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  • #170

    Topic: Hello

    in forum Introductions!
    campbell_zoe
    Participant

    Just thought i’d say a quick hello. I’ve been looking at the messages for the past week and decided i would register.
    My dad has had Primary Sclerosing Cholangitis and Ulcerative Colitis for nearly 18 years now. He’s been generally very well however we all knew that the only cure for his condition would be a liver transplant and that his condition would eventually get worse. Anyway just before Christmas 05 he was put on the transplant list and we started waiting.
    We had a phonecall at the end of Feb and he went in but it was cancelled at the last minute (problems with the donor). 3 weeks later we had a second phonecall and it was all go this time. He went into theatre at 7pm and we were told that we were not to expect a phonecall until the morning as it would take all night. Anyway at 10.30pm the phone rang and they said that they had found tumours on his liver and that they had to cancel the transplant. We were all devestated. He had a lot of fluid retention after the operation and his wound leaked a lot for quite a few weeks after and he therefore had a bag on. He started chemo (Gemcitabine) a few months ago and has been well apart from being very tired. His oncologist has said that they may start the cisplatin and gemcitabine in combination but this hasn’t happened yet. His legs have started to really swell up in the past few weeks and he had to go in today to get a drain put in as he has a lot of fluid collecting in his abdomen. He’s had to stay in as there was still fluid coming out after 2.5 litres being drained off.

    As my mum keeps saying it’s so unfair that it happens to people that look after themselves and help other people so much (my dad is a doctor himself) but after the initial shock i’ve been able to remain quite positive and optimistic. We were all very hopeful that he may still be able to have a liver transplant after the chemo but at the moment he’s been told it’s not an option.

    It’s great to read about everyones experiences on here – makes you realise that there are lots of people around the world going through exactly the same thing.

    #118

    Topic: Intro

    in forum Introductions!
    leigh-a
    Participant

    My 36 year old brother was diagnosed with cholangiocarcinoma in August of 2005. They thought he was a good candidate for resection; however, when they opened him up, they said they tumor was around an artery and could not be removed. A stent was put in his bile duct and, since the surgery, he was on a chemo regimen of gemcitabine and cisplatin followed by seven weeks of radiation. Things appeared to be going fairly well based on the initial follow-up PET scans and tumor markers with a few set backs. Last week his PET scan revealed tumor growth and they started chemo again, adding Avastin this time. He had a visit this past week with the doctor who did the stent placement and was told the tumor appears to be wrapping around the intestine. I would appreciate any suggestions/tips/advice for specialists, treatments, alternative treatments, etc. He lives in Flagstaff, Arizona and has been going to Tucson for treatment. Everyone’s stories on this site helps you to not feel so alone in this mess! Thanks!

    Leighanna

    #111
    jules
    Participant

    does anybody have experience of treatments for metastasised cc to lypmh nodes and lungs that have proved effective? – my dad has been offered gemcitabine + carboplatin. Carboplatin is the ‘equivalent’ of cisplatin apparentely – we wanted cisplatin and i want to make sure that we are not being offered a cheaper inferior version. does anyone have experience of carboplatin?

    I notice from alot of the postings that alot of you are having avastin – they are reluctant to give it here in the UK because of cost – is it true that it is a ‘wonderdrug’? – does anyone have experience/more info on this? should it be given in conjunction with the chemo?

    we have not been given an optimistic outlook “at best chemo will give an extre 2-3 months IF it works – 1 in 4 chance of it working”.. this seems hard to reconcile with some of the successes being reported on this site.. marianne i think you mentioned that mark is on oxylplatin rather then cisplatin because trial data showed a more favourable response, do you have a link or further info on that?

    if anybody does have experience of mets to lungs i would really appreciate any advice/info you might have

    thanks everybody

    PS – Kelly – great news – good luck with the surgery

    #13994
    jules
    Participant

    hi caroline,

    your postings make me smile and cheer up a wet day! – it is very kind of you to think of my dad when you are going through this too.

    My Dad met with the oncologist today. The oncologist was very negative about chemo – he told my dad that it is not effective on ‘microscopic cells’ (how do they know this when they can’t even be seen under the microscope?!) he also said that chemo for cc does not have a very good success rate, (he was referring to gemcitabine and cisplatin) and that he did not know of any trials worldwide that had evaluated the effectiveness of chemo post resection, he said that the surgeon was only able to achieve 1mm margins, he also said that chemo would ‘wipe out’ the next year for my Dad with no guarantees that it could prolong his life and that he needed to decide whether he wanted quality of life v quantity.. he also acknowledged that if the cancer did return in, say, one yrs time, my Dad could “kick himself” for not having chemo… so, alot to think about, he also gave my Dad contact details for another oncologist in London who specialises only in cc. My Dad has said that he needs time to think it all over. I have told him that it is a individual and personal decision, I hope he does go to see the other specialist in london though as he may have some more encouraging information.

    Hope you are ok, Jules

    #13990
    jules
    Participant

    caroline, i hope that you get into the trial, has sorafenib given good results in the trial so far? my dad was offered to take part in a trial here – gemcitabine and cisplatin, he has also been offered to take part in another trial for bilcap (I think this is the oral tablet for of 5fu). so far he has not made his mind up what to do, it is difficult as his surgeon did not reccomend chemo and i think that my dad is reluctant as the benefits of chemo for cc are unproven, having said that i know someone who has taken gemcitabine and cisplatin which has shrunk his tumor enough so that he is soon going to be able to have a resection – it just seems so individual.

    best wishes,
    jules

    #13918
    stacie
    Member

    Jules,

    Here’s a website that may give you a little more information on the combination.

    http://www.cancerbacup.org.uk/Treatments/Chemotherapy/Combinationregimes/Gemcitabinecisplatin

    #58
    jules
    Participant

    my dad has been advised to start chemo – gemcitabine and cisplatin as a ‘mop up’ following his liver resection, we are very concerned that chemo will curtail some of the plans we have for the coming year – we have booked a holiday to florida and australia, my parents are also visitng new zealand, last yr was a nightmare and my dad has been so looking forward to going away.. I am concerned that he may not be able to travel – I am not sure what the chemo entails – ie frequency and length and also have concerns re travel insurance, my dad has just started to feel better again after the op and I worry that the chemo will set him back – what are the advantages of chemo post op? – is it a case of quality v quantity? – does anyone have experience of gemcitabine and cisplatin? thankyou, Jules

    #13678

    In reply to: Photodynamic Therapy

    jules
    Participant

    hi, in my dad’s case the tumor had spread from the bile duct into the liver and was actually covering about 60% of the liver. During the first op the surgeon gave him RFA (Radio frequency ablation) which did kill off alot of the cancer cells however the reason why the first surgeon did not remove it was because he said that it was too dangerous as it was too near to the vena cava.

    Prof Lodge operates with aggressively on these tumors. We consulted surgeons in the US (Sloan Kettering and Mayo Rochester) nobody was prepared to operate. We we referred to Prof Lodge through Prof Williams at the Cromwell Hospital. Prof Lodge told my Dad that the tumor peeled away quite easily from the artery.

    My Dad had a CT scan this week – the radiologist had some concerns about enlarged lymph nodes, however they think that it is due to infection (my Dad keeps getting raised temps) – (if anyone else out there has any info that may help on this then please reply). Prof Lodge said that my Dad will not need chemo, he was quite dismissive of it also. Just before the second op my Dad was randomised onto a trial at Hammersmith to recieve a course of gemcitabine and cisplatin, we were told that the best that chemo could do is to ‘extend life.’ I am concerned that maybe my Dad should be seeing an oncologist – reading some of the posts on this site and others it would appear that some patients are held stable on chemo for years and years.. could anyone out there advise me if they have any info on some of the more promising drugs available? – i know that we are limited in the UK as to the standard of chemo drugs available however we can get hold of promising drugs privately.

    Patricia, I would advise you to seek second opinions if you can – keep on challenging and questioning the drs and get informed.

    All the best to you and your husband at what is a very difficult time.

    Jules

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