Ampullary carcinoma, Whipple, FOLFIRINOX - out the other side and looking to be part of any discussion on any of these

I'm aware that this is a very rare form of cancer, although the surgery and regimen of chemotherapy are a bit more common. Anyway, I had the procedure a year ago and, after six months of FOLFIRINOX chemotherapy and 3+ months to recover, I'm finally able to return to work and things. There was no discussion I could find to participate in at the time, so I'd be more than happy to share experiences, tips, information etc with anyone out there who needs it.

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  • Hi Luke. I had the whipple procedure 9 months ago for duodenal cancer. I was supposed to have adjuvant chemo within 12vweeks of the op but was still to poorly to go through it. The next time I saw the oncologist he refused to do the chemo as he said too much time had passed ( 4 moths). I was told before my op I might never fully recover, but hey you have to get cancer gone. I'm still very weak and can't even put any weight back on. I'm just hoping it doesn't come back because I didn't have the chemo. Good luck!

  • Obviously I'm not qualified to give medical advice, but the nurses told me that I could basically eat what I liked to put that weight on! Which I tried to do. And those Huel drinks (other brands are available) were quite good for adding calories when you don't feel like a full meal. Other than that, I think I slowly built my strength up by a combination of gentle exercise - a little walk every day - and giving in to the fatigue when necessary. It's such a massive operation, you know? Power to anyone who's gone through it. Wishing you all the luck in the world at getting that strength back. I remember asking my nurses when I'd be back to 'normal', and they said that that wasn't a good word to use! Which I kind of get. It's such a massive change to the body. Because of the chemo, I can't really discriminate within my recovery between what was the operation and what was the treatment, but it certainly took me a good 9 months post-treatment to be able to do things like walk up stairs without stopping. Do be kind to yourself. It's massive, this. Good luck to you too.

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  • Obviously I'm not qualified to give medical advice, but the nurses told me that I could basically eat what I liked to put that weight on! Which I tried to do. And those Huel drinks (other brands are available) were quite good for adding calories when you don't feel like a full meal. Other than that, I think I slowly built my strength up by a combination of gentle exercise - a little walk every day - and giving in to the fatigue when necessary. It's such a massive operation, you know? Power to anyone who's gone through it. Wishing you all the luck in the world at getting that strength back. I remember asking my nurses when I'd be back to 'normal', and they said that that wasn't a good word to use! Which I kind of get. It's such a massive change to the body. Because of the chemo, I can't really discriminate within my recovery between what was the operation and what was the treatment, but it certainly took me a good 9 months post-treatment to be able to do things like walk up stairs without stopping. Do be kind to yourself. It's massive, this. Good luck to you too.

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