jules

Jeff

I will be thinking of you and hoping that this treatment won’t be too rough. It sounds like a promising combination. Whenever I read your posts I always find your words uplifting and comforting.

Take care, Jules

angelique,

I am so sorry to hear about your dad. I think that the period immeadiately after diagnosis is the worst. It takes along time for the shock to wear off and there seems to be som much to take in and frightening decisions that need to be made quickly. My advice to you (my Dad has cc, diagnosed July 2005) is as follows:

– try not to take too much notice of some of the stuff you read on the internet. Much of it is frightening and misleading. This is a disease that effects different people in different ways, we have some long term survivors on this site.

– try to look at surgical options first and don’t be afraid to seek plenty of surgical opinions from surgeons who have experience of this difficult cancer. This is complex surgery, some surgeons will operate on cases deemed inoperable elsewhere. (I don’t know where you are based to give suggestions)

– keep strong and have hope. Question Drs and do your research, there are options out there other then chemo. I do not want to reccomend one type of treatment over another, this is a very individual thing. You might want to read up on DC therapy in addition/instead of chemo.

Sorry that you have to be facing this, but know that there is hope. you have come to the right place for support and information. Very best wishes, Jules

Nn

I am very sorry to hear about your friend. I thought you might find it helpful if I add to the above info..

I feel quite strongly that chemo should not be pushed as the only option. chemo induces side effects, although well tolerated in some patients generally I think it is fair to say that in general it restricts quality of life. My Dad has been treated in Germany for many months now with dendritic cell therapy, his disease is stable and the side effects are nothing more then mild flu like symptoms on the evening of treatment. It has enabled him to have a good quality of life – nothing like the chemo sledgehammer approach, I believe that more people should be open to this treatment and its benefits – I hope that this treatment can become more widely available.

Of course it must be borne in mind that every patient responds differently and what works for one may not work for another.. I just know that when you begin researching this disease all the info can seem overwhelming. I think it helps to hear what is actually working and try to find some hope out there. I wish your friend all the best and once again I’m sorry that you have to find yourself here.

Have hope,
Jules

ak

If it is peter lodge taking care of your uncle then i’m sure he will have thought of everything possible to help..(he operated on my dad) have they explored inserting an external drain? – this can help to reduce the bilirubin level.

This is a risky operation, it sounds as though your uncle is going into it fully informed of the odds. I am sorry that your family are having to face this. There are alot of cc sufferers and family members on this board who have experience of this surgery and I’m sure you will get alot of support here.

take care, jules

thanks patricia for the post..

I have just come across this article on pubmed:

Family history of gallstones and the risk of biliary tract cancer and gallstones: A population-based study in Shanghai, China.Hsing AW, Bai Y, Andreotti G, Rashid A, Deng J, Chen J, Goldstein AM, Han TQ, Shen MC, Fraumeni JF Jr, Gao YT.
Division of Cancer Epidemiology and Genetics, National Cancer Institute, National Institutes of Health, DHHS, Bethesda, MD.

Cancers of the biliary tract arise from the gallbladder, extrahepatic bile ducts and ampulla of Vater. Although relatively uncommon, the incidence of biliary tract cancer rose more than 100% in Shanghai, China between 1972 and 1994. Gallstones are the predominant risk factor for biliary tract cancers, with over 60% of the cancer cases having gallstones. A familial tendency to gallstones has been reported and may elevate the risk of gallbladder cancer further. As part of a large population-based case-control study of biliary tract cancers in Shanghai, China, we examined the association between a family history of gallstones and biliary tract cancers as well as biliary stones. A total of 627 biliary tract cancers (368 gallbladder, 191 bile duct, 68 ampulla of Vater), 1,037 biliary stone cases (774 gallbladder, 263 bile duct) and 959 healthy subjects randomly selected from the population were included in this study. Information on family history of gallstones among first-degree relatives (i.e., parents, siblings, offspring) was obtained through a self-reported history during in-person interviews. A family history of gallstones was associated with increased risks of biliary stones [odds ratio (OR) = 2.8, 95% confidence interval (CI) = 2.1-3.8], gallbladder cancer (OR = 2.1, 95% CI = 1.4-3.3) and bile duct cancer (OR = 1.5, 95% CI = 0.9-2.5), after adjustment for age, gender, marital status, education, smoking, alcohol drinking and body mass index. For gallbladder cancer, subjects with gallstones but without a family history of gallstones had a 21-fold risk (95% CI 14.8-30.1), while those with both gallstones and a positive family history had a 57-fold risk (95% CI 32.0-110.5). Significant risks for gallbladder cancer persisted after additional adjustment for gallstones, and when the analysis was restricted to subjects with first-degree relatives whose gallstones were treated with cholecystectomy. The significant associations with a family history of gallstones were seen for all first-degree relatives, including parents, siblings and offspring, but not spouses. This large population-based study not only supports the role of gallstones in biliary carcinogenesis but also suggests that the underlying genetic or lifestyle determinants of stones within families contribute to the risk of biliary tract cancer. (c) 2007 Wiley-Liss, Inc.

Carrie

The pain you describe when sitting is something that my Dad has been complaining of for a while now (we have put it down to the abdominal hernia that he has following surgery). He says that the pain is in his abdominal area and is a ‘gnawing’ pain. Understandably my Dad is concerned that this is could be related to the cancer. although I have noticed that he gets instant relief when he opens his bowels and I have encouraged him to take regular movicol. My Dad is going to speak to his oncologist about this next week and I hope we can get some answers as it is unbearable to see him in pain. If anybody else has anything to add on this topic I would appreciate any advice..

– Jules

janet

i am very sorry to hear about your mum. We are in the UK too. I think that you will find that in the NHS treatments are less aggressive for older people and with cc being so rare it is important to be able to find someone experienced with it if you wanted to push for aggressive treatment (which is what we did with my dad as he was only 61 when diagnosed – see my other posts and my dad’s posts under ‘Geoff’). If you don’t want aggressive treatment for your mum – and i can quite understand why, (i have concerns about chemo effectiveness and side effects although gemcitabine seems to be well tolerated and effective for some patients) there are also other miminally invasive procedures that may help your mum – ie insertion of a stent or if this is not possible an external drain to relieve jaundice, this should also help with appetite/nausea issues. If your mum is suffering any pain then the pain control team/palliative care nurse should be able to help. I hope that your mum and your family are getting support and that your mum is being treated with dignity in hospital.

take care
jules