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Mike Ashley on 11 December 2009

Category: Uncategorised

Replies: 3

Last updated: 12 December 2009

Supply of Glivec
by vickiep (Dec 12)

Nooo!!!No worries, thought it might be helpful..

Vickie

by Mike Ashley (Dec 11)

Sorry

by vickiep (Dec 11)

http://www.cmlsupport.org.uk/?q=node/1232
This has been being discussed in an entry entitled "Glivec for only one month at a time?" and hopefully the link I've given you will take you straight there

by Mike Ashley (Dec 11)

Hi There
Have not posted for some time and see nothing changes with NICE etc.
Has anyone else recently expereienced issues with local chemists supplying Glivec.

I only get a prescription every
Category: Uncategorised

Replies: 3

Last updated: 12 December 2009
ian hinley on 11 December 2009

Category: Uncategorised

Replies: 4

Last updated: 14 December 2009

New member
by chrissbb (Dec 14)

Sandy,

I am pretty sure at our last meeting our SLN said Dr Smith and his team were already putting there case together to tackle NICE. But i have read your post about Prof.Mike Richards and

by sandy craine (Dec 13)

Hi Chris,
Do you think you could contact Dr. Smith and ask him to write to Prof.Mike Richards (see my post on this on string higher up the page) with an outline of why it is important that the NICE

by chrissbb (Dec 11)

Hello All,

I agree with Sandy, it will be nice to hear some good news just before Christmas from what happened in New Orleans. Everybody has had there backs up with that decision by NICE. But

by sandy craine (Dec 11)

Hello Ian...... welcome to this forum. Thanks for sharing your story and providing the link to the press release about Tasigna.
I have posted the first part of an overview of the ASH 2009 conference
Category: Uncategorised

Replies: 4

Last updated: 14 December 2009
Johannah on 7 December 2009

Category: Uncategorised

Replies: 2

Last updated: 11 December 2009

Lymph nodes
by louisealdridge (Dec 11)

Hi Johannah,

In june Malc, had a ct scan due to raised nodes in his neck and under his left arm- the result of scan did not show any more raised nodes in his torso area, so they took away one

by vickiep (Dec 8)

Oh poor you...I can't help you I'm afraid ecept to say NEVER be afraid to ask your Doctor about things that worry you. This is bound to be a worry for you and I do hope you can push for a quick

by Johannah (Dec 7)

Hi, all

I have now been on Glivec for 16 weeks and my bloods are all fine. I have for the last few days had some enlarged, painful lymph nodes in my neck. I have been to the hospital today
Category: Uncategorised

Replies: 2

Last updated: 11 December 2009
Pennie on 7 December 2009

Category: Uncategorised

Replies: 1

Last updated: 7 December 2009

Reply from 10 Downing Street.
by Sarah R (Dec 7)

Dear Pennie
Well done on getting this response. Your letter must have been well constructed to get such an answer. Keep up the good work! I find channeling my anger at Bill having this cancer in the

by Pennie (Dec 7)

Hi Everyone Response to my letter to PM arrived this morning
'The Prime Minister has asked me to thank you for your recent letter about drug recommendations for the National Health Service and he
Category: Uncategorised

Replies: 1

Last updated: 7 December 2009
SwanValleySue on 7 December 2009

Category: Uncategorised

Replies: 3

Last updated: 12 January 2010

On-Line Petiton (free)
by Pesty (Jan 12)

Hi Sue,
Did you receive my email?
Thanks and Happy New Year
Michelle

by SwanValleySue (Dec 20)

Michelle
Certainly contact me
Sandy will assist in my email address
Cheers

Sue (West Australia)

by Pesty (Dec 7)

Hi Sue, Would it be possible to make contact outside the forum? I have a couple of questions with regards to WA, Australia.
Thanks
Michelle

by SwanValleySue (Dec 7)

If anyone wishes to start a free online petition in reference to drug issue - here is a link for the UK (Free)
Our local community group use this site (Australian) all the time - quite a few issues
Category: Uncategorised

Replies: 3

Last updated: 12 January 2010
angela on 6 December 2009

Category: Uncategorised

Replies: 4

Last updated: 16 December 2009

MP Letter - Template
by Jed (Dec 16)

Thanks Simon and Richard.
Richard, I'm happy for Sandy to pass on my email address to you. I'll email her about this now.

by Richard42 (Dec 11)

Great letter - much better than the one I wrote to Vince Cable. He told me you had put the case very persuasively, and he was right.
Seems we share our consultant and live nearby. Rather than post

by Simon Clayson (Dec 11)

Jed
Thank you for sharing your excellently constructed draft letter to MPs. I hope others will adapt it into their own words and send it to their MPs.
I met my MP (Laurence Robertson, Tewkesbury) a

by sandy craine (Dec 10)

Please find this under newswire

Sandy
Category: Uncategorised

Replies: 4

Last updated: 16 December 2009
bobosbo on 5 December 2009

Category: Uncategorised

Replies: 8

Last updated: 17 December 2009

Reply from the Speaker of the House of Commons
by PhilB (Dec 17)

I had an interesting reply from my MP Robert Key who has been very active in Health issues, select committees, etc. He stressed the importance of NICE being independent and making decisions only on

by vickiep (Dec 13)

My very elderly mother wrote to her M.P., Michael Mates and this was a very scant letter as she didn't speak to me about it first. However, not only did she get an immediate response from him, but

by karen (Dec 8)

Here's my answer from my MP:
It was kind of you to let me have your views.

I can wholly understand why you are so concerned and you have my utmost sympathy. It is extremely disturbing to know

by vickiep (Dec 6)

Is your piece in the online version of the Bucks Herald...stupid me couldn't find it!

Vickie
Category: Uncategorised

Replies: 8

Last updated: 17 December 2009
kiruba ganesh on 5 December 2009

Category: Uncategorised

Replies: 1

Last updated: 5 December 2009

regarding clinical trail for dasatinib
by PhilB (Dec 5)

Hi Kiruba,

Sorry to hear that Glivec hasn't been working for you. Can I suggest you also post this message on the Asian CML Support Group site: http://asia.groups.yahoo.com/group/

by kiruba ganesh (Dec 5)

hi all,

Good morning to all.i am back. anyway again i give a small intro to all. i am kiruba ,26 years old.diagnosed with CML in 2007.At present i am staying in tamilnadu, india.
I am
Category: Uncategorised

Replies: 1

Last updated: 5 December 2009
arrowsc on 4 December 2009

Category: Uncategorised

Replies: 1

Last updated: 5 December 2009

Letter back from my MP
by Steven D (Dec 5)

James Clappison MP and shadow cabinet minister replied to my meeting with him as follows.
"Thank you for attending my surgery on Friday 27th November, in order to discuss current treatment of

by arrowsc (Dec 4)

Hello all,
I received a letter back from my MP, John Cummings, from the Easington, County Durham constituency.
Thank you for your recent letter in which you advise me of the problems of
Category: Uncategorised

Replies: 1

Last updated: 5 December 2009
Barbs on 4 December 2009

Category: Uncategorised

Replies: 3

Last updated: 4 December 2009

Article from the Northants Evening Telegraph
by Simon Clayson (Dec 4)

That comment really got up my nose as well Dennis. I think it is completely contrary to the ACD, which implies that there is agreement that these drugs are effective but the cost effectiveness

by vickiep (Dec 4)

For goodness sake Dennis, he's busy filling in his expenses claim form and doing his Christmas shopping!!Mine, Charles Hendry (the name says it all) has passed my coments on to the Secretary of

by Dennis (Dec 4)

From that article:
"Although there is some evidence to suggest that dasatinib and nilotinib could be considered clinically effective, the quality of that evidence was extremely poor."
Absolute

by Barbs (Dec 4)

Jed AlexanderADVERTISEMENTPublished Date:

04 December 2009

By Bernie Goodjohn

Wellingborough reporter

Jed Alexander's life hangs in the balance after a drug he needs to fight
Category: Uncategorised

Replies: 3

Last updated: 4 December 2009
Bhiru on 3 December 2009

Category: Uncategorised

Replies: 5

Last updated: 5 December 2009

Coverage in Daily Mail (NICE)
by Jed (Dec 5)

I actually have a mutation, Vickie. Although I understand that there's a lot that isn't understood about responses to these drugs, and people with the same mutation can have a very different

by vickiep (Dec 5)

It was great of you to post above, but I found a copy of yesterday's Mail in next door's re-cycling box so have the photo as well...very, very beautiful of you both and makes your letter extremely

by Jed (Dec 4)

Thanks, both of you.
The letter in the Daily Mail is actually different to the article on the front page of the Northants Evening Telegraph, Vickie. I've included a copy of it below. It's based on

by vickiep (Dec 4)

Assume what's in the Daily Mail is the same as the Northants paper which is totally excellent!!!Really well done and THANK YOU!!! :-)

Vickie
Category: Uncategorised

Replies: 5

Last updated: 5 December 2009
Bhiru on 2 December 2009

Category: Uncategorised

Replies: 2

Last updated: 2 December 2009

Reply from Department of Health re. NICE ACD
by sandy craine (Dec 2)

Dear Pennie,
CML Support are official consultees and I am in the process of writing our comment to NICE.
I have 4 days to finish it. I met with 3 other large patient charities yesterday and they

by Pennie (Dec 2)

Hi Jed and Bhiru
Reply I got very similar, but by post. Wonder if comment about registered stakeholders as responders infers that we as individuals can not respond? Anyone know the answer to this

by Bhiru (Dec 2)

Bhiru's husband, Jed, here:
I've just received the following email from the Department of Health. A similar response has been sent to a number of my friends.
It's a bit of a fob off.
I am, of
Category: Uncategorised

Replies: 2

Last updated: 2 December 2009
Graham Richards on 2 December 2009

Category: Uncategorised

Replies: 4

Last updated: 2 December 2009

Petition to Number 10
by Alastair C (Dec 2)

Great work folks. I have an appointment with my MP on 11 December, but now have an interview that day so can't make it - company being reorganised and we have to apply for new jobs. I'll try to re-

by maccack (Dec 2)

Graham
You can easily set up a new email addresses for your mother and in laws. The email address/name doesn't have to be anything meaningful and can be set up with hotmail, yahoo, google as

by Bhiru (Dec 2)

Bhiru's husband, Jed, here:
Just read your comments Simon. They're very helpful. Thanks so much for posting them up.
Jed

by Simon Clayson (Dec 2)

Graham
It is great to hear that you have arranged a meeting with your MP. I think a face to face meeting is so much more effective than a letter or email.
No doubt you will be planning what to
Category: Uncategorised

Replies: 4

Last updated: 2 December 2009
sandy craine on 1 December 2009

Category: Uncategorised

Replies: 4

Last updated: 2 December 2009

helful hints for NICE comments -Newswire
by BarryAllsop (Dec 2)

Great work by everyone in getting this matter to the attention of MPs and the press

and into the Downing Street site. Let us hope it will have the desired result.
I have not posted for a long

by Bhiru (Dec 1)

For those of you who haven't read the comments by the Royal College of Physicians, this is a very easy to read response to the model that NICE used. It highlights in clear language what some of the

by Dennis (Dec 1)

Bhiru - this will be andy Parkins. post on the 25th November, under the heading "some ideas" further down the page?

by Dennis (Dec 1)

I just want to say to all you people putting together a very good case for the continued use of these drugs, thank you very, very much.
Category: Uncategorised

Replies: 4

Last updated: 2 December 2009
Steven D on 1 December 2009

Category: Uncategorised

Replies: 2

Last updated: 2 December 2009

Swine Flu
by Paul C (Dec 2)

I had a bad reaction to the first of the two swine 'flu jabs, Pandemrix, which caused all the expected symptoms that you should not get from a non-live virus. The main effect was uncontrollable

by Ali Loram (Dec 1)

Hi Steven, my Gp said the same ie a second jab in two weeks time. Watch out for a very sore arm, mine was very swollen, I looked like pop eye, the lump was about the size of a small orange! One

by Steven D (Dec 1)

Hi
Just had my swine flu jab yesterday and they have booked me in for a second jab in 3 weeks.
Just checked with the powers that be at Hammersmith and they say transplant or not should have second
Category: Uncategorised

Replies: 2

Last updated: 2 December 2009
sue on 30 November 2009

Category: Uncategorised

Replies: 1

Last updated: 30 November 2009

Yorkshire Region CML Support Group Meeting
by drjamespotter (Nov 30)

What is the traffic like to get there from the M1 from the south (Derby)? I would like to come if I can.

by sue (Nov 30)

Hi this is just to remind everyone and invite anyone who wants to join us at our next meeting for The Yorkshire Region CML Support Group, which is on Monday 7th of December at 7pm at ST James
Category: Uncategorised

Replies: 1

Last updated: 30 November 2009
clive walpole on 30 November 2009

Category: Uncategorised

Replies: 2

Last updated: 3 December 2009

Hello and NICE ACD
by clive walpole (Dec 3)

Hi Pennie, thanks for that. I went to the Hammersmith yesterday all looks OK and no side effect so far.
Best regards
Clive

by Pennie (Nov 30)

Hi Clive You are not the only one finding this difficult ! My son - a maths teacher - also found the stats etc complex and misleading. Thats done to confuse I guess!
I kept my info to MP short

by clive walpole (Nov 30)

Hi, I have not contributed to the group before although I have followed it since I was diagnosed in 2002. I went through the usual treatments of Interferon. and was then given Gleevec. After a
Category: Uncategorised

Replies: 2

Last updated: 3 December 2009
Bhiru on 29 November 2009

Category: Uncategorised

Replies: 8

Last updated: 1 December 2009

Responses to NICE Appraisal - note Phillip Hollobone MP will raise his concerns in Parliament next week
by Tufty3 (Dec 1)

Bhiru&Jed
A fantastic effort, thanks again!
All the best

Chris

by Bhiru (Nov 30)

Hi All,
I recently asked all my friends and family to sign the petition and write to their MPs. This morning a friend of mine got in touch to say that he had seen a link to the petition on a

by karen (Nov 30)

Brilliant work Jed - all helps. Not sure how many people listen but I did a piece on Radio Kent at the weekend which went out 3 times over the course of Sunday and a few of the journalists signed up

by Tufty3 (Nov 30)

Hi Jed
What a fantastic effort;if the rest of us can take a leaf out of your book, we should make ourselves heard.
So far, I have posted my response on the NICE website, written to my MP Douglas
Category: Uncategorised

Replies: 8

Last updated: 1 December 2009
arrowsc on 29 November 2009

Category: Uncategorised

Replies: 3

Last updated: 29 November 2009

Article in todays News of The World regarding NICE
by vickiep (Nov 29)

www.newsoftheworld.co.uk/news/610179/Health-service-PAYS-to-block-life-saving-drugs-for-desperate-patients

Vickie

by vickiep (Nov 29)

Thanks for that one..

Here's the link for anyone who wants to read the article

http://www.newsoftheworld.co.uk/columnists/carolemalone/621812/Not-very-...
It might not work as it's

by arrowsc (Nov 29)

Craig A

by arrowsc (Nov 29)

Hi all,
The News of the Worls journalist Carole Malone has written a very well worded and blunt article on NICE, with regard to their recent desision on the liver cancer drug and the way the NHS
Category: Uncategorised

Replies: 3

Last updated: 29 November 2009
rebecca on 29 November 2009

Category: Uncategorised

Replies: 1

Last updated: 29 November 2009

fever with transplant
by kestrel (Nov 29)

When Rio had his BMT he had several infections that required IV antibiotics, which I am guessing is what you are going thru.I seem to remember that the transplant itself can lead to a temperature

by rebecca (Nov 29)

Hi,
I'm day +9 from my umbilical cord blood transplant and since Tiesday I have had a fever that does not seem to be stopping, has anyone else had this?
Thanks
Rebecca
Category: Uncategorised

Replies: 1

Last updated: 29 November 2009