my dad is newly diagnosed
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mydad….Although, not too often, but occasionally have we seen this cancer attack the spinal cord. In fact, our JeffG had been treated for it and so very typical for who Jeff was he described everything in detail. We are fortunate to be the recipients of is legacy. I will enclose a few links:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=711
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=25959#p25959
I hope this helps,
all my best wishes,
Marion
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=1894
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=2102Hi Mydad,
Your dads case sounds similar to my husbands. he also is inoperable because of mets to the spine and lungs. They were also concerned that the tumors were compressing the spinal cord and were considering back surgery initially but it was ok. Docs decided chemo was the way to go for him to try to shrink the tumors. He is now on gemzar and cisplatin and I’m hoping eventually he will be eligible for surgery. Pet scan in Feb will show if the tumors have shrunk. Best of luck with your dad and keep us informed.
It all sounds like Dad is getting the right things. Please someone correct me if I am wrong, but not sure you can have chemo while having radiation. Never saw this before. I am old but not too old to learn. Please keep us posted.
Thanks everyone for your support. It seems that right now they are just focused on doing the radiation on his back. I, of course,would like him to start chemo right away but my parents want to take it one step at a time. I know doctors don’t like to give “false” hope but they don’t seem to be very optimistic…it might be because of how advanced it is- we still have’t gotten the official second opinion yet…my dad is so tired of the healthcare maze that he doesn’t want to go for any more opinions. He’s just so happy that the second place offered an extra pain pill before he has to get on the table for rad, mri’s, etc..unlike the first place he went.
Hi Mydad,
Welcome to the site. Sorry that you had to find us all and I’m sorry to hear about your dad, but I’m glad that you have joined us all here as you will get a ton of support and help from us all. I know what you are going through right now and how you are feeling as I went through this with my dad when he was diagnosed back in 2008 and his CC was also deemed as inoperable.
That is good that your dad sought a second opinion and he has done the right thing here. As to the chemo treatment he was offered, the Gem/Cis chemo combination is now seen as the standard chemo treatment offered to CC patients based on a study in which the results were published in 2009. If you google for it or indeed use the search fundtion here as the site as Lainy suggests then you will find a lot of info about this combo. And here is a link that may help you as well.
http://www.nejm.org/doi/full/10.1056/NEJMoa0908721
It is not however the only chemo that can be used and other combinations have and are used as well and I am sure that others will be along soon to share their experiences with you as well. Did the doctors in Chicago talk about any other possible treatments for your dad?
I do hope that you will keep coming back and let us know how your dad gets on and please, feel free to ask any questions that you might have and we will all do what we can to help in answering them.
My best wishes to you and your dad,
Gavin
Welcome Mydad to the best little website in Texas! OK…that was cheesy but you are most welcome here and this is the best website to help with questions and information. Gem/Cis does seem to be the drugs of choice by most oncologists to start. Keep us posted and good luck ….Nancy
Hello Mydad and welcome to our wonderful family. Gem/Cis seems to be the popular chemo cocktail. When one is not sure about the game plan we strongly recommend a second, thirs, etc opinion until you are totally satisfied and comfortable. There is a search button at the top of the page and if you type in the different chemos you will get some posts up that will talk about each one.
I am glad that dad has at least a game plan in progress. You have come to the right place to ask, vent or advise and we hope you visit oftenand please keep us posted on your dad.You will find this website to be such a helpful place. I am sorry that you had to find us though.
My father was given the gemzar/xeloda combination. Although, I have read of many people who have taken the same ones you mentioned. Each person handles the chemo differently with this type of cancer. What works for one person, may not for another, so there is not any particular combo that everyone begins with. Hopefully that combination will work for your dad!
what a relief to find this website. My dad was diagnosed with unresectable CC after Christmas. He has tumors in the liver, some lesions on the lungs and vertebrae. We went for a second opinion and he was admitted to the University of Chicago because of possible spinal cord compression It turned out to be these lesions on the back causing the problems. Currently, they are treating him with radiation to shrink the tumors and hopefully he will gain more mobility back. He went from normal activity to using a walker in under a week. As for treatment options, it seems he’s only been offered the Gemzar/cisplatin combo. I asked about clinical trials and they don’t have any first line trials there. Is this the chemo most people start out with? It looks like after chemo some people have been able to have resections. I’ve also seen people talk about sorafenib and tarceva and they sound like they’ve worked for people.
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