June 8, 2015 at 6:10 pm #88484moontjeParticipant
we are also from the netherlands…tom has the cc almost 8 years 2 resections and now on chemo.
oxioplatine with gemzer..he was last june 2014 given a few monhts..and look here, a year has past…and feeling great. we had a second opinion in leuven by prof verslype and he get the treatment in belgium…in genk. in maastricht they did nothing. maybe that is a option for you..
if you want to get more info i wil gladly too give it to you..
greatings moontjeJune 8, 2015 at 1:53 am #88483kvollandParticipant
Welcome to the best little family no one really wants to be a part of. Sounds like you have really done your research on this disease and have a good plan for yourself mapped out. And definitely getting more opinions is the way to go.
And as has been said don’t think about those months…..we have people on here that I am sure at one time were given time frames and I know of a couple who have been around for a really long time. The best words to here if you are inoperable is Stable Disease and there are many who get told that time and time again.
I do suggest that you make sure you have all your affairs in order…..that sounds terribly depressing but I know from my own personal experience that it never hurts to make sure.
Keeps us posted on your progress.
KrisVJune 7, 2015 at 5:58 pm #88482gavinModerator
Welcome to the site. Sorry that you had to find us all here and I’m sorry to hear everything that is going on for you right now and it sure is a lot isn’t it. But I am glad that you have joined in with us here as you are in the best place for support and help and will get lots of that from everyone here.
Glad to hear that you have found a way to get around the Dutch insurance system and I so hope that your treatments go very well for you. Please let us know how everything goes, we are here for you. Please try not to focus on time frames and I so love your attitude towards this, 11 months i not acceptable indeed as you say!
My best wishes to you Garrett,
GavinJune 7, 2015 at 1:41 am #88481marionsModerator
Garrett……I too would like to welcome you to our site and congratulate you on the aggressive stance taken in order to fight this disease. Seems that you found a way around the insurance ruling by adhering to standard of care with Gem/Cis, which then allows your to receive the second round of embolization.
Not sure whether molecular testing is widely used in Holland. It allows for determination of molecular pathways and therapeutic opportunities and will continue to be a focus of current research.
Good luck, dear Garrett, and please stay with us. We are in this together.
MarionJune 6, 2015 at 3:47 pm #88480lainyParticipant
Dear Garrett, welcome to the best place to be for CC support but sorry you had to find us. WOW! You have really done quite a job for yourself! You are quite a planner and that will get you everywhere as it obviously did get you to the right Doctor. Your attitude is great and we DO NOT listen to time frames as we were not born with expiration dates on the bottom of our feet. You are already a fighter but when you start your treatment any fright you may have will also turn to fight.
You have quite a wonderful family with 3 sons. That is beautiful and they will help cheer you on.
Please keep us updated as we truly care.June 6, 2015 at 3:37 pm #88479darlaParticipant
I don’t have any answers for you but am hoping for others to chime in soon. I just want to welcome you and let you know you have found the best place to be when dealing with this disease. Everyone here is so helpful and knowledgeable and I know you will get answers to your questions soon. We highly recommend 2nd and 3rd opinions, but it sounds like you have already done a good job at that. Yes, with a wife and 3 young sons you have so much to live for that it is worth the fight. Hoping for good results with what ever you decide.
Please let us know how you are doing. We are a very caring, supportive community and will help you in any way that we can.
DarlaJune 6, 2015 at 9:12 am #11357garrettMember
My name is Garrett, I live in Holland and I am 59 years old. I was diagnosed with cholangiocarcinoma on 26-3 after having sudden pains in the right abdomen. After some more scans and a biopsy the oncologist simply said it was a mean type of cancer. I had a life-expextancy of 7 months without therapy, and a median Life-exp. of 11 months with Cisplatine/Gemcitabine chemotherapie. That was it! I had several meta’s in the lungs, in the liver-hilus, and positive nodes around the aorta and infra-clavicular. Not very good. I felt I had to do something immediately!
So I went to Dr Vogl in Germany to have a TACE done, and took Xeloda afterwards.
Then I went to the University Hospital in Utrecht, where they also only offered CIS/GEM chemo.
Because I had “systemic” disease they could not do Yttrium or Holmium radio-embolisation.
Then I contacted the University Hospital in Antwerp (Belgium), and put in all my papers and scans. They are willing to give me the Yttrium-90 therapy, but the Dutch insurance does not pay for that. But there seems to be a way around that. So next week I will start my Cis/Gem chemo. And in a few months I will do the Yttrium-90 radio-embolisation. I am also trying to avoid sugar, as the tumor likes that very much, but that is not easy!
I have a wife and 3 sons: 13, 11, and 8 years of age. 11 months (median) is simply not acceptable to me!
But maybe I will just have to live with it…….
Does anyone has any other options? In the meantime are house is on the market now, as we have to move to a smaller and cheaper house if we lose my income.
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