1

(4 replies, posted in General Discussion)

Heaven has gained another angel.  Carol Melvin, a dear friend, passed away at 4.30a.m this morning in her husband George's arms.  She did so much to raise the profile of cc, and raised money for Helen Morement's charity AMMF. 

She was the bravest lady I have ever had the pleasure of knowing, and was so kind and comforting to me on my diagnosis.  Rest in Peace Carol.   Lainy, I am sure Teddy will be there to welcome her to the cc family in the sky. xx

2

(186 replies, posted in Hospitals)

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

3

(11 replies, posted in Introductions!)

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

4

(21 replies, posted in Introductions!)

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

5

(12 replies, posted in Introductions!)

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

6

(5 replies, posted in General Discussion)

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

7

(38 replies, posted in General Discussion)

All I am getting is the tree too.  Will try again next Thursday!!!

8

(15 replies, posted in General Discussion)

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

9

(15 replies, posted in Good News / What's Working)

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

10

(186 replies, posted in Hospitals)

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.

13

(15 replies, posted in Introductions!)

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.

14

(15 replies, posted in Introductions!)

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.

15

(15 replies, posted in Introductions!)

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

16

(15 replies, posted in Introductions!)

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.

Katja,

You are right.  The treatment at St James in Leeds is second to none.  I was diagnosed with bile duct cancer last year, at the ampullar of vater, where the bile duct and pancreatic ducts meet the duodenum.

I had a whipples operation at St James.  Mr Menon was the surgeon.  And get this, he did the operation by keyhole surgery.  12-hour operation.

Mr Menon is an absolute darling.  The most kind and caring doctor I have ever met. Exceptionally warm man.  Kudos to him.   All the medical staff were in awe of his surgical skills.  He apparently was the first surgeon in the UK to perform whipples by keyhole.  Amazing man.   The daughter of a friend in my support group is godmother to Professor Lodges children.   St James Bexley Wing is the best cancer facility in Europe so I have been told.

18

(21 replies, posted in Introductions!)

Well, I had my CPX test on Monday.  Anaerobic Threshold 11.3.  Normal Gas Exchange Data.  No Ischaemia.   So that means I am fit enough for the trauma of recovery after surgery.  What a relief.  I was so sure that I would fail the test.  But it was a doddle.  Easiest bicycle ride I've ever had :-) .   Have a pre-op talk with the Leeds Consultant, Dr Prazad, on 20th April.  Then after that, just sit tight and wait for a date for the surgery.  It is the waiting that is the worst thing.  Just want to get it over and done with.  I worry that every day of waiting is one more day for the cancer to grow and spread.  *(actually, it is just as well I am waiting, because I have a virus at the moment, a sore throat and tickly cough, so best to get the bugs out of the way first).    every day of waiting seems interminable.  Never known such stress before.  Guess from now on my life is going to be full of stress.  Operation, recovery, scans, tests, more tests.  for the rest of my life (however long that may be), the big C will always be there, lurking in the background, never gone, ready to rear it's ugly head.  Cancer sure changes people.  I am a different person to the one I was two months ago.  On tenterhooks.  Oh I wish the clock could be turned back.    Sorry for the gloom, but I am feeling low today.  First day that I have really cried.  Think the enormity of this thing has finally hit me.  Does every one suffer this?  weeks of denial, and then, wham, all of a sudden, reality, and fear, and tears.  Take care all of you for now.  Will try to cheer up for my next post.  Ciao. xx

19

(21 replies, posted in Introductions!)

Hello all my wonderful new friends.   I went to see my Consultant today, expecting the very worst, so that at least I couldn't get any lower.  The results of all my accumulated tests are better than I dared to hope.  The MRI and EUS showed that the cancer is apparently confined to the ampullary area and doesn't appear to have spread.  Also, the enlarged Adrenal Gland is benign.  So, Leeds St James Hospital are going to operate on me provided  I pass the CPX Test.  Hope to have the operation by the end of the month. 

There is still the worry over what may be found when I am opened up, but will cross that hurdle when I get there.  I am just so grateful to be given this chance.  Know I will never be cured, but if my life can be prolonged, that is something. 

All you lovely people have been through similar experiences, and all of your stories are slightly different.  I think we all share a common bond because of this dreadful disease, and I am so glad to have found this forum.

By the Way, Marion, Ron and Devoncat.  The surgeon who will undertake the op is Dr. Krishna Menon (scuse spelling).  I googled him and found he has years of experience.   Professor Lodge apparently deals more in Liver Transplantation these days, so my cancer support nurse informs me.

Take care.  Will be back soon with more updates.  Be brave everyone, and take care.

20

(21 replies, posted in Introductions!)

Sorry Ron, just opened the link you posted and it answered my question.  He is based in Jimmy's.  So fingers crossed, if I can have surgery, I am hoping he is the man.

21

(21 replies, posted in Introductions!)

Hi all.  Thank you for your kind words of support.  I have just been reading through them all. 

Ron and Devoncat.  I will bear Prof Lodge's name in mind.  Is he at St. James Hospital?  I was there last week at the Bexley Wing for my endoscopic ultrasound scan.

I believe that if surgery is an option for me, then the operation will be performed at St. James.  It is quite possible then that he might do the operation. 

My consultant in York is Alistair Turnbull, a lovely man with a very kind bedside manner. 

I await Wednesdays outpatients appointment with a great deal of trepidation, and these next few days will be dreadful, I know.  having difficulty sleeping because this terrible disease is constantly on my mind.  It is lovely to be able to know that we can all on this board share experiences.  LIke the old saying, a problem shared is a problem halved.

God Bless all of you.  Till Wednesday, bye for now.

22

(21 replies, posted in Introductions!)

Hello everyone.  I am newly diagnosed and just trying to take in all the information at the moment.  After suffering jaundice for a couple of weeks I was admitted to hospital for tests here in York.  The preliminary blood tests showed obstructive jaundice.  I had been itching for several weeks prior to the jaundice.

Then had a barrage of tests, including CT Scan, ultrasound scan, ERCP and biopsy, and placement of a plastic stent in the bile duct, where it showed I had a tumour.  After 9 days in hospital I was discharged, and attended the outpatients clinic the following week, where it was confirmed.  I had choliangiocarcinoma.  The day after this, I had an MRI Scan, and then a week after, an Endoscopic Ultrasound Scan. 

The last two tests are, I believe to stage the cancer.  I am due back at the outpatients next Wednesday, where I will be told the results of all the tests, and whether I am a suitable candidate for the Whipples procedure or not.  It is the "IF NOT" bit that worries me.  I would rather have the OP, because I suspect that is the only way to cure this thing. 

I will update you all next week to let you know the outcome.

So glad I have found this site.  It's nice not to feel alone. 

bye for now.