Pancreatic cancer, what can one expect?

Hi,

Have you tried this site http://www.pancreaticcancer.org.uk/ gave it to next door neighbour. Said it was good.

Keep in touch

Let us know how you get on

JG

Sorry to hear about your sister.

My Dad had problems with the Capcitebine as well, he was on a triple cocktail of capcitebine, gemcitabine, and oxaliplatin last May. He only managed one complete cycle of capcitebine out of the three. I think it was that which gave him the worst side effects, he developed colitis (constant diarrhea and occasional vomiting)and he lost so much weight we honestly thought he would die last summer. He was admitted for intravenous fluids as he got so dehydrated, but even then his diarrhea continued!! Initially they thought this was just an extreme side effect, but eventually his oncologist (thank God!) involved a gastroenterologist who diagnosed the problem as colitis (acute inflammation of the lining of the colon) and put Dad on high doses of steroids, which sorted him out within 48 hours and probably saved his life.

Unfortnately the chemo didn't shrink the tumour, but it did seem to stop it in its tracks for a few months, so it was probably worth while, and probably stopped it metastasising (or stopped any metastases doing much for a while) and whilst Dad never really felt quite fit enough to have any more chemo, he went on to have several more months of reasonable quality of life, playing golf several times a week (albeit with help of a buggy) and gaining some weight again.

Dad's main problems from the tumour were biliary obstruction causing jaundice, which was sorted out by biliary stents. BE AWARE that if your sister has had this procedure and later develops sudden chills/shivers (called Rigors) and a very high or abnormally low temperature, the stent is probably infected (ascending cholangitis). No one warned us! This is an acute emergency which can be fatal, and you should ensure she is taken straight to hospital. The quickest way is probably to go via casualty, as NHS direct were pretty useless. Dad's always seemed to happen on a Friday night or a weekend! Antibiotics (sometimes intravenous) and sometimes later a replacement stent are required. I think Dad had about 5 stents done, the plastic ones don't seem to last that long. Metal stents last longer but generally can't be replaced.

Dad suffered throughout from diarrhea and discomfort on eating. Eventually the gastroenterologist put in a duodenal stent as well, which helped food to pass through the gut, at the same time then as a metal stent, which lasted until he died. I think it would have been better for Dad if that had been done a bit earlier, but it's very difficult to know how to do.

Pancreatic cancer does have a very poor prognosis as you have no doubt realised, even if it is operable when discovered (only 10% are. Even if your sister was diagnosed when symptoms first arose it would probably have made very little difference.) My Dad's tumour was inoperable, but he survived 14 months from diagnosis, his quality of life was reasonable until the last couple of months.

Dad described his problems as 'discomfort' rather than pain, and in fact controlled his symptoms throughout with paracetemol and codeine, only resorting to opiates (fentanyl patches) for the last week when he could, sadly, no longer swallow and the calpol wasn't sufficient any more. He didn't get on at all well with oramorph, it made him quite stroppy!

I hope things go well for your sister. Good luck.

Kath.

Hi JG,

Thanks for taking the time to comment...yes, i have been to the PCUK site and did find it very useful. I'd say that is where i found out most of what i know about this horrible disease.

My sister has re-started her chemo just a couple of days ago. I pray that this time she will manage much better as she will not have to take the capecetibine.
We enjoyed a lovely cream tea together yesterday :-) ...got to try to boost her weight somehow.

Hi Kath,

Thanks for your reply, it was very informative.
Sorry to hear about your dad. How old was he?

My sister did have a stent put in to kerb the jaundice. She did actually develop a very high temperature and the shivers following her first round of chemo and did take herself to hospital. The symptoms were put down to an infection which they eventually diagnosed as cellulitis (bizarre) but whilst in the hospital she developed c-diff!

She certainly has been through the mill with really severe diarhea and vomiting, and more recently stomach pains put down to an infection around the stent. Whilst she continues to lose weight she is feeling strong right now. I am trying to encourage her to try to 'get on with it', i.e. to try to do the things she likes to do rather than staying cooped up at home. Took her for a lovely cream tea yesterday afternoon which is something we used to do together before she became ill.

What makes things a bit more difficult for us as a family right now is the fact that my mother had a stroke about seven weeks ago now and has been in hospital ever since. She has weakness down her left side and is progressing quite slowly. My sister feels somehow responsible for my mum's stroke but I have told her not to be so ridiculous. My mum is 79, a born worrier and therefore prone to something like this. My worry is if anything happened to either of them and the effect it would have on the other. BUT I do not want to be pessimistic and want to remain positive for both of them and just be there when they need me.

It is good to have a site such as this just to be able to put some thoughts down so i do thank people like yourself for taking the time to read them and share their own experiences.
Thank you.

I have a different sort of cancer, so I can't say anything useful to you, but I wanted to say how sorry I am for you and your family. We're a bit in the same (leaking) boat. My partner's sister decided last May their Mum was too unwell (had had v mild stroke and some heart probs and tends to be a real worrier) was not to be told that I had been given only 3-4 months. Of course, as she hadn't been told the Bad News, she can't be told that it's wonderful that I'm still here defying the docs 11 months later! Everything seems to come at once doesn't it? My mother-in-law also caught some horrible hospital bug twice. I know the hospital I was in had such a filthy bathroom, I was rather glad to have been cathetered! I really hope your sister gains a little strength now. She must really appreciate being taken out - now we just need the sun to shine for your outings. I think you are a star. We are all thinking about you and wishing you and your sister strength, and that she gets to grips with the chemo. Good luck. xxxx Penny

I feel quite humbled. I can't begin to imagine what it must be like for you and the likes of my sister but my heart goes out to you. Thanks for your kind words.

I know what you mean about keeping things away from the worriers of the family. My siblings were not keen on telling my mum that my sister had pancreatic cancer but I didn't think it was right to keep it from her as she knew something was wrong. That meant that I actually got the job of delivering the bad news, so when she later had a stroke some felt that I had contributed to it! Some people always feel they need to have someone to blame but never mind, eh!

I wish you all the best. I shall look out for updates from you.
Take good care
xx

.... or it only leads to complications further down the line. Similarly my partner's sister didn't tell US about their Mum's heart probs, and it all had to come out the night before our hol and we had to cancel at the very last moment. Even then she didn't want me to tell her brother as she thought he'd panic! I did, and he took it calmly. I think it's best to tell everyone involved, even if you don't tell them absolutely everything, because it's a lot worse coming out of the blue. No-one should be blaming you at all - your Mum would have worried even more once she got wind of something being withheld, and then been upset at not being told. Someone's going to blame you, whatever, by the sound of it! Anyway, hopefully now it's all Out There, everyone can start pulling together. You take care, too. xxxx Penny