Need clinical trial advice
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Hi Caroline,
It is good to hear from you. There are quite a few clinical trials out there right now both for cholangiocarcinoma and for the more general category called “solid tumors.” Since you have started looking, you have likely already come across some of the trials. The Cholangiocarcinoma Foundation website posts information on trials. If you are consulting with doctors at major cancer centers, they will have some insights as to which treatments being tested may be a good fit for your specific case. If you would like to do more research on your own, you can search “ cholangiocarcinoma” and “ solid tumor” on the clinicaltrials.gov website. The website allows you to narrow your search by geography, based on how far you wish to travel. For any trials you see that look interesting, there will be a point of contact given toward the bottom of the report whom you can contact with any questions.
In most cases, the patients who do well in a clinical trial will experience a long stretch with shrinkage and/or stable disease. Some patients have participated in several trials one after the other, doing well with each. If the trial drug is not working or loses effectiveness over time, this will be determined quickly so that the patient can move on to another treatment. Being involved in a research study is a little more complicated than just receiving treatment, but clinical trials give you the opportunity for access to cutting edge treatments and top notch specialists.
I have seen research that identified different mutations being present in later tumor sites when compared to the original tumor. I hope the additional testing opens doors for you to additional treatment options.
If you have specific trials in mind, they can be searched on this website to see if anyone has posted. Gavin posts medical studies that discuss trials or new treatments – a search would pick these up as well.
I hope this is helpful. I encourage our board readers who are participating in trials to post their experiences.
Regards, Mary
Hi Friends
I’ve been reading through the clinical trials and hoping someone sees this post. I am meeting with oncologists from MD Anderson and Washington University to inquire about clinical trials that would be right for me. Gem/Cis did it’s job but stopped working and caused blood platelet issues. I have the BRAF V600 mutation and have been on Braftovi/Mektovi for 4 months which significantly shrunk the main tumor but rogue cells have attacked my lymph nodes and they are not responding to the inhibitors. I’ve been advised to seek clinical trials. I’d love to know more about folks success with these trials. I have ICC with lymph node involvement and only one mutation. We are doing a liquid biopsy on the lymph nodes to see what they are made of and hopefully get new direction. I’ll be honest, I’m scared. Thank you for any information you might want to share.
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