I said before - let's wait and see what happens in South Africa in 2013.

by jamshaid shoukat (Oct 30)

Hi my name is jamshaid shoukat i just see that the price of the subject medicine is very cheap in india i just want to know is the price of this tablet is Rs. 300 in India and if i want to buy what

by Refaye (Apr 15)

Hi All,
The price of generic imatinib 400mg in india is around Rs300 (i.e comes around $6 US Dollars). The actual gleevec comes around $60 here. Since the patent doesn't apply in India many

by louisepim (May 28)

Thanks for your reply Richard.
Louise
Category: Uncategorised

Replies: 9

Last updated: 6 November 2012
spence11 on 27 May 2011

Category: Uncategorised

Replies: 6

Last updated: 29 May 2011

Hospital feedback re NICE
by spence11 (May 29)

Thank you for your kind words and for everything you do on our behalf. I really admire your passion and commitment and will continue to do everything I can to help.

My very best wishes to you

by sandy craine (May 29)

Please don't think my words were directed at you.... I understand entirely why you would be upset by your doctor's attitude and it was his words that prompted my post.... Please in turn I hope you

by spence11 (May 28)

I'm devastated that you thought I was dismissing the work of the members of this group as unimportant. Nothing could be further from the truth. My message was one of surprise that the specialist

by sandy craine (May 28)

If this ACD is confirmed by the NICE appraisal committee on June 9th and it goes to a FAD (final appraisal determination) well yes, in theory it can go to appeal, BUT this is a far more difficult
Category: Uncategorised

Replies: 6

Last updated: 29 May 2011
arrowsc on 26 May 2011

Category: Uncategorised

Replies: 1

Last updated: 26 May 2011

Another MP sign up
by sandy craine (May 26)

thanks.. this is a supportive letter- and all the more welcome compared to the other responses I have seen from some MP's.

So far there have been 2 PQ's asked see below.

even though

by arrowsc (May 26)

Hi all,

I have just had a letter back from my MP, Grahame Morris, MP for Easington, in the North East, and here is the 'meat' of the response.
I share your concerns and I have signed the Early
Category: Uncategorised

Replies: 1

Last updated: 26 May 2011
ian hinley on 25 May 2011

Category: Uncategorised

Replies: 4

Last updated: 3 June 2011

Reply from MP
by Star (Jun 3)

Quick update - MP Barbara Keeley replied to my uncle's letter and she has written to Andrew Lansley.
Fingers crossed for Thursday.

by sandy craine (May 28)

NICE REVIEW OF CANCER DRUGS FOR THE TREATMENT OF CHRONIC MYELOID LEUKAEMIA
Session: 2010-11

Date tabled: 18.05.2011

Primary sponsor: Meale, Alan
Sponsors: Campbell, Ronnie Crausby, David

by fehr (May 27)

Thank you for your letter of 8 May.
I have noted your concerns about the NICE appraisal committee's preliminary decision not to receommend Dasatinib, nilotinib or high dose imatinib for NHS

by Star (May 27)

Today I was very excited to receive a House of Commons envelope in the post!
My MP, Paul Goggins, Labour, has replied to my letter concerning the NICE decision and says he has written to Andrew
Category: Uncategorised

Replies: 4

Last updated: 3 June 2011
jackieb38 on 24 May 2011

Category: Uncategorised

Replies: 2

Last updated: 25 May 2011

Dasatinib
by cmlblogger (May 25)

I have now been on Dasatanib for 4 months after 4 years on Imatinib, and like you I hadn't realised how bad I felt on it until I moved off of it. Always it was something that i had to

by chrissie (May 25)

Very pleased to hear that you feel better on Das. At least NICE have said those already on it can stay on it. Long may the improvement last !

Your story touched me as your resistance/

by jackieb38 (May 24)

Well, I've been on Dasatinib 12 days now and so far so good!

The awful joint pain and cramps I had on Glivec have more or less completely gone as has the 'brain fog' I feel allot
Category: Uncategorised

Replies: 2

Last updated: 25 May 2011
EmChops on 24 May 2011

Category: Uncategorised

Replies: 4

Last updated: 26 May 2011

Interview in the local paper
by sandy craine (May 26)

thanks Em.. enjoy your holiday

by EmChops (May 26)

parents of children i have taught, kids i have taught and old friends have been in touch and all want to help, really lovely to have that sort of support. Hopefully they will all sign the petition

by EmChops (May 25)

very interesting, i have received a copy of his letter today and it is brief and not very enthusiastic.

making me quite cross!

Thanks Sandy

em x

by sandy craine (May 25)

Well done. possible adverse publicity pressure always works in getting MP's interested. re: his signing the EDM- at least 6 members of this government have signed it- 2 conservatives and 4
Category: Uncategorised

Replies: 4

Last updated: 26 May 2011
bobosbo on 24 May 2011

Category: Uncategorised

Replies: 1

Last updated: 24 May 2011

Reply from Department for Health
by David (May 24)

Bob

I agree this is waffle. Could I suggest you do not accept it and send a reply saying it is waffle and asking for a reply to the serious questions that arise. Make a nuisance of yourself! I

by bobosbo (May 24)

I have just recieved the following email response from the Department for Health:

Thank you for your correspondence of 9 May to Andrew Lansley about the National Institute for Health and
Category: Uncategorised

Replies: 1

Last updated: 24 May 2011
sandy craine on 24 May 2011

Category: Uncategorised

Replies: 3

Last updated: 24 May 2011

BBC 'Look North' Interview
by ruddoug09 (May 24)

Thanks, I must say a massive thanks to Sharon Barbour at Look North Tyne Tees, she put together a very good article with a clear message coming through on what is a complex subject. Lets

by sandy craine (May 24)

Dear David, I share your frustration at Andrew Dillon's rather misleading press statement.

This decision is "perverse" and "inconsistent", plus the NICE appraisal

by David (May 24)

Great report. Thank you for doing it. As Sandy says, it is very powerful. I am getting very tired of Sir Andrew Dillon and NICE saying the evidence for the effectiveness of Dasatinib and Nilotinib

by sandy craine (May 24)

What a brilliant piece of reporting- well done- This is such a powerful piece.

Two important messages leap out from this interview:
"Big Society": he is a regular blood donor and it
Category: Uncategorised

Replies: 3

Last updated: 24 May 2011
David on 24 May 2011

Category: Uncategorised

Replies: 1

Last updated: 24 May 2011

Daily Telegraph - 23 May - Dasatinib, Nilotinib and high dose Imatinib
by sandy craine (May 24)

Hi David.. yes I agree that the letter from 4 leading professors of haematology must lend some power and gravitas to the arguments against the NICE preliminary decision.

Thanks also for adding

by David (May 24)

A heartfelt thank you to Professors Goldman, Apperley (my wife's consultant), Craddock and Clark for writing such a compelling letter to the Editor of the Telegraph. For these skilled and
Category: Uncategorised

Replies: 1

Last updated: 24 May 2011
John M on 23 May 2011

Category: Uncategorised

Replies: 1

Last updated: 23 May 2011

NICE - here's a sample email and letter
by sandy craine (May 23)

thanks John this is very helpful.

You might also include this link: http://www.writetothem.com/

Sandy

by John M (May 23)

Well done to everyone who has generated the interest in the NICE decision so far.

In case this would help anyone else I have done a draft email and letter below with lots of links (to the
Category: Uncategorised

Replies: 1

Last updated: 23 May 2011