This is my first post. I have Stage4 OVCA, presented with a pleural effusion April 2014. Was told inoperable. Started with Carbo/Taxol plus Avastin. After 3 cycles told tumour (17cm on diagnosis) had shrunk sufficiently for de-bulking surgery which was done in Sept 2014. Frontline Carbo/Taxol finished November and Avastin is due to continue until September (18 cycles). After which nothing except monitoring. Having visited Inspire I have come to realise that in the USA many patients continue on Avastin indefinitely until it stops working or side effects become intolerable, because, as i understand it, post Avastin the cancer can recur even more aggressively. I ventured to explore this difference with my oncologist at my last appointment and he was very sniffy, saying that in the UK we do not follow US trials and determine protocols based on UK trials only.
I am, perhaps not surprisingly, rather alarmed about what might happen after Sept. I am doing well at the moment. Last CA125 was 10 and CT scan clear but now fear that it will re-rear its ugly head when the Avastin stops.
So my question is - what should I do? I know the Cancer Drugs Fund will not fund any more frontline Avastin and I will not be eligible for it if I recur as I had it as a frontline treatment. Do I sell my house to fund its' continuance privately. Or am I likely to be OK?
Any advice gratefully received.
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Sailorsue
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Hello. I don't want to get into the Avastin debate. I have done that but it's not worth it to do so here. I can see, however, that you're worried about an aggressive return. I've never seen any evidence that Avastin causes this scenario. What evidence apart from anecdotal have you seen? Wishing you continued good well being. Xx
I havent seen any reports to substantiate that post Avastin everying goes awry. I hope it doesnt. I have been on Avastin since Oct 2013 and April scan showed a shrinkage which the onc was suprised at, he had expected just stable, We are all different and react differently to drugs. This we do know for definite. Your scans and 125s are good so be happy with that at the moment. Live in the now and try not to worry about what might happen because it may never happen hopefully, There are many new drugs or combinations coming on board and we just have to remain positive, there is always hope
Hi I was on Avastin trial nearly 8 years ago. Once Avastin was stopped I then had a further 4 years before a recurrence. The cancer didnt return aggressively and the cancer was treated with carboplatin and gemcitibine.
Hi Katmail that sounds really promising. We are all different in the way we react to treatment and the various drugs we get. I was told yesterday that I had stopped stressing and that is why my last scan was stable with a little reduction. Now that was from a colleagues perspective and she is right. I have changed the way I think about things. I also have changed the way I react. So if something is annoying me I tend to ignore it. So maybe there is something in it who knows?
Hi Suzuki. I think stress does play a part. My first recurrence after Avastin was when my dad was diagnosed with Cancer, my second recurrence was a month after he died (2 years ago this month). I did ask my nurse whether the stress of dad getting ill then dying could be a factor and she agreed it could be, who knows? Anyway Ive been in remission now since August 2013 and doing well so far with a CA125 of less than 3. Im trying to let go of anything that stresses me as much as I can. stay strong xx Kathy
Provided they do check ups with CT scan and CA 125 every 3 months may be wait and see will work . A rise in CA 125 is cause for action but what action ? If cancer re appears then will it be an operable site ? will you consider cyberknife / surgery ?
I am not sure if cyberknife is available here. I do have a remnant of a diseased ovary which cannot be surgically removed because of its position ie near a major blood vessel. But if that opportunity ever arose I would consider it and also the experience of the surgeon doing the job and his successes to date.
You are right . Cyberknife is not available here but it is in Europe Germany , France Turkey esp Turkey where it is far less costly than other countries . I know someone who had treatment in Acibadem Maslek Hospital in Istanbul under Prof Enis Ozyer and was a terminal ovarian cancer case . Her life is saved . It is only 4 hr flight . hospital arranges hotel and pick up and drop off from airport and hotel each day for treatment . Costs are much better than aywhere else and the guy is the best in the world and that includes best american hospitals .
Hello - as you know we all react differently and there is no reason why coming off Avastin will make cancer return more aggressively. There is an "accepted" or "normal" period of times between recurrences, once that starts happening, BUT, each of us is different.
While life itself is a wonderful gift - we can sometimes rely too much on what medics expect to happen.
While the use or provision of Avastin is different in Ireland than UK - I have been on it since the 1st recurrence happened and stayed on it during the 2nd recurrence. Have only recently given it up - but know that next time round carboplatin will be used.
But was never told or advised that a recurrence will be imminent or more aggressive.
So don't even think about selling your house , as the CA readings look good and never mind the sniffy Onc - remind him that you are the patient and not him/her.
I've stayed on avastin for longer but that was after recurrence. My oncologist said I would be stopping after 18 cycles but the guidelines said that was for first line which you have been given it for. Mine was, as I understood, second line, so the guidelines said carry on with it till the cancer progressed or the side effects were too bad. I argued with the docs (different ones as I saw registrars too) at 3 appointments and then they looked it up and said I could continue. But the cancer's creeping back any way and I expect to start more chemo soon - I have a ct scan booked for Friday and my CA125's up to 252 as of 3 weeks ago and I presume has increased since. Avastin is not a wonder drug though I too have read that some women in the US have stayed on it much longer. but who knows if their cancers would have stayed gone anyway ? My oncologist worries about side effects too, but I've had very few, my blood pressure is fine. The decision that NICE and the government have made means that woman are unlikely to get it now for recurrence anyway. I think it's just funded for first line, since April. I was told that after avastin the cancer can come back more rapidly than if it isn't used but not that it's more aggressive. I have been fine now for 15 months since the second treatment and though I am going to start chemo again ina few weeks time I expect to get the same good result and have another year or so clear and well. I hope the same is true for you if it comes back.
Hi to everyone who took the trouble to reply to me and offer help, support, advice.
I am very grateful for the calm common sense offered and just wanted to apologise for not responding sooner but have been away and then with a very temperamental IT connection so internet access has been very tricky. I didn't want anyone to think I was ignoring them or taking their advice for grated...so thanks to you all.
For the record, I still don't know what to do for the best. I would much rather not be tied to the hospital, I have terrible back and shoulder pain, nasal bleeds, bruising etc etc and would love to stop the treatments. On the other hand, if it's keeping the cancer at bay.....
Oh well, I'll keep mulling it over for the time being.
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