After a hysterectomy and chemo I had excellent scan results but my cancer has come back very quickly.

[LizK]

3 months after finishing carboplatin/taxol/avastin chemo my CA125 has started to rise. It had been stable at around 17 and then in 3 weeks jumped to 51. I'm on maintenance chemo having Avastin every 3 weeks but now it looks as though this isn't working. The consultant has referred me for a scan and says I'll probably have to stop taking Avastin and he'll think about when to start second line chemo. He's indicating that it might be better to let the cancer grow for a while. I'm devastated as I have been feeling so well and just can't believe that it might be back. Has anyone else been in this position and if so what happened?

Liz X

[Hidden]

Hi Liz,

I am so sorry you are having all this worry...they do seem to leave them for a while... I was left for well over a year....granted my oncologist didn't realise it was a recurrence as no blood tests no scans..just examining my tummy (it wasn't in my tummy) when he eventually got the message that I had a recurrence he didn't give me much hope.... but here I am in remission.. so please try not to worry easier said than done I know.. Sending you my best wishes love

x G x

[LizK]

Thanks Gwyn. It's such a worry because I've been so well and it's come back so quickly - even the consultant was shocked. How long have you been in remission and what drugs did they use second time round?

[Hidden]

Hi Liz

What a shock for you. Just when you are given hope, it feels like you are back to square one. Your feelings are quite normal, and when your oncologist sorts out 2nd line chemo I'm sure you will once again start to feel more positive. I was diagnosed in 2007, the cancer has come back each year and am now on .6th line chemo so you see there are many different chemos out there still. I like you have felt well all through, so we are lucky as we can enjoy and have good quality of life,

So there is hope, don't worry. We are all here to support you through the dark days and enjoy the good ones,

Love and hugs Suex

[LizK]

Thanks Sue. It does help to know that others are still able to have some quality of life after several lines of chemo. I always knew it would come back, I just wasn't expecting it quite so soon.

Love Liz X

[Helen1]

Hi Liz,

I'm starting my 3rd lot of chemo in a year & a half, I haven't had much of a break but I feel well & luckily cope with chemo relatively ok.

I think some of us may have to accept that the disease is like a chronic disease & that we will need on going treatment.

I'm statisfied that as long as they can keep giving me drugs that the disease can be controlled.

You do get tired of hospital appointments & not being able to plan too much, but I' m back working full time ,got married a month ago ,have a weekend away planned for September & a week in October & will have my treatment as well.

I have the odd low day ( you won't be normal if you didn't) but they waste too much of my presious energy so I try to just get on with living as best as I can.

Take care Liz,you'll get over this next hurdle!

XX

[LizK]

Wow that's incredible! I thought I did a lot but not as much as you!! I asked my consultant if he thought the cancer had come back because I was doing too much but he said activity levels have got nothing to do with it returning so I've booked a weekend in Dublin and a fortnight in Cyprus for September and October respectively

I'm feeling a bit better today although still a bit tearful. I've had tremendous support from family and friends and the fact that I can ask questions on this forum is such a help - I can admit to worries I don't want to burden the family with at this time.

Thanks for taking the time to reply.

Love Liz X

[Coco in reply to LizK]

Hi Liz

Sorry to hear that you have to go back on the old treatment. Exactly the same happened to me. 3 months into my 1st remission my marker started to go up in August last year, so I went on Gemcitiibine and Treosulfan. Again worked well and marker came down. So started on Avastin in April this year, but by June it was creeping back up so back on my third lot of chemo in 2 years. I was devasted that the Avastin hadnt worked, but my oncologist told me it isnt for everyone.!! I am now coming to the end of weekly taxol. Marker right down and feel good. I hope and pray, that this one has done it. And thats what I believe, or this time I get a long long remission.

I wish you all the luck with your treatment. Like so many ladies on this site, it seems the norm doesnt it ? just to be either on treatment or off it! As long as the drugs are available and we respond, it can be controlled and this is the good thing however devasting it can be at times.

Lots of love to you xx

[Jorja]

Hi Liz, It's very hard not to worry when they tell you your tests are rising again, I went into remission for 15mths after the first lot of chemo, CA125 went up again and had second lot of chemo in 2010 finished in June that year, was told cancer did not grow but did not shrink either, have not had any scans since then just my CA 125 tests when I go to see my onc, every 3 months at the moment, she wants to wait for any change in my symptoms before she may have to give me more chemo, I have the odd pains here and there but you can't always put all of these down to the cancer, I feel good and do lots of my normal things and get away with my husband every 3 to 4 weeks, I won't let it rule my way of life, my tests are staying around the 50 to 74 mark and have done for the last 2 years so I know it's hard not to worry but just do what you want or can do and enjoy it, all the ladies on here are very positive and strong so keep in touch and let us know how you go xx Jorja

[LizK]

Thank you all for your supportive and kind words. I've got a scan next Thursday and am seeing my consultant again on Sept 6th to hear what will happen next.

Meanwhile I'm off to Scotland next weekend to cheer on my daughter who is taking part in the British Gas Great North Swim to raise money for Christie Hospital; she's raised £855 so far. She was meant to be swimming in Lake Windermere but it got cancelled due to bad weather so she managed to transfer to the Scottish swim.

I'm in Dublin the folowing weekend at my Godmother's Golden Wedding celebrations so will catch up with a lot of the family. I'm trying to concentrate on these positive and happy events and not dwell on the forthcoming scan and blood tests - but it's hard!

Love to all,

Liz X

[Hidden]

The way to go forward is to stay positive, and have something to look forward to, so you are doing the right thing, trouble is you can't book anything to far in advance in case you have to cancel it. Love an hugs from the family and friends all help as well.

Take each day as it comes And make the most of enjoying life.

Good luck

Love n hugs

Viv

[shen]

hi

just waenxnt u to know im thinkin of u

be strong

sh

[LizK]

Thanks to everyone for your replies. When I read what other people are going through I realise that there are always others who are in a worse situation. Scan tomorrow

Love Liz XXX