How do we find out if Ovarian Cancer is to be trialled and if not why not?

[BusyLizzie]

My question refers to the article below....

yorkshireeveningpost.co.uk/...

[sarah1963]

Dear Lizzie

No idea. It sounds too good to be true doesn't it. Tantalizing/ infuriating I want it NOW!!! I suppose its better to have these kinds of developments than not, even if it doesn't immediately apply to us. Am going to R.M. on Weds - I will ask if it seems appropriate.

Sarah (your twin)

[BusyLizzie in reply to sarah1963]

My little twin. Thank you.

Love Lizze

X

[Chez]

I am on an Icon 6 trial. I had a relapse and was offered this. It's a randomised trial and so you don't know if you have the active drug or not. However I know from the side effects that I had it for some of the time. It's called Cediranib. I'm hoping it will prolong my remission but the results won't be available until about 2014 or so I've been told. I would really like to be in touch with someone else on the trial but haven't found anyone and I was the only one.

[BusyLizzie in reply to Chez]

Hi Chez,

How interesting! Which hospital referred you for the trial, and what have the side effects been? Also interesting they did not mention Ovarian Cancer being trialled.

Love Lizzie

X

[Chris in reply to Chez]

Dear Chez - I have been on the ICON 6 trial since last December after

a relapse. Like you I think I had the drug during chemo as I felt so rough, but not so sure now, although still feel very tired at times. Another lady I know is she she is still on it, she has been on it since January and has been having diarrhoea all through so they have reduced her dose, also I notice when eating she fills up very quickly! Am hoping it will do the trick and prolong this remission as well.

Regards Christine

[Chez]

It's Addenbrookes. The side effects were very painful abdominal pains. They improved when I had a 'drug holiday' and then ended up with a reduced dose which was much more bearable. I did know it was an Ovarian Cancer trial and it was my oncologist who said I was eligible as I had previously responded well to Carboplatin and that was one of the criteria.

[BusyLizzie in reply to Chez]

Ahh ok. Thanks Chez. I think my respose is a bit dubious to the Carboplatin. After chemo #4 my CA125 started going back up, so I assume my cancer is becoming carbolplatin resistant

[sarah1963]

Dear Lizzie

I used our secret weapon yesterday and visited the RM. They have a drugs trial that I can go on and I've got a few days to think it over. I think its worth exhausting the recognised treatments first because there are certainly no guarantees with a trial drug BUT it has given me hope and they are so blooming clever!! I no longer feel that there might be something that can help me but I am being denied it - that peace of mind is worth a lot. If I go ahead (and I think I will) it will mean lots of trips to London. I will keep you posted if you'd be interested- should I do a blog? Tired and a bit shell shocked at the moment.. If it hadn't have been for the support I have had from everyone here I would not have got myself referred to the RM in the first place. THNK YOU.

Sarah

)PS You will probably be given Caelyx next. I found that to be fine and I got a whole year off from treatment after that. So I am much further down the road than you. Yes its a long road.

[BusyLizzie in reply to sarah1963]

My little twin, Sarah - that is great - you and the RM now have a cunning plan! Please, please do blog about what is happening.

Since my CA125 had not fallen to normal by chemo #3 (still at 90), I had my scan a couple of days ago which in itself was stressful. I think I breathed at the wrong place for one of the CT scans PLUS they did it without the dye because they couldn't find a nice enough vein

Now waiting for a call with the results....I have a blood test on Monday so I will know by mid week next week if my CA125 is still on the rise following chemo #4 - at last count I was back up to 110.

Still feeling well, except the odd feeling here and there but trying not to get too paranoid about it all lol.

Love Lizzie

X

[sarah1963]

No I don't like CT scans either. Its the poking about trying to find a vein that is painful and stressful. I had 3 people having 3 goes each try once. You probably went through something similar this week. I am sure they'll have got a good picture - it isn't unusual not having the dye.

Another blood test, another assault on your veins. Remember its not the fault of your veins its those ham fisted staff poking at you. Don't worry about the figures too much. 110 isn't high- a rise from 90 to 110 sounds fairly stable. Rises by the 1,000s is more concerning, anyway its what's going on inside that counts.

I've just fed the chickens and its amazing how much better I feel after 20 mins in the garden.

Good luck with the waiting - its exhausting.

Why little twin by the way? I might be enormous!

Love Sarah

[BusyLizzie in reply to sarah1963]

LOL! The 'little twin' is because I feel protective...I am actually quite small myself, but lost the stomach definition since the op. Small price to pay. Thanks for the re-assurance about the CA125 - I know some women 'present' even with a CA125 of around 40. I agree about getting out and about. I try and do at least 45 minute walk each day to brighten my mood and keep the old muscles and chest in working order.

Love Lizzie

X