like we didn’t know this?

Side effects of chemo…like they needed to do a ‘study’??

we need more funds for research.

 

An excellent video – and it has Hani in it! :)

good news :: Ovarian cancer survival rate has doubled to 41%

See this article or read the article as an image below [yay – no adverts, I deleted them ;) ] – quite good news, on the back of one of my friends dying this week, and another having a living wake this weekend before she dies. I am angry.

Stupid, stupid disease…remember, knowledge is power. KNOW THE SYMPTOMS!!! Get with the bloody programme here women!

It’s Ovarian Cancer Awareness month in the UK – I don’t see much ‘awareness’ actually. Apart from amongst the women who already know about it, because either we had it or we have it! And because we have been through it, and know the ongoing terror of it, we try to spread the word…

But it’s absolutely astounding how closed women are to listening to this. And I know why – I was one of those women. I didn’t want to hear about cancer before I was dx. And actually, I’d LOVE to never hear about it again – never gonna happen…but we do our best eh? One woman’s life saved is worth all the frustration of women like one I spoke to recently…”I don’t need to worry about that. I’ve had kids”. Ok…in kid speak – WHATEVER!! grr

Actually my favourite remark is: “ok, so you had cancer, but you’re fine now, so stop going on about it”. ehehe – you can imagine my little brain working overtime at that moment…as in: ‘where the fuck can I get an AK47?’’

PLEASE see the symptoms link. The ‘bit about persistent pelvic and abdominal pain’ I don’t actually agree with. I never had any pain – but the bloating, feeling full [and thickening of the waist]. Yup…for sure. Easy to ignore and easy to think it’s just age or diet or whatever. Tiredness was my main symptom after the bloating…total and utter exhaustion. I am exhausted now, working 7 days a week – BUT I feel positively frisky compared to how I felt when I had cancer. But I didn’t know.

Be sure to know. The result of ignorance is not pretty.

ovarian cancer test and BEAT

Yesterday was a bit mad – I heard about OvPlex™, the new diagnostic test for ovarian cancer from Simon. We were discussing his ride and the logos to go on his bike. They are one of his sponsors. After he left I decided to see if it was in the news. Er – no. Not anything sensible anyway. You'd think it would be wouldn't you?

Then I found their web site. Yay me. I read it, thought it an excellent piece of news that needed to be spread, and decided that it was a bit technical to reinterpret. Therefore I copied all their text into a blog post [with references! ooooh], then tweeted it. Yes, I am actually starting to comprehend Twitter at LAST!

Oops…

Ten minutes later poor Simon rang me and asked me to please call OvPlex as they needed to speak to me about the blog post, and I needed to remove it. I had visions of being locked away for plagiarism, and deleted everything at lightning speed! Blog, Tweet, Facebook blog… [AAARGH!] I also had visions of Simon wondering if he ought to beat me about the head with a cycle pump…anyway…

Rang them post haste, and it turns out their site only went 'live' yesterday, and basically Google search engines would find me before them, as I'd filched their article almost word for word. Uff! I felt terrible, but luckily for me the chap was most understanding, very kind and everything turned out ok. He quite understood how excited I was about such a brilliant test. Actually, we had a nice chat. So!!

If you would like to know about the new diagnostic test for ovarian cancer, please go HERE and read the article. :o) You can order it on-line for £275.00. Seems a lot of money doesn't it? But I'd have paid it if it would have helped me avoid surgery, chemotherapy and sundry other crap.

And, NO, I'm NOT tweeting this!! I am astounded at how fast info travels mind you – it's amazing.

Today I am mainly getting excited about Ovacome's Awareness Launch in March. Ovacome will gain maximum exposure in the national press with a major launch called BEAT which will put ovarian cancer firmly on the radar of women and their GPs. Yippee! Watch this space…

when NICE is NOT nice

This morning I had fabulous news. My friend Nat, who is still battling ovarian cancer, has had the best news today. Thanks to Avastin, her tumours are FINALLY shrinking, and her CA 125 is the lowest it has been since she started her head to head with this hideous disease. Yes, she has a few side effects, but they are only due to the treatment itself and will stop when the treatment ends.

I think this will be the best Thanksgiving Nat has ever had! It certainly made my day. Please see Nat's blog here. It makes for interesting reading.

Having seen this result, and knowing what a difference this drug has made to my friend, it astounds me that we [and I mean ANY of us] can actually put a price on someone's life and deny them a chance of survival. How nauseating is that? And what does it say about society now? I am a bit startled by this article. And I notice they only say that it can be used for bowel cancer. No mention of the effects on ovarian cancer.

Then again, I think it's only the UK that actually HAS an almost free state healthcare service? I suppose we can't have everything. In the States they have cutting edge technology with regard to drugs and research, here we have to wait. But in the US they have to pay or die, here we get everything free.

So sad we can't have both. Cutting edge technology AND free medical healthcare for everyone. But then if it was a perfect world, no-one would have cancer in the first place would they?

New hope over bowel cancer drug  (UKPA) – 14 hours ago

"Pharmaceutical giant Roche is hoping to strike a deal with a health watchdog after experts rejected a bowel cancer drug for use on the NHS.

Avastin (bevacizumab), which costs about £1,800 a month, has been shown to shrink tumours in 78% of patients when it is added to chemotherapy drugs capecitabine and oxaliplatin. This could make them eligible for surgery although the drug is not a cure.

Avastin is suitable for patients with advanced (metastatic) bowel cancer, where the disease has spread around the body, and could potentially extend the lives of some 6,000 people a year in the UK.

Roche offered a patient access scheme to reduce the cost of Avastin, which would have seen a cap on its cost at 12 months and free oxaliplatin. Roche said this would have reduced the price to £36,000 per quality adjusted life year (QALY), above the £30,000 threshold used by the National Institute for Health and Clinical Excellence (Nice) which rejected the drug in a draft recommendation.

In a statement, Roche said it was "confident" it could continue to work with Nice to make Avastin available.

"The UK is now virtually the only country in the developed world not to provide Avastin for bowel cancer through the state healthcare service," the statement said.

John Melville, general manager at Roche UK, said: "We are in an unfortunate passport prescribing situation with Avastin whereby patients in Australia, Canada and most of Europe gain access, but patients in the UK, Latvia and Poland don't."

In clinical trials, adding Avastin to oxaliplatin-based chemotherapy typically increased survival to 21.3 months from 19.9 months with chemotherapy."

TWO-A-DAY PILL STOPS CANCER [yay! read me]

Wednesday September 16,2009

this article is very interesting – the part that makes me chuckle is that Victoria Fletcher constantly refers to cancer as 'the disease'…

thanks Aj for pointing it out to me. As always, the Supportive and Genius Husband :o)

UK NEWS

Developed to combat breast cancer, the drug could be used to treat other forms of the disease.

By Victoria Fletcher

A TWICE-a-day pill designed to fight breast cancer could offer hope to thousands of patients with other forms of the disease, it was announced yesterday.

In a British breakthrough, scientists have shown the drug disables cancers in the womb, prostate, colon and skin that are triggered by genetic mutations.

The discovery, which was immediately hailed as "excellent" and "very convincing" by experts, is particularly good news because the drug has few side-effects. And that means clinical trials could start within months.
Professor Alan Ashworth, director of the Breakthrough Breast Cancer Research Centre at the Institute of Cancer Research, who led the trial, said: "Our findings are very exciting. As far as a cure for cancer goes, I think this takes us closer."
Many drugs to treat cancer work by intercepting the signals that tell tumours to grow.
But the drug at the centre of this study, called olaparib, works by making cancer cells more vulnerable, attacking their Achilles heel and breaking down their defences.

Many drugs to treat cancer work by intercepting the signals that tell tumours to grow.

Earlier this year there was great enthusiasm when the same British team revealed it could kill breast ­cancer cells in women whose tumours were caused by mutations in their BRCA genes. Around one in 20 cases of breast cancer is attributed to these genes.
The trial, published in the New England Journal of Medicine, showed that tumours stopped growing or shrank in around half of volunteers, all of whom had been told their ­cancer was incurable.
Now, in a separate study, the team has found olaparib may also work in people whose ­cancers are caused by a ­mutation in a different gene, called PTEN.

A far larger number of cancer victims have this genetic mutation so this latest discovery could have implications for the treatment of thousands or even tens of thousands.

Around a third of all breast and colorectal cancers are caused by PTEN mutations, and up to 80 per cent of ­cancers of the uterus. Prostate and skin cancer can also be ­triggered by it.
In tests in the lab, the drug was shown to disable the ­protein wall, called PARP, that cancer cells use to protect their DNA.
Once this protein is inhibited, the cancer cells’ DNA is exposed and the ­cancer cell dies.

However, the drug does not damage healthy cells that manage to protect their DNA with more than a flimsy protein wall. This makes the treatment of great interest to both researchers and doctors.
The results, published in the journal EMBO Molecular Medicine, are so exciting that the team are now setting up a trial on humans to see if what works on cells in the lab will also be effective on patients.
Professor Karol Sikora, a consultant oncologist in ­London and also Director of CancerPartnersUK, said: "This is an excellent paper which shows great promise, potentially extending the use of olaparib in a logical way to a range of PTEN mutant cancers. Ashworth’s team are an excellent group and the study carried out on cancer cells grown in the laboratory is very convincing."

Results of tests of olaparib on humans with PTEN mutations are not expected for two years and it is not yet clear when the drug will be widely available. It is not yet available either on the NHS or privately because it is still waiting to be licensed.

Dr Chris Lord, who led the research with Professor Ashworth said: “This new class of drugs could potentially make a big difference for many thousands of cancer patients, including some with very ­limited treatment options. It shows Breakthrough Breast Cancer’s focus on turning lab research into patient benefit as quickly as possible is having an impact.”

The news comes as a separate study, led by Keele University, discovered two genes which control whether a cell lives or dies and could halve the chance of survival for breast cancer patients.
They have established that patients with a low incidence of the tumour suppressor gene known as Fau, or a lot of the cancer-causing gene MELK, are at risk.

Breast cancer is the most common cancer in women in the developed world and is the second leading cause of death after lung cancer.
Despite recent advances, the development of therapy-resistant breast cancer cells is a major cause of death.

wanting to be normal again

Monday 14th September

It's really weird. This time last year, I was like 'GI Jane' – hair 2mm SHORT and feeling completely and utterly crap / ugly / lucky / miserable / exhilarated / deranged / happy / sad / tearful / depressed / frightened – bring it on, I felt it. All at once. Barely able to make it up the hills of Porto. Planning my next step, seeing it in my mind and wondering if I'd make it. Just the next street sign…just the next hill. Counting my footsteps, and breathing each one. Hurting and silently screaming that I did NOT want to do this…but forcing myself anyway.

This is me, in Porto, last September. We had a fabulous holiday for a week. It was incredible – Aj arranged an amazing apartment, and my friends were there for me – we had a brilliant week. The sun shone every day. It seems a lifetime away now. I can't BELIEVE I looked like that! I can't really understand what happened…it seems like a dream now. Or maybe a nightmare? I can't believe I made it up all those steps we had to get to the apart. No lift there! I can't believe that this was actually me; this weak and frail person. This tottering 'thing'. I am amazed at how much I complained!! and I am amazed at how much I achieved. But hindsight is always crystal clear isn't it?

Bloated face from the steroids, loads of extra weight due to the same. A great big scar up the middle of my hitherto fore pristine belly. Oh I bitched and whined about those things…but to be fair, those things saved my life.

This is me now – I feel so lucky!!! Look! Hair! Lots of it…

It's easy to forget that this time we have is an 'extra'. If you will. We are all struggling to stay alive. People [like I used to be] without cancer or the threat of it. People with their horrible diseases [yeah, lets not forget – there are many horrid things you can get, just as bad as cancer!] and people who just have a cold, or feel tired, and think it's the End Of The World. To them, perhaps it is. I would be happy for anyone that this should be the worst that could happen to them. I wish it were the worst that had happened to me.

But we are in 'extra time' – a few years back, we would have been dead. But we aren't. Thanks to modern technology, new insight and incredible scientific breakthroughs, we are alive. I wonder what is in the heads of those scientists? Is it that they want to save us? Or is it that they want to be famous for saving us? Do I care? No. I don't. Bring on the boffins – they have extended my life so far. I hope they will carry on doing just that. I don't want to die. No, not yet, not until I am about 95!

I want to be able to complain about 'The Youth Of Today'...I want to be able to bitch about my pension…I want to see Aj with hardly any hair ;o)

in short – I want the chance to get old. I want the chance to feel normal again. For a long time?

interesting article

thanks Mary. see here for a video.

Flawed gene link to ovary cancer

Scientists have identified a genetic flaw which can increase the risk of ovarian cancer.

Over 4,000 UK women die from ovarian cancer each year. The international team of researchers, led by UK scientists, looked at the DNA of 17,000 women for their study.

In Nature Genetics, they said carrying two copies of the flaw increased the chance of cancer by 40% - around 15% of UK women have both copies.

Cancer experts said it was an important discovery which could help manage women who were at increased risk.

"There is now a genuine hope that as we find more genetic variants, we can start to identify the women at greatest risk"

Dr Simon Gayther, researcher

OVARIAN CANCER

It is the fifth most common cancer in UK women, affecting 6,800 women per year. Five out of every 100 cancers diagnosed in women are ovarian. A family history of the cancer, breast cancer and being infertile or having fertility treatment, are all known to increase risk.

Ovarian cancer is the fifth most common cancer in women in the UK with around 6,800 new cases diagnosed each year in the UK. This leads to around 4,300 deaths each year.

The BRCA1 and BRCA2 genes, which cause breast cancer are already known to significantly increase the risk of ovarian cancer - but faults in these genes are rare and probably cause fewer than 5% of cases so scientists have been looking for other genetic faults which could help explain inherited risk.

The researchers, led by scientists based at the Cancer Research UK Genetic Epidemiology Unit at the University of Cambridge and University College London (UCL), searched through the genomes of 1,810 women with ovarian cancer and 2,535 women without the disease from across the UK.

They analysed 2.5m variations in the genetic code and found genetic "letters" - called single nucleotide polymorphisms (SNPs) - which when spelt slightly differently increase ovarian cancer risk in some women. It is the first time scientists have found a SNP linked uniquely to risk of ovarian cancer.

Everyone has 23 pairs of chromosomes, with one of each pair inherited from each parent. This SNP is located on chromosome nine.

The risk of developing ovarian cancer for women carrying the variation on both chromosomes is 14 in 1,000, compared with 10 in 1,000 for those who do not. Carrying one flawed variant increases the risk to 12 in 1,000.

Scientists confirmed their finding after working with the international Ovarian Cancer Association Consortium and examining more than 7,000 more women with ovarian cancer and 10,000 women without disease.

Dr Simon Gayther from UCL, who worked on the study, said: "There is now a genuine hope that as we find more genetic variants, we can start to identify the women at greatest risk and this could help doctors to diagnose the disease earlier when treatment has a better chance of being successful."

Dr Andrew Berchuck, head of the international Ovarian Cancer Association Consortium steering committee, said: "This study confirms that ovarian cancer risk is partly determined by genetic variants present in a large number of women.

"This initial discovery and others that will likely follow in the future lay the groundwork for individualised early detection and prevention approaches to reduce deaths from ovarian cancer."

Dr Lesley Walker, director of cancer information at Cancer Research UK, added: "This is an important discovery.

"This research paves the way for scientists to discover even more genes linked to ovarian cancer and could lead to new approaches to treat or prevent the disease. Crucially it will help doctors manage women who are at increased risk."