katja
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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.
KateGreat 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 xHi 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.
KateHi 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.
KateHi 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,
KateHi 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.
KateThanks 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?
KateThanks 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!
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.
KateHi 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!
KateMy 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!
KateJust_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.
KateYour 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.
