JenkazMrs

Hi All, Thanks for your kind words and encouragement, it's nice to share good news and give others hope at the same time! Also good to read that others are also doing well long may it continue! Love to all, Deanne xxx

Hi All, We are celebrating today the fact that my husband has now been on Tarceva for a year and had great success. Our local paper did a follow up I have included the link below. A CANCER sufferer is celebrating a milestone in his treatment today. It's been a year since grandad Jimmy Jenkyns, 55, of Bainbridge Avenue, Simonside, South Shields, started taking lung cancer drug Tarceva. The victim of a postcode lottery, he was forced to pay for the drug privately at first, at a cost of £1,700 a month, because health chiefs in South Tyneside refused to fund it. But after a high-profile campaign, led by his wife Deanne, 40, South Tyneside Primary Care Trust agreed to pay for the drug in September. To view full article click link http://www.shieldsgazette.com/news/Canc ... 3941642.jp Deanne x http://www.lc-action4life.co.uk

Thanks so much, Randy...you made me laugh thnks for your support as always. Jamie, Thanks your a star! Deanne xxx http://lc-action4life.co.uk

Hi Randy, Thanks so much, if I could get some patient statments who have benefited from Tarceva. what difference it has made to their lives how long they have been on it. Date of diagnosis ect, that would be great. Deanne xxx http://www.lc-action4life.co.uk

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

Hi, so sorry that Tarceva did not work for Michael. Hope that the Alimta gets good results. Everything crossed! Deanne xxx

thanks all for your Kind words and your support. You are all so amazing! Deanne xxx

Thanks so much everyone! We plan on celebrating big style this Christmas and we are rounding it off with a 16 Day Cruise round the Caribbean on the 5th Jan! Us along with 8 other friends so some party that will be!!! Love to everyone! Deanne xxx

Hiya All, Wow! what a week it has been waiting for these results! We sat waiting for the oncologist, like 2 fightened rabbits! He then came in and delivered his verdict. He said there is no change at all, Stable disease. He said he could not be happier as it has been 5 months since jimmy's last scan, which is a long time for a LC patient. To say we are thrilled is the biggest understatment OMG!!! I have the biggest smile on my face. could not have asked for a better christmas present. Thanks for all your support! ((((((((hugs)))))))))))) to all! Deanne xxx http://www.lc-action4life.co.uk

Hi All, some pictures from Saturday evenings charity Ball. It was a perfect evening. http://www.lc-action4life.co.uk/eventspage.htm http://charity-ball.blogspot.com Deanne xxx

Hi, Just wanted to say a huge thank you to all you wonderful people for your support and encouragment. It means so much! Deanne x http://www.lc-action4life.co.uk

Hiya guys, Thanks so much for including this and your continued support it means more than you could know Deanne x http://lc-action4life.co.uk

Thanks Katie, I think it is still sinking in! Been such a long haul just seems so surreal! Deanne x

Sorry Muriel, keep forgeting to tick the little box to show signature He is doing great I am pleased to say Deanne x http://www.lc-action4life.co.uk

Hi all, Today we received the news through Jimmy's oncologist that the PCT have agreed to fund Tarceva. It all feels somewhat surreal at the moment. I have campaigned so hard for this and it has caused many sleepless nights and a tremendous strain not just on us bu our family. Night after night writing letters to MP's the PCT, TV, newspaper interviews has finally paid off. While we are delighted by this we are small fish in a big pond as there are so many others out there finding themselves in long drawn out battles. I hope that our news will give others a boost fighting for drugs, I know how much it weighs you down and how frustrating it is. I hope if your reading this post it will give you the strength to continue with your fight. Goodluck to everyone! Deanne http://www.lc-action4life.co.uk

Hiya Dawn, Sorry your Dad is having problems with his eyes. Have you posted this on DR West's site? Hope things improve quickly. If your dad's eyes are sore has he tried using a lotion such as optrex? May soothe them a little...just a thought? Deanne http://www.lc-action4life.co.uk xxx

Thanks connie! Deanne xxx

Hi Welthy, Feel free to join and voice your opinions! the more the merrier lol! Dawn, thanks so much! Maryanne, I have replied to you on my site thanks do much! Deanne x http://www.lc-action4life.co.uk

Hi all, Wow we have a debate going on now! appologise in advance for the long post The NHS used to be one of the best in the world but lately it has been slated and it has been said that Cancer care is 3rd world! When Jimmy was 1st diagnosed I turned to the internet for hope and I found this website. Reading the posts on here gave hope. And I looked into other options. We were told by the oncologist to treat every day as our last! He basically put Jimmy in his box! I asked about treatment and he said he would give us what was available to them. That set alarm bells ringing straight away! I have copy and pasted from a poster I have just written to give you an insite to what has been is going on. My name is Deanne Jenkyns. I have been campaigning for the drug Tarceva to be made available to my terminally ill husband James Jenkyns. The case has had a lot of media attention. The drug is being refused to patients in England even though it is available to NHS patients in Scotland and to some other patients in different areas in England through their local PCT. The PCT here have been refusing to fund the drug. So if a patient wants access to this drug they have to pay for it at the huge cost of £1740.00 per month! I started a campaign and set up a support website for patients finding themselves in the same position and finding themselves having to fight for or self fund a life prolonging drug. Some patients using this drug have been using it for a number of years having only been given months to live before they received it. My husband Jimmy is doing fantastic on this drug and his recent CT scan shows the drug is working and after only 8 weeks his tumour has shrunk by 33% and he is leading a full and normal life. Since setting up my website I have came into contact with many who are now self funding and fighting for this drug. This has became somewhat of a headache for the oncologist...His words! He is now refusing to treat Jimmy at all! All I have done is brought out into the open that their are other treatments available out their offering some patients a possible lifeline and we are now being persecuted for that. Had I not done my own research about other options available and lets face their aren't many for Lung Cancer patients goodness knows where we would be now. Bottom line..the fact that I have made a noise and spoke out for what’s right has left my husband without an oncologist and he has been told to go else where for treatment . We now have the clinical evidence the PCT have been asking for so why should we change hospitals simply because the oncologist does not like to be challenged and thinks it is wrong of us to seek advice from else where and voice our opinions! I also highlighted the fact on my website that patients are being charged different amounts through the same oncologist for the exact same drug! A difference of £150.00 WELL GUESS WHAT? MY VOICE IS ABOUT TO GET LOUDER! I know that you may not be affected by this now, but you or someone close to you could be in the future. Each area in the England has it's own Primary health care trust (PCT) and even though there are guidlines isseud from NICE (national Institute of clinical excellence) it is up to each PCT in a particular area whether or not they will fund a drug or not!! So depending on your poscode in other words. It does not matter that you pay the same amount of tax! Thanks Deanne

Hi Guys, I just wanted to say I am overwhelmed by your support! Thanks so much! ((((hugs)))) to all! Deanne x

Gosh Randy, I am struggling about what to do about it myself. I do know however that I will be involving the media. I can also comfort myself with the fact that the scan results were fantastic and he is doing so well. I am just so angry with the whole situation. All of you know on here what a battle this is without having added presure like this. I ended up in our hospital emergancy department on thurs night after the events of the day with chest pain. Anxiaty attack, was really scary, thought I was having a heart attack! Scared me so much and poor Jimmy was also worried sick. as if he has not got enough to worry about! If I can think of anything that may be of help I will let you know! Thanks so much! Deanne x

Hi, Thanks fo your support. I have written to our New PM Gordon Brown and also our local Member of parliment. This is all way out of control. They don't like me having a voice...but as I have said on my website IT'S GONNA GET LOUDER! Thanks again Deanne x http://www.lc-action4life.co.uk

Hi all, To say that I am upset and annoyed would be an understatment! I have included the link to the discussion I started about it and have sought legal advice. I feel as though I am fighting not just for my husbands life but the whole NHS at times! http://deannejenkyns.proboards46.com/in ... 555&page=1 Deanne x http://www.lc-action4life.co.uk

Fantastic!!! Well done! Deanne x

Hi Randy, I am just keeping you updated because you have been so kind in supporting our campaign. Cancer victim loses drug battle A CANCER sufferer has lost his battle for life-prolonging drugs on the NHS. South Tyneside Primary Care Trust (PCT) has rejected an appeal by Jimmy Jenkyns against its decision not to fund Tarceva. But Mr Jenkyns and wife Deanne, from Bainbridge Avenue, South Shields, today vowed to fight on. The couple have been paying for the drug privately, spending £8,500 in total, but they only have a two-month supply left. Mr Jenkyns said the daily tablets have made him feel normal for the first time since being diagnosed with lung cancer last April. His wife said: "People with stage four cancer are not expected to live beyond eight months. "But Jimmy has always been quite fit and well since diagnosis and his positive outlook has really helped him immensely. "Since he started taking Tarceva, he hasn't had a twinge of pain. It has made such a difference to both our lives. "But what happens when we can no longer afford the drug? Have I got to sit and watch him deteriorate, or worse?" Mr Jenkyns's oncologist recommended him for the drug, which has not yet been approved for use in England and Wales. Draft guidance has been issued by the National Institute for Health and Clinical Excellence (Nice), but it does not recommend the use of the drug. However, the drug is available for free in Scotland and appeals have been successful in other parts of the country. As well as launching another appeal, Mr Jenkyns will ask his GP to be referred to another hospital, in an area where Tarceva is available on the NHS. Mrs Jenkyns, 39, says she believes health chiefs are looking at the cost, not the benefits it brings to patients. She said: "To me, the bottom line is he's doing well on it. There are not many options out there for cancer patients, so what is there, they should have. They shouldn't have to fight for it." She said the difference in cost between Tarceva and chemotherapy drug docetaxel is just £6 a day, which the couple have offered to pay. "We are not going to go away," she added. "We will be appealing against the decision again." The PCT said in a statement that Mr and Mrs Jenkyns have been given the opportunity to put forward their perspective. It added: "We involved an independent GP and a non-executive member of the PCT board to obtain totally unbiased consideration of Mr and Mrs Jenkyns's viewpoint; of the evidence base for the drug, taking into account Nice guidance and also guidance from the North East Cancer Network, and the views of Mr Jenkyns's consultant. "Unfortunately, after taking everything into consideration, we were unable to agree funding. We do review our decisions in the light of any changes in Nice guidance." Last Updated: 10 July 2007 2:19 PM Premium Article We now however have his CT scan report and we will be taking this to the next appeal! http://www.lc-action4life.co.uk