Todays Blog: The Controversy of Avastin - My Ovacome

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Todays Blog: The Controversy of Avastin

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Excellent blog Lorraine, a balanced appraisal of Avastin demonstrating it is not suitable for platinum resistant disease or 1st recurrence within 6 mths. Xx

Whippit profile image
Whippit in reply to

I'm not sure whether the criteria for funding is linked to its medical suitability Paul - or just to restrict the number of women who can access it. My oncologist told me in addition to the funding criteria of NCDF there are separate medical reasons why it wouldn't be suitable.

It seems the Cancer Drugs Fund is now under threat. It's such a shame as I thought it was part of a comprehensive strategy to improve England's 5-year cancer survival figures and bring us up to the best of European standards.

I was originally told a year ago that it didn't improve overall survival but there was some research published in October which suggested Avastin given alongside first line could extend life by an average of 10 months. If I can find a reference to the publication I'll post it up here.

best wishes. Annie xxx

ScardyCat40 profile image
ScardyCat40 in reply toWhippit

Yes please Annie as that seems to be a big part of why NICE didn't approve it

Whippit profile image
Whippit in reply toScardyCat40

When I attended the APPG in May 2013 there was a long debate about eligibility. NICE's evaluation of the drug was based on the 15 mg per kilo dose used in the original trials in the US and UK. In the last couple of years a new trial OCEAN 2 has been evaluating the effectiveness of a 7.5 mg per kilo dose. The half dose would have brought the drug within the NICE criteria that cost has to be equal to or less than £30k per additional year of life gained.

The meeting called for NICE to reappraise the drug according to the lower dose which was thought to be just as effective but apparently it contravenes the NICE constitution to re-evaluate a drug once it has passed judgement on it.

One of the speakers at the APPG in January 2014 was praising the effectiveness of PARP inhibitors for women with serous tumours - not just BRCA positive women. It was said these were seen to delay relapse and easier to manage than Avastin as the drugs are in pill format. I got the impression the trials with PARP inhibitors were in just 3 hospitals in the UK. Sharon (Sharonforce) would be able to put me right on this because she is really up-to-date with recent thinking on PARPs.

I'm looking back on my cache to see if I can retrieve the report findings. xxxx love Annie

in reply toWhippit

Here's the report on Avastin ... Which was revealed at the Liverpool Conference ...

firstwordpharma.com/node/11...

It's OS .. Overall survival by 9.4 months ... when added to standard chemo rather than chemo alone. Avastin had shown success in low grade Paul which has been a surprise finding ... and which is almost always resistant to treatment .. medscape.com/viewarticle/80...

T xx

Whippit profile image
Whippit in reply to

Brilliant! I'm so pleased you've found the reference to the longer survival times. My onco said not enough years had elapsed to measure the additional survival time accurately and it was therefore likely to increase as the years pass and it may well achieve an average additional survival of a year which Avastin needs to be authorised by NICE. xxx

ScardyCat40 profile image
ScardyCat40 in reply toWhippit

In some of the American studies they had a few problems measuring OS because once the women came off the trial some were having Avastin I am guessing they mean the control group

Whippit profile image
Whippit in reply toScardyCat40

Yes Professor McLeish told us that many research projects in the US were flawed because the control group managed to get hold of the drug through private health insurance. I wasn't sure when I heard this whether this wasn't friendly rivalry between profs here and the US. It's a good reason for international research awards to be given to the UK xxx

I've just heard from a friend that Avastin is no longer funded in the Netherlands and they have a private/public health insurance with everyone paying 100 Euro per month for their health insurance in addition to their tax. Looks like the shoe is pinching elsewhere as well as the UK. xx

ScardyCat40 profile image
ScardyCat40 in reply toWhippit

If you watch the interview with Tim Perrin in my blog he says that they didn't at the time of that interview have any survival data but were expecting some in 2012.

daisies profile image
daisies

Hi there, Just had a quick read of the article - it is great. I'm a typical case for avastin - recurrence of OC that had spread into abdomen - 18months after finishing treatment; classified as platinum senstive; and responding well to the drug. On Avastin now for 17months following completion of 6 sessions fo chemo.. It was explained to me about the side effects and the usual classic ones - high PB, joint soreness & pain, headaches, constipation, some fatigue, bleeding gums - but still alive. A wiser sage than me once said when asked about being sick - "the alternative is dreadful". Will save the link and pass it on to Ovacare in Ireland. Thanks. Daisies xxx

in reply todaisies

Very interesting analysis of the tolerability of side effects Daisies and very true xx

ScardyCat40 profile image
ScardyCat40

Thanks I wanted to write a balanced article about Avastin and place it in context so other people understand how it works and some of the difficulties getting it

Whippit profile image
Whippit

That's a brilliant blog Lorraine. I had to read in a second time as the first I had assumed it was written by a professional and I was looking for your bit of the blog.

You had some bad luck with side-effects. The only one I can think I might have is joint pain but I have arthritis anyway from an ancient skiing accident and I had joint pain before I started. I'm going to my Cardiff GP to ask about pain relief for that as it doesn't affect me every day.

It's very heartening to read that Avastin is seen to be effective further along the line. My hospital had also told me that.

I think that anyone who can actually say or spell 'Bevacizumab' should be able to have it!!!! lol

xxx Annie

ScardyCat40 profile image
ScardyCat40 in reply toWhippit

It took a bit of research and I agree with your last statement

in reply toWhippit

Yes .. Me too .. .. Very funny Annie .. Xxx

Really great blog Lorraine xx

Dyana profile image
Dyana

Brilliant blog , thank you , dy xx

HumbleD profile image
HumbleD

Brilliant blog, thank you... Wendy x

mummybear59 profile image
mummybear59

Hi Lorraine (or according to my mobile predictive text, lasagne hee hee). I am so pleased you are running. I've been building up to running 4 times a week and I feel great. The Blog is fab! ! I scrolled and read previous editions (including Jan's poem -she's my cousin by the way) and then donated through your just giving page. I will be sponsoring Jan also as she's running the Manchester 10k again too.

Lots of love

MB xxx

ScardyCat40 profile image
ScardyCat40 in reply tomummybear59

Thank you I didn't know she was your cousin that's really bad luck that you both have OC. I wouldn't really call it running yet based on Thursdays run I think its going to take me nearly 2 hrs lol

mummybear59 profile image
mummybear59 in reply toScardyCat40

It doesn't matter how slow, if you're putting one foot in front of the other you are running. :-) Bad luck indeed. My cousin Anne (Jan's sister) also has it! We are all BRCA1. Anne was diagnosed most recently (at stage 1 thankfully) through preventative surgery after testing positive for the gene. All three of us diagnosed within the space of about 16 months! Crazy. We've become much closer because of it though. There always has to be a silver lining. ;-)

Thanks - it's great and so much clearer than most of the info I've read. Has also led to a really interesting discussion on here. xxx

iamstillme profile image
iamstillme

Hi daisies very interesting post on what is the alternative . Someone once said to me I can't possibly continue to have treatment if needed and my reply was exactly the same really don't fancy the alternative xx

Love

Ally xx

Annie.. My ipad woudn't let me reply further up.. I seem to remember the Ovacome post here after the Liverpool Conference .. 9.4 OS not PFS .. Progression free survival... and I got the impression this is likely to increase the longer Avastin's used and more stats collated and publshed. But I woudn't like to say that bit without a reference, so I haven't but had I a reference, I would have if you get what I mean. Xx

ScardyCat40 profile image
ScardyCat40 in reply to

If an expert said something in a conversation to you you can cite it by putting (pers com)

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