Lung Cancer Support Website
On the 27th April 2006 my husband was diagnosed with Non Small Cell Lung cancer our world fell apart. You hear people being diagnosed with cancer everyday but when it happens to someone you love it turns your whole world upside down. He has been through months of chemotherapy and weeks of radiotherapy. A follow up CT scan revealed that the primary tumour has not grown but we do not know the impact of the radiotherapy because there is so much scarring around the site of the tumour. It showed however that he has smaller tumours which have progressed. We asked for the Drug Tarceva which is being used to treat patients with NSCLC. We were told we could not have it unless we paid for it. This drug is available in Scotland but not here. We are now having to fight for the right to use this drug on the NHS. This has all been quite exhausting for us the fact that my husband has lung cancer is a hard pill to swallow, but the fact that we have to fight for what is an approved drug is disgraceful. A lot of the time a patient just accepts and trust what their Doctor tells them without asking questions and don't know about new treatments. The only reason I came across the drug Tarceva is I was searching the internet for new treatments. Patients often don't have it in them to ask questions or fight for whats right when they are delivered such devastating news their is so much to cope with. My husband has remained positive right throughout the but this has been really distressing for him knowing that this drug is freely available in Scotland but not to him is just ludicrous! I am not just fighting for him but for other patients too. I want them to be aware of what's going on. Nobody wants to think about someone they love getting lung cancer we did not expect to be in the position we are today, up until last year we were getting on with our lives and then we were dealt this devastating blow. I suppose that I am trying to say is that it can happen to anyone, none of us know what's around the corner. We want to hear from others with non small cell lung cancer who have been refused this drug.
The
Lung Cancer patients charter states that all patients. Be given
rapid access to up-to-date treatments. Yet patients are being denied
the use of this drug unless of course they are in a position financially
to fund it themselves.
I
have also found out that other PCTs have been forced by courts
to give this drug to patients. One of them died by the time
it was approved. My feeling is that if it is given
to others it should be given to other patients who meet the criteria,
surely peoples lives cannot be down to a postcode lottery,
how can a life extending drug be given it to one person and not another?
All
patients who may benefit from this drug should have access to it. It
has always been stressed by my husbands oncologist that its all about
quality of life yet patients are being denied and having to fight for
a drug that does just that! Tarceva is a pill that is taken daily
meaning a patient does not have to spend time in hospital and suffer
the terrible side affects that goes with chemotherapy therefore improving
their quality of life and allowing them to spend more quality time with
their loved ones.
Tarceva
is a therapeutic advance in the treatment of 2nd line non small cell
lung cancer. Tarceva has been shown to help some patients live
longer. In a large clinical study, 31.2% of patients taking Tarceva
were living with their advanced-stage NSCLC one year after they started
Tarceva, compared with 21.5% of patients not taking Tarceva (placebo).
That's a 45% increase in one-year survival for patients taking Tarceva.
How well Tarceva works for you may differ from these results.
May slow tumor
growth
Tarceva may slow or stop the growth of cancer and even shrink the tumors
in some patients.
Offers convenience
Tarceva is a pill you take by mouth once a day as prescribed by your
doctor.
Update.
We decided to self fund Tarceva for a few months at the same time we are fighting South Tyneside Primary Health Care Trust for funding of this drug. While we cannot afford £1741.00 a month we also could not afford to wait so we borrowed the money to fund the drug. Since starting Tarceva within just days Jimmy became pain free. He is not using any pain relief at all, previously he was using, Tramadol, Diclofenac, Oramorph and paracetamol. We were astonished at how quickly he responded. His breathing improved almost immediately and is now back to normal. Jimmy has been out on his bike and has been able to go back to work too! He started Tarceva on the 3rd April and he is now leading a normal life. You would never believe he has Lung Cancer. We found out a few days ago that the PCT has knocked back the appeal and will not fund Tarceva, even though Jimmy is now back to normal. They say there are no special circumstances! I had previously questioned this and asked what they warrant as 'special circumstances' They have not been able to come up with an answer. They say they base their decisions on studies and trials, we know that Tarceva is not for everyone, but that goes for any drug. One patient may respond well to chemo and another may not but they do not withhold this treatment...why? Because it's cheaper! Since setting up this site I have came into contact with patients using Tarceva and some of them have had great success with it and have been doing for a number of years. Leading normal lives...going out to work..bringing up their kids. How can a patient be denied that chance. Even if it does not work they will have known they have tried. So the fight goes on...watch this space.
June
28th 2007 14 months from Diagnosis
Jimmy continues to do well on Tarceva, he is leading a normal life and is still pain free! Our second appeal was knocked back for funding but we will be appealing again.
July 5th 2007 CT Scan Results Following Tarceva
1. Primary Tumour Shrunk from 28 to 19mm
2.Reduction in the number and size of pulmonary metastases.
3. Consolidation to the tumour is less marked.
4. No significant Mediastinal Lymphadenopathy
5. No hepatic, adrenal or visualised Skeltal metastases
Conclusion: Good response to Tarceva with reduction in size to primary tumour and pulmonary metastases.
Please Note that Jimmy had to have 12 days off the Tarceva 150mg due to severe rash and he reduced the dose. He is now taking 100mg but at one point was only on 75mg. Their is strong evidence to suggest that patients with Rash do better on Tarceva. The more severe the rash the better the patient does. It should be noted however that some patients can do well without bad rash. But an over all percentage of patients with Rash do tend to do better. Jimmy's oncologist told him to stop taking it becasue of the Rash and then went on to say he had no experience of Tarceva. Jimmy refused to come off it thank goodness we did our own research! I would hate to think where we would be now had we not!
We now have the clinical evidence we need for the PCT to fund the drug! We will be
taking this to the next appeal.
Another Update
Jimmy is denied treatment from oncologist working at our local hospital. Reason given we sought advice else where regarding Tarceva Rash...outragous I know! This was then denied. False an misleading information was given to us and the press. According the the hospital we were going to another oncologist for a second opinion which WAS A FALSE INFORMATION. In my opinion they do not like me having a voice and it was made quite clear that they did not like me discussing things on my website.
Jimmy is now been cared for at the NCCT in Newcastle. At last we have found someone not afraid to speak up and fight our corner!
20th September 2007 South Tyneside PCT agrees funding on 3rd appeal five months after starting the campaign! We would like to thank oncologist Andy Hughes for his full support!
South Tyneside PCT will fund for Jimmy
We have won the 3rd appeal, the PCT says it will fund Tarceva for Jimmy! Jimmy will initially be funded for 2 months, he will then be scanned if the drug is still doing its job they will continue to fund. I have always said that we are small fish in a big pond. More and more people are finding themselves in this ludicrous situation having to fight for approved drugs. PCT's hide behind NICE guidelines. I hope this gives hope to others fighting for drugs and encourages them to continue in their fight.
Friday 7th December
CT Scan Results: CT Scan shows Stable Disease, no progression!!! 5 months since last CT scan! We are delighted and looking forward to Christams and 2008! Oh happy Day! Jimmy will continue with Tarceva.
