Avastin

[Louburch]

Hi everyone, haven't posted before , was diagnosed with adnexal/primary peritoneal cancer in January 2014 had three Carboplatin/Paclitaxil then surgery then three more carb/pac and have been on Avastin since September 2014'but have been reading various posts and would like to ask anyone if they know why my oncologist has told me that my Avastin will end in May , but I am reading here that some of you have been having it longer than that ? Am a bit confused!

[Hidden]

HILouburch

I have been on Avastin since Oct 2013 first with Gem and now for the past year on its own. I live in Ireland and it would appear that they keep you on the Avastin regime here until you start getting major reactions to it ie protein in urine and very high blood pressure. I do understand it is more restricitve in Uk depending on where you live and how the onc stages your illness, How are you doing on it,

[Louburch in reply to Hidden]

Hi Suzuki,

Thanks for your reply - I was stage 4 at diagnosis and had Avastin added at my 6th chemo then alone - I am ok on it have minor stuff really - hoarse voice

What I call a permanently 'dirty' nose - very attractive ! Am tired a lot of the time but nothing majorly wrong . When I asked my oncologist why my Avastin will end in May she said that it's not proven in the long term and I will be monitored after that - I am a bit nervous to say the least

[baxbird]

Hiya

I'm on avastin too, much the same time line as yourself and know that I'm heading towards the end of allocated quota.

NICE guidelines for those of us in England ( can't quote for Scotland, Wales or Northern Ireland) is that Avastin can be given for first line treatment for a maximum of 18 cycles.

I do know that patients in Southern Ireland and in the USA have been on it for much longer, until it is no longer effective for them.

Dawn xx

[Louburch in reply to baxbird]

Hi Baxbird thanks for your reply do you feel apprehensive like me or am I just ill informed ? Seems so confusing anyway am seeing my oncologist again on Thursday so will ask for clarification -hopefully.

[baxbird in reply to Louburch]

Hi

Yes I can honestly say that it does worry me. I know I have a 2.5cm shady area in my omentumn and am concerned what will happen to it, when the brakes are removed so to speak. But as there isn't a lot that I can do to change that situation, I will deal with it when the time comes. I had a scan last week and fingers crossed get the results tomorrow.

I'm going to ask my oncologist tomorrow what will happen, maybe we can compare notes?

Dawn

[Louburch]

Hi again Dawn, yes I try not to think too far forward - it's a work in progress !! Be great to

compare notes , thanks so much

Lou

[daisies]

Hi. I have read the other replies and would just like to reassure you on its use. I am on Avastin since October 2012, except for a little break late last year to have some minor nose surgery, and my oncologist does not plan to take me off it in the foreseeable future.

I am in Ireland and I know that oncologists here even differ in their opinion on the drug - and that is just the length of time "EACH"patient remains on it. But thankfully, they all make it available if it is suitable.

I know in parts of UK the drug is limited in its availability and patients even have moved address to get the drug.

If you need reassurance, do ask your Onc why he really doesn't recommend it for 'longterm' use.

But anyway, best of luck with your treatment.

Daisies

[Louburch]

Hi Daises- thanks you I will certainly question the length of my Avastin treatment when I see my oncologist on Thursday .

Appreciate your reply

Lou