Why do they stop Avastin?

[Katsmum]

Hi, I am currently about to have session 16 Avastin treatment following the usual carboplatin/ paclitaxol regime which included debulking surgery half way through. My CA125 has remained normal so presumably the Avastin is working so why will it be stopped after 18 treatments? Will this not just allow the tumours to start growing again? Some people seem to be on it longer and the cancer research website says people are on it as long as it is effective. This is really worrying me but my oncologist says I should be positive about completing the treatment!! I know I am stage 4 and not curable but i really want to try anything to prolong my life and stopping treatment seems so negative. Can anyone help to explain please?

[fluffycloud]

Hi Katsmum I was on Avastin for about 24 sessions which was stopped owing to protein in my urine which apparently can cause the kidneys to fail. I also am stage 4 and at present on watch and wait. This is just my experience no doubt other ladies will be in touch. Take care Pam x

[Lyndy]

I had a chat with my onc about this...in his view Avastin gets less effective the more you have. I got the impression that he would have stopped at 12 but I pushed to get 18.

Of course the real elephant in the room is that it costs nearly 4K per infusion!!

[Katsmum in reply to Lyndy]

Hi Pam and Lyndy - yes I know it's expensive but I am ok on it so far and not understanding why some people can stay on it whilst it is effective but my onc says 18 sessions is the protocol and there is no evidence to support being on it for longer is better. I am finding the information confusing and wondering if I should push for more. There hasn't been anyention of it becoming less effective though I am well aware of the capability of cancer being able to overcome or resist the many drugs available.

Take care

Katsmum x

[Annr5h in reply to Lyndy]

Hi Lyndy, may I ask how you know that the treatment cost 4K per infusion. It just sounds a lot of money . Just wondered that's all xx

[Hidden]

Hi there and welcome to the site. My Avastin was stopped earlier because I was stable and they felt there was no point in poisoning me with more when I didnt need it, This way if I need it again I can have it or so I am led to believe by my team. Long term use can cause side effects so now they feel its better to stop short and have it again for later,

[couls]

Hi, I'm having to pay for it. This is my first recurrence , I was never offered it after first line treatment. When I asked why I was told I never met the criteria. I did get 20 months remission . It is so expensive for the normal working person I don't know how many I will be able to pay for but if I can manage 18 I will be happy. It is costing me £3500.00 every 3 weeks. My family are fund raising and I will have to sell my house. The cancer drug fund stopped funding avastin for any recurrences. But so many people on here seem to be on it after first line treatment , has the criteria altered in the last two years since I was diagnosed ? Why are we not all getting the same treatment ? On a good note my ca125 did remain at 7 for 20 months with no other treatment. I just wonder why the government think people are worth giving it to now on first line , but the people with recurrence are not . Sorry if I'm going on, it just makes me so angry we are all treated differently.

[Sherrym in reply to couls]

Who understands it all? My insurance covered 5 Avastin during chemo then nothing.

I have stuck with my COC protocol since Day 1, check up today after 1 year. Feel great.

My Geneticist told me as a BRCA 1 to save my money for PARPS.

My house is also on the market

Much much luck & good health over Xmas to All u fellow souls. X.

[Yoshbosh in reply to couls]

Hi Couls,

I also haven't qualified for Avastin as a maintenance treatment after first line chemo as I was 'optimally debulked' (that expression makes me want to throw up!) and there wasn't any visible disease after surgery, just microscopic granularity which was (hopefully) mopped up by the remaining rounds of chemo. Like you, I now wouldn't qualify for it in the event of a recurrence and I don't understand it...well, I do understand, but when it's your life you are fighting for, it feels a little unfair.

However, dwelling on that fact won't change it for me, so I'm focussing of diet, wellbeing and the protocol of drugs offered by the Care Oncology Clinic and hoping for the best! I try to live life as a 'glass half full' person and I'm determined to stay NED 😊

Yosh x

[couls in reply to Yoshbosh]

Hi, thanks for replying . That is probably why I was never offered it. Must admit I can't believe I'm paying to feel like a 90 year old. Lol. I'm suffering with joint and bone pain which is quite bad in a morning especially the pain in my feet. But I do get going and as I'm not the sort who sits about as soon as anyone invites me out I'm off. Lol. You have to remain positive or there is no point in going through the terrible treatment. Have a lovely Christmas and a healthy new year to us all. X

[LesleyGreengran in reply to couls]

Hello. Yes the criteria did alter. I had it for recurrence but it stopped working after a while. I argued with the oncologist to stay on it longer than she'd intended but it only worked for a few months after that.

[Tillymint61 in reply to couls]

There is a catalogue of data research etc for it's use and effectiveness in 1st line treatment but not so much around it with reaccurance treatment. I am currently on a trial for looking at the use of Avastin weekly for 18 treatments rather than every 3rd week. I was randomised into the control group so I am following the Standard of Care treatment.

[SusanAM]

Hi

I was on avastin as part of clinical trial ICON8B. The protocol on that trial is for 18. I was told that the reason for 18 was that it carried me past the first high risk for re occurance. I only did 16 because of very painful peripheral neuropathy.

Susan

[coalole in reply to SusanAM]

I'm on that trial too, due to have number 11 of 18 on Friday.

I wish I could tell the people who devise the questionnaire to change it once chemo stops. It's really irritating to be asked if you've lost any hair every time while you're happily watching it regrow.

[27-359]

Hi I am on Avastin and was told that it is only available if an area in excess of 1cm is still present after treatment. You are then offered 18 Avastin treatments, but this is only a one-off treatment, and will not be available to me again. This is because of the high cost.

Hope this helps. Jenny

[27-359]

Hi again. Just wanted to add, that people who were put on maintenance Avastin before the more recent NICE guidelines came in, can continue with the protocol. That's why some of us are on Avastin continuously, and some only get offered 18 sessions.

Jenny

[Katsmum]

Hi all and thanks for all your replies, they have really helped me make some sense re changing protocols. It's still a scary prospect being on watch and wait but I guess I will just have to keep being positive. My daughter and I have done so much this year in spite of the chemo - Iceland and the Northern Lights, Vegas for her birthday, the Harry Potter exhibition and a flight in a microlight yet to come!! So my best wishes to you lovely people, do stuff now and don't be held back by this horrible illness!

Have the best Christmas!!

[Wiganw in reply to Katsmum]

May be worth a phone call to target ovarian cancer as they can explain, but also tell you what you should be being offered or ovacome can do the same. You just need to check you are not eligible to carry on as once stopped it is very difficult to get back on it. Just make sure its not the hospital trying to cut costs. Sharon x

[Iwillbeatit]

18 is maximum no from English cancer drug fund due to cost. I have been sixth months stable since finishing it.