andym

I am on 5FU at the minute (I actually finish it tomorrow after 30 doses) It did make me quite sick at times, it was strange as some months were better than others. I also got:
Bad taste usually lasts about a week
Sore mouth i.e. gums etc you can get good mouth washes for this
Sore lips they seemed to blister and can be sore but you get a very good paste for this
Skin dried up on hands and fingers, not much of a problem a good hand cream sorts this out although the tips of my fingers sometimes get sore but all in all not a big issue.
You also tend to get an upset tummy and run to the toilet quite a bit this seems to get worse as the months progress but you can get very good tables to sort this out.
My hair thinned but I still have a good head of hair.
Tiredness is a big problem but you have deal with it as best you can again it gets worse as the time progresses, you just do what you can, if I have plans in the evening I tend to rest alot more during the day.

My Minister advised me that I needed to be selfish and to look after myself first, that is hard espically as I have a wife and 3 year old son, but at the end of the day you have to be selfish so to speak and take care of yourself first. 6 months seems along time but it does go in quicker than you might think. I hope this helps and does not put you off I am glad I went through with the treatment.

Andrew

I am on 5fu and I get a 30ml injection each day for 5 days (every 28 days) Whats the 2 day IV? I was also told there was a tablet version maybe this is what the difference is, apparently the tablet is not the same as 5fu, but when taken the enzymes in your body convert the tablet into 5fu. In my case they would not give me the tablet as it costs more than the injections. Damm NHS!
Andrew

That was a long message! Anyway I had a whipple in 2006 carried out in Belfast, I spend less that 2 weeks in Hospital and 3 weeks after the operation I was playing lawn bowls again! Its intreasting you say you have lost feeling around your scar so have I. My scar runs the full length of my tummy and below the scar in the middle 6-7 inches I can feel nothing, no touch, hot or cold or pain – its actually quite cool a wee party trick LOL – did your feeling ever come back? And you mention the bile juices I get that also, I have only been sick once it was 3 weeks after surgery boy was I scared I though all my internal stitches were going to burst but it was fine. I think the biggest problem is getting used to the ‘bile taste’ but to be honest its not that often and really not the worst thing that can happen. A Whipple sounds harsh and I guess it is but at the end of the day you can lead a perfectly normal life. I have read you post on other sites and although this sounds bad but it is so good to hear that you are still around to tell your story.

God Bless
Andrew

I had a stent in place when I was diagnosed, it worked for a while but blocked and i turned yellow on a weekly basis, they talked about a drain for me but decided to try a bigger stent as the first stent shoud have stretched the ducts enough. The bigger stent worked although it was only in for about 4 weeks till I had the operation.