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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
sandy craine on 20 November 2009

Category: Uncategorised

Replies: 2

Last updated: 21 November 2009

Devon and Cornwall have approve dasatinib and nilotinib
by sandy craine (Nov 21)

I wrote to them and had the answer that they will continue to fund until the TAG (Technology appraisal guidance) is published by NICE. Then they will follow that guidance.

First there is the

by Ali Loram (Nov 20)

Hi sandy, I am on to this already! I have spoken with Devon patient advise & Liason & asked them if they will still fund the drugs. Of course I am worried that they may refuse to fund me any

by sandy craine (Nov 20)

some of you may remember that around 3/4 weeks ago Devon PCT approved dasatinib and nilotinib for chronic and accelerated phases CML that were resistant to imatinib. See Newswire
I will try to find
Category: Uncategorised

Replies: 2

Last updated: 21 November 2009
sandy craine on 20 November 2009

Category: Uncategorised

Replies: 3

Last updated: 22 November 2009

Find your MP
by vickiep (Nov 22)

Thank you for all the work you're doing Sandy

Vickie

by sandy craine (Nov 21)

Dear Carlos... good you have written to your MP. We will update all on the correct -most effective- way to get the health ministers to actually see/read letters that we send them.
There is a way of

by carlos (Nov 20)

I have emailed my local MP Andrew Lansley.
And have sent letters to, Gordon Brown, David Cameron, Andrew Lansley, Andy Burnham and Norman Lamb.
Carlos

by sandy craine (Nov 20)

Link to Parliament website which has a 'find your MP' box .. lower righ hand side of page.
www.parliament.uk
Sandy
Category: Uncategorised

Replies: 3

Last updated: 22 November 2009
sandy craine on 19 November 2009

Category: Uncategorised

Replies: 2

Last updated: 22 November 2009

Pil B's points on the ACD- reposted from string further down page.
by sandy craine (Nov 22)

Phil, it is great to have your input and it is very much appreciated.

Hope your vicious cold is improving. I am almost back to normal ;o)

I am finishing a letter to DH Health ministers

by PhilB (Nov 20)

On top of ignoring all the best scientific data, there are a few more sneaky things they've done. In particular they have rigged the model so that a very large proportion of patients die of non-cml

by sandy craine (Nov 19)

I thought it worth reposting Phils summation of his reading of the ACD from the discussion lower down the page.
I agree totally with Phil's take on the model NICE have used as one that is not based
Category: Uncategorised

Replies: 2

Last updated: 22 November 2009
sandy craine on 19 November 2009

Category: Uncategorised

Replies: 3

Last updated: 19 November 2009

Contact me
by michael (Nov 19)

I have E-mailed my MP Dr Howard Stoat who is a part time GP and a member of most of the All party groups regarding health.

If everyone looks up their MP to see if they have any health

by sandy craine (Nov 19)

Dear Carlos,
It might be really good to see him face to face if you can... all MP's have a weekly surgeries in their constituencies.

Sandy

by carlos (Nov 19)

My local MP is Andrew Lansley. I will definately be pushing him.
I have also forwarded my letter to friends and relatives so they can tell their mps.
Carlos

by sandy craine (Nov 19)

Dear All,

please contact me privately so that I can put you in touch those interested in listening to your stories.
I think we need to be very strategic and clear in our arguments.
I am
Category: Uncategorised

Replies: 3

Last updated: 19 November 2009
Pennie on 19 November 2009

Category: Uncategorised

Replies: 7

Last updated: 20 November 2009

letters and emails sent re NICE
by carlos (Nov 20)

Here is a link to why these drugs must be allowed they can and do help other people.
www.metro.co.uk
Carlos

by Tufty3 (Nov 19)

Did anyone see the story on GMTV and ITV news today, about the Liver Cancer drug, which extends life for just a few months, being refused by NICE and the relaxed criteria for drugs which extend the

by Pennie (Nov 19)

Great Sarah, I hope they pick up the story. Good luck.
know what you feel about being winded - Ifeel as if panic has taken over my brain and pure anger is whats keeping me functioning.
We all have

by Pennie (Nov 19)

Carlos

I wrote an intro asking for help to overturn the decision - use full name of the document. I quoted para 1.1.1 in full to make clear what I was objecting to.
Bit about myself, suggest
Category: Uncategorised

Replies: 7

Last updated: 20 November 2009
bobosbo on 18 November 2009

Category: Uncategorised

Replies: 3

Last updated: 19 November 2009

Hearing
by bobosbo (Nov 19)

Hello Bhiru,

I have tried both Olive oil, top quality only, & ear drops, but both have failed to do the job. I have made an appointment to see the nurse to have them syringed out.

by Bhiru (Nov 19)

Hello All,
Given that syringing is not the most fun, have you tried loosening the wax with olive oil? My husband has been recommended he do that by a nurse and a pharmacist who both said buying ear

by Annie Kennedy (Nov 18)

This is a bit weird - I have been on glivec for 5 years now - in the last year have had problems with ears on and off - I know its wax problem (never had any problems with ears before now) - really

by bobosbo (Nov 18)

Has anyone had problems with the build up of excessive amounts of earwax since starting on Imatunib.

I was dx in Dec08 & untill July 09 had never had a problem with excessive earwax. Had
Category: Uncategorised

Replies: 3

Last updated: 19 November 2009
Michelle H on 18 November 2009

Category: Uncategorised

Replies: 1

Last updated: 18 November 2009

CML Transplants requiring DLI
by sandy craine (Nov 18)

Dear Michelle,

This is a real dilemma for you and must be so difficult. How old is your son, 11?
I understand that U Cords are a very successful source of donor cells because they contain very

by Michelle H (Nov 18)

We have been advised that my young son should have a Umbilical Cord Transplant. There is a donated umbilical cord with a 9/10 match on reserve for him. He changed from Imatinib to Dasatinib in
Category: Uncategorised

Replies: 1

Last updated: 18 November 2009
sandy craine on 18 November 2009

Category: Uncategorised

Replies: 22

Last updated: 23 November 2009

NICE ACD- nilotinib/dasatinib
by vickiep (Nov 23)

I now think that all we actually need to do is get a petition link that we can all paste into our Profile page on F.Book.

Vickie

by vickiep (Nov 23)

I think it's important to start a Facebook Group of our own in order to maintain our personal/family privacy. I have no idea how this could be best achieved. We'd need administrators and we'd need

by Sarah R (Nov 23)

removed

by Pesty (Nov 23)
Category: Uncategorised

Replies: 22

Last updated: 23 November 2009
michelle on 17 November 2009

Category: Uncategorised

Replies: 6

Last updated: 26 November 2009

GP wasn't sure if I needed 2 vaccinations for swine flu on glivec pls advise
by fehr (Nov 26)

I made the point about normal blood counts to my GP and he replied that we had better assume that I am immuno-suppressed. I have to have two jabs, three weeks apart. First one was two days ago

by vickiep (Nov 22)

My Oncologist said that with the blood count showing "normal" that I was not immuno "vulnerable". (Stuck for the right word just now!) My G.P. however, is of the opinion that "better safe than sorry

by Dennis (Nov 18)

Got a letter from my GP this morning saying that the swine flu vaccination comes in two doses - three weeks apart. I have to have both vaccinations.

by Steven D (Nov 17)

I saw my consultant at Hammersmith last week and was advised to have both flu and swine flu jab and that I need only one dose of the swine flu. I am on 400mg of Imatanib.
Hope this helps
Steven
Category: Uncategorised

Replies: 6

Last updated: 26 November 2009