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.
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!
Topic: chemo for recurrance
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
PS – Kelly – great news – good luck with the surgery
Topic: gemcitabine and cisplatin
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
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