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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
michael on 21 May 2011

Category: Uncategorised

Replies: 1

Last updated: 23 May 2011

Early day motion 1832
by sandy craine (May 23)

Dear Michael,

you're absolutely right... it is very worrying.

PROPOSALS FOR THE FUTURE OF NHS BLOOD AND TRANSPLANT SERVICE

That this House is opposed to the Government's proposals

by michael (May 21)

Early day motion 1832 is just as scary as the cml related Early day motion 1831 as reported on the forum.prehaps we should promote both, your view please.

michael
Category: Uncategorised

Replies: 1

Last updated: 23 May 2011
sandy craine on 21 May 2011

Category: Uncategorised

Replies: 9

Last updated: 26 May 2011

update
by ian hinley (May 26)

.

by Dennis (May 25)

5132 now.

by Steven Davies (May 24)

What a fantastic response. Well dnoe everyone and a very special thank you to Sandy. Hopefully will get a few more before tomorrow.

Steven

by Dennis (May 24)

and to everyone who has contributed to this cause. I'm so angry about NICE's stance on this matter. NICE needs to be disbanded and quickly, because quite simply they are out of touch.
Category: Uncategorised

Replies: 9

Last updated: 26 May 2011
chrissie on 20 May 2011

Category: Uncategorised

Replies: 2

Last updated: 24 May 2011

MPs' Parliamentary questions
by chrissie (May 24)

Thanks, Sandy. That is what I did + what about patient choice?. I also emailed my MP yesterday pointing him to Pages 10 and 19 of yesterday's Telegraph and had a reply that his office is

by sandy craine (May 23)

Hi Chrissie,

sorry I missed your post. I would suggest you just re-email you MP with the actual question as suggested in the letter. - that way it is very clear and he will not have

by chrissie (May 20)

Just had a meeting with my MP (Mel Stride, Central Devon) and he was very supportive and has agreed to raise a written PQ on our behalf. He now wants me to email him with what I want him to say (
Category: Uncategorised

Replies: 2

Last updated: 24 May 2011
sandy craine on 20 May 2011

Category: Uncategorised

Replies: 1

Last updated: 20 May 2011

Petition
by chrissie (May 20)

On your test result and so many thanks for all you are doing for us,

Best wishes

Chrissie

by sandy craine (May 20)

I have just come back from my clinic appointment -still pcr negative- phew! in the battle with NICE I sometimes forget I have CML! but then remember that even transplant patients can relapse
Category: Uncategorised

Replies: 1

Last updated: 20 May 2011
hcy0da on 20 May 2011

Category: Uncategorised

Replies: 1

Last updated: 20 May 2011

Response from Dept of Health
by Steven Davies (May 20)

I have just received an email on behalf of Lord Howe which is identical to the letter above. Shame the DoE cant be a little bit more helpful

by hcy0da (May 20)

I’ve had a response from the dept of health, in it they say …

I would firstly like to stress that NICE has not yet issued its final guidance on the use of these drugs to the
Category: Uncategorised

Replies: 1

Last updated: 20 May 2011
sandy craine on 19 May 2011

Category: Uncategorised

Replies: 9

Last updated: 25 May 2011

Early Day Motion- Alan Meale MP
by sandy craine (May 25)

There are 30 MP's signed up now... 2 conservatives, 4 LibDems, 2 Paid Cymru, 1 Dem.Unionist Party, 1 Alliance Party (Belfast), 1 Social democrats/labour Party.

http://www.parliament.uk/edm/

by ian hinley (May 25)

.

by Steven Davies (May 20)

Strange that there all Labour signatories. I wonder if Labour where in power whether it would be all Conservatives who would have signed it.

by Dennis (May 20)

Good stuff. The word needs spreading further.
Category: Uncategorised

Replies: 9

Last updated: 25 May 2011
clair merritt on 27 July 2011

Category: Uncategorised

Replies: 4

Last updated: 29 July 2011

newly diagnosed child
by clair merritt (Jul 29)

Hi everyone thanks for replying to me, Jess my daughter got out of hospital this morning! Jess turned 14 last week and attends the oncology department at Birmingham Childrens Hospital UK. At the

by Richard42 (Jul 28)

Alastair is absolutely right that CML usually leads to high or very high white blood cell counts. Occasionally though it can present with high platelets. Mine were raised to nearly 1500 but my white

by Alastair C (Jul 28)

Clair, my heart goes out to you - you have a terrible load to bear at the moment, but I'm sure the folks on this site can help.
I think the FAQ section on this site will answer a lot of your

by Richard42 (Jul 28)

Hi Clair
There is some good information on CML in the FAQ section of this site, explaining tests, blood counts etc, which is worth looking at as it may help explain what cml is and what normally to
Category: Uncategorised

Replies: 4

Last updated: 29 July 2011