First hand experience of Avastin?

[colin533]

Hi - My partner has OC (stage 4) and we are going through 2nd Line chemo after a remission of about 9 months last time.

We were originally told we that were getting Avastin this time round; then, due to admin malfunction, that we weren't. When they thought they couldn't get the drug, docs told my partner that Avastin was not that effective and, that the side effects were awful.

Now there's been another about-turn, and we are being offered the drug, The problem is that earlier scare tactics have worked, and my partner is now terrified about the side effects, in addition to the fact that it would have to be taken long term with limited gains.

My feeling is that the potential side affects are far less than the Gem/carbo that she's currently taking, and that the benefits make it worth trying. However, it's not me who has to take it - and so I was wondering whether anyone had any positive first hand experience of Avastin; either in terms of side effects or benefits that could allay her fears?

Thanks, Colin

[EllaRose]

Hi Colin 553

I am on Avastin. Due to finish 6 months treatment in January,I was scared to take it too, I know a year is what they recommend but I only got 6 months approved. I had to trust my onc. and the nurses who said the major side affects are rare. I monitor my blood pressure everyday and it has been fine. I feel OK generally ( I think). The problem I feel is you don't know if the side effects are from the chem, the hysterectomy, etc etc. Be careful what you read is my advice, if you read too much you will scare yourself. I read the basics. I have quite alot of aches and feel stiff in the morning, when I asked my onc. was told this is menopause, when you look on internet, could be avastin ? I now have been diagnosed with diventicular disease, managable with diet, was it caused by avastin or chemo, or surgery, or diet? the internet says any of these? Its a very hard decision,and I don't what will happen when I come off it, how will the cancer respond? maybe a question to ask? I've had two urinary infections, which they say is becoming more common in Avastin patents. I know alot of people fight to go on this drug, so when I got it I felt I was lucky to have the chance. Now my 6 months are up I feel like I want to be off it as I fed up with drugs in my body, and would like to know what I feel like with no chemicals going in. Ask how closely they will monitor you. I have urine/bloods monitored every three weeks. Good luck with your decision - its a tough one - maybe search the tags for avastin, everyone is different. x

[Hidden]

Hi Colin,

There is a post on here Dec 7th by a lady PatsyH who has been on Avastin, that made interesting reading. It's in the Blogs section,

My onc has said I could benefit from the drug but there is no funding in most parts of Wales for it. I too am stage 4 and finished first line chemo in Oct.

It is a difficult decision and one that only your partner can make. On the other hand if she refuses will she always be wondering 'what if '

Good luck and best wishes

Chris

[colin533]

Thanks to both of you for responding. I did see the recent blog post, but was trying to avoid a focus on that one as it featured unpleasant side affects.

My partner, like you Ella, is completely fed up with chemo - the thought of the chemicals in her body, and feeling rubbish for two out of every three weeks are really getting her down. I have a male friend who had Avastin for skin cancer, and he sailed through the treatment with no side effects; I was hoping there might be some similar experiences here...

She has to make a decision in the next couple of weeks about the Avastin, and, like you say, I don't want her to turn it down now (while she's feeling dreadful), only to regret it in six months time.

Colin

[zuzana]

hello,Im on avastin for past 13 months and do not have any side effects. my blood pressure is monitor every 3 weeks and been ok each time and also urine sample taken as well for kidneys function.all been ok so far. only odd bleeding nose but doesnt happen very often. my oncologist thinks avastin slowing down the growth of tumors and giving me more time before another line of chemo. hope u make right descision. good luck and best wishes

zuzi

[ladygooner-uk]

Hi I was on avastin on the ICON 7 trial back in 2010, but had to stop after 10 doses due to neuro side effects which weren't known at that point (don't know if they're known yet) no lasting damage done and got back to normal pretty quickly. My onc said there was not much evidence for long term use, and she would have offered 6 doses only anyway. I am convinced it helped me stay clear for 21/2 years, so I would recommend it- you can always stop it if she feels any side effects are too much.

Best of luck to you both

Sue

[michelle2]

Hi, I'm currently on Avastan and have been since Feb this year. No real side effects apart from gunky nose sometimes. Like Zuzana, I have my blood pressure and urine checked every 3 weeks, but so far so good. Sometimes blood pressure a little on high side, but taking medication for that. Wishing you well for the future and happy Christmas.

[colin533]

Thanks for the responses everyone - I'll pass them on and hopefully it will inform her decision.

Hope all your treatment goes well, and you have a good xmas.

Colin