CT results - chemo not working!

This week has been even more difficult than the week I was diagnosed.

I was called in early to review my CT results, to be told that the chemotherapy was not working and all other medical treatments had been ruled out. Cholangiocarcinoma does not respond well to these treatments. Although I already knew this, I was hoping it would shrink the tumours enough to buy me some time with my family. One plus is that the tumours have not increased in size, but they will adapt and further sessions of chemotherapy are unlikely to help any more. Because of this my oncology team to the unusual step of sending me for an urgent 2nd opinion with a London hospital. My case had been discussed by video link & they had agreed to see me. So on Monday morning we took the train and met with a

Hepatic surgeon. They have offered me a chance to have more time with my husband and children and I am going to take it. On the 26th of June I will be having 65% of my liver removed together with my gall bladder & possibly some of the pancreas . This is close to the maximum allowable resection & leaves me with no other options should it fail, but after consideration I am unable to see any other options anyway. So I am going ahead with it. I promised my family that I would do anything necessary to stay with them, It's a promise I intend to keep.

Once again we are all in a state of shock. Just as I was getting into the groove with my chemo routine!

I have 101 things I need to get tied up before next week, all stuff I thought I had time to do.

So many thoughts racing through my head. So many things I need to say to so many people.

To the outside world I am smiling & pushing the positives of this chance that I have been given. But on the inside, I am teetering on the edge of breakdown. I have to believe that I will get through this operation & that I will have more time with my family, but I would not be human if I was not scared or fearful that I will not.

I do want to thank you all for your support on this site. You have been my sounding board when I had no one else to turn to.

Love & prayers to you and yours

X Cibble

40 Replies

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  • My love and thoughts are with you. You have made the right decision. Good luck, and let us know how you are doing xx

  • Thank you Gamesmaker.

  • I am sure it will be a success, definitely if the rest of your liver is healthy ( no cirrhossis etc) it will simply regrow. It will be the op that saves you! You are very brave and courageous and I wish you well and many more happy years with your family x God Bless

  • Apart from the 4 tumours I have been told I have a very healthy liver.

    Thank you for your positive thoughts.

  • Cibble I do not know if I am helping but I am trying to. In 2013 I had a liver resection carried out (smaller than yours) and I am ok. I did not have any Chemo afterwards. I am sure that my liver has regrown. I want to wish you all the very best for the 26th June and perhaps one of your family will keep us informed. Cyber hugs to you. xx

  • Thank you Tatjana

    They have told me that I will also need to have at least 3 cycles of chemotherapy after the op. As glandular carcinomas are so individual & unpredictable. This is also the reason that I am not eligible for transplant, as there is a high incidence of aggressive recurrence even after all visible & histological signs of the cancer have been removed.

    Thank you for your positive thoughts.

  • Good luck keep us up to date

  • Thank you Jhewkin1

  • My thoughts are with you at this time, I can not imagine what you are going through but go for it, will be thinking of you , God bless xxx

  • Thank you Julia

  • Best wishes and good thoughts with you

  • Thank you Anita

  • Morning

    So Sorry to hear the Chemo isn't working. I have always had my doubt about its usefulness, it has never worked for most people I know who have taken it.

    Have they discussed Cetuximab? is it an option?

    dailypost.co.uk/news/north-...

    I have read some where that the Liver can regenerate from as little as 5 -10%, so leaving 45% it should be fine to regenerate. They set the max at 65%, but it obviously has a buffer zone.

    So if this resection is successfully you will be cured?

    When I thought I was dying, I was terrified, I started becoming very paranoid and became reclusive and didn't want to leave the house etc. After a couple of weeks of literally climbing the walls and being on beta blockers, I became clear headed and thought atleast I'll know if there is life after death, I might even see grandma again! I started to accept.

    The truth is we all have to face death sooner or later. My dad is 70 and has been mentally preparing himself for the last few years, he just doesn't want to suffer, he is more concerned about quality of life rather than the length of it.

    Have they discussed what you should be eating and drinking to get your Liver as healthy as possible before the operation? Would Milk Thistle help?

    In mean time perhaps go outside and scream and bash something!

    Feel free to let it out here on the boards!

    prayers for you

  • You poor thing it's s horrible predicament to face I can only imagine how tough that must have been!! Our thoughts and prayers are with you keep positive and determined it'll make you feel a bit stronger!

    Looking forward to hearing from you soon.💕

    Helen

  • Thank you dooley1.

  • Dear Cibble,

    All our thoughts and prayers are with you and your family.

    Pear

  • As mine are with you & yours Pear.

    X Cibble

  • Dear Cibble,

    The fight is never over and yours is a long way from it... You have this unique quality of being a realist as well as full of compassion. You have taught me to try and face my own convictions and I am sure as many of us have already said how much you have touched all with your positivity during extremely terrifying circumstances... I do pray and hope with all my heart you pull through xxx

    Pear

  • Dear Pear,

    Although it has only been 3 months since I received my diagnosis & joined this site. I feel like I have known you for much longer. You have been great support for me & the site has given me a way of helping where I could from my experience as a Nurse.

    My thoughts & prayers are always with you.

    X Cibble

  • Cibble you sound like a great organiser and someone who wants as much as possible to be in place the way you prefer. I'm sure you want to feel that everything will carry on at home as close to the way you do things while you are in hospital. But you know deep down you dont have the time or the energy to put everything in order, so prioritise what you stress about most and stick to that. Maybe write lists or instructions rather than rushing round 'doing' as you will not achieve perfection!! If things dont go well, your family will cope, they will survive. They may not survive as well, but they will survive.

    But you must be at peace when you go into hospital for the operation, not stressing about household routines and the future.

    Is it the Whipple they are planning? I have a neighbour who was diagnosed with pancreatic cancer and she had the same billiary surgeon as me. She's in her 70's and had already had breast cancer twice. Not many of us thought she would pull through, but she did, she's still here, I think her surgery was about 3 years ago now. You have such a strong positive attitude I am optimistic for you and hope we will see more posts from you on here in the future.

    Now stay strong and stay positive for yourself.

    Much love

    Fiona xxx

  • It's not an actual wipple procedure, but he will have a good look around to make sure the other organs are unaffected. The scan still shows the tumours are only in the liver. I feel for my poor husband if he ever has to refer to these lists!!

    I am putting memory boxes together for the boys. I know they are not babies any more but I want them to remember how much I love them. I do not want them to dwell on the bad times or my illness but remember when we laughed and enjoyed each others company.

    Thank you for your positive thoughts Bolly.

    X Cibble

  • The news that the tumours are contained in the liver has got to be something positive to hold on to. Lets hope your hubby doesn't need the lists, they are just there for your peace of mind, so that you know you have done the best you can in the time before surgery to leave the family in a good, safe and sound position and set them up for the future. (Which of course you will be sharing with them yet, but this is just your umbrella/insurance thingy). Memory boxes are great, write them a letter too if you feel that would help. Thinking of you, have faith in your surgeon and in your ability to recover using inner strength you probably dont yet know you have. xx

  • You are on brave and inspirational lady Cibble, my prayers are with you that this surgery does the trick and you go on to have many happy times with your family yet.

    Lots of love and best wishes.

    Katie xxx

  • Thank you Katie

  • Hi just wanted to say what a brave and inspirational person you are all the best with the op kind regards

  • Thank you Horsey1.

  • My heart goes out to you , I cannot begin to imagine what your going through , as a mother of three myself I understand the fears you must have and everything you'll want to have in place , hoping things go your way in London and you get the time you need,xxxxx

  • Thank you Birty.

  • Hi, Your story has really touched my heart so much I have a tear in my eye ( Not many ladies have done that. ). You sound a very strong person so stay very positive. God bless you..xxxx

  • Thank you Brummie. Take care of yourself. As a health professional I am very much against age limits to treatment. If you feel that you need to push this further check with your own team. Most cases can be reviewed on merit/health status & not just on age.

    X Cibble

  • Oh Cibble, what an awful lot you are going through but as has already been said, you are such a positive person that if anyone can get through it, you can.

    I can only try to imagine what you are feeling and I send love and the very best of wishes to you for the best possible outcome.

    Mags x

  • Thank you Mags.

    X Cibble

  • Pray with good faith to God the almighty, medicines and treatments can fail, not him.

  • Thank you.

  • You are such an inspirational lady Cibble. I felt compelled to comment to you even though I am on the childrens liver disease Health unlocked and so dont comment here much but I always read the posts on this forum in search for answers about my childs condition. You can do this. Sending you and all your family positive cyber thoughts and hugs. Good luck for next week xxx

    Mormer x

  • Thank you Mormer. Also sending cyber thoughts to you & yours.

    X Cibble

  • My love and thoughts are with you. God bless xxx

  • Thank you Holmes.

    X Cibble

  • Thinking of you and sending you every possible good wish for your operation today. Best Wishes to yourself and your family. By the time you read this you will be on the road to recovery and new lease of life

    All the very best

    xx

  • Good luck thought are with you

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