Is avastin given in the UK for longer than 12 months ?

[LesleyGreengran]

My oncologist has said that I will finish my 3 weekly avastin treatment after a year but I have heard from people in the US who have been on it longer. Does anyone know if that happens here ?

[HopeP]

I have heard of people who have been on Avastin in the US for two and three years but not here.

I was on it for a years course. There was never any question of me being on it for any longer. I now have recurrence and am waiting for treatment to start. Not sure if I will be allowed to go on it again, probably because it is so expensive.

[babsclunn]

I am on avastin and my oncologist also said I would be on it up to twelve months too

Babs

[HumbleD]

I was on Avastin for eighteen months. At the start of treatment I was told I would have Avastin for as long as it worked, this was for recurrent OC. This was written in one of my consultants letters. When it continued to work for longer than twelve months they continued to treat me with it. I think that during my treatment that things changed and I started to realise that it was starting to be given routinely for twelve months. Due to funding which is a complex issue there will be local and regional variation. I think there were at least four different funding streams for Avastin where I am treated.

I heard from my Chemotherapy nurse recently that some people are paying for Avastin at my hospital. They may not have OC as it is used for other cancers but it was disturbing to hear this.

Hope this helps.

Love Wendy x

[Hilsuk]

Dear Lesley ,

Ive read that if given for first line treatment, you are funded for a maximum of 18 treatments ( about 12 m ) through the cancer drug fund in England ( wales, scotland and n ireland have not chosen to invest their health money in the cancer drug fund ) .This is only funded for very high grade stage 3c or higher , or inoperable cancers ( as mine was ) for first line . Im having this and my avastin funding ends this summer . If given 2 nd line for a recurrence then this continues undefinately unless disease progressing , if this happens it is stopped and other treatments tried.

10 m into my treatment I'm currently in remission, last ca125 was 5.5 , and if this continues until avastin funding finishes am seriously considering funding the drug myself for as long as it works . It costs a lot of money , but have just had my pension lump sum payment , so would use that. Also there is no private oncology locally so would have to go out of the area privately . I have never been a private patient and wish this wasnt my only option, but am very greatful to have had the year funded, as this isnt the case for many of those in n ireland, scotland or Wales .

Are you on avastin too ? Its not these easiest of drugs for me, but it , or something is working so far !

Best wishes , Hilary xx

[Whippit in reply to Hilsuk]

When I had a look at the criteria in England for Avastin it is just this. It has occurred to me that the restrictions on who has it in England are something to do with improving the survival chances for those who have the poorest prognosis thereby improving average 5-year survival rates. I'm currently on it having had it alongside 2nd line chemotherapy and have been told I'll continue to have it so long as it's doing me some good.

Like Hilary I've had a few issues with it, the worst being back and joint pain. By chance my blood pressure was too high to have it one session so I had 6 weeks' Avastin holiday and the joint pain went altogether. My oncologist told me that they really don't know what dose is best for any individual patient and he was willing to reduce the dose if the 15 mg per k body weight continued to cause problems but I rather like the idea of the odd Avastin holiday rather than reducing the dose. I had Avastin 9 days ago after the break and so far I really can't complain about joint/back ache.

I'd be of the same opinion as Hilary and would like to continue it as long as possible. An oncologist in Wales told me that whilst Avastin can prolong remission the tumours return more quickly when it finishes. The oncologist was doing her best to dissuade me from it as it would not have been available to me in Wales so perhaps she'd just drawn on a negative aspect of research into Avastin. To my mind a longer remission and swifter relapse still means more quality time overall. However, if the side-effects severely limit my quality of life I'd seriously consider whether to stop taking it.

I've just realised I've gone a bit 'off piste' on the question. I understand it's now been withdrawn in the Netherlands but they weren't as smart as the English NHS who drew up restrictions as to who had it so it became unaffordable to the whole population, and I understand that private health care providers in the US are also putting a limit on the length of time they will fund it. Hope this puts some of the jigsaw pieces in place Lesley.

Annie xx

[annielawrie]

I started Avastin yesterday,along with my last chemo, now on Avastin only, every three weeks.Also told it is for a year.Megx

[chezgravel]

I was on Avastin for two years but have been taken off it now as it appears the cancer is progressing so have to try new chemo also I had a heart scan which showed Left Ventricle damage which can be due to overall long term taxol and possibly the Avastin too. So not good news but I would have stayed on it if I could have done as I had no side affects. I did get the treatment trough my health insurance so I was very lucky.

I think it is an excellent drug and hope you get it for as long as it does you good.

Good Luck

[TornacLiz]

The fact is there is not enough research on Avastin so they are shooting in the dark. Maybe we should be lobbying for more trials. They told me there is no evidence that it works for second line but I think that's because they haven't done the trial rather than because it doesn't. I hope very much that you get as much as you need to keep it at bay. Good luck and best wishes, Liz

[annielawrie]

Will the acities return while on Avastin only,Meg x

[LesleyGreengran]

Thanks for all these replies. I am on it for recurrence of high grade 3c/4 following over 2 years remission. I was treated with carbo/gemzar/avastin with avastin continuing alone after the first 6 cycles of treatment.I didn't get ascites again. I willl have some questions for my oncologist when I next see her.

[Jezza]

Apart from one break of 7 months, I have been on Avastin for nearly 5 years now. I came off it for several months and the cancer returned (bowel cancer with secondary in the liver originally - it returned in the liver) so I went back on it 2 years ago and have stayed on it. I don't think the NHS will fund it for so long, but some private health insurance providers will pay for that, if they are convinced by the oncologist that it makes sense. I am getting a lot of joint stiffness,but as long as it keeps working, c'est la vie.

[LesleyGreengran]

I have checked the Cancer Drug Fund list and it seems that it's a year for first line treatment but for recurrence, until there are serious side-effects or it stops working. That's for ovarian cancer. So thanks for the replies and I'll discuss it with my oncologist when I see her in a couple of weeks.

[vipervictoria]

I have heard of avastin being given for longer than a year, when it's part of treatment for second recurrence and is given until there is sign of progression of disease, which sometimes happens after a year or more. Vx