Whipple procedure

Hi Sue mol and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I'm not a member of this forum but noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list.

I'm sure some members of the forum will be along shortly to share their experiences with you.

x

Yes things most definitely get better but it takes time. After having surgery I couldn’t keep anything down but gradually I was able to eat more and more. 3 years later I can pretty much eat anything, although take a gastro tablet to neutralise acid, and am a very healthy (if not slightly pump) weight lol x

Thankyou for the reassurance, did you have to have chemotherapy following your surgery?

Hi there,

Well done for getting through the procedure, I remember when my mum had it 6 years ago it was tough at first. She’s returned to her normal healthy weight since then, but at the start she was drinking one high calorie milkshake a day just to try to put on a little bit of weight which did help. She found that the correct dose of crein for her was very trial and error, she now takes 3 per item of food and she finds that’s perfect for her, some people need more some need less, speak to your doctor if you feel this current amount isn’t right for you and they can advise you with what to do! Mum kept taking ondansetron for her nausea which she had after the procedure and during chemo and she said that she never really suffered with it while on the medication so definitely worth getting ahold of some of those!

all the best for the scan!! I posted my mums story a little while back, if you’re ever interested! it’s called “there is hope”.

Max 

Hi there and a very happy Easter to you.  Yes I did have chemo after surgery; they had always said it would be necessary as a “mop up procedure “ but when they found 6 out of 17 of my lymph nodes were also infected, having removed some of the nodes during Whipple, it become essential! I had 24 weeks of chemo; 2 doses every 3 weeks. It was pretty exhausting but wasn’t anywhere near as scary as I thought it would be……

Hi sue mol. My husband was diagnosed with pancreatic cancer in May 2022 and had pppd surgery to remove the cancer and went onto have folfirinox chemotherapy from Sept 2022 until Feb 2023. The chemotherapy was tough for him to say the least but keeping strength throughout it meant just taking in calories  eating anything that you can ....even McDonald's burgers (I would drive out to get him one) if it meant he would eat something. He couldn't face drinking water,  but ginger beer (non alcoholic) went down well. He is doing well at the moment and we enjoy every day and I wish the same for you too x

Hi Sue mol, I experienced similar after my Whipple procedure. I discussed it with the dietitian and they slightly increased my dosage of creon. Prior to surgery I gradually lost 3 stone. I then had stents fitted to my bile duct and pancreatic duct this enabled me to put a stone back on. Post surgery I again lost a stone in weight, it took a while for my appetite to pick up. I have put that stone back on now and my appetite is back to normal. I am currently on 3 protein drinks a day, these I get on prescription so worth asking your care team or dietitian to get that sorted. My biopsy showed 2 out of 18 positive readings on lymph nodes removed so just putting weight on as best as I can prior to starting with chemo on Tuesday.

How are you getting on with chemo? My results returned following whipple surgery, 3 out of 18 lymph nodes were cancer also a nerve? So o see the oncologist this Tuesday to sign the consent . 

Hi Sue, was a bit sick and suffered with very loose bowels. My chemo came at a time when then pharmacy could not supply me with my full strength Creon 25000. I was supplied Creon 10000 and was doubling up. I kept in touch with my care team and due to a drop in weight they asked me to attend the hospital clinic for blood test. All came back OK. And whilst there I was prescribed some Creon 25000. Since going back on these I have been much better and my symptoms have almost reduced to nothing. At this time not sure if it was the chemo, lack of Creon or a combination of both thatcaused problems on my first week. Will be on my second cycle on Wednesday and I am now better informed about how to use the anti diahorea meds so keeping fingers crossed. Hope all goes well with you.

Hi Sue , my Mum had the Whipple to remove a tumour on the head of her pancreas in September last year -she found the support of the medical team and dietician really helpful in terms of managing the correct dosage of Creon and also helping her with other symptoms such as bloating and generally feeling rubbish.

You have done amazing to get through the op ( it’s a blooming huge one) and yes, you are at the early stage - have you reached out to your medical team to share every little symptom you are concerned about ? 

Good luck with your scan results and next steps