|
|
Post by Deanne Jenkyns on Feb 11, 2008 11:45:56 GMT 1
I have circulated this email to all members.
Action Needed!
Patients and carers,
NICE has again knocked back guidance for the drug Tarceva. In a press release on Friday they said that the drug was not cost effective. Basically meaning that patients will still have a fight on their hands to get access to the drug. This is one of many approved drugs being denied to cancer patients. Patients who live in the North East and Cumbria will still have access to the drug. Other PCT’s throughout the country are giving it to patients creating a post code lottery! This has been dragging out for some time now. Final guidance will be issued in April. Patients need this drug now! NICE are supposed to fast Track cancer drugs but instead they are sentencing patients to death! ON June the 6th last year we staged a rally outside NICE head quarters in London while I attended the meeting inside. Which created media attention. I would like to plan a protest so need some bodies to attend . If I can drum up some support I will again involve the press and TV adding weight to the campaign.
Regards,
Deanne Jenkyns
|
|
|
|
Post by Deanne Jenkyns on Feb 11, 2008 14:20:39 GMT 1
So far, I have recieved emails from the following people saying that they want to be involved in the Demmo, we need as many as posible to make an impact.
Louise Hughes
Jennie Ross
Duane Roberts
Ange Roberts
Deanne Jenkyns
Jimmy Jenkyns
Tilly Ashton
Vicky Scott
Phillipa
Emily Rance
vtrebol
Ros
Janet
Daisey
Bob
Pam
|
|
|
|
Post by vtrebol on Feb 11, 2008 16:47:40 GMT 1
I agree totally, although my husband is still on chemo, (not sure if its working yet ) I know we would want to at least try Tarceva if it doesn't. So unless they change their minds we will be coming home to geordie land, (Whitley Bay). We currently live in N/ Warwickshire, so getting to London is a doddle, if you want support. How can they put a price on life? Mind you its funny we have a scottish prime minister, and these drugs are on the NHS in Scotland!!!! Anyway thanks for keeping us informed. We are at the oncologist on wednesday, so fingers crossed.
|
|
|
|
Post by Deanne Jenkyns on Feb 11, 2008 16:53:35 GMT 1
vtrebol,
Thanks the more boddies we can get up there the better! Goodluck with your hubby app with the onc. Hope all goes well!
Love,
Deanne
xxx
|
|
|
|
Post by Deanne Jenkyns on Feb 11, 2008 17:47:18 GMT 1
updating list  |
|
|
|
Post by shazbok on Feb 11, 2008 21:34:43 GMT 1
Oh yes and no one can agree more than I do on the unfairness of this post code lottery for drugs, I realise am lucky to have been able to persuade my PCT to rethink their decision but I shouldn't have had to and i am now getting the drug 12 wks later than I would if I had lived in Scotland! Sorry can't say we'll be the if it's to be April as I'm supposed to be doing a 17mile sponsered walk to Weston Park Hospital to raise awareness of Lung Cancer and funds for helping other cancer sufferers get help & support during reatment, also I am to be a model in a fashion show to raise funds for a 'beauty salon' for cancer sufferers and we are not allowed to miss any rehersals in April/May- worse than being at school - all models have had/got cancer and I got volunteered by my clinic sister and my lung specialist nurse-must have mug written on my forehead
Will be there in spirit if not in body
Sharon x
|
|
|
|
Post by Deanne Jenkyns on Feb 11, 2008 22:11:24 GMT 1
Dear Shaz,
wow what a busy Bee you are! Well done, fantastic what you are doing! ;D Keep us all posted as to how it all goes.
Deanne
xxx
|
|
duane
New Member
Posts: 44
|
Post by duane on Feb 12, 2008 10:26:12 GMT 1
|
|
|
|
Post by Deanne Jenkyns on Feb 12, 2008 11:29:53 GMT 1
Hi Duane, Thanks for the link. I emailed them yesterday and did not hold back Deanne xxx |
|
|
|
Post by Deanne Jenkyns on Feb 12, 2008 11:42:02 GMT 1
I Recieved this message this morning from Jamie, Will be sending it to NICE, if anyone else has had success with Tarceva feel free to give your details or email them to me I would love to share my story. Diagnosed in dec of 2004 with Stage IIIB NSCLC began Tarceva in April of 2005 and am about to hit the 3 year mark of being cancer free... Still considered 1st line treatment. I do not get the rash anymore or many other side effects. Hope this helps!!! Let me know if you need anything else. xoxo Jamie _________________ "Taking off your shoes is a sacred ritual. It is a hallowed moment of remembering the goodness of space and time. It is a way of celebrating the holy ground on which you stand." ----------Macrina Wiederkehr Age 35 at diagnosis Dx December 2004 Stage IIIB Started Tarceva June 2005(working) Stable scans (8/2005) Stable scans (10/2005) Stable scans (11/2005) Celebrating 1 year since diagnosis 1/16/06 NED--just scar tissue and/or fibrosis 4/16/06 NED--just scar tissue and/or fibrosis 7/19/06 Stability again--Thank you Lord Jesus!! 11/19/06 NED 1/19/07 NED Again!!! 4/19/07 NED Again!! God is Good! 7/21/07 NED AGAIN!! Pet was clear!! 10/25/07 NED AGAIN!!! God is Good! |
|
|
|
Post by Deanne Jenkyns on Feb 12, 2008 19:42:22 GMT 1
Bumping thread
|
|
Vicky
Full Member
Here to support Deanne & Jimmy!!
Posts: 127
|
Post by Vicky on Feb 12, 2008 20:37:51 GMT 1
Hiya Deanne,
I know we have already spoken but i just wanted to say again how proud i am of you, you are the most amazing woman i have ever met in my life, you continue to fight for everyone that is fighting to get tarceva, and for anyone that may need it in the future. You had such a tough and exhausting fight to get Tarceva funded for Jimmy yet you still continue your selfless fight for others.. the world needs more people like you in it.
I feel honoured to call you my friend and i will always back you 100%.. right by yourside is where i'll always be.
Love you so much,
Vicky xxxxxxxxxxxx
|
|
|
|
Post by Deanne Jenkyns on Feb 12, 2008 20:55:28 GMT 1
Thanks sweetie ;D
(((((hugs))))))
Deanne
xxx
|
|
|
|
Post by daisey on Feb 12, 2008 22:37:12 GMT 1
If we are in the country, we will be there! Anyway we can help..........
Daisey x
|
|
|
|
Post by Deanne Jenkyns on Feb 12, 2008 23:10:24 GMT 1
Hi Daisey,
I want to get as many people involved in this as I can! My feeling is the more people I can get the more impact. I will Try and come up with a date to suit all. I will add your names to the list in the hope that you can make it. Will get back with a date ASAP. If we can find a date to suit all means that more people will be there. I don't want to drag people down to the capital if only a few of us can make it as it won't have the same impact.
Deanne
xxx
|
|
|
|
Post by Deanne Jenkyns on Feb 13, 2008 11:38:23 GMT 1
Recieved this message from Sharon ;D
Hi,
Just wanted to let you know I am drumming up support here in Australia for tarceva. Currently anybody wishing to take it has to pay $8000 for 2 months supply, then if it is deemed to be working Roche will supply it free of charge. Ridiculous. I have been on talkback radio over here and am about to email and phone anybody I can think of to highlight this. Tarceva is again up to be approved next month, from what i hear it doesn't look good.
I have been on it for 3 years this April and without it I wouldnt be here. My 2 kids (14 & 16) would not have a mother and my partner would be without their soulmate. This drug has saved my life, that is no exaggeration.
If you need help I will do what I can from down here.
All the best,
Sharon
|
|
|
|
Post by wendy on Feb 14, 2008 10:33:30 GMT 1
Hi there
Mailed NICE the other evening to show my disgust, but do they care?
Deanne, you really are fantastic this website offers such hope and help to desperate people out there who have nowhere else to turn is such times of distress. WHY don't people out there listen.
You know I will do anything I can
Love
WendyXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX
|
|
|
|
Post by Deanne Jenkyns on Feb 19, 2008 17:29:03 GMT 1
Hi All,
Final guidence for Tarceva will be issued in April, the date I have in mind for a protest is Friday March the 28th outside the NICE headquaters in London. I will circulate this again in a email. Is this date good for everybody?
Deanne
x
|
|
|
|
Post by Deanne Jenkyns on Feb 19, 2008 18:02:49 GMT 1
So far, I have recieved emails from the following people saying that they want to be involved in the Demmo, we need as many as posible to make an impact.
Date in mind Fri 28th March
Louise Hughes
Jennie Ross Able to attend
Duane Roberts unable to make that date
Ange Roberts unable to make that date
Deanne Jenkyns Adble to attend
Jimmy Jenkyns Able to attend
Tilly Ashton Able to attend
Vicky Scott
Phillipa
Emily Rance hopes to attend
vtrebol
Ros Able to attend
Jo Able to attend
Janet
Daisey
Bob
Peter Knowels able to attend
Sharon unable to make that date
Pam
|
|
|
|
Post by Deanne Jenkyns on Feb 21, 2008 14:22:12 GMT 1
Just updating and bumping this information
|
|
|
|
Post by Deanne Jenkyns on Feb 22, 2008 11:08:37 GMT 1
Updating list
|
|
|
|
Post by Deanne Jenkyns on Mar 18, 2008 21:09:02 GMT 1
Hi Members,
I regret to inform those who have offered to take part in the Demo at NICE headquaters in High Holborn London it has been cancelled. Reasons behind this too many people are now unable to attend and it would not be fair for people to travel such a long way when so little bodies can attend.
Thank you all,
Deanne Jenkyns
|
|
LC charity Ball
