PPC recurrence. Off we go again!

So, it would seem that after twelve wonderful, clear months my PPC has returned. My onc wants me to start chemo again a week tomorrow and I am considering options. My scan showed no visible changes but I do have ascites and this type of cancer can be invisible to the eye, hence his concern. I am fairly philosophically and gain inspiration from reading these blogs too, so hope at least that I can deal with this as a 'chronic disease' for a while longer yet. It is so ironic that you can feel as fit as a flea and still be plagued by this. I love my new curls too....arghh!

Love and light to all xxxxxx

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49 Replies

  • Dear Cerise, so sorry to hear you've got some more treatment ahead. Very wise to think of this as a chronic disease and so pleased you've had 12 wonderful months since your first treatment. Hope you still going to be able to get to the Liverpool day in jan- be lovely to meet you ax a fellow ppc sufferer. There seems lots of good options ahead for recurrences and do hope you get the ascites down soon - must be very uncomfortable, love and hugs hilaryxx

  • I certainly do hope to be there. I need all the positive stories I can get ( as we all do) especially after leaving the onc's office! I think there should be a separate section here where you can swear like a trouper - ha!

    Thanks for your kind thoughts xxx

  • Hi Cerise .. Sorry to hear that you've had a recurrence. I wonder what the options are that you were given. Is this second line for you? And good to you by the way and to Hilary. X x

  • Hi Tina, I gave paperwork to a med pal last night but will post when I have them. I had carb/tax and op in 2012. As soon as 'niggles' came back, I was straight onto it. Not sure they know how to deal with assertive women - ha! I will keep you updated. Lv, Sue x

  • Well, assertive's good! You're the main stakeholder so whoever has the biggest stake, shouts the loudest! That's how it works in business, isn't it? Love to you .. And I meant to say good morning x x

  • 'Morning Millie and thanks for that. I love the way you expressed it too XX

  • I have been looking at some ankle boots with funky, high heels. They are quite pricey but......I am going to get them! Lovely weather here on the Wirral, so hope it's the same with everyone else. XX

  • Gorgeous in Stoke too, and love the sound of those boots - go for them ( as long as you can walk in them ) . Will be able to recognise you in Liverpool,because of the boots. I've got a Xmas tree outfit to wear for Xmas - shall I wear that? Xx

  • I am always in favour of new boots (possibly also a handbag) as a remedial and comforting steps. Especially for anyone called Sue. And you certainly deserve them! So sorry you have to start off down this path again, but I believe in the power of attitude and strength of mind as a part of the answer -- and you have these, it is evident. So onwards and upwards, go get the bastard. Also, the boots.


    Sue xxx

  • Thanks so much for that, Sue. I might even get the shoes today so watch this space! X

  • Absolutely, go for it! X

  • Hi Cerise,I am going through similar. Had only 6 months remission but only had Carboplatin first time round as onc didn't feel it made much difference to outcome, however on it this time. Just finished 3rd cycle of 6. This time my Ca125 was only 300 + last time was 9,000. It is now down to 109 after 3. I had ascites also but not so bad this time and has gone quickly.I have had no operations. As you say it is weird to feel fit a lot of the time yet technically have such a life threatening illness. Don't know if any of this helps but I am glad I am on it again and it seems to be working so roll on Spring and the golf season. All the best and I would be interested to hear how you get on and which drug, drugs you will be having. Love Sue x

  • Thanks Sue, and very useful to hear. I always find it 'interesting' to hear the range of views from the various oncologists. I will know more next week and will update. You keep being positive and getting fit and well. Lv, Sue x

  • Dear Cerise

    Great to read that you're feeling well despite the ascites - and that you're in a fighting frame of mind. I hope you get those boots and post up a pic of them. That's just the stuff to strut your stuff through the coming months.

    You take care. Will look forward to reading the progress report.

    xx love Annie

  • I will defo post pic when I have the boots....will use to 'kick some ass' for sure! X

  • Like!!!!

  • Hi Cerise.....those boots were made for struttin' and that's just what they'll do. All the way to your next remission :-) Hope it all goes really well for you.

    Love n posivibes

    Wendy xx

  • Arghhh!!! But hopefully chemo will deal with these errant cells - you might have one that doesn't involve losing your hair. Have you read drdu's posts on NSAIDS and aspirin? She also has PPC, she's a former GP, and after her first recurrence she was given a course of NSAID pain killers for another reason. That was I think 2 years ago, and she's fit and well now, she's had no more recurrences. You've probably read her posts already, I just thought I'd mention it. Best wishes, Vxxx

  • Thanks for replying, V. Yes, I have printed all this off so I am armed with as much info as possible. I take inspiration from the site and, like so many others here (too many) intend to keep trying all avenues, hopefully with some success and whilst retaining a sense of humour. Lv

    PS - albeit black humour sometimes!

  • As the Reader's Digest used to say, Laughter is the Best Medicine. I think there's a lot of truth in that. I'm also a fan of drdu...

  • Hi Cerise. If they put a site on where you can have a swear up I am sure we will all be on it lol.

    Get them boots, it will do you a world to good to treat yourself to something you like even if a bit pricey.

    Let us know your treatment. Some of us on 2nd line are on a chemo mix where you don't lose your hair, only thins slightly. The mix is carbo plus gemcitabine.

    I had carbo/taxol first time. Lost my hair and 4 stone. Following that I felt fine, no symptoms. CA125 rising plus CT scan showed progression. I want wanted delay further chemo but was advised to go for it whilst I was well. So far the only side effect is tiredness.

    Good luck with your purchase!!! Put up a pic, we could start a club and all get a pair to kick ass!!

    Love n hugs Izzy xxxxx

  • Thanks for this info Izzy. I am not sure which chemo to go for so Interesting to hear about yours. I will update when I have made decision. Oh what joy! X

  • Love the idea of a swearing room on way out of oncology clinics. Do find oncologist generally gloomy - sure they get weighed down by their job. Im generally very upbeat but hate oncology appts as give you that sad look and smile.even though treatment going well at the moment. Even my husband noticed it last time he came. So many people on this site have done much better than lead to believe by oncologists. I know its not much consolation Cerise but I believe the fact you've been in remission for 12 m is good and means you're what they call platinum sensitive,so better treatment options for 2 nd time round.

    How do we cheer our oncologists up ???? What a quest - does anyone see a cheerful oncologist?

    Any suggestions ? Shall we all wear kinky boots to our appointments..... ?

    Hilary xx

  • I must admit I don't worry about what I wear to hospital. I'm always in jeans and I turn up with my Brompton Folding Bike, Cycle Helmet, and Fluorescent Jacket. I tell them the bike is my hospital ambulance which makes them laugh - even if it's only in a nervous sort of way. I don't even try to understand much about my disease. I've learned on this forum that it's unbelievably complicated and we're all completely different in how it affects us.

    Some ladies in the hospital are amazingly elegant but I don't suppose they have to worry about fixing their bike chain when it comes off. lol xxxx Annie

  • Biker Chick Annie :)

  • Maybe the elegant ones fancy the docs - ha! X

  • And why not!!!! I might be missing out on the fun!

  • Morning Hilary, yes, I do feel for the oncologists sometimes. I also agree re doing better than they suggest - which thankfully I did the first time around. I have enough gloom and doom of my own right now without theirs though. Defiant, that's what I am, just like in my schooldays - ha!

    Lv x

  • Morning y'all,

    I agree with the above comments.I have to say 'any good news then' before I leave! Might try those ankle boots next time.......xx

  • Good idea-Ill try that question on wednesday before I leave . See if she has any good news she wants to share with me........ LOL xx

  • Hi Cerise,

    Just sending my love.

    Zannah x

  • Thank you Zannah, I do appreciate it x

  • Wishing you the best of luck with your treatment.

    Get the boots, absolutely!!!

    One of my favourite quotes is

    "When the going gets tough, the tough go shopping"

    Love Mary xx

  • Love that Mary!

  • It was written by Oscar Moore who wrote a series of columns in the Guardian after being diagnosed HIV in the early 90s. It always stayed in my mind and I've never found it difficult to put into practice :)

    Love Mary xx

  • haha - fab advice from a pro. xxxx

  • Just passing on some info......the ascites, whilst not as bad as last time, does cause some discomfort. When at local hospital last week, the doc there ( not my oncologist) suggested I try diuretics to see if that worked, before doing a draining procedure. This had never been mentioned before by anyone. I woke this morning after first reasonable night's sleep for ages and swelling has definitely gone down! I wish I'd been told about this before but better late than never, I guess. For anyone enduring ascites, it might be worth a mention.

    Have a lovely Sunday everyone xx

  • Definitely worth a mention. Glad you're feeling more comfortable. xx

  • Hi Cerise,

    I'm sorry to read you are facing more treatment and would like to send you my best wishes and hope you get a lovely long remission. Xx

  • Hi Cerise wishing you well for your treatment . I too have ppc and had 12 months of chemo and have now restarted . I too have had ascites over last few weeks and needed to have drained a couple times . Hoping this time we get a longer remission

    Take care

    Ally xx

  • We can compare progress and notes......stay strong xx

  • That would be good and hope we are both well soon xx

  • Dear Cerise,

    I am sorry to hear you news and thinking of you, I guess we go to the same hospital as I live in Chester.

    Although you are taking diuretics and it seems to have eased things for you, I am not sure whether taking diaretics is good advice, I know when I had ascites I was advised against this, of course it depends on why you have ascites but people are given diuretics when it is not OC generated otherwise it could lead to other problems, I think it is best to check with your oncologist to see if it is the correct thing to do... If ascites was that easy to control I wonder why they don't treat the many people that are on this site with diaretics, please don't think I am trying to discourage you but just check it out.

    or ring the ovacome helpline tel 0845 371 0554 or 0207 299 6650

    Sending you best wishes love x G x

  • Morning Gwen

    When I went to Arrowe Park last week, this came up in discussion. My ascites is not as bad as first time and draining unless you are really big, has risks. They felt that until decisions had been made about chemo regime etc that it might just ease the discomfort, which it has. I waited until I saw my onc two days later and he said, fine, go ahead. It doesn't work for everyone and, as I said, it is a temp measure. At least I can sleep a bit now!

    It is good to know that people like yourself and others here, take the time and trouble to read and advise. Thank you, Gwen. Best wishes xxxxx

  • That's good news Cerise, (I am glad you checked it out) I was just a little concerned that others might have gone ahead without first checking whether it is the right thing to do.

    Thinking of you love x G x

  • Hi .

    Sorry to hear this ..

    But so glad your so positive and are prepared to hit this head on,

    I wish you lots and lots of luck


    Suzanne. xxxx

  • Thanks Suzanne, I am sure we gain plenty of inspiration from this forum! XX

  • Cerise, very sorry your disease is back.

    There´re some chemos that don´t drop the hair, I´m receiving Caelyx and Avastin and my hair is growing normally. Hope your onco team will suggest you something that can zap the cancer and maybe keep your hair over your head.

    Hugs, Fernanda

  • Thanks Fernanda, we can compare notes if that's my regime too. Won't know til next Thursday. I need a good dose of Christmas spirit right now! I do hope all goes well with your chemo and will update when I know more.


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