Second Line chemo - Avistan

[Wiganw]

Hi Everyone

My second question of the night is about experiances of second line chemo. I have just found out my ct scan shows recurrance of cancer in abdomen after only finishing first line chemo of carboplatin/taxol (but reacted to taxol on second session so just carbo after) that in July. Seeing oncologist on monday but macmillan nurse told me will be more chemo. Also told unlikely to be looking at cure now.

I would like to here peoples experiances particularly what drugs were used and how effective they were. My ca125 only went down to 44 after operation the went up steadaly on carboplatin to 75 at end of chemo in july and was 125 mid dec. I have also heard of avistan but dont know much about it i believe can have with chemo. I life in wales but very near border dont know whether available here.

Looking forward to hearing from everyone as feeling a bit lost as to where to go next.

Thanks in advance

[LouiseOvacome My Ovacome Team]

Hi ,

Can I recommend you call the nurse helpline on 0207 299 6650.

You are on a couple of borders, both geographical and time wise which does mean its a rather complex answer (Avastin available in England, but only in Wales via a really challenging Individual request. NICE about to say no to second line use, and treatment timing issues too) So there are lots of options, but that really requires a conversation to go through.

Sorry not to be of more help, but you have the classic scenario of all maybes and nothing certain, just lots of if you want to do x..........etc.

L x

[nikki9]

I was diagnosed in 2010 couldn't have op due to small tumours on my liver. Was given carboplatin and taxol, after chemo was told disease wasn't there. 6 months later the OC had returned and I was given carboplatin and gem. Went out to spain for two months after treatment but had a feeling the OC had returned again. Now on an 18 weekly treatment of taxol. I was told I couldn't have avastin as I was on my third line chemo. I find the taxol very tiring just hope it gives a bit longer remission. Anyway good luck to you and a big hug nikki x

[Hidden in reply to nikki9]

Weekly taxol isn't easy. I had it as 5th linechemo and it reduced my marker rm 4000 to 380. It did come back again 7months later but marker was still lower than before at 1200.

Good luck with your treatmentxxxxxxxx

[Whippit]

I live in Wales - Cardiff. At my last appointment I asked my consultant what is happening in Wales with Avastin. There is someone living in North Wales on the border who's recently been granted it. My oncologist said it's a complete postcode lottery here and that some people are getting it others aren't. She suggested we get together as patients and make a fuss as this is the best way of getting improvements to the health service.

I'm happy for you to send a personal message so we can take a group approach to this and compare notes across Wales to bring pressure to bear and give us the drugs we need if they're going to be effective.

I have been told that weekly dose-dense Taxol is about as effective as Avastin - but in your case you had an allergic reaction to Taxol so I would assume it wouldn't be a suitable option - only a personal uninformed opinion of course! It might be worth asking here who has had it and which NHS Trust they use. This might well have an impact on where you go for a second opinion.

Much love xxx Annie

[drdu]

I honestly think you should go with what the oncologist advises. They are the experts, and your oncologist knows all the ins and outs of you and your disease. I am a retired GP. I too had recurrence but fortunately responded well to carbo/taxol as I did the first time. If for some reason you want a second opinion you are entitled to that, and you could do that if it will put your mind at rest. I think they all follow the same guidelines though.

Good luck, and thinking of you.

Love,

Eileen xx

[drdu]

Sorry, I now see the correspondence about Avastin in Wales compared to England. It does complicate matters. I think Scotland, where I am, is like Wales, and Avastin will only be given on a one-person application, weighing up the pros and cons, which could go against you.

Good luck.

Eileen xx