Tumour marker is back in 3000s been told peritoneal lining now. Put on palliative care with expectancy of a year if I'm lucky but due to bowel obstruction that I cleared and am now on a low residue diet and steroids...can be months if bowels play up again. Feel like I'm hanging in a tree waiting for branch to snap! How are we supposed to cope with this stuff...my minds fried been told to put all affairs in order etc etc...anyone else going thru this or advice on how to bot go insane with fear and worry? My poor kids are in turmoil not knowing if i will be sick tomorrow and go down hill fast or prove them wrong cos I feel fine....what a mess....hate this evil disease. Please does anybody have any hope stories? X
So it's back in a bad way!: Tumour marker is back... - My Ovacome
So it's back in a bad way!
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Angie-69
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Are you on any treatment?
I went cemetery shopping, sorted my will, organised everything so it’s straight in my mind so I could free up play time.
I’ve got fed up with the doom n gloom oncology meetings. Today is for living and I’m trying to enjoy each bit of it. It’s easy to get caught up in time frames etc but recently someone I know went to bed they didn’t wake up the next day. They weren’t ill they didn’t even have a cold. They were in their early 40’s with teens at home. Life is about now because we’re not guaranteed anything
So try not to think about the pessimistic dates. I was told I wouldn’t see last Christmas then April then June. I got very caught up in it waiting to see if I was going to pop my clogs. There’s been compromises along the way. Like a wheelchair to go out and more time in bed than I would like but it’s not going to define me.
Cancer plays it’s own tune it’s whether you dance with it or in spite of it. We’re right here to support you. Stay positive
LA xx
Did you follow up on second opinions at a big cancer centre, Angie? I know people who have been told no more treatment available, and who have gone for second opinions and been treated with a reasonable degree of success. Not necessarily NED again, but tumours knocked back with a period of stability and feeling very well afterwards for several months before needing to consider their next move.
The big hospitals also have better access to, and knowledge of, clinical trials. Have a look at the current trials available and see if you fit the bill/are interested, then ask to be referred to it (assuming you would want to - it’s not for everyone).
Vicki x
Ty for replying hunny, yea it's the Marsden I'm under...dr Banarjee . I am deffo gonna push for more opinions and trials though . Just so lost at the moment , went in just to see if my bloods were good enough for next caelyx instead got told all this....mind fried xx
Oh that sucks. I didn't realise you were already at the Marsden. Would a second opinion from the Christie in Manchester be too far? Or one of the other London hospitals? I think someone mentioned another one in your other post. Not surprised your mind is in turmoil 
I have also started Caelyx infusions and have only had one to date with my 2nd coming up this week. I was told it had a 15% chance of working so not much of a difference to what you have been told. I would question if they offered you Avastin with the Caelyx as the combination improves outcomes. I would also ask if they offered you Taxol? Clinical trails have shown that Taxol outperforms Caelyx (both with and without Avastin). I asked my oncologist why she prescribed Caelyx rather than Taxol since Taxol indicated better results and she responded that Caelyx is harder to take so she is giving that one to me first. There is also a reason why she is not combining it with Avastin at the moment but that is another story. As far as clinical trials are concerned yes, we are all guinea pigs. In fact I don't see that as any different to the Caelyx with a 10/15% chance of effectiveness. There are a lot of women who have come out of this with no recurrences and many others who have outlived their predictions. The medical community (academics, physicians, pharma) don't have a clue as to why and they have started to look at exceptional responders in the United States in an attempt at figuring it out. I think it is wonderful that you feel fine. That is very important and a really good reason to keep trying since new things are becoming available all the time. I would push for clinical trials and ask for specific ones. Have you had your tumour tested? That may help you with choices around clinical trials. It seems that combinations of drugs are better than single agents but often carry more toxicity. I also think that Phase 2 trials are ones I would prefer as even though Phase 3 trials are further along there is a chance you will end up with standard of care (which may be alright depending on what it is).
Hi Angie. I’m so sorry you heard that news today - I cannot imagine how you and your children are feeling right now.
I’ve posted before that Mum was referred to the Drug Development Unit at Sutton Marsden. She was originally under Dr Bannerjee in Chelsea but she was keen for Mum to start a trial for her low grade. Yes, these things are trial and error in some ways, but they are also approved to go to trial for a reason. Please push for a trial. Mums tumours have shrunk by 51%. On a phase 1 trial. You just never know. Sometimes things are worth just exploring at least.
Thinking of you xx
Bless u hun i appreciate your reply. I agree always worth trying xx
Could you tell us what the phase 1 trial is and/or the trial drug? That's fantastic news that your mom's tumours have shrunk over 50 per cent. Thank you.
Its the Frame Study at the Royal Marsden. No idea what the drugs are - we just know they are a MEK and FAK inhibitor. Hope that helps xx
Thanks and good luck! It sounds like a winner for you!
Hi Angie - I have just been diagnosed same as you with danger of bowel obstruction - on steroids, low residue, Movicol. Local hospital suggested 'keeping me comfortable' but I realised I wasn't happy just with palliative, so I have consulted at the Christie again (see my profile) and have an option on the Rotterdam regimen if I want it. I think I will go ahead as I need to be proactive, not just sit around sipping Movicol hoping for the best... Very good luck to you. It's tough for sure. x
ps how boring is a low residue diet....
Oh no I'm so sorry to hear That!!
Such a scary thing to be told, how u doing? X
I feel better now I have had offers of more treatment - I was not ready to give up. Scary for sure. My method has always been to distract myself with other things, and I enjoy the good days and rest on the less good days. Red wine is very beneficial too 
Love your outlook...im the same....i feel they're discussing someone else most of the time....dobt get it how can be so bad so quickly x
Lol the diet sucks! Nice the cake and custard side but miss colour in my food!
Please please please let me know how you get on I wishy luck and love along this shi##y journey xx
Thanks - follow me and I'll update. Or message any time.
Cheers hunny 😗
Hi Angie so sorry you had that news today xx
I’m on the CEBOC trial at the Christie and about to start the cediranib tablet tomorrow after 5 doses of weekly taxol has really reduced my Ca125 .
Not sure if you’ve had weekly taxol before as I know that excludes you from the trial but might be worth a look as it’s specifically to try and stop bowel obstructions?? It would mean you’d have to attend the Christie for weekly treatment too as it’s only being run there x
If you look on my profile I’ve posted a link to the trial blurb xx
Good luck and keep us posted xx
Sorry to read this - would it be possible to have bowel surgery and a stoma to reduce risk of blockage ? Obviously you can get blockages still but you don’t have the colon and boxes of movicol to think about. I’m also wondering if any radical surgery possible - friend had rare aggressive appendix cancer that was disseminated throughout pelvis during surgery as it burst and she had lots of peritoneal bits and pieces stripped them what she called hot chemo which I think is Intraperitoneal chemo - she’s doing ok still 20m down line. Otherwise maybe a referral to the Christie- each hospital even the big specialist centres seem to have own take on treatments and trials so you may find something to buy you more time x
Ty for message...yea they told me that if i needed surgery I probably wouldn't survive it. Found that so confusing cos I feel fine other than lethargic and weak muscled. It's so confusing, sounds like christie is a good option with everyone here...not sure how but will look into a meet with someone there xx
You can ask your oncologist or GP to refer you to the Christie for 2nd opinion - Professor Jayson is the lead.
Hi Angie, I can't add any more to your repose from our lovely friends. as if having this rotten disease is not enough, but to have the added worry of dependent children I whole Hartley feel for you and any one in that position.
I'll try and give you some encouragement I've had Calyx as single treatment and Carbo/Caelyx with very good results, my history is as soon as I go off chemo my 125 goes up but Caelyx seems to be the one chemo that works for me, I know that we are all so different in the way chemo work I hope it give you the best results.
I also was told I would not live a year after being diagnosed that was 4 years ago.
Look at Lily Anne she keeps proving them wrong and hopefully for a very long time yet .
Again I hope Caelyx gives you good results and then a trial that will suite you.
take care Lorraine xx
I was given the same news by the royal marsden. I was left very ill by them with severe, and i mean severe ascites. Went to see the proff at the christie. I had to be put in a wheel chair on arrival. Within minutes of seeing him i was admitted, put on morphine and told there was options. Im on cistplatin and gem. Spent four weeks in the christie severely ill. Had ground breaking ascites treatment. Im doing really well. RM is an amazing hospital but not for me. Get that second opinion. Good luck x
Gleedy I am glad to see this update and that you were given hope and have ridden out a rough time. I am just at the point of opting for the prof's in-patient treatment so you have given me encouragement to go ahead. All the best to you. x
I honestly believe i would not be here if it were not for the proff. Im not even exaggerating. He is a wonderful person x
Hi Tracey. Nice to hear from you. Glad all is now looking more positive for you. When I see people back on the forum I always feel happy that they are feeling well enough to bother. When I was ill last time, I couldn't be bothered at all!
Jenny
Hi Angie so sorry to hear this, what treatment have you previously had have they tried any parb inhibitors I was almost eligible for the PRIMA trial but as I was on avastin I was not, have you approached other hospitals about trials don't give up, keep positive I live in Ireland and there is a lady here misdiagnosed with cervical cancer she was given 12 months to live in January and was put on a trial for a drug that was not even supposed to be for cervical cancer and its given her a good response she had to travel to a different hospital for it but it seems to be working she also went to healing and vitamin infusion therapy the immunotherapy drug is called Pembrolizumab on the trial she fought for 9 weeks to get on the trail I don't know if its any good for our ppc cancer but please keep trying take care xxx
i think this is the PRIMA trial for ovarian cancer in the UK try calling them maybe and see if they might consider it for you cancerresearchuk.org/about-...
Hi Angie, I just wanted to send support and good wishes. Keep pushing and possibly get another opinion. I’m glad to hear that you’re feeling fine, though. I really hope that your next treatment knocks it down!
xx Gina
Much appreciated sweetheart ty xx
Hi angie really sorry to hear that ..i also used all of the options except for caelyx starting it on monday and dont know what to expect... please ask your doctor about (Oxaliplatin and Fluorouracil in Treating Patients With Recurrent Ovarian Cancer) as my dr. Told me if caelyx didnt work we can try that..take care,big hugs ❤️
Hi Angie. I feel for you.. what a rotten bit of news.
We seem to be the same age, and I imagine you are not at all ready to call it quits within a year. So don't. Maybe take Lily-Anne's approach i.e. get the paperwork sorted and then see about living your life as well as you can, on any given day. Doesn't hurt to push for that second opinion either.
I really hope you receive some additional treatment options, and stay around for some time yet.. at least as long as you feel life is worth living. Xx. Maus
Bless ya heart I appreciate that xxx
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