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This topic contains 23 replies, has 8 voices, and was last updated by  Julie_ammf 2 weeks, 2 days ago.

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  • #10424

    shiner
    Participant

    The biopsy result was received today and the result is “suspicious” and had abnormal cells that point to there being a cholangiacarcinoma. Next step is to see the Oncologist next Wednesday to discuss “options”. Yesterday, I saw one of the Surgical Consultants who is/was involved in my case and he said that I was not presenting as one with CC normally would. No weight loss, no loss of appetite and some other non-specifics that are normally present. I asked if that was a reason to hope and he was non-committal but seemed to have some optimism. Today’s revelation, though not a total surprise has dashed that hope.

    I’m relying on chemo-therapy I guess unless I’m offered one of the other risky treatments available. So the roller coaster ride continues – up last night after seeing the Consultant and down today after receiving the biopsy result.

    #10425

    Helen_ammf
    Moderator

    If it definitely is cholangiocarcinoma, Shiner, then the first line of treatment that’s usually recommended when it’s inoperable would be chemotherapy (Gemcitabine and Cisplatin), and after that other treatments might be considered.

    There is a first line trial, ABC-07, which starts off with Gem/Cis and then randomises to continuing with the chemo or going on with SBRT (a type of radiotherapy) although this might not be suitable for you – worth asking your oncologist next week though – you’ll find more information about ABC-07 on the Clinical Trials page on AMMF’s website: http://ammf.org.uk/clinical-trials/:

    It’s also worth asking your oncologist what ‘suspicious’ means and although the abnormal cells point to this being cholangiocarcinoma, how sure are they about it.

    I’m sure you will have many other questions so, as always, write them down as it’s so easy to forget or get side tracked …

    With best regards

    Helen

    #10426

    shiner
    Participant

    Thanks Helen.

    I’ve been reading through the criteria for trials eligibility and it would appear that because other cancers that I have, I don’t clear the first hurdle. I’m not even sure if the referral for Cyberknife intervention will be successful for the same reason as SIRT is ruled out because of my past medical history.

    Doors closing as I approach them.

    #10430

    Helen_ammf
    Moderator

    Any previous or existing medical conditions will have implications for the treatment for your cholangiocarcinoma, Shiner. Your oncologist will be the best person to discuss all this with – and then, if you feel you want to get another view on what your are told, you might want to consider a second opinion …

    We are here to help if we can …

    With best regards

    Helen

    #10451

    sarahc65
    Participant

    I would really appreciate some tips from people who have undergone a Whipples procedure.
    I am about to have this done in a couple of weeks.

    #10452

    Helen_ammf
    Moderator

    Dear sarahc65

    Welcome to AMMF’s Discussion Forum – we will do our best to give you the information you need, and I’m sure others will come in too, with helpful comments. Knowing you are about to undergo a Whipple’s procedure is a daunting thought for you – this surgery can vary in its extent depending on the position and spread of your tumour, but Southampton Hospital have provided some very good information about this procedure, which you might find helpful:

    http://www.uhs.nhs.uk/Media/Controlleddocuments/Patientinformation/Digestionandurinaryhealth/Whipples-procedure-patient-information.pdf

    I would also suggest that you post your query again as a new entry under the Introductions section of the forum, as it may get lost in the long conversation thread on this post.

    With kindest regards, and very best wishes for your surgery

    Helen

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

    • This reply was modified 3 weeks, 2 days ago by  Helen_ammf.
    #10456

    sarahc65
    Participant

    Thank you Helen.
    Yes that is a useful information leaflet.
    I have now posted again under ‘introductions’ so look forward to getting some replies

    #10484

    shiner
    Participant

    An update but down beat. The referral for Cyberknife (SABR) seems to have stalled with the amount of time for exchange of letters between hospitals. It’s now 23 days and one hospital is still waiting for the CD of my scans to be sent from the other hospital. Whatever happened to the joined up NHS and electronic communications?
    Due to the delay, I’ve lost a fair chunk of what apparently remains.

    The Hospice Nurse has visited twice and things are in place for the “end game” which seems to be approaching with an air of awful finality so we’re more or less reconciled to the prognosis.

    I have ruled out Chemotherapy on the grounds that we would rather have six (or so) months of good quality life rather than 18 weeks of pretty awful conditions, if the Oncologist is to be believed, for the sake of an extra three months part of which would apparently be spent recovering from chemotherapy.

    I’ve just started taking Theracurmin as a final “last straw”. Here’s hoping.

    • This reply was modified 2 weeks, 2 days ago by  shiner.
    #10486

    Julie_ammf
    Moderator

    Thank you for the update Shiner and we’re sorry to hear that you have had some delay between the hospitals in waiting for your Cyberknife referral.

    You may find this page on our website of interest http://ammf.org.uk/helpful-links/. It includes links to other organisations that may be able to offer you information and support.

    If we can be of any further help to you please get in touch and I’m sure other forum users will come in with their thoughts and experiences regarding their decisions on chemotherapy, although for every individual it is a personal choice.

    You have our thoughts and warmest wishes.

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