Seems so quick!

[Leah]

Am really hoping I can get some help and advise,

Bascally my grandfather is 81, had a panc tumour discovered incidentally on CT he was totally asymptomatic. It was removed via a Whipples in feb which he recovered from well (discharged 10 days later). The tumour was T1 N0 M0 so we thought and were told he was very lucky that it was found so early. He then went on to have chemo which I think was the standard course. Had pretty horrific diarrhoea so after 3rd course was told risks not worth benefits as he was at lower end of risk of reccurance. He has gained some weight and is generally well. However he has as had pain in area of liver for over a year (pre cancer diagnosis), but recently it got worse and eventually he was sent for US which showed liver mets. We will get the full report from the oncologist on tuesday. The whole family is pretty shocked. We knew that the pancreatic cancer was likely to reccur but from what we were told by the hospital and what we knew (both myself and husband are doctor) we didnt expect it to be so quick.

It just doesnt seem to add up, that he would go from a T1 N0 M0 to chemo to liver mets. As I understand things pancreatic ca invades locally first followed by more distant spread to liver etc. If there are no signs of local recurrance and only liver mets are any of you familiar with similar cases? Also as he didnt tolerate the chemo that well last time I would be interested in any other chemo agents used, also have read a bit about chemoradiotherapy which is often offered post chemo, he wasnt offred this but wondering if its an option at all. Have also started looking into any trials there might be and read a little about partial hepatectomy now being tried in pancreatic cancer (been used for mets from bowel ca etc for ages), just wondering if you have any thoughts on these options?

Thanks so much for taking the time to read this, people always assume that because we are doctors we know everything already but we dont so any advse would be really apreciated. Thanks

Leah

[Juliana]

Hi Leah,

Welcome to the forum, sorry no-one has replied yet to your thread, I guess the question you have asked is a little difficult to answer - as you know 'everyone is different' in how PC affects/spreads/causes pain - or not.

I can only give you my 'time-scale' to compare to for the time being:

Whipples Op on Feb 2008 - Age 36

Adenocarcinoma, with local nodal involvement - no mets further a field.

Chemo for 3 months (gemcitabine/capecitabine)

followed by 20 sessions of radiotherapy August/September (2008)

Baseline scan in November 2008 = no sign of mets

Christmas 2008 - mild almost no worth mentioning pain in my back

Come July 2009 pain was unbearable and I requested a scan - ct scan showed multiple tumors in both lungs, and a growth around superior mesenteric artery

Lung mets were small - 1cm in size

I was told that on re-examination of the November 2008 scan they could see the beginnings of the lung mets, but they weren't big enough to be flagged for further investigation.

So...basically, my 'treatment' finished in September 2008 - but by November 2008 there were signs that the cancer was already active and growing.

I'm not sure if that is of any help to you, I have read other patients stories where the cancer has taken much longer to return, but from what I've read about PC - it tends to be quite aggressive, so February to July for mets to occur doesn't sound unusual to me.

Your grandfather has done exceptionally well to get through the Whipples Op.....it's no walk in the park and I am less than half is age, he must be a determined man with a strong will to live.

I have just recently had a meeting with Professor XXX at Leeds hospital - he is currently running a trial, a new drug to inhibit tumor growth.

http://www.cancerhelp.org.uk/trials/trials-search/a-trial-gsk1070916a-for-advanced-cancer

As you said your grandfather didn't tolerate the standard chemo treatment very well, then the above may be an option. The hospital itself is fantastic, and as it's a trial you will be well monitored and looked after.

I have chosen not to do it yet, but to try standard chemo again - however, it has been left as an option for me to pursue in the future - if I want to.

Something else to consider is Cyberknife treatment, however it depends if you have 1 or maybe 2 max tumors - or several. They will not treat you if you have multiple tumors.

If your grandfather does not want to go down the orthodox route for cancer treatment, then there is always the alternative route. Being a DR. you may not consider it worthwhile, however there are some things that do seem to help with 'quality of life' atleast - and even my own oncologist commented on how Turmeric had shown abilities to inhibit tumor growth.

Anyway, keep us updated on how your grandfather (and you) are coping and if there is anything else we can help you with please just ask and we will try our best.

Kind regards,

Juliana

[Leah]

Thanks Juliana and Pennyb.

I know nobody is the same and we just have to see what they say on tuesday. Its just so hard to find good info on what to expect. Its so good to have found people here who know so much about the options available to my grandfather. The trial looks interesting as does the cyberknife. I'll look into those in more detail. Has anyone here had the cyberknife treatment?

I think you are all amazing.

Leah x

[Ellie]

Hi Leah

So sorry to hear about your grandfather. Sorry haven't posted earlier, but have been in bed with a stomach bug since Friday.

If you want another case story, then my husband had a whipple in July 2008. We were told cancer had been removed but later told 3 lymph nodes involved. Chemo for 6 months (5FU) . Just before last session in Jan/Feb time, told spread to liver and terminal, with 6-12months to live. 2nd chemo (Gem/Cap) given but tumours were found to still be growing so hubbie decided not to continue as wasn't tolerating it well. Stopped all treatment December 2009, was pretty good for a while but then back pain showed spread to spine earlier this year. Radiotherapy helped with pain for a few weeks.

Your grandfather did exceptionally well to recover from his whipple so quickly! My hubbie is late 50's and was in hospital for 3 weeks afterwards. Took him a long time to get his strength back, too. It seems some people succcumb very quickly to pc, others exceed the doctors prognosis. My husband decided that he wanted to make the most of the time he had left, go out and enjoy himself and not get dragged down by more treatments which weren't helping anyway. Everyone sees it differently, as you will read on here. I have nothing but admiration for anyone who puts themselves through trials to find something which may help. It can't be easy undergoing difficult journeys to and from hospital, trying drugs which have awful side effects and spending your time being tested and scanned. I know it will help someone else along the line but it really must be hard to go through it all.

Whatever your grandfather decides to do next, I hope you will all find the strength to cope. I think we've looked at our situation as - prepare for the worst, but pray for a miracle. Wishing you all the best.

Ellie

x