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(16 Posts)
CelticRose Sun 18-Aug-13 09:30:41

A humanized monoclonal drug produced from a Chinese hamster to prolong life by sufferers of metastatic cancers. It was only approved in 2004 in America - too late for previous sufferers. This is what happens when you read the author's note in "When the Wind Blows" by James Patterson. His scientific research over 12 years ago with transgenic technologists and scientists enabled him to write the fictional (!) novel for tomorrow's headlines.

CelticRose Sun 18-Aug-13 09:31:27

Watching Sky News this morning, there is a young mother who requires this £5000 a month drug. She cannot afford it and it is not available on the NHS.

Elegran Sun 18-Aug-13 09:36:45

How long does it prolong life?

CelticRose Sun 18-Aug-13 09:41:43

Personally. I don't know. I went on the internet after watching the appeal of this young mother. Each human (possibly insects and animals, too) is different, as is each terminal illness.

CelticRose Sun 18-Aug-13 09:43:32

The drug is known as Avastin in this country,

Elegran Sun 18-Aug-13 09:58:11

I googled it and found that it gains patients on average about 2-4 months extra time, at the cost of some side effects and a lot of money. So it is a delayer, rather than a cure. I suppose if you had unlimited amounts of money, you might want to spend it on a couple of extra months with your family, but I know that after watching my husband through the last weeks of his life, I would not have wanted him kept with me any longer however much was in the bank, nor would he have wanted to stay a couple of months more.

janeainsworth Sun 18-Aug-13 10:07:06

CelticRose Avastin has not been approved by NICE or the Scottish Medicines Consortium, which carries out a similar function in Scotland.
However, it is being used in clinical trials.
It's a difficult one - in a desperate situation, most people would want to try anything. But on the other hand, drugs have to be properly trialled from the point of view of both patient safety and efficacy before they can be approved, for obvious reasons.
I read an article in the Telegraph last week by a 48 year-old consultant who ia still alive 6 years after being diagnosed with asbestos-related melanoma. This is highly unusual. But he was making the point that he had researched the condition on the internet and then volunteered for all the clinical trials going in an effort to manage his condition.
He said that the average patient was not made aware of the option to participate in trials, and he thought that many more people would want to do this if they knew about it.

JessM Sun 18-Aug-13 10:07:22

Not at all sure what point you are trying to make celticrose
This is the NHS info on the drug.
As you can see if you read the link, one of the side effects is sudden and rapid death. Also it is available on the NHS when deemed suitable for the particular patient and cancer.
Monoclonal antibodies are sometimes wonder drugs BUT they are very specific and targeted at particular cell receptors. If someone is being refused the drug it may be because they have a kind of cancer that is not susceptible to its effects, or for many other valid clinical reasons. We are lucky to live in a country where we can get so many expensive treatments on the NHS.

janeainsworth Sun 18-Aug-13 10:07:55

Sorry that should have been mesothelioma, not melanoma.

janeainsworth Sun 18-Aug-13 10:18:07

The article is a bit of a rant, but this is the relevant paragraph:

"I know something about this – as a former NHS consultant, and more recently as a patient. In 2007, at the age of 48, I was diagnosed with a malignant pleural mesothelioma, a form of lung cancer caused by exposure to asbestos. It seems that, while at medical school, I was exposed to asbestos fibres in some part of the hospital (four other doctors and dentists from my era developed the disease; I am the only one surviving). As a result, I have experienced care in the NHS and in the private sector as well as taking part in a trial in the US.
I’m still alive six years on, the average time before death being 12-14 months, but there is nothing I received that couldn’t be offered to any NHS patient if only the system were more flexible. Unfortunately, it isn’t. It does not routinely move patients from unit to unit, it does not routinely tell cancer patients of trials taking place here and overseas, and it discourages accessing other opinions.
I was fortunate because I had insured myself years ago, long before my diagnosis, after being told that private patients had access to some anti-cancer drugs that NHS patients did not. So I was able to use my insurance to be operated on by a surgeon I chose. It was also my decision to go to the US to take part in a trial, but access to the trial was available to anyone if only they had been told about it. The $20,000 trial drugs were free. This, of course, was easy for me – I knew where to look and who to ask. It was clear to me that most NHS patients were simply not told about such trials.
I was also given a drug, at my request because I’d researched it, which may well have delayed my tumour’s growth. Bisphosphonate is used extensively for other reasons, is readily available and not expensive, yet I know of patients who have asked for it on the NHS to treat their mesothelioma, but been refused on the grounds of lack of evidence. Others have been given it when they asked. There is early evidence that it can be effective, and everyone who works in the field knows about this, but it’s not yet officially approved by the National Institute for Health and Care Excellence (Nice)."

JessM Sun 18-Aug-13 11:07:13

The NHS link implies it is approved in certain cases jane but the NICE site is hard to search other than one cancer-type at a time.
Normally when people volunteer for trials they have a 50:50 chance of being on a placebo.
No way of knowing whether this guy has been kept going by drugs or not is there. Every normal distribution curve has tails of some kind.
I can understand why NICE is cautious about approving a drug that could actually shorten survival in some people.
A key phrase in the article is: "early evidence" - there are so many cases when early indications do not pan out once the proper trials have been conducted. The phrase is often used when the evidence is from cells in a dish, or mice, or tiny trials involving just a handful of patients.

CelticRose Sun 18-Aug-13 11:07:56

Jane Your posts most interesting and informative. Thank you.

janeainsworth Sun 18-Aug-13 11:10:55

Agree with you Jess

CelticRose Sun 18-Aug-13 11:15:42

Elegran Sincerely sorry for your sad loss. I can empathise with you. My understanding is that there is never a cure only an extension of life which differs with each individual.

Jendurham Sun 18-Aug-13 23:23:38

I agree with you Elegran. When my husband died from cancer last year, he did not want to be kept alive, and told everyone he had had enough, including the GPs. He was being treated in the Bobby Robson Centre, where there were trials going on for various cancers, and one of our sons said he ought to do the trials if asked. But he told me he had had enough of being a guinea pig, having been diagnosed with cerebellar ataxia five years earlier at a different hospital.
I know that not all cancer treatments work.

gracesmum Sun 18-Aug-13 23:43:55

DH was treated with a monoclonal antibody (Rituximab) when he for the last 3 weeks DD3 has been on a drug trial of one of the "-imabs" for psoriatic arthritis at Barts. I too read Andrew Lawson's article in the Telegraph and thought thank goodness for cancer research as these "new" therapies seem to be paving the way to the possibility of reducing some currently terminal cancers to the status of "conditions" - not curable, but treatable and (hopefully) containable. Such a long way to go though.