Chemo or not

This topic contains 8 replies, has 8 voices, and was last updated by  Julie_ammf 2 months, 1 week ago.

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  • #10438

    GillyW
    Participant

    Having been initially diagnosed with bile duct cancer in November 2016 I am still trying to decide re chemo.  A recent CT scan apparently shows there is no difference between now and then when I was told it had spread from the bile duct into the liver and gall bladder and then the stomach.

    I am told that the chemo will help with symptoms …i.e. Relieve nausea, stop the discomfort and nausea feeling when bending over, possibly even help with back pain which it is suggested could be the tumour pressing on the nerve rather than it simply being my arthritis having mysteriously come back!

    Have others who have had chemo had improvements in symptoms?

    Also I am advised that the younger the patient …I am 65 ….the better the chemo is tolerated, especially when given as two doses instead of just one dose.

    Also there would be an increase in life expectancy, it going from between six and eighteen months after the chemo.   The chemo would be four cycles comprising three weeks (I think) for each cycle.

    My fear is that I am going to miss out on this year because I will be dealing with the chemo after affects and of course there is no guarantee that I will get the extra months to compensate.

    Please help me by telling me your experiences.  Thank you so much.
    GillyW

    #10447

    Debbie_ammf
    Moderator

    Hello Gilly,

    Thank you for posting your up-date to AMMF’s forum, we hope others will respond with their individual experiences using chemo treatments. Although as you are probably aware, the side affects can be very different for each person and depending on which chemo treatment is being used.

    You may also find this link helpful: https://ammf.org.uk/treatment-options-2/

    Please keep us posted and let us know what decision you make, not an easy one we are sure! In the meantime you have our thoughts and very warmest wishes.

    *Please note it is not appropriate for AMMF to give medical advice or recommendations, and all details provided are for information purposes only.



    #10621

    Escore
    Participant

    Dear Gilly
    Afraid I have no answers but am going through the same dilemma right now. Palliative chemo due to start next week which may, or may not, extend my life by no more than 4 months, when I have only about 7 left if I don’t take it. So do I spend what may be almost half of the rest of my life (probably the best half before the nasty symptoms kick in, ones I don’t yet have) pumping poison into myself and feeling rotten, or not?
    Personal choice. Just know you’re not the only one struggling with this and I do hope that if you’ve started chemo it’s going well for you. Good luck.

    #10646

    GillyW
    Participant

    Hello Escore

    So sorry to know yet another person is heading down this route ….I just hope you do not have a young family to worry about.
    At least someone has given you figures …or did you get then from the guidelines.

    I was already on a syringe driver for nausea with added morphine before the first chemo on a Wednesday.  By Friday afternoon I was vomiting and by Saturday evening the district nurse called out the duty GP.  I was close to being sent back into hospital but because there was a different anti nausea to inject, prescribed when I was in hospital just before Easter because of a day spent vomiting, I was feeling a bit better so I was allowed to stay at home.

    I dropped six kilos in a week which nearly stopped the second session.  This time much stronger anti nausea which so far are working. But one finishes today so we shall see.

    But the good news was that my liver function count had halved after th first chemo which somehow made going for the second dose have a positive outlook.

    Initially I was not going to have the chemo but was persuaded to try it.  Chatting to a friend we came to th conclusion that if the chemo meant I felt a bit better for a couple of months and then fell off th edge as th cancer charged back, that would be better than the slow decline.   I had stents in January when already quite bad with jaundice …Christmas can be a real nuisance when you are ill ….which help d me for a couple of months but I was aware of starting to go downhill again.  Hence th decision to try thto chemo.

    I love being outside and love to feel a bit of sun ….not a sunbather but like to walk dogs with short sleeves so it is only my arms and face that get tanned.  Never used cover up sun stuff in my life so daft as it sounds having to do this is quite a negative for me.  Sun hats not my forte either but I am going to have to conform.

    I really hope your chemo is kinder to you …but if it does the same for your liver function that is a real positive.  Keep in touch and all the very best to you …this is hard going for all of us.

    Sorry for delay in replying but I could not get logged in …ammf kindly got their IT crew to sort out the problem for me so very many thanks to them

    Gilly

    #10981

    Staystrong
    Participant

    My dad started Gem/Carbo chemo 3 weeks ago for cc. This was 13 weeks after we were told he might have cancer. In between he had several stents, biopsy and some infections to contend with. He is quite tired from the chemo but has not suffered any sickness and is eating well. He has also been told that he should not lose his hair.
    Despite the tiredness he has been able to go out some times and can spend time with us as a family and this is something we couldn’t do when he was in hospital with the infections.
    Only you can decide what is right for you. I hope you can gather strength and stay strong. And remember nobody has all the answers.

    #14141

    stephbaker
    Participant

    My grandpa had cancer and he had done chemo as well. I feel like the side effects from the chemo increased rather than improving his condition. He totally changed and I wish he hadn’t done chemoo

    #14623

    Martin
    Participant

    I am 71 years old & I was diagnosed with CC in December 2018 after participating in the UK Biobank research programme – I had a series of scans including an MRI of my whole body. You don’t normally see any of the results – the information is being put in a databank of 500,000 people in the UK which is used by researchers looking for statistical links between diseases & life style etc. However they said that if anything abnormal/life threatening showed up on the scans then they would inform your GP. Despite having no symptoms of CC at all & a perfect liver function test – further CT scans/liver biopsy/ blood tests, the diagnosis was CC & I had secondaries in my liver, lungs & some lymph glands. Palliative chemotherapy was the only option – I started six 3-week cycles of Gemcitabine/Cysplatin at the beginning of Feb at St Lukes, Guildford. The side effects of the chemotherapy have been not too bad, but importantly I was told at the beginning that I could opt out at any time. So the choice of going for the chemotherapy option felt OK. The chemotherapy seems to be having a big effect on my liver tumour – so it feels well worth while having some side effects of the cyto-toxic drugs. Hope this helps! Martin

    #14670

    jconn_88
    Participant

    Hi,

     

    I am 30 years old and have had my bile duct rumour removed. It spread to my lymph nodes and they were removed also. I was diagnosed last year.

    I am currently 4 months into chemo and it is most definitely tough. I have never been so tired and feel nauseas most of the time. I am on the capecitabine chemo tablets. I do have to say that although it is not fun, it is not horrendous and if it works, it will be worth it.

     

    I agree that it is such such a personal decision and I can understand why people refuse chemo but as this is my first time round, I feel I need to try it and show my family that I am trying.

     

    I hope you all the success in the world, whatever you decide.

     

    Charlie

    #14673

    Julie_ammf
    Moderator

    Dear Charlie

    Welcome to AMMF’s forum and thank you for sharing your experience of chemotherapy.

    There is information on our website regarding treatment options, which you may have seen https://ammf.org.uk/treatment-options-2/chemotherapy/

    Can I take this opportunity to wish you well for your ongoing treatment.

    Kind regards

    Julie

    Please note it is not appropriate for AMMF to give medical advice or recommendations, and all details provided are for information purposes only.

    P S You may wish to repost in the Introductions section of the Forum to reach more users.

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