BILCAP/ABC trials
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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.
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…
KateHi 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.
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.
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
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?
We will be thinking of you as new babies always bring forth eternal hope!!!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
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
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,
MarionYou’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.
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,
MarionHi 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.
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
KateHi Kate,
Here’s my first post on the website in which I talk about my dads experiences with PDT –
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?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
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/research/loc/southampton/southampton_univ/primrosej/primrosejfr/primrosejfrp2/?version=1
Best wishes coming your way,
Marion
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