Whipple procedure

Kimm,

It is a while since you were due to have the operation. How are you? Are you on the way to feeling normal? I know it took me months to feel something like normal, but it is now over four years and I am OK although I don't know if any aches and pains are operation related or just down to getting old (over 80 now).

Dave

Hello Dave, I was interested in this post as I have been through everything you have written about this year. I had my whipples operation in Belfast on June 27th. During the op which lasted for 8.5 hours the doctor removed the gallbladder, duodenum, bile duct, pancreas head containing tumour, and part of the stomach. He informed me that it was like trying to stitch butter as I had 7 cycles of chemotherapy to reduce the tumour prior to surgery. Surgery was followed by 5 more cycles of chemotherapy to reduce to mop up potential microscopic particles that won’t show on a scan. My treatment finished last week. I’m awaiting a cat scan which is booked for the last week of November to allow the inflammation do dissipate and a meeting with the oncologist 1st week December to see if I am clear of cancer. The only difference I can see is the survival figures we have been told. I have been told by my oncologist using text and maps that if everything has gone well and the cancer has all been removed, I have a 75% - 80% chance of having a recurrence, ( cancer returning to the pancreas) also this recurrence will be 75% - 80% occurring between month 5 to month 23 after treatment. I’m a very positive person and 20 to 25% is a big target in my eyes when you start at 3% when diagnosed. I’m inspired reading your post and how well you are doing four years down the line. You’ve put a smile on my face this morning Dave. Regards mellee07. 

Mellee,

I think I was lucky that trouble with a full (gall stones) gall bladder causing a blocked bile duct required an operation to clear the blockage and samples taken during that raised the red flag very early on. I have never had to have chemo so far so it sounds to me you also had some luck in that you were diagnosed with enough time that what you have described could be done giving you the chance which you have wisely taken. I knew the brother of a very long term friend and he felt unwell was diagnosed with pancreatic cancer and was gone three weeks later. You sound positive and I admire you for that. As you know that operation is no fun and I still get discomfort probably from scar tissue, but where would I and others be if Dr Whipple had not worked the procedure out which was I believe many decades ago now (1930s I think). That especially as survival rates are getting better all the time as techniques and technology have improved. If you want just to  chat or have any questions you think I could answer just ask via this email system as I believe sharing experiences can help and knowing how the medics are sometimes poor at making things clear (because they don't know everything themselves) and our experience outweighs theirs as to how it feels. Keep smiling because you can!

Dave

My wife had whipple 6 weeks ago for non invasive large cyst on her pancreas which unfortunately was pressing on her bile duct preventing food digestion. Before the op she had a stent fitted to free up the duct. Biopsies were taken during the procedure which showed no cancer, but it's position meant the whipple was the only resort to remove it. However I'm on here to ask about post whipple eating. She struggles and can only eat small amounts, and feels hot flushes after eating. Does anyone else have this problem?

Hi Dave

Thank you for your message and a very Happy Christmas and New Year.

I had the whipple operation on the 19th August and it took 10 hours, I was in ICU for three days. Sadly for me there were complications, firstly a leak of pancreatic juice from one of the drains and secondly my stomach would not return to normal so that I could have proper food which meant I was on a feeding tube. I was in hospital for five weeks and probably came out too soon with the feeding tube. At home I was struggling without carers to help and I was being more and more sick with bile, day and night and not being able to keep food down and just sipping water. When I went to see the consultant for follow up he looked at me and wanted me back in the hospital immediately as I was deteriorating. It was really difficult to get back on the same ward but eventually after having to go via  Accident and Emergency and an acute care ward I got back and saw some familiar faces. This second time in hospital for another five weeks saw an improvement in my eating of normal food and less and less sickness. Sadly I got a blood clot when my Pic line was being inserted and am now taking anticoagulants which are making my hair fall out en masse. The pancreatic leak dried up enough just to have a plaster on it which has now come off and although coming home with a feeding tube this was removed at our local hospital a couple of weeks ago so now I am just trying to see what food I can tolerate alongside the Creon enzymes which I need to take with meals and snacks. My scar is healing up well and I have  more and more energy and can now sleep on my side using a pillow rather than on my back. I still get very tired and I think when I came home the first time and part of the second I was very scared and quite traumatised after this major surgery. I did not want to engage with anything or anyone, no TV, no books, no visitors. It may have been shock but its taken a long time to start to feel human again. Luckily the pathology lab reported no cancer present in the lymph glands and the tumour was benign so no further treatment needed but am still in touch with the hospital dietician for advice and support about my new way of eating and helping me with the current Creon shortage. I hope this kind of explain the last four or five months and thanks for remembering me. Hoping all is well with you.

Sincerely, Kim

Kim

So pleased to hear from you you can guess why as it has been a long time. From what you describe you have mirrored what happened to me although thankfully I only was in the hospital once for seven weeks. I had the leakage, the lack of wanting to eat, the feeding tube (which went on for many weeks after getting home) and worst of all the mental lack of engagement. Because it was covid time my only allowed visitor was my wife and even when she had made the required appointment to visit sometimes I had to phone saying don't come because I have to go for a scan of something and sometimes she would arrive and I could only talk with her for a few minutes before I just couldn't continue as I was mentally washed out. Certainly the actual operation was the easy part. If Jaybees (see above) reads this and your Update was it may help a little with how his wife is feeling. Anyway it sounds like your recovery is underway at last so keep in touch

Dave