Welcome to Introductions

Discussion Forum Discussion Forum Introductions Welcome to Introductions

This topic contains 17 replies, has 11 voices, and was last updated by  Michaela 1 week, 2 days ago.

Viewing 15 posts - 1 through 15 (of 18 total)
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  • #5024

    Helen_ammf
    Moderator

    Please be aware that all information shared by AMMF on its website, or by its Moderators in the Discussion Forum is for guidance only. It is not a substitute for professional medical advice and care by a qualified doctor or other health care professional. Always check with your doctor if you have any concerns about your condition or treatment.

    #9287

    katie
    Participant

    Hi Helen ,thanks for replying to my post.I would be grateful if you could move my post to the introductions section as suggested.

    Many thanks Katie

    #9294

    Helen_ammf
    Moderator

    You post has been moved now, Katie, and I’ve also moved my reply with its links for you.

    #9969

    arkun
    Participant

    Hello. How are you?
    This forum is very thoughtful and full of information. Thanks for all the supporters.

    My mom who is leaving in Ankara, Turkey, has been diagnosed with Intrahepatic cholangiocarcinoma (ICC) . The doctors said her stage is IV and she has numerous liver Metastasis. The main tumor size is
    The cancer has spread to nearby lymph nodes.

    She is 70 and 50 kilos. She lost 12 kilos in one year. She has celiac disease.
    She had first chemo Gemzar 1000 mg /cisplatin 40 mg 1 month ago.
    After the 1 chemo she had fever and infection. she stayed in hospital for 2 weeks.
    She had second chemo. Only Gemzar 1200 Mg is given two days ago.

    Is the treatment correct ? How doses are calculated ?

    She has Ascites body fluid, What’s the right diet for her ?

    According to articles I read intrahepatic cholangiocarcinoma is associated with poor prognosis. Do you recommend any other treatment ?

    All the best for all.

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    #9974

    Helen_ammf
    Moderator

    Dear Arkun

    Thank you for your post, for your kind words for AMMF’s website, and for everyone.

    I’m very sorry to learn that your Mum has been diagnosed with cholangiocarcinoma – this must be a very worrying time for you.

    If your Mum has been advised that she is inoperable, then the Gemcitabine/Cisplatin chemotherapy combination, which is now recognised as the standard treatment of care for those patients who cannot have surgery because their disease is too far advanced or has spread to other areas, would seem to be correct for her.

    You will find more information about treatments, etc, and much more, in the Cholangiocarcinoma section of AMMF’s website. Clinical trials are also listed, but they are available in the UK, and I am sorry, but we do not have any information on what might be available in Turkey.

    This is the link to the Cholangiocarcinoma section: https://ammf.org.uk/cholangiocarcinoma/

    As far as nutrition is concerned, your Mum’s doctors or specialists would be the best people to ask about this.

    I am sorry we cannot comment on any other aspects of her treatment, or the dosage of her chemotherapy, as we are not qualified to give professional medical advice. Please do check with your Mum’s medical team if you have concerns about her treatment and condition.

    With best regards to you and to your Mum

    Helen

    #10026

    arkun
    Participant

    thank you Helen.

    How Effective is the Gemcitabine/Cisplatin chemotherapy combination ? Is this combination cure intrahepatic cholangiocarcinoma ? Most of the scientific papers say no.

    #10030

    Julie_ammf
    Moderator

    Dear Arkun

    As Helen mentioned in her previous post AMMF are not qualified to offer any professional medical advice. You may find the information regarding treatments on our website useful https://ammf.org.uk/treatment-options-2/# .

    Another of our forum users has also answered your post (in Introductions) regarding his experiences with chemotherapy, which may be of interest.

    With kindest regards
    Julie

    #10127

    Lescrow
    Participant

    Hi
    I may sound a little paranoid and google just helps to escalate this.
    I had an ultrasound today and was told I had a dilated bile duct. It wasn’t what I had gone to have checked or knew anything about and I was therefore curious what this meant.
    I have a very dull stitch like pain that comes and goes and assume this could be related but I then read itching was a sign of bile duct cancer. I suffer from intense head and neck itching mostly at night, no rash just so itchy it wakes me up.
    I’m worried does this mean I have cancer? I know I need to see my doctor when he get the results but I’m rather worried. Sorry if I’m sounding paranoid. 

    #10128

    Julie_ammf
    Moderator

    Welcome to AMMF’s Discussion Forum Lescrow and we are sorry to hear you are going through a worrying time with your health.

    AMMF is not a medical charity and we are not qualified to offer any professional medical advice. There is a section on our website that discusses symptoms of cholangiocarcinoma which may be of interest to you https://ammf.org.uk/symptoms/ and some of our other forum users may also share their thoughts with you.

    Please don’t hesitate to contact us again if we can be of any further support.

    With best wishes
    Julie

    #14142

    stephbaker
    Participant

    Hello, I am Stephannie, y’all can addreess me as Steph! My grandpa had cancer and he passed away 7 years ago. He used to smoke a lot and when we got to know about the cancer he was on an early stage. He was given some injections bcoz he was old enough that chemo could hurt him. But he continued smoking even after that and hence the cancer grew and he had to undergo chemo. Chemo led to a lot of side effects and turned out to be very bad for his mental health. I wished he hadn’t undergone chemo!

    #14151

    Julie_ammf
    Moderator

    Dear Steph

    Welcome to AMMF’s forum. We are sorry to hear that you lost your Grandpa to cancer.

    We hope that you find our forum a useful platform to share your thoughts and if you have any specific questions…please get in touch.

    Best regards

    Julie

    #14578

    fleur
    Participant

    Hi my name is Fleur, five weeks ago I took my husband Gary to our local A and E, he was admitted to hospital and four days later they diagnosed Liver tumours, he had BUPA health care and so 8 days after diagnosis we were sent to see a specialist at London Bridge Hospital he ordered a biopsy and this was done two days later, Gary came home that weekend for three days before we had to go back to see the specialist, when we did go back his jaundice was so bad and he was in so much pain he was admitted to hospital and they ordered a stent to be placed into his biliary duct.  This was his only chance for any type of Chemo, he had the op and then went on to develope sepsis and pancreatitis and was immediately placed in ICU, ten days later I was told that the results of the PET scan and biopsy had infact made the diagnosis Cholangiocarcinoma and that there was no treatment available only palliative, five days later on 1 March my loving wonderful husband and dad to our two amazing children passed away.

    This was all within five weeks, my world had been blown apart by this silent and deadly cancer, I am so angry I had never heard of  Cholangiocarcinoma before.

    i saw that you posted about a conference in May, I would love to come, please could you give me more information.

    kind regards

    Fleur

    #14580

    Julie_ammf
    Moderator

    Hi Fleur

    Thank you for re posting in Introductions.

    I hope that all the information sent to you was useful and I am sure that our other forum users will empathise with your experience of this devastating disease.

    Kindest regards

    Julie

    #14613

    JudeNorley
    Participant

    Dear Fleur

    My heart goes out to you. I had a very very similar experience and my wonderful husband Graham passed away on 30th October last year. I had never heard of this horrific cancer either. Graham, although 71 was fit and healthy, going to the gym regularly and enjoing a full life. Then out of the blue this hit us and turned our lives upside down. I am coping but miss him so much and feel/felt so so helpless. Every time we went to the hospital we knew there was no hope, no way out. We must find a cure for this silent, deadly disease.

    I do feel for you and send you much love and hugs.

    Kindest regards

    Jude

    #14614

    JudeNorley
    Participant

    Dear Fleur

    Jude Norley here again – just to say I am attending the conference in May with my close friend who helped care for Graham. If you attend would love to meet up to exchange our stories.

    Kindest regards

    Jude

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