feeling shocked

Hi folks, i've not posted for a while as been having 6th line chemo of carboplatin and caelyx since March and been fairly well on it. It seemed to be working as CA125 went down nicely and then my white cells were really low and i had a long gap after the 4th session. Thats when CA125 started to rise again. Anyway I went for scan and blood test results today and was really shocked as CA125 had risen to 1330 (it was 740 when I started chemo) and there are lots of bits of cancer on my liver although the tumours in my peritoneum and omentum have shrunk a bit. My doctor knows I need a rest from chemo for a while but is suggesting the rotterdam regime with cistplatin which I have certainly heard of and sounds pretty awful. I asked him how long he thought I'd have with no more treatment and he said about 3 months which really upset me. I feel really fit and well at the moment and have lasted 11 years with this horrible disease and been lucky that its been pretty slow growing up to now but it seems to me that its just taken off now and i can't see how any more chemo will work.

If you've had experience of the rotterdam regime i'd really like to hear from you. Also if you have any knowledge of clinical trials that might be worth trying please.

I have been really lucky to have lived this long with this illness and to have met my beautiful granddaughter LIly (now 18months) but I am doubting that i';ll meet my next grandchild due in May and it makes me very sad. I will pick myself up and do all I can with alternatives, complementaries and medical treatments. Any support, info very welcome. Thank you

love Francesca x

20 Replies

oldestnewest
  • Hi there Francescahannah..

    I can see why you'd be shocked and feeling down. You've done very well so far and you obviously have had the will and strength of mind to carry on and live your life your way.

    I'm not sure about the Rotterdam regime. I know others have had it so no doubt they'll be on to tell you what they know personally.

    In the meantime, I'm sending you a hug and a wish for a very good response and a long remission.

    Xxxxx

  • I dont have any experience of this regime either but its there for you and I am sure it will give you more time and hopefully time to meet your next grandchild, The Royal Marsden and Christies is good for trials from what I understand, Some of the other ladies may have more words of wisdom for you, But will keep you in my thoughts and prayers

  • If you do a search on "rotterdam regime " in the box top right, then press the enter key, you'll find a lot of info about it, and you'll find out who, in our community, has had it.

    Thinking of you at this low time. Stay strong. xxxx

  • I may be going on this regime next and tried searching for it, but I cannot see an enter button. Am I being dim?

  • Not at all - it's a poorly designed site. There isn't an enter button. You have to use the enter key on your keyboard. The big one with the backwards arrow.

    Have another go and see if you get there.

  • Got it. Many thanks

  • Hi Francesca,

    really sorry to hear his- I have sent you a pm,

    Love

    Jan x

  • thanks Jan, I will contact DR deLacy and probably the nutritionist too.

    Good luck with yours

    love francesca x

  • Like you I'm on 6th line one down fingers crossed. My onc has mentioned. Rotterdam to me but not gone into checking about it yet. Try and keep strong I know it's hard sometimes .Big virtual hugs .Love Jean

  • I am very sorry Francesca to hear your story. I have just been taken off The Rotterdam Regim. It is very tough (probably the toughest treatment) as you have to stay in hospital overnight but of course you get on with it. All went fine more or less whilst having the treatment but towards the end of the 6th cycle of Cisplatin my white blood cells were low so needed a blood transfusion and felt the cumulative affects of all the treatment. So had a few blips. But unfortunately once on the chemo tablets alone (Etoposide) my blood markers started to double and I began to feel really unwell. Tummy problems and bowel problems which have got an awful lot worse. Had an urgent scan and this showed progression so will be starting Cisplatin and Gemcitabine on 5th. This is only my experience. I must admit I am in communication with a lady on forum and didn't work for her either. May work for you. You have to grab at whatever is offered to you until there is nothing left. Hope you get some peace of mind shortly and make the right decision for you.

    Love Patx

  • thanks Pat, its all useful info and I need to think about it before deciding. Good luck with your next treatment

    love Francesca x

  • He Francesca, I'm sorry you've been given this news. MajorBem posted on the Rotterdam Regime. If I remember correctly, he said his wife had her longest remission with this treatment. Please don't give up, you've done so well, 11 years is amazing but you've more in you. Big hug coming yourcway. Ann xo

  • Have been thinking of you lots. Hope they find a good treatment for you and you achieve your goals.

    Much love. X x

  • Dear FrancescaHannah

    I'm so sorry to hear you have such tough decisions to make. You've always been a shining beacon of survival for me and I've been awed at the way you've got through all your treatments. I think our oncologists don't always prepare us well for the time when we need to consider our quality of life and whether that's more important than having treatments that are notoriously tough.

    I think it would be good to have a good long discussion with your oncologist. You could also ask for a second opinion which sometimes brings a new ray of light to the debate.

    Sending love and hugs at this difficult time. xxx Annie

  • thanks Annie, I am researching medical treatments, clinical trials and alternative treatments so when I see him again I'll be well armed. really difficult as my daughter in law Louise told me last weekend that she is pregnant with my second grandchild and thought of not being there is heart breaking

    F x

  • Please don't let those thoughts cast a shadow. I've been thinking a lot about my priorities at end of life. I was inspired by the Reith Lectures last year. Dr Atul Gawande had some inspiring thoughts about caring for cancer patients at the end of their lives and from that I have come to the conclusion that we are not prepared well in the UK. It prompted me to ask my oncologist what the prognosis is for me at third line chemotherapy. I'm glad I got the answer because it's helped me think about quality of my life rather than length of my life and has renewed my determination to live for the day unfettered by sad thoughts and to make the time I have left worthwhile.

    On the topic of grandchildren - my grandad died at the end of the war before my parents were even married let alone had children. His photo always stood on my Gran's mantlepiece and all the family used to say what a lovely man he was. He had a lovely gentle face and kind eyes and I loved hearing about his interests and his quirky ways. I've always felt we are rather alike and sometimes when I've had decisions to make I've wondered what he would have suggested.

    Gran died many years ago. I didn't want anything of hers apart from the photo of Grandad Henry. It's been on my mantlepiece for over 20 years and I still enjoy looking at it and remembering all the things I've been told about him.

    Our lives may be cut short but it doesn't mean to say the generations that follow us will not feel they know and love us or that we might not influence their life choices.

    xx Annie

  • Dear Francesca

    I am just so sad to read your post. You have always been an inspiration . I do hope that

    you will be able to find a trial that could help you.

    I really do not know what else to say only that I am thinking of you and send hugs .

    Georgie x

  • thank you Georgie, I do really value so much support. i'm researching trials and any complementary/alternative ways to deal with it too. Not giving up yet!

    love Francesca x

  • I'm so sorry, Francesca, to read of your sad news and really feel for you. I do hope you find you can take another treatment and that you get a good deal longer, yet. You've done so well with your eleven years survival. After such a long time you must feel extra shocked to find things changing. I'm keeping my fingers crossed for you and I'm sure you'll still be around to welcome Grandchild number two into the world.

    Stay strong, with love, Solange :-)

  • Dear Francesca, I've no information or advice but am absolutely sure that you will find the right way forward for you. Adding my very best hopes, wishes and much love to all those that surround you, lovely lady, Sarah xxxx

You may also like...