share your knowledge give your input

[Deanne Jenkyns]

Hi all,
Use this section is you want to offer any advice in fighting for this cause. Maybe you are on the same path as us at the moment fighting for a drug? Maybe you have won the right to use a drug. Anything at all you feel may help us please share it with us. whether is be news paper clippings emails and you want to share them please feel free.

Thanks
Kind regards
Deanne
x

[grahamb]

What a fantastic website. I only wish I had found something like this when my wife, Denise, was diagnosed with lung cancer over two years ago.
Her first course of chemo was successful and she didn’t have any more treatment for about twelve months. On her second course of treatment, Taxotere, she had a very bad allergic reaction and, therefore, could not have any more chemotherapy.

Then we read about Tarceva in the newspapers and we asked our Oncologist about it. He applied to our P.C.T. but they refused to fund it. It was a very worrying and stressful time for us. We were considering raising money by taking my pension early or selling the house.
I wrote to any one I could think of who could help, including, the Health Secretary, Shadow Health Secretary, our local MP and the P.C.T. and N.I.C.E. I contacted pharmacies in Canada and America.

The reply I received from N.I.C.E. was, as follows:
The absence of NICE guidance cannot, however, be regarded by Primary Care Trusts as a reason to refuse to pay for medicines if they are deemed appropriate for treatment. Each Primary Care Trust must therefore carry out its own appraisal of new medicines until NICE guidance is issued.
Our Oncologist re-applied again to the P.C.T. and a few months later, in May 06 they agreed to fund it. Why they changed their minds, I will never know, but Denise did pass nearly all the criteria for the drug, i.e. She had never smoked, she was female, young and fit, and had no other treatment suitable.

Denise took Tarceva for nine months up to March 07 when, sadly, she died. If she hadn’t had the Tarceva, Denise may not have been here to spend Christmas with us, but we will never know for certain what would have happened without it.

Tarceva, appears to work well for some people, and not so well for others, but the only way to find out is to take it, which some people don’t get the chance.

This Government is hell bent on reducing taxes. Why don’t they increase National Insurance so that these drugs could be paid for? It would only be a small extra amount for us each to pay. After all, Cancer affects one in three people.

Graham

[Deanne Jenkyns]

Hi Graham,
Thank you for sharing this with us, I am just sorry that you had to spend time fighting for it. I am so sorry that you lost your Wife. How are you coping, silly question I know. Sharing your story with us will offer others hope of getting this drug funded. Did your wife have secondaries? Hope you can stick around maybe you will be able to offer advice and we can offer you a friendly ear.

Take care
Deanne
x

[grahamb]

I'm sorry, I don't know what you mean by secondaries.

[Deanne Jenkyns]

Sorry Graham, Tumours elsewhere cancer spread.


Deanne

[grahamb]

The cancer was only in her lungs. The cancer started in her left lung in December 04. The lung filled up with fluid, (pleural effusion) making breathing difficult. Denise spent a week in hospital to have a Thoracoscopy and have her lung drained, and a small operation to seal the lining of the lung. The sugeon puts talcum powder in btween the lining of the lung to make it stick and to seal it. This was very successful. Denise then got on with her chemo and she was, more or less, fine up until January this year. The cancer had spread to her right lung and was inoperable. She came home from hospital, but she had to have an oxygen supply and we had to move our bed downstairs because the stairs were a struggle for her.

I had over two months off work to be with her. Believe it or not, but our son of 28yrs and our daughter of 25yrs are still living at home, so they came in handy for once.

Graham

[dtay]

Pleased you have the support of your children Graham - family are so important aren't they.

[grahamb]

When my wife got the rash on her face as a side effect of the Tarceva, she went to the Red Cross where thay provide a free service to help people with scars or birth marks etc.
They matched her skin colour with some masking make up and showed her how to apply it and gave her some to take home. All completely free, although they do appreciate a donnation.

She had to be reffered through her GP. We downloaded a form from the Red Cross website and took it to the Doctor for him to sign and then she got an appointment.

Graham

[dtay]

That is a fantastic piece of info - thanks Graham.

[Deanne Jenkyns]

Thanks so much Graham x

[phillipa]

Graham,

Thank you for this information.

Blessed be