Advice and Information on possible Whipples

[Jimbo]

I was diagnosed with Pancreatic Cancer in December 2010, and was described as inoperable as I had spread to the liver. I have recently completed 12 months on Chemo - Gemcitabine and capecitabine. Needless to say that has been a marathon, but after the 12 months, the consultant sent me for a further MRI and PET scan, and believes I am now possibly a candidate for surgery, and I have an appointment with said surgeon on the 4th April

I have read numerous of the posts in here headed Whipples but haven't really got the information I seek.

Basically, I can understand the risks inherent in the surgery, I can understand the recuperation and pain etc, but what I want to understand is what quality of life I can expect 6, 12, 18 months and beyond that surgery.

I'm a self sufficient person who hates to rely on others, I am very medically adverse (don't like whinging to my GP) and I do not want to be, or feel, a semi invalid, and incapable of doing the things I like - walking, swimming, sex, playing squash and badminton, and yes - eating and drinking! I have also not worked for 15 months and would want to resume that too.... but will I be able to travel, stay away from home and be independent which is what my job entailed.

Can anyone help with this longer term understanding from their experiences?

Jim

[AnneD]

Hello Jim,

I'm pleased to see that your chemotherapy seems to have made you a possible candidate for surgery. I had a Whipple's procedure in December 2010 and since I had had a distal pancreatectomy in April 2009 it was a completion pancreatectomy - in other words I have no pancreas. As a result of that I am insulin-dependent diabetic and need to take digestive enzymes. Nevertheless, my quality of life is good. I have no pain. I am retired from work but quite busy with my mother, husband, children and grandchildren. We go away on holiday but only in this country. I don't play strenuous sports but never did so there's no change there! I've been having three-monthly scans and check-ups since last December but I don't rely on others to look after me and in summary have a pretty good life after my surgery.

You seem to have a good attitude in wanting to be independent.

Wishing you good luck and I hope the appointment goes well on April 4th.

Anne

[suef]

Dear Jim,

Like you, I am fiercely independent and also energetic. When I had my Whipple two years ago, my big fear was that I would have to depend on others, but in fact that was not necessary. I had a tumour on my pancreas, which had doubled in size in 3 months so was advised to have a Whipple. The surgeons took out the head of my pancreas, my gall bladder, 35% of my stomach, my pylorus and several metres of intestines. The tumour turned out to be non-cancerous. I was in intensive care for 2 days and in hospital for a total of 3 weeks. For 2 weeks I could not eat or drink anything, then just had very small meals. But after 3 weeks in hospital, I went home, escorted by friends, but had no one to stay overnight, and at no time did I have anyone staying with me - and it was bliss to be alone after being in hospital and surrounded by people! I gradually got back my strength and now, 2 years later, do more or less what I used to do. I still have more energy than many of my friends. I eat 6 small meals a day and take Creon to digest. If I want to eat something not really recommended, I go ahead and eat it, but take lots of Creon and make sure I am near a loo, just in case. But, honestly, as I said in a previous post, life goes on! And I did the Hadrian's Wall long distance footpath (rather slowly) last September. I think the important thing is to listen to your body and not do too much too soon. Good luck, and let us know how you get on!

Sue F

[PCUK Nurse Jeni]

Jim,

Great news that you have become operable! Congratulations to you and your team for the marathon. Let's hope it was all worth it! I am sure you will have been inspired by Anne and Sue's stories.

Very well done, and hope the op goes well!

Jeni.

[Trevor F]

"I like - walking, swimming, sex, playing squash and badminton, and yes - eating and drinking! "

Sex, yes................ but if this has spread to your liver I would not advise you to drink at all

[suef]

That's a good point from Trevor F. I only learnt after my Whipple that I cannot drink alcohol - and my tumour was not cancerous and had not spread to the liver. My surgeon (a French lady) told me that I can drink a mouthful of champagne once a year if I am at a wedding, otherwise nothing, no wine, no spirits, no beer, nothing! I have got used to it now but just occasionally would murder someone to have a glass of red wine!

[Trevor F]

suef wrote :

> That's a good point from Trevor F. I only learnt after my Whipple that I

> cannot drink alcohol - and my tumour was not cancerous and had not spread

> to the liver. My surgeon (a French lady) told me that I can drink a

> mouthful of champagne once a year if I am at a wedding, otherwise nothing,

> no wine, no spirits, no beer, nothing! I have got used to it now but just

> occasionally would murder someone to have a glass of red wine!

Depends who you speak to. Some people say it's OK to drink in moderation. I don't any more although the occasional beer is harmless.... try the low or no alcohol stuff. But no wines or spirits. Personally I prefer the sex.

[PCUK Nurse Jeni]

Hi Folks,

I have had a chat with some of the nurse specialists from around the country with regard to the advice they give to their post - Whipples patients and drinking alcohol.

The answer is in keeping mostly with Trevor's, in that occasional alcohol is ok to have. I think the fear is for pancreatitis which happens with large consumption of alcohol. They did not stipulate whether this was no spirits or wine - just said "alcohol in moderation occasionally is not harmful". I think Trevor is right, it depends on who you speak to and the Europeans seem to be stricter!! I had a tutor once who used to say "things in extremes cause problems", so I think as long as it is not an extreme, it should be fine to have the odd glass of wine and enjoy it!

So, there you go!!

Jeni.

[Jimbo]

Thanks to those who have posted. I remain interested in any other 'holistic' views of recovery and impact.

Jim