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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
Steven D on 27 November 2009

Category: Uncategorised

Replies: 6

Last updated: 2 December 2009

Response to NICE appraisal
by Bhiru (Dec 2)

Phew! Have just submitted comments on the NICE website. It's not an easy form to fill in.

For those of you who have yet to do it, be warned that there is a limit on how many words you are

by vickiep (Dec 2)

Very pleased for you Keith (she said through gritted teeth!!). I've always slept really well until now and it's impacting on my functionability (!) now..tried all the usual..

Vickie

by keith Pratt (Dec 1)

Hi Vickie

sleep like a log, every night for a regular 8 hours at least. I cannot remember ever having a problem with insomnia.

Only problem I ever has was in 1997 when as an in-patient

by vickiep (Dec 1)

Nice one Keith!!!

p.s. do you get much sleep on the Dasatinib?

Vickie
Category: Uncategorised

Replies: 6

Last updated: 2 December 2009
Carol on 27 November 2009

Category: Uncategorised

Replies: 2

Last updated: 26 January 2010

Patient Support Group Meeting At Hammersmith, Saturday 23rd January 2010
by skiinglaketahoe (Jan 26)

Hi,
Just to say that it was nice to meet new and old friends on Saturday. I thought that Professor Apperly spoke extremely well. It was all very interesting and informative.
I just thought it was a

by Carol (Jan 17)

Carol

by Carol (Nov 27)

Patient Support Group Meeting at Hammersmith

EVERYONE WELCOME

LEUKAEMIA PATIENTS SUPPORT GROUP

CATHERINE LEWIS CENTRE RECEPTION

HAMMERSMITH HOSPITAL

Du Cane Road
Category: Uncategorised

Replies: 2

Last updated: 26 January 2010
chris murphy on 27 November 2009

Category: Uncategorised

Replies: 2

Last updated: 27 November 2009

bowel cancer diagnosed this morning
by vickiep (Nov 27)

Big hugs, blessings to you both...

Vickie

by karen (Nov 27)

Dear Chris

So sorry to hear about the diagnosis, let us know how Brian gets on next week and keep strong. Love to you both

K

by chris murphy (Nov 27)

Hi All
Latest blow, Brian has had CMl for 3 years now and after visiting the hospital for sigmoidoscopy has been told he has a cancerous growth. So here we go again. We don't know any more at the
Category: Uncategorised

Replies: 2

Last updated: 27 November 2009
Pennie on 27 November 2009

Category: Uncategorised

Replies: 10

Last updated: 27 November 2009

Please respond to NICE appraisal.
by carlos (Nov 27)

My mothers MP has responded like this:
"I will shortly be writing to your local Primary Care Trust to encourage them to lobby the NHS on your son's behalf, as they have a commitment to his care. I

by vickiep (Nov 27)

NOOO!!!I'm not upset..more upset with my blocked downpipe!!!!

Thank you anyway!!!

Vickie

by Dennis (Nov 27)

Oh I'm sorry Vickie, it sounds like I've upset you. I didn't mean to do that. My post wasn't directed at you personally, it was aimed at all or any CML'er. There's absolutely nothing wrong with the

by vickiep (Nov 27)

I do very much understand what has been said about the petition, but please remember how very much it also means to family and friends for them to FEEL that there is something they can do. One of
Category: Uncategorised

Replies: 10

Last updated: 27 November 2009
karen on 26 November 2009

Category: Uncategorised

Replies: 2

Last updated: 26 November 2009

Rarer Cancers Forum
by karen (Nov 26)

HI Sandy, I think everything you are doing is brilliant and its right that this group is the official representative but I just wondered why they don't seem to be campaigning or even carrying

by sandy craine (Nov 26)

Hi Karena,

NICE recognises the CML Support Group as a representative of CML patients in the UK. We have been asked to comment formally to NICE and will be doing so. I am meeting with 2 other

by karen (Nov 26)

Bearing in mind that there are only a small group of CML patients compared to some other cancers would it not be possible for an organisation such as the Rarer Cancers Forum to campaign on our
Category: Uncategorised

Replies: 2

Last updated: 26 November 2009
vickiep on 26 November 2009

Category: Uncategorised

Replies: 14

Last updated: 3 December 2009

PETITION RE NICE REPORT
by Dennis (Dec 3)

Yes, that works. 3165 now.

by vickiep (Dec 2)

I had the same problem Dennis until I used the original link sent through to my email address, which was the one from 10Downing Street entitled "Signing up to ask the Prime Minister".

This is

by Dennis (Dec 2)

I can't make head nor tail of that petition. The total seems to have gone down over the last few minutes. I also know people who have signed yesterday and their names don't show.

by Tufty3 (Dec 1)

Just had a quick look at the total, which has reached 1725 and still 3 weeks until the deadline!
Great work everyone
All the best

Chris
Category: Uncategorised

Replies: 14

Last updated: 3 December 2009
sandy craine on 23 November 2009

Category: Uncategorised

Replies: 11

Last updated: 25 November 2009

Some ideas
by Dennis (Nov 25)

Simple question for anyone:-
How can anyone appeal the way NICE have reached a decision? I know we can appeal the decision itself, but how do we appeal the methods used by NICE?

by sandy craine (Nov 25)

Dear Andy..... thanks very much for the links to the RCP response to NICE on their website. I am sure these arguments will help a lot of people (including me) to formulate responses to NICE.
I noted

by johnh (Nov 24)

Andy,
Thanks for those links. The first one answers my question above, about the longer duration of treatment for dasatanib. This will only be true when dasatanib is the initial treatment. I had

by Andy Parkin (Nov 24)

There are a couple of very useful responses to the document on the NICE website from the Royal College of Physicians

http://www.nice.org.uk/nicemedia/pdf/RCPhysiciansComments.pdf

and the
Category: Uncategorised

Replies: 11

Last updated: 25 November 2009
sandy craine on 23 November 2009

Category: Uncategorised

Replies: 2

Last updated: 25 November 2009

NICE ACD- nilotinib/dasatinib
by Alastair C (Nov 25)

I wrote an e-mail summarising all our concerns to my MP last night. I have had a response today with an invitation to call him to arrange an appointment, which I will follow up. I also wonder if it

by vickiep (Nov 23)

Thank you so much for the work you are doing on our behalf Sandy. Your expertise and knowledge in this field are inavaluable to us all.
I am guilty of publishing my email address on a prvious

by sandy craine (Nov 23)

Dear All,

please be assured that we are working on our response to NICE ACD through the correct procedures and as official consultees.
I am also working on a letter which we intend to send to
Category: Uncategorised

Replies: 2

Last updated: 25 November 2009
shelleycharing on 22 November 2009

Category: Uncategorised

Replies: 2

Last updated: 24 November 2009

Dasatinib/NICE - we are not working alone
by sandy craine (Nov 24)

I understand your view Michael. However, industry are bound by rules regarding talking directly to patients/groups who benefit by their products. They are bound (at least in the UK) by strict ABPI

by michael (Nov 24)

I welcome any surport that BMS can offer,yes they have a vested interest,but so do I Dasatanib keep me alive.

BSM I would think have more information on their own drug than any other party,and

by shelleycharing (Nov 22)

From my partner, Alan, CML'er taking Dasatinib:
I've come to this NICE debate a few days late, having received an email from a friend working for a Public Relations firm that has been asked to look
Category: Uncategorised

Replies: 2

Last updated: 24 November 2009
Martha Stuart-B... on 21 November 2009

Category: Uncategorised

Replies: 4

Last updated: 21 November 2009

Baby boy
by Ali Loram (Nov 21)

Very many congratulations to you Martha & a huge welcome to your new baby boy. You are very luck..enjoy him!

Ali

by hcy0da (Nov 21)

Many congratulations, it's a welcome reminder that there is still a lot of good out there with this condition.

by Michelle H (Nov 21)

Congratulations to you and your family Martha.

by sandy craine (Nov 21)

Dear Martha,

many congratulations on the birth of your baby boy. This is great news. Thank you for letting us all know.
Kind regards,

Sandy
Category: Uncategorised

Replies: 4

Last updated: 21 November 2009
Pesty on 20 November 2009

Category: Uncategorised

Replies: 1

Last updated: 21 November 2009

No. 10 NICE Petition - plus NICE Annual Conference in Manchester
by sandy craine (Nov 21)

Dear Michelle,

A petition is certainly worthwhile, and it is something that CML support might do, but wording needs to be carefully thought out and measured.

To be really effective in

by Pesty (Nov 20)

Hi all,
I have applied to create an online 'Official No. 10 Petition' - I have submitted the details and hope to have a link to circulate soon.
I hope this helps!
Also, please see this link:
Category: Uncategorised

Replies: 1

Last updated: 21 November 2009