julygirl
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I agree with you about Mr Menon Katja. He did my whipple by keyhole on April 2009 (12-hour operation). I was diagnosed in York, and referred to St. James in Leeds.
Mr Menon is a wonderfully warm and caring surgeon, and he cares about each and every patient, and remembers the small details about everyone. On a six-months checkup, he took care to ask how my mum was, because I mentioned after my operation that she had her own health problems. How many other surgeons would remember this six months later?
Sylvia xxxxxx
Hello PGTips. Welcome aboard.
I reside in York, and had a whipples resection at St. James in Leeds, followed by six chemotherapy back in York.
I do not know much about PDT, and do not know whether St. James do it, but it is my understanding that St. James is the most specialised hospital in Europe for treating cancer, and have a lot of experience of treating CC. The treatment and care I received there are second to none.
As Kris said, there is a good site on Facebook (AMMF), and the AMMF Website as well, for more information within the UK. Myself, Gavin, and several others from this forum go on there. I am sure that Helen Morement, the founder, will be able to assist you with any queries you may have. Sending all my love and prayers to you and your mum, and hoping that you may find some answers to your questions at this very troubling time.
Lots of love to you,
Sylvia xx
My surgeon, Upper GI consultant, Dietician, and oncologist all told me that gaining the weight was more important than what I ate. They all told me to eat anything I could which would help me gain weight, which I did. I helped me no end when I had the adjuvant chemotherapy, as my body was able to fight off infections, and I kept my energy levels up.
My problem now is I am up to where I was before my resection, and would like to lose some weight!!!! xx
I would definitely suggest you eat healthily but allow yourself fats, sugar carbohydrates too, which I did. A balanced diet, mixture of all things, is the best, to ensure your body gets all its nutrients, and keep your energy levels up. All the best for you. Sylvia xxxx
Hiya all. I had a whipple last April, at St. James Hospital in Leeds, UK. There was involvment with one lymph node.
My surgeon Mr Menon suggested adjuvant chemotherapy to me, and referred me back to my local hospital in York for the chemo. I had six months of 5-FU adjuvant chemotherapy, which I tolerated very well. have gained all the weight I lost, and feel very well. Had some blood tests taken 2 weeks ago, and got the results back last week. All within normal range.
I would definitely push for adjuvant chemo if I was you. Even if there was no lymph node involvment, my surgeon said he would offer it as a matter of course. I would take anything that will help zap those stray cancer cells.
Good luck, and wishing you good health. Sylvia xx
Thank goodness it’s not just me then. Always look to make sure there are no signs of jaundice. Sometimes I get floaty stools and freak out. then remember that I ate a particularly fatty meal, and probably didn’t increase my Creon intake. Always check my eyes too xxx
My Upper GI Consultant and my surgeons both had no ideas how or why CC occurs, and think it is just the luck of the draw.
However, looking back over the years I am now wondering about several possible causes relevant to me.
1. I used to smoke until 7 years ago
2. For over 25 years I had GI problems, bloating, wind, alternation between loose stools and constipation (I am wondering whether I had something like ulcerative colitis without being diagnosed, or IBS). I never sought medical help for these.
3. I had two episodes of threadworms, once about 25 years ago, the other about 10 years ago. I treated myself with OVEX tablets.
4. Poor diet, high fat on occasions.
3. Very slim until 7 years ago when I gave up smoking, then I piled on the pounds quickly.All, or none of the above, could be disease related. I, and my doctors, cannnot confirm or deny them.
I read so much about people who have always led a healthy lifestyle, no smoking, drinking, watching their weight, etc, and still they succomb to CC. So it may be lifestyle, or just pure bad luck. The jury is out on this.
Sylvia xx
Carol. I hope you are okay. Congratulations on the wedding. The pictures on Facebook were lovely. I know you have had a rocky few weeks, being in hospice for pain control a few weeks ago. And you were not feeling too good on your holiday in Italy last week. I see that you are back in hospital again. I am sending all my love and prayers your way and hoping that you carry on fighting with your very positive attitude. Lots of love, Sylvia. god bless you. xxxx
For our UK members. I was treated at St. James Hospital in Leeds for ampullary cholangiocarcinoma and had the whipples operation by Keyhole (laparoscopic surgery). Had the operation April 30th 2009, so I have passed my one year point.
My surgeon was Mr K Menon. He was the first surgeon in the UK to do Whipples by Keyhole. I highly recommend him, not only for his skill with the keyhole resection, but also his very kind and caring manner. He is truly a wonderful and compassionate man, and he treats people from all over the UK, on referral from other hospitals.
To a friend again. My cancer was ampullary cancer, where the bile duct and pancreatic duct meet the duodenum.
Hi to a friend. I had my whipple at the end of April 2009, and there was involvement with one lymph node. I started 6 months chemo in July after recovery from the surgery. Will see the surgeon again in August, and am hoping for no recurrence. At the moment I feel very well, and have gained all my weight back again, and have a very healthy appetite. Certainly, chemotherapy is the best way of licking the beast after having the whipple. With lymph node involvement, no chemo is not advisable. Long term prognosis, I am not sure about.
After my recovery from the whipples, Mr Menon referred me back to York Hospital so that I wouldn’t have to keep traveling to Leeds, and I came under the care of Dr Kim Last, medical oncologist. I was on 5-FU once a week for six months. I had the chemo because the pathology report showed that I had involvement in one lymph node. All the tumour was taken out, and the chemo was adjuvant chemo, to hopefully kill off any cancer cells which might be floating around. No, it was not a trial. I tolerated it very well, my hair got a bit thinner, and I had runny eyes and nose and red hands and brittle nails, and only one incident of upset stomach, for which I missed a week of chemo, and it was tagged on to the end.
I forgot to add that after surgery I lost nearly two stones in weight. But I have regained all of the weight I lost. I have to take creons for the rest of my life, but that is a small price to pay.
And all I have to show for it are three tiny tiny scars on my abdomen, (like little dots), a half inch scar inside my belly button, and a scar of about 4 ” long in the pubic area where the tumour was removed. and that cannot be seen. the wounds healed within days. I have 6 monthly check ups, and am so far okay. Hoping for no recurrence. Love to all of you who are fighting this beast.
Yes Lainy. Dr Menon is an amazing surgeon. All the other nurses and doctors at St. James are in awe of him. And he is such a kind and compassionate too. Very warm and friendly.
My whipples wasn’t without it’s problems though. It was 12 hour surgery (takes a lot long by keyhole). Then I had problems with a fistula where the head of the pancreas had been cut away. I was vomiting bile for two weeks, and being fed on TPN for 3 weeks. Had a bowel infection too. But it was all worth it. The fistula healed on its own. Worst thing was the drainage bags. They were so uncomfortable, because one of the junior doctors changed them and did the stitches too tight.
If I understand correctly, keyhole surgery is considered for all ampullary cancer patients. Whether keyhole is used for higher up in the bile duct I don’t know. But Dr. Menon is a truly amazing man.
Ash, try to get to St. James. It is a centre of excellence in the UK, and the biggest cancer centre in Europe. good luck. xx
I was diagnosed with cc (ampullary cancer) in York Hospital. And was then referred to St. James Hospital in Leeds. I had a whipple operation last april by keyhole surgery. 1 lymphnode involved. Six months of chemo. The name of my surgeon was Dr Krishna Menon. He is the best in the business for cc so I have been informed, and he was the first in the UK to do the whipples by keyhole. He is in Professor Lodges Team.
