annabel24
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A little update: my father has been tested for HER2 mutation and the test came back positive. His doctor has recommended to start with trastuzumab emtamsine (KAMELEON, clinical trial fase II), I can’t find a lot of information about this particular treatment for cholangiocarcinoma with a HER2 mutation. Do any of you know if trastuzumab emtansine has been tested before on HER2 mutations in cholangiocarcinoma and if there was any effect?
I could only find an article of some reviewed cases that stated that although people with galbladder cancer could benefit from Trastuzumab emtansine, they found no response to the treatment in people with cholangiocarcinoma: https://jhoonline.biomedcentral.com/articles/10.1186/s13045-015-0155-z
”The cholangiocarcinoma cases treated in this series had a higher proportion of HER2/neu mutations, and no radiological responses were seen in these patients despite HER2/neu-directed therapy.”
Thank you for your help!
@ Marion Sorry for my late response, things have been quite hectical lately. Procedures like radiofrequency ablation, cryoablation and radioembolization aren’t done here for cholangiocarcinoma because they haven’t been proven successful enough. Although healthcare in the Netherlands has been proven the best in Europe in a recent study by HCP, I sometimes wish it was a little less conservative.
Yesterday my father heard the results from the new scan – in 6 weeks time the lesions in his liver have doubled in size. Although six weeks ago the hospital told us he might still have a year, now they have adjusted it to a few months due to the rapid growth. Next week we will have an appointment in another academic hospital about a targeted therapy trial. I so hope he can still participate in this one. He finished the Acticca-1 study (gemcitabine and cisplatin) wih absolutely no results except for being really ill and reccurence within a week after finishing the trial.
Thank you all for the replies, it’s much appreciated. Marion, thank you so much for pointing out the targeted therapy institute. I got in contact with one of doctors of a trial there, he just e-mailed me back that my father might be eligble, but only if the biopsy was already tested on DNA mutations by the current hospital. I don’t think they did that, so I will inform with the hospital if they would be able and willing to do that.
I think the Netherlands is a rather conservative country when it comes to medicine/treatment and so the options are limited. Treatments like TACE, Nanoknife and radiation are used for other sorts of cancer, but just not for the rarer diseases. I did contact an organisation that specializes in these treatments, so I will wait for a response from them.
Lainy, my father is 55 and his overall condition is above average. The scan only showed very early reccurence in the liver. My father’s current doctor is the head of gastrointestinal trials nationwide and he only suggested one very heavy chemo fase 1 trial. Nothing more that can be done.
Again thank you so much for your help, it’s sometimes hard to keep an overview of all the treatment options. I will keep you updated.
Oh, and Marion. Thank you! I’ve almost finished my thesis in History, so that’s pretty exciting
Hi everyone, thank you so much for all of the replies up until now. It really does help a lot.
I’m going to see my father again tonight and tomorrow; hopefully I’ll be able to provide you with some more details after those visits. As for as I can tell, the reason why it’s not resectable is because the branches of the removed tumor are near a main artery. As for the chemo, my dad’s doctor mentioned that there have been similar cases where it’s been used, but that the numbers aren’t great; he was pretty vague on that though.
We’re also going to ask for a second opinion tomorrow and are looking online for possible trials. If anyone knows of any relevant trials, that would be incredibly appreciated.
And again, thank you for the quick and helpful replies.
