1 (edited by Katja Sun, 28 Feb 2010 15:45:33)

Topic: BILCAP/ABC trials

Hi,

I have been reading this forum for a while and really appreciate everyone who comments, so I would like to add my bit if I can.

My dad was diagnosed with CC in December and had his Whipples 13th Jan.  He has been recruited onto the BILCAP trial here in the UK.  We don't know which arm he is on yet.  If anyone has any advice or experience of the trial I'd appreciate it.

One thing I can't find out is - if he has a recurrence then have the results of the ABC-02 trial now been adopted as standard treatment in the UK (GemCis?)?

I will be asking the doc (under Prof Lodge at Leeds) on Friday and also about other possible treatment in case of recurrence.

Thank you again to everyone who comments - at such times it's vaguely comforting that there is a little unwilling community of us.

Kate

Re: BILCAP/ABC trials

Welcome, Kate, to our wonderful family! Can't help out on the things you   asked about but my husband, Teddy had a Whipple 4 1/2 years ago and is now 77. Yes it returned last year and if the tumor is small enough, under 7nm you can try Cyber Knife. Only 3 - 5 treatments and it spends the next year dying off. It is wonderful. A miracle. You father will probably have a regiment of monthly LABs and visiting his Oncologist every other month or so, at least that is what we do. Must keep vigilant and most often you can keep it at bay. Teddy's next PET Scan is March 17th. We know he has 2 new tumors but they are very small and for no apparent reason seem to be shrinking on their own. We will take it!! Please keep us posted.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: BILCAP/ABC trials

Welcome Kate,

Glad you decided to post.  I don't know the answer to your questions but there are several UK members and I am sure you will be hearing from some of them shortly.  None of us want to be here, but all of us are happy to be part of this wonderful community.  Yes, it is comforting.  Keep coming back.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: BILCAP/ABC trials

Hi Kate,

Welcome to the site, although I am sorry that you have to be here. I am also in the UK, in Dundee and I was my dads carer during his fight with CC. Please come back here often as you will get a load of support from us all. And I am sure that you will get answers from someone to the questions that you will have.

My dads CC was inoperable and his treatment was PDT with the possibility of chemo at some point. He also had a metal stent inserted. Perhaps you could speak with Prof Lodge about the possibility of PDT as a treatment for your dad at some point. My dad had his PDT at Ninewells in Dundee, but I think they are doing the same treatment as part of a trial in London, Nottingham, Bristol, Liverpool, Wincester, Basigstoke and the North Manchester General. I am sure that Prof Lodge will know more about this.

I hadn't heard of the Bilcap trial until today and I'm assuming that this is the trial that your dad is on,

http://www.cancerhelp.org.uk/trials/a-t … allbladder

As things turned out, my dad was not suitable for chemo but from speaking with his oncologist at the time, if they had done chemo then it would have been the Gem/Cis combination. But I do not know if that is now the standard treatment in the UK, perhaps someone else will know. As to Cyberknife, I think that there is only one facility in the UK that does this procedure, in Harley Street in London. I remember seeing something on the news here in the UK about it last year and I think I posted the link to the piece on the website so perhaps you could use the search function here to look for it.

My best wishes to you and your dad,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: BILCAP/ABC trials

Kate,
I have no knowledge of the trial, but I wanted to wish your dad good luck on it. Trials are so important and I want to say Thank you to your dad for helping the larger cc community learn more about treatment options.

By the way are you from Czech? I know know several Czech Katjas and I always thought the name sounded so regal and elegant.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: BILCAP/ABC trials

Hi Kate,

A link to the cyberknife centre in London -

http://www.cyberknifecentrelondon.co.uk/

Best wishes,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: BILCAP/ABC trials

Kate....(Katja)...To answer the question re: the Gem/Cis combination yes, it has become the standard of treatment for Cholangiocarcinoma. The way I understand it, the BILCAP PHASE III Clinical Trial is to evaluate the efficacy of adjuvant chemotherapy of XELODA.  http://science.cancerresearchuk.org/res … ?version=1

Best wishes coming your way,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: BILCAP/ABC trials

Hi Kate,

Here's my first post on the website in which I talk about my dads experiences with PDT -

http://www.cholangiocarcinoma.org/punbb … hp?id=1940

I hope some of that is helpful in explaining what he went through with that treatment. If there is anything specific that I can help with then please just ask and I will help if I can.

Best wishes,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

9 (edited by Katja Tue, 02 Mar 2010 13:32:49)

Re: BILCAP/ABC trials

Hi
Just to let you know that my dad was accepted onto the trial and in the chemo arm.  That means he'll be having Xeloda (8 cycles).  He starts it today.  Saw the tablets, they look quite big and he has to have 5, twice daily.  This is the same part of the trial that Ron Smith tried, although he had a bad reaction.  The onc said that they are having problems recruiting people and so the trial will be staying open longer than originally suggested (I wondered if it is because you have to start the trial within 12 weeks of surgery and many people are not well enough?  Or if whipples type surgery is rarer than I thought).

In the meantime, my dad insisted on trying fish and chips, since it's the one thing people have suggested he might not be able to eat after his whipples.  In his words 'I just want to see what happens...'  So I'll let you know how that goes!  I suggested he take two creon before that.

If anyone has any advice about Xeloda I'd appreciate it, although the docs and internet have given us pretty comprehensive info.

Thank you
Kate

Re: BILCAP/ABC trials

Hi Kate. Fish and Chips, are hard to digest after surgeryWhipple. Anything fried does not sit well. Would he eat a broiled or baked fish? I know Teddy misses his Friday fish fry. And yes, Whipple is extremely rare. Last I heard only 15,000 people World Wide, a year have a Whipple. Then last October I had surgery on an even rarer one. A GIST Stromal Tumor that only 5,000 a year get. Here we sit, husband and wife having a Rare Cancer  dance and I say, its all OK as long as we dance to the same tune. Unfortunatley on the food thing, these guys want what they want and then pay for it later! I know I have one like that.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

11 (edited by marions Tue, 02 Mar 2010 14:09:48)

Re: BILCAP/ABC trials

Katja....I believe for patient accruement to be difficult to achieve with this cancer.  It may have something to do with the exclusion protocol and/or the lack of eligible patients available.  In addition too, patients may be reluctant of entering a clinical trial due to fear of possibly being harmed by the treatment. Or, they wish to  have a bit more control while undergoing a clinical trial. 

Best wishes,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: BILCAP/ABC trials

You're right Marion, the word 'trial' can be scary.  For us in the UK it seems to make sense, as there is no other option for chemotherapy, without the trial my dad would be only under observation by his surgeon.  At least if he had been on the 'expectant' arm of the trial he would have had more scans, blood tests etc.  And there is the feeling that you are doing something very small to help in future.

My maternal grandmother had CC too, so I probably had not had as strong an impression of it's rarity.  It seems unlikely but I occasionally wonder on the implications for my brother and I.

As for the fish and chips, he insisted!  He seems to be able to eat pretty much anything now, remarkable recovery.  He asked the surgeon about missing the creon sometimes, and he seemed to find it hard to believe, but there don't seem to be any adverse affects...  Hoping the chemo doesn't knock his appetite down.

Re: BILCAP/ABC trials

Good to hear, Katja.  Fish and chips seem to do the trick.  As long as your Dad can tolerate it (he will be the fist to know) then I am happy for his little pleasure. 
Best wishes,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

14 (edited by duke0929 Thu, 04 Mar 2010 02:05:24)

Re: BILCAP/ABC trials

katja reading your post has made hungry,fish and chips sounds good right now....when my wife was on chemo(gemzar) she had a large appetite , i could not feed her enough, in fact she gained weight, which did not make her happy.....the doc said it was from the pre-meds and i also gave her gator- ade to drink which seemed to help her with her energy level...hope dad enjoys his fish and chips...well wishes and prayers......lucille and ron

Re: BILCAP/ABC trials

It was my dad's birthday today (59).  He took us all out for fish and chips (supplemented his with a creon!), and has been eating cake and all manner of treats.  The only thing he didn't have was the guinness (he likes to share his birthday with the Irish!) but that was only because we didn't have any...

Having finished his first set of chemo he is doing amazingly, helping to get things ready for my baby (due in a week or so), and still walking miles with the dog.  The only side effect he notices from the xeloda/capecitabine is a rash on his forehead, I wonder if this is connected to the 'hand and foot' syndrome which is often experienced (got him some udderly smooth balm for that which is doing brilliant on feet and hands).

From what I've read the capecitabine is generally fairly well tolerated, especially on it's own.

Kate

Re: BILCAP/ABC trials

Hi Katja, wonderful news and Happy Birthday to Dad. Are you sure the rash on his forehead is not from being anxious for the birth of his new grandchild? smile:)
We will be thinking of you as new babies always bring forth eternal hope!!!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: BILCAP/ABC trials

Hi Kate,

Great to hear that your dad is doing so well, and a happy birthday to him for yesterday! Celebrating with a fish supper sounds good to me! I hope that this good news continues for him and I am sure that he is looking forward to the birth of his grandchild. I hope that goes well for you.

My best wishes to you and your dad,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: BILCAP/ABC trials

Hi Kate, just wanted to tell you (even though I'm a little bit late here) that I got a rash or very redness in the face and forehead and upper chest when I start Xeloda.  It dissipates when I stop for a week and comes back when start taking it again so I know that's what's causing it.

Hope things are still going well for all.  How's the mommy-to-be?

Linda Z.

"Life is not about waiting for the storms to pass...
it's about learning how to dance in the rain."

Re: BILCAP/ABC trials

Hi Kate, just wanted to tell you (even though I'm a little bit late here) that I got a rash or very redness in the face and forehead and upper chest when I start Xeloda.  It dissipates when I stop for a week and comes back when start taking it again so I know that's what's causing it.  Oh, and by the way, I also gained lots of weight while I was on Gemzar/Cisplatin and now I'm on Oxalyplatin/Xeloda and still gaining.  I go down a little between treatments, but I could stand to lose a few again.  Seems strange when your tastebuds change so and you have an awful taste in your mouth.  Nothing tastes good so I eat everything trying to find something that does.....

Hope things are still going well for all.  How's the mommy-to-be?

Linda Z.

"Life is not about waiting for the storms to pass...
it's about learning how to dance in the rain."

Re: BILCAP/ABC trials

Hi Linda,

Thanks for adding!  My dad has just finished his fourth cycle of Xeloda, with no effects to stop him - he's fatigued and has sensitive hands, no fingerprints.  The last couple of days he's been a bit shivery and faint, so we're keeping an eye out for infection, but it has been really hot here (for us!) so maybe that's it.

My dad is loving being a grandad for the first time - it's been so good for all of us.  Means I have only half an eye on the boards here and typing with one hand...
Kate

Re: BILCAP/ABC trials

My dad is coming to the end of his chemo for the BilCap trial, testing Capecitabine after successful surgery.  He has taken 8 cycles of 2500mg tablets morning and night, and the only real side effect is the diarrhea (he takes immodium and codeine phosphate).  He manages the hand and foot with udder balm.

A clear scan last week was such a relief to us all.  I'm so glad he's been on the chemo arm of the trial.  My dad said to the doctor 'of course we don't know that the chemo did anything', to which the doctor siad 'we do base these phase 3 trials on evidence.  I think this will prove to be statistically significant'. 

I'm so hoping that capecitabine proves to be effective enough for a standard of care in the UK - otherwise patients will continue to be denied any chemo after surgery.