Hi all,

It's been a long time since I posted so i'm delighted to see Randi posting the exact same topic as me!

I just wanted to check back in and let you all know that it's four years to the day since my Dad was diagnosed with cholangiocarcinoma after being jaundiced etc. He had a Whipple in January 2010 and then onto a trial -Bilcap. I still feel glad that he had the chemo arm of the trial. He is now onto yearly scans (I think) and is enjoying life as fully as possible (can't really eat pizza very often but my mum's constant supply of Creon is the only reminder of those tough days four years ago).

Since 2009 I've had two children and a third due in January-my dad is such an incredible Grandad.

I just wish there were more people who visit this site and leave with the same outcome my Dad and I have.

Love to you all and best wishes for the festive season.
Kate

2

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

Wonderful news Eli, congratulations.
Percy, my dad (malc2073) would I'm sure be very pleased to see Wikipedia updated. Thank you for trying with this.
Kate

Great news Dianne-hoping to keep hearing the parallel good news from you. Let's hope that many others can join you, Randi and my dad.
Kate x

Hi Jeff,
I love your attitude - wonderful.  It makes me so sad that people in the US end up spending their life savings on being ill.  In the UK we are losing our national health service which is also sad.
My dad had a whipple like you and has just had his two year clear scan today.
I find your four masses in your liver baffling - were these seen immediately after your surgery?
I look forward to reading more from you and hope that something gets resolved quickly re your liver...
Here's to no 1: life as long and as happily as possible.  You've certainly made me stop and think about valuing each day.
Kate

Hi all,
Sorry I don't get around to posting as often as I'd like to.  I guess my dad might be along soon but thought I would let you all know that he has the fantastic news of another clear scan today.

A bit of background in case anyone's interested: dad (58 at the time) presented with jaundice etc in Dec 2009.  He had a Whipple at St James in Leeds in Jan 2010. The surgeon (Mr Menon) had got clear margins (just) and there were 7 lymph nodes involved.  He was accepted onto the chemo arm of the Bilcap trial and went through six months of Xeloda.  Since then he's had six monthly scans - today he was told he will move to scheduled yearly scans.

Needless to say we are all absolutely over the moon.  The oncologist told dad that now he has passed two years, his chances are greater and greater for survival.  We all know just how lucky he has been and are so so grateful.

Best wishes to everyone and apologies for not being around more!  I'm a bit busy myself now with two children - my whole family's life has changed such a lot since my dad's diagnosis.
Kate

Hi Duzalot,
My dad had a whipple in January 2010 and had a fairly straightforward recovery.  I just wanted to add a couple of points that occurred to me.
1.  My friend who's a doctor said to my dad about laparoscopy 'there's a saying in medicine - big mistakes are made through small holes' - although I guess a small hole would have a much quicker recovery time.
2.  In the UK we don't seem to have any approach to the diet in whipple patients - although we asked and asked they just gave my dad regular hospital food - his first meal after the whipple was 5 days later (when they were sure he wasn't 'leaking') and they gave him sausages!  Can you imagine!  Anyway it didn't actually do him any harm but after he got home my mum was quite careful with what to feed him.  He found that he has to take Creon constantly otherwise he gets diarrhea - I guess from malabsorption.
Fingers crossed for your stepmum.
Kate

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(5 replies, posted in Members' Cafe)

Hi all,
Just wanted to post to apologise for not being around much recently.  I have been a bit busy having another baby! Amelie was born a fortnight ago, a sister Joseph who was born just after my dad's whipple and as he started chemotherapy. Think my dad felt a good deal better this time around!  Another baby for him to carry on one of his AMMF charity expeditions.
Kate

8

(15 replies, posted in Members' Cafe)

Hi All,

Just wanted to point out that Helen and AMMF are doing lots of awareness raising in the UK-visit AMMF's facebook page to find a link to listen to Helen and  my dad on the radio this morning.  There are loads of other things going on each day including some incredibly moving stories.

Kate

Hi Eli,
I just wanted to say that after my dad's whipple (with similar results to your wife) the surgeon said he would need creon/enzymes for life. When he was on chemotherapy he got bad diarrhoea, which we thought was down to chrmo, but in hindsight he'd becom laid back with the creon and really needs it before everything he eats. The surgeon said he could double/ treble the dose and it would not be harmful-the diarrhoea is usually down to malabsorption after the whipple. Now my dad has been able to gain plenty of weight, but he still is careful to always have enzymes and eat healthily.

I really hope that your wife makes some improvements and is able to gain a little-I'm currently on steroid treatment for colitis and can vouch for its ability to make a person gain weight-I've had iv hydrocortisone and prednisolone and gained huge amounts (but I'm also pregnant so who knows what it's down to). With fingers crossed for the scan and positive results from the chemotherapy.
Best wishes,
Kate

Hi Percy,
Thanks for your very informative posting.  I wonder if it makes a difference that with Richard's wife we are talking about adjuvant therapy with negative margins.  I noticed the Bilcap protocol says that Cap seems not to be as effective with advanced CCA.  Is there some evidence you have seen that Gem also works better in adjuvant therapy?  The reasons for the Bilcap trial using Xeloda seem to be based on it's positive results with colon/pancreatic cancers.
I'm wondering what a study of Cap v Gem would yield.  Also interested in why you think Gem and Cap together might be more effective?  Did you find something which shows radiation successful after a resection with good margins?  I seem to find studies which say radiation is usually used with positive margins?
Thanks again.
Kate

Thanks Richard, it's been nearly two years since I did my research but I think I had read most of those-I can still see why our oncologist said'what would we radiate?'.  Margin status seems to play a more significant role in RT .

I had not found a Bilcap protocol of 75 pages though-would be very interestedto read that.
What chemo/radiation has your wife been offered?
Kate

Thanks Percy - I had seen the BILCAP poster when Helen first posted it.  I have read pretty much everything that is found on the internet about BILCAP - I just have to presume there is more evidence within the medical community which is not available for us laypersons to read!

That's hilarious!  Imagine being the one whose job it was to set the timers.  Utter panic.
I once went to a firework display in Monaco to celebrate the american winners of an international firework competition - it was like that for about an hour!

Hi all,
I find a lot of the poster vague and a bit confusing really.  Richard points out that the poster states '41 (18%) patients had died within 24 months' which should logically lead us to assume that 82% had not died within that time.  This does not tie in with the graph.
I also find the statement 'To detect an increase in 2 year survival from 20 to 32%' confusing.  I wonder where this evidence comes from - I have never read anywhere that 2 year survival of resected patients having no adjuvant therapy is 20%.  It sounds more like the current 5 year survival for resected patients?

Not to put too fine a point on it, but I do not think the 2 year survival is as significant as 'relapse free survival'.  Richard is right, it would be interesting to compare the data but it cannot be considered significant at this point.  It is important to remember that all patients have undergone a macroscopically complete resection - so we would really hope that a good proportion of these are still alive within 2 years - if they are cancer free is a very different question.

I suppose what Percy is saying is true of all cancer 'there is no CURE' - just more and more effective ways of removing it and minimising the likelihood of it returning.  My personal attitude would have been to encourage my dad to take or do everything possible to stop it coming back.  We were never offered radiation and the doctor said 'what would we radiate? There's nothing there'.  Certainly the evidence Percy found would suggest the efficacy with margin positive patients.

Marion, thanks for that info about UK v US - I've sometimes wondered how different things would be if we could effectively just ask a doctor to prescribe something we wanted rather than being at the mercy of the NHS, but I just find it so difficult to imagine the accompanying financial/travel considerations that so many US patients encounter.

Kate

Hi Richard,
I believe that the evidence is in the process of being compiled but unfortunately in this case the internet is not a fount of all knowledge.
You will notice that mostly the trials Marion mentioned are phase III.  My dad's oncologist points out that to get to that phase they must be based on some evidence, and has a strong conviction that the results will be positive.
Treatment varies wildly depending on where you live - in the UK we have a fairly strict protocol with few deviations.  In the US there seems to be much more flexibility for doctors to make their own recommendations.
Kate

Hi Desmet,
We are in the UK - Yorkshire.  My dad is Malc2073 and he had whipples in Jan 2010 as well!  I hope you are doing as well as he is - clear scan in August and now on 6 week tour of Europe in his new car - having lots of 'little did I think' moments along the way.

My dad was part of the Bilcap trial - we'd be interested to hear if you were offered/took part in it.

Very best wishes to you and welcome aboard!
Kate

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(7 replies, posted in Members' Cafe)

Andie,
Lainy is so right, it is so normal not to want someone you love to suffer, if would be a selfish thing to wish them more time if it is painful.  You did absolutely the best for your dad and he is still so proud of you.

Lainy, you crack me up - I feel like I can imagine the muttering under your breath when you see another single man and compare him to Teddy.  A friend who'd lost her husband said once that although she was alone, she wasn't lonely - something to aspire to I think.

I think I agree with your mum Andie, especially when yet another football match or gadget programme starts on TV!  Just finishing the Millenium series - loved them.

Love to you both xx

Just thought I would post to let you know that my dad's six month scan was all clear again.  He is 19 months post whipple.

He has been really well, back to swimming and walking miles with his grandson on his back.  He and my mum had a weekend of parties to celebrate their 60ths and retirements (although he decided not to retire after all and just work part time!), and the resulting food consumption set him back a little - so he's being really careful with the creon etc.

My parents set of yesterday for a six week tour of Holland, Germany, Switzerland, Italy and France.  Should be wonderful.  We all feel so incredibly lucky.  I'm still keeping a keen eye on the Bilcap trial to hear if they have discovered any benefit from chemo after resection.

Kate

My dad is also 19 months post surgery for a small (2cm) tumour with clean margins but 7 positive lymph nodes.  He had 6 months xeloda.  His scan results this last thursday said all clear.

Not sure where doctors actually get this 50/50 recurrence rate from, but it seems that as Sue says, the longer you go, the less likely it is to return.  Although there will always be exceptions to that.  The trial that my dad is on is measuring progression free survival with or without chemo after resection with 2 year survival as a primary goal.

Great to hear you're well Snezzie!
Kate

Just_Jill wrote:

Thanks Ladies.

But we need statistical analysis.  Collection, examination, summarization, manipulation and interpretation of quantitative data provide underling causes, patterns, trends, etc.

Marions, don't take this the wrong way, but, this sounds like some government run mumbo jumbo.  It would be simple enough to poll the members here with such choices as:

did you  or you loved one, have chemo following surgery....Yes, or NO
Date of Surgery,
Date of Death, or
Length of Survival thus far.

Maybe I am too simple minded....

Jill,
This is pretty much what the BILCAP trial is measuring.  It takes time but it has been collecting participants for a good few years now.  Doctors hope it will show the benefit or otherwise of chemo following surgery. 
Kate

Your dad really sounds to have been having a bad time.  Has he started on the chemo?  Because if he has not recovered well from the whipple it will make it very difficult indeed.

The chemo or not chemo decision is a topic we have often talked about - my dad's trial (Bilcap) is assessing whether there is benefit in chemo after surgery.  But you have to be fairly well to take chemo after a huge operation.  Does your dad take plenty of pancreatic enzymes?  My dad has to take loads.  Is he eating solids yet?  Did he develop other complications like leaks after his op? Does he have a counsellor?  Some people suffer with depression during this time - can he explain why he is not eating?

My personal feeling would be if he can stand the chemo/radiation then I would want him to have everything they offer as a sort of extra insurance (of course there is no proof yet, but these studies must hopefully be based on some ideas), but he must be well enough to take them.
Best wishes to you and hoping he feels better soon.

22

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

Excellent news Randi,
You're right about the recurrences.  Another thing my dad was told was that he would most likely know before the scan if things weren't right.  So if you are feeling good up to October then fingers crossed the scan will confirm that!
Enjoy your summer one day at a time x

23

(5 replies, posted in Members' Cafe)

I'm not speaking from experience Lainy, but wondering if something to keep you busy would help.  Presumably everyone's different, but perhaps you could volunteer somewhere, do something that will make you feel you passed a worthwhile day.  Do something that Teddy would have liked to do, or maybe do something that he would have not enjoyed if you feel like it'd upset you without him.  I'm sure there will be tears but if you could raise a smile or two he'd be very happy.
It sounds like a priority will be keeping cool?

24

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

What wonderful news Nancy,
Congratulations!
Kate

Fantastic news Tom and Ben,

I'm amazed, hope the doctors are studying Ben and learning from him!  So pleased for you both to have a chemo free summer.