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chris murphy on 16 December 2009

Category: Uncategorised

Replies: 3

Last updated: 17 December 2009

recently diagnosed bowel cancer
by vickiep (Dec 17)

I have read and re-read what you say Chris and feel very humbled by it and your blessings to all of us given what an ordeal you have all had.

I cannot thank you enough for sharing this with us

by Jed (Dec 17)

I'm so pleased for you and Brian, Chris.
It sounds like you've had some very difficult times, but have come through them all. I wish you the best of luck in January.
Best wishes,
Jed

by sandy craine (Dec 17)

Dear Chris..... this is really good news... no it is really fantastic news.

Thanks for letting everyone know, and your story shows that individuals do benefit from cancer research if they have

by chris murphy (Dec 16)

Hi All

I did leave a forum note recently because Brian had to go and have a sigmoidoscopy which picked up a cancerous growth. So now we are jubilant, saw consultant today and he has a large
Category: Uncategorised

Replies: 3

Last updated: 17 December 2009
Bhiru on 16 December 2009

Category: Uncategorised

Replies: 4

Last updated: 1 January 2010

Imatinib intolerance
by Bill Yellowley (Jan 1)

Hi Everyone, Happy New year !
Its been quite a long time since I last posted on this site thought I'd respond to fish4 with a few questions....

Can I ask if you were first diagnosed two years

by fish4 (Dec 18)

I have read your post and as per my ONC and a lot of research that has been done, Tasigma is not recommended for patients with any possibility of heart problems
I am 53 and as Glivic stopped working

by PhilB (Dec 17)

Have they done a Glivec level test? If his blood G levels were paricularly high on 400mg - whether because he's a slow clearer or for whatever reason - then that would (i) be a possible reason for

by sandy craine (Dec 17)

dear Bhiru,
I would say that given the complications of underlying heart problems a very quick referral to Prof. Richard Clark- CML specialist at the Royal in Liverpool- would be the best advice.
Category: Uncategorised

Replies: 4

Last updated: 1 January 2010
sandy craine on 14 December 2009

Category: Uncategorised

Replies: 6

Last updated: 15 December 2009

Contacting the Media?
by sandy craine (Dec 15)

If any of you want to contact journalists that might be interested I have some contacts. One or two of us are already doing this.

It is quite difficult to keep the interest up and so you need

by angela (Dec 15)

Hi Sandy
I've written an email to Dr. Chris Steele at "This Morning" on ITV but I haven't heard a reply. I think Jed's Story should be given to Dr. Chris Streel and see if he can get on national

by arrowsc (Dec 14)

Yes I read that with horror Vickie, its almost farcical. What will happen if the people in England who need these drugs are forced to move to Scotland, and then the Scots can't afford to fund the

by vickiep (Dec 14)

Craig, might it also be good to query the £1million that Labour put into Commissioning Support Service which, according the News of the W was set up to put pressure on NICE (not to sanction
Category: Uncategorised

Replies: 6

Last updated: 15 December 2009
ian hinley on 14 December 2009

Category: Uncategorised

Replies: 1

Last updated: 14 December 2009

BBC Website - Donor required
by sandy craine (Dec 14)

Dear Ian..... thanks for posting the link. I am rather confused though as this article does not mention the fact that there are 2 other drugs available. I wonder what she is being treated with while

by ian hinley (Dec 14)

Hope this lady finds someone soon...
BMT Donor Required
My thoughts are with her and her family.
Category: Uncategorised

Replies: 1

Last updated: 14 December 2009
Pesty on 11 December 2009

Category: Uncategorised

Replies: 1

Last updated: 14 December 2009

Petechia and moles appearing
by Sarah R (Dec 14)

My son Bill who has been on the Glivec since December 2007 also has these spots. Unfortunately they cover most of the tops of his arms, chest and back. We have mentioned this quite a few times to

by Pesty (Dec 11)

Hi all,
Has anyone developed Petechia (tiny red dots on skin) since starting Gleevic?
I have been taking the drug for 2 1/2 months now and the Petechia have popped up on my chest (about 10 or so
Category: Uncategorised

Replies: 1

Last updated: 14 December 2009
sandy craine on 11 December 2009

Category: Uncategorised

Replies: 4

Last updated: 14 December 2009

Another idea regarding NICE
by vickiep (Dec 14)

I only saw the Registrar today and when I asked him what their department (or Dr Grace) was doing to support the use of these drugs, the answer was "nothing, we're leaving it to those who know more

by vickiep (Dec 13)

Hi Sandy,
I'm seeing my Haemotologist tomorrow, so did send an email through as you asked for people to contact you direct? Anyway, the info you would want is that it's Dr Grace, Eastbourne DGH.

by sandy craine (Dec 13)

Hi Pennie... yes that is the Mike Richards that I am referring to. Do you think you could contact your specialist and ask him to contact Prof. Richards? I think CML specialists who understand the

by Pennie (Dec 11)

Sandy

Do you mean Professor Mike Richards CBE, National Clinical Director for Cancer at the Dept for Health?
I do wonder if the more of us that approach our specialists re the idea the more it
Category: Uncategorised

Replies: 4

Last updated: 14 December 2009
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