I am not willing to stop fighting and am asking for your help.
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Annabel,
That is great you did not give up and continued to look for help and a solution. I find that this condition is not something to accept the diagnosis and the first treatment recommendation. There is no “one cure/treatment that fits all”. It seems that genetic testing is very useful and should be used from the beginning.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!
Not sure if youre able to travel to germany but this trial is open there as long as your dad has no metastases. Worth a shot to try it or at least ask your oncologist about it. In 2014 one dr claimed to get a good response with an intrahepatic cholangio pt. Not sure if the whipple excludes him from the study but u can always ask. https://clinicaltrials.gov/ct2/show/NCT02415036?term=NCT+02415036&rank=1
BillyAnnabel…..so sorry to hear of your Dad’s non-response to the study drugs. I hope the next option of enrolling in a targeted study will come true for him and try to not focus on the dire predictions, as your Dad may very well prove it to be wrong.
Good luck and fingers are crossed
Hugs,
Marion@ 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.
Annabel……Wondering: do they treat “rare” cancer types with radiation such as
radiofrequency ablation, cryoablation, radioembolization, or something I know little of, which is percutaneous ethanol instillation? I assume that the nodules could be addressed as those inherent to primary liver cancer.
You are doing great, beside the fact that you are finishing your thesis. Not a small task.. Please keep us in the loop.Hugs,
MarionThank 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
Annabel,
I think the suggestions offered by Lainy and Marion make good sense. Additionally, In my opinion, when the doctor says there is no more that can be done, and particularly when a patient is still strong and generally feels well (hence, can probably tolerate additional treatments), that is a good time to reach out for additional opinions. Even very good doctors may see things differently. I would seek second opinions from multidisciplinary teams that can evaluate your dad’s situation and make recommendations. Based upon your extensive research, and your request for info. On other options, I understand your wanting to find a solution for next treatment line. It is also good to be well versed in various options. However, a top center should be able to offer you options, as they are the experts. I hope you keep searchingl until you find a center that has something viable to suggest.
Debbie
Annabel,
I don’t have anything to really add to already good advice you have gotten….but want you to know that I am rooting for you and your dad.
Annabel…your father’s health status appears to be rather good, hence a clinical trial may be another option.
What comes to mind – a suggestion only- is getting in touch with Netherlands Center for Personalized Cancer Treatment (Utrecht, the Netherlands), which is using a similar protocol to that of the NCI MATCH clinical research study.
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=13860Another thought may be a TACE procedure and a consult with an interventional radiologist. Of course, much depends on the location of the tumor and whether it interferes with major blood vessels.
Don’t despair, your father does not have an expiration stamp on his foot. Much is still open for discussions.
On a more personal note, dear Annabel, congratulations on your University graduation. What are you future plans?
Hugs to you,
Marion
Dear Annabel, I am sorry to read of the latest report on your Father. Can you get another opinion where you live? How old is your Father? Alternative medicine has yet to be a cure for CC but if you feel you want to try please let the Doctor know what you are doing as it may interfere with whatever they decide to do. Also let us know how he is doing and if you can seek another opinion. You never know how strong you are until “strong” is the only choice you have!
Dear all,
I haven’t posted as much as i’d have liked the last couple of months because I was combining graduating from university with care for my father, but now I really need the expertise/help of this wonderful community.
A year ago my father was diagnosed with cholangiocarcinoma. Fortunately, he could have the Whipple procedure done in January. Not so fortunate was the outcome of the biopsy: they could only achieve a R1 resection, meaning there were still cancerous cells left in the surgery area.
After extensively browsing the web and contacting medical professionals I found out my father could enroll in the Aticca-1 trial here in Amsterdam. Although the chemo was hard on him the doctors thought he responded very well and they expected the trial would make a significant difference.
Today, the latest scan showed some spots on the liver, still very small < 0,5 cm. There's a small chance it could be inflammation from the chemotherapy but it probably means the cancer is back. The spots themselves are too small to puncture yet to determine for sure so they told us to come back in three months. Our doctor told us there are no more possibilities left now, he might live for another year, somewhat shorter than that or somewhat longer. Because I’m drowning in all the research, my question for you is if you know of other treatments that are still out there that I might have overlooked? If not regular medicine, alternative medicine that might make a difference? Your help means the world to me, Thank you so much, Annabel
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