http://www.bbc.co.uk/blogs/theoneshow/consumer/2008/11/18/cancer-time-to-change-our-appr.html en-gb 30 Fri 08 Jan 2010 16:53:09 GMT+1 A feed of user comments from the page found at http://www.bbc.co.uk/blogs/theoneshow/consumer/2008/11/18/cancer-time-to-change-our-appr.html http://www.bbc.co.uk/blogs/theoneshow/consumer/2008/11/18/cancer-time-to-change-our-appr.html?page=17#comment6 In February 2006 I was rushed into the Oxford Hospital and within two hours it was confirmed I had bowel cancer which was blocking my bowel. After a minor op I had major surgery and walked out the hospital 11 days afterward the operation.In April 2006 I started treatment after I was accepted on a phase 3 clinical trial. The drugs had been used singularly, previously, on terminally ill patients or patients with returning cancer. This was a combination of two, post operative, to see if they would kill any rogue cells that might still be in my body, even though the tumour was taken out as a whole.I had a year's treatment in three-week cycles. One drug was given intraveneously at the start of the three weeks and the other drug, five large capsules, twice a day, for two weeks, then a rest week.I had some hair loss, but the main side effect was the numbness, redness and skin loss on my hands and feet.I did it to help other cancer patients and an extra insurance for myself to see my family grow up. Now, nearly a 1,000 days later I have walked Snowdon and Scaefell, plus Sydney Harbour Bridge, and been on safari. Everyday has been a bonus, which I live to the best.My details were fed into the data for the clinical test and I was considered a suitable patient. Some patients are not, for various reasons, but still have the tried and tested treatment. Previously, relatives have died from bowel cancer, perhaps now it will give hope to relatives and other patients. Wed 19 Nov 2008 09:34:17 GMT+1 http://www.bbc.co.uk/blogs/theoneshow/consumer/2008/11/18/cancer-time-to-change-our-appr.html?page=14#comment5 You could try suing your local PCT to pay for drug treatment not available on the NHS, that is what we did. The PCT were pathetic in their response and procrastinated despite being given deadlines by our solicitor. In the end we withdrew our action as the drugs we were fighting for (and paid for the first course out of our own pocket) made my husband very ill - intollerably so. I do believe however that that one final (self funded) treatment bought him a few extra months. We did write to our MP & kept him in the legal loop, he made the usual soothing noises but we heard no more. Bentleys Solicitors in Manchester may be able to put people in touch with 'Doctors for Reform' who have a fighting fund to help cancer sufferers obtain the legal backing to bring cases of this type. Tue 18 Nov 2008 22:16:57 GMT+1 http://www.bbc.co.uk/blogs/theoneshow/consumer/2008/11/18/cancer-time-to-change-our-appr.html?page=11#comment4 My wife who is just 50 years of age was diagnosed with secondary cancer of the liver in October 2007. After the initial shock we thought well she will be able to receive chemotherapy which will give her a fighting chance,.However the worst was yet to come. The primary cancer site could not be found in spite of scans and biopsy. She was given four months of ecf chemotherapy which was an all over body treatment . Had the primary site have been found they would have treated both sites with the primary chemotherapy. It is estimated that their are 10.000 unknown primary cancers in the UK alone. Yet people that I have spoken to over the pasy year have never heard of cancer of the unknown primary. They are unable to understand why the primary cant be found. Cancer of the unknown primary is known as the orphen cancer. Cancer is an evil that not only claim life, but it also breaks the hearts of loved ones. After coming off her treatment in April 08 my wife then had a scan. The results were quite posotive as the cancer had reduced by three centimeters. As for having more ecf treatment we were told that any more would damage her heart. In August of this year the pain started again and a scan revealled the cancer had started to grow again. She was given just two to three months. I asked the oncologist if she could find us a trial. She came back to me and said that their were no trials available that would suit my wife. However I found one myself at Guys in London. My wife and I went to see the consultant oncologist at guys and we were told that she ticked all thr right boxes to go onto the trial. This news gave the whole family a great lift. However our joy and hope were short lived. While undergoing tests prior to the trials starting it was found that her bloods were too high. While ever we have politicians living with their heads in the clouds far away from the reality that normal people and their family have to face through cancer and other life threatening illness we will continue to have our heart broken seeing loved ones taken away from us all because of a shortage of money. After all tax payers must pay their taxes so that the government can use the money for much more important things like bailing out the banks. I urge you all to write to your mp and tell them that refusing to endorse and pay for much needed treatment is no longer acceptable. Tue 18 Nov 2008 21:53:29 GMT+1 http://www.bbc.co.uk/blogs/theoneshow/consumer/2008/11/18/cancer-time-to-change-our-appr.html?page=8#comment3 "Most pharmaceutical products only kill the top layer, but it is said that bicarbonate of soda kills all of the cancer."Good luck with that if you ever get cancer. Tue 18 Nov 2008 19:37:07 GMT+1 http://www.bbc.co.uk/blogs/theoneshow/consumer/2008/11/18/cancer-time-to-change-our-appr.html?page=5#comment2 Justin. Have you heard about 'cancer is a fungus' with the cure using bicarbonate of soda? Most pharmaceutical products only kill the top layer, but it is said that bicarbonate of soda kills all of the cancer. Tue 18 Nov 2008 19:24:28 GMT+1 http://www.bbc.co.uk/blogs/theoneshow/consumer/2008/11/18/cancer-time-to-change-our-appr.html?page=2#comment1 I think what Justin said about half the people that get onto a trial having the standard, not the experimental, treatment, applies to Phase 3 trials, which are the last stage before a drug is licenced. The trials on the programme are Phase 1, and different rules apply. Fot instance, all people on the pancreas trial featured get the experimental drug, but in different doses. Tue 18 Nov 2008 19:23:15 GMT+1 http://www.bbc.co.uk/blogs/theoneshow/consumer/2008/11/18/cancer-time-to-change-our-appr.html?page=0#comment0 I am very concerned about the glib tone of this piece, the interviewer asked (or told) the cancer sufferer he must be sleeping better knowing he was on a drugs trial. The man is terminally ill, like my husband who died recently, he is taking the only option open to him to live a little longer and is probably sleeping very poorly and still very very ill.Making films like this is all well and good but I wonder whether it gives false hope to cancer sufferers or those yet to be affected. Tue 18 Nov 2008 19:18:24 GMT+1