Introduction
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Posts
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Peter,
This trial sounds great. Praying your girlfriend gets amazing results. Please keep us posted how everything is working. Take care.
MelindaPeter…..lot’s is still under investigation re: the Immune checkpoint inhibitors. See below information:
http://www.cancer.org/treatment/treatmentsandsideeffects/treatmenttypes/immunotherapy/cancer-immunotherapy-immune-checkpoint-inhibitorsHugs,
MarionPeter,
Welcome to this wonderful foundation and all the caring supporters!! I don’t have any experience with the treatment you are mentioning but I will be praying for your girlfriend and you as well.
LisaOh, we just had a new email I think yesterday on that trial! Peter, go to the Search button at the top of the page and type in OBDIVO and the past posts will appear on that subject or any other you type in. It sounds like a very good trial! Someone or 2 have to be the pioneers, right? We are so grateful to them!
Lainy, Thank you for responding! Yes, it is a technical question, but I’m assuming some others with cholangiocarcinoma have or will be entering clinical trials.
The drug class I mentioned has actually been mainstreamed for other types of cancer. For example, I believe Opdivo is out there for metastatic melanoma and small cell lung cancer.
Peace and goodwill, Peter
Peter, can’t help you on that, hopefully someone will. Just want to say how excited I am that she got in to a trial! That is awesome! We will be waiting for news of her progress. Thank you for that uplifting news!
Good evening all. My girlfriend is about to start participation in a clinical trial utilizing a monoclonal antibody drug and radiofrequency ablation to jumpstart her immune system. One of the side effects, though infrequent, is the rise of an autoimmune disease, esp. if you have a history of said disease.
We want to contribute to furthering the science of cancer treatment, but without putting her health in further jeopardy. Does anyone have a history of using Ipilimumab or similar drugs and what was your experience with it? I’d appreciate any thoughts people on this discussion board may have. Thank you! Peter
I hope and wish for someone to come forward and reach out to your girlfriend. In a time of need nothing replaces a conversation with a person sharing his/her experience in a personal way.
Hugs,
MarionGreetings! My girlfriend will be having a chemoembolization procedure at the end of this month. Is there anyone on here who would be willing to discuss their experience with her-as information and reassurance? Thanks much! Peter
P.S. She’s willing to provide her personal email address and phone number if that will help speed up making a connection.
middlesister 1, Thank you. My girlfriend is now scheduled for a chemoembolization procedure later this month as the prior radioembolizations had a partial response only. Any input would be useful…
Specifically, I was wondering if a transarterial embolization alone (TAE) would be easier for her to take without the added chemo drugs ((TACE). The idea here is to keep side effects and the invasive aspect of any procedure to a minimum.
I welcome any thoughts on the matter. Peter
Dear Peter,
Welcome to our group. I’m sorry to hear about your girlfriend being diagnosed and having such a rough time with the chemo. On the home page there is a link the current CC trials.
http://cholangiocarcinoma.org/professionals/research/clinical-trials/
Also, further down on the discussion board there is section on clinical trials. Is your girlfriend being treated at a major cancer center? As Lainy said, second opinions are always a good thing.
Please stay in touch and let us know how she is doing.
Take care,
CatherineLainy, Thanks for responding. My girlfriend is 62 y.o. and not really in the demographic which normally gets this kind of cancer (except for her age). To date, the possibility of surgery (resection) or a transplant is not even being discussed as the intrahepatic biliary cancer has metastized. They won’t even consider using ablation or cyberknife on her lung nodules because the cancer is so widespread in the liver…
After my girlfriend decided to stop the chemotherapy due to toxicity she was approved for radioembolization (targeted therapy) and had two procedures. We’re still trying to ascertain how much of the tumor(s) in the liver it destroyed. If anyone has suggestions on how to find clinical trials specifically for cholangiocarcinoma, we’d appreciate the feedback. Thanks! Peter
Dear Peter, I am so sorry to read about your Girlfriend but welcome to our remarkable family. We are a curious bunch and I am wondering how old she is and where she is being treated. We have quite a few members who were DX at Stage IV had treatments and went on to surgery, which is the best cure. Knowledge is also one of the best tools we have for fighting CC. Below is a site you might find helpful and above is a Search engine where you can enter a word or two and posts will pop up that contain that subject. Please keep in mind that 2nd and 3rd opinions can be very valuable and please make sure that her ONC and the Hospital she goes to are experienced with CC. Also please keep us informed of her progress as we truly care,
http://cholangiocarcinoma.org/newly-dx/
Hello all. My girlfriend has stage 4 cholangio with mets to the liver and lungs. Her experience with chemo was toxic to the point of having to terminate those drugs. She has survived the first year and we’re pushing to get her into a clinical trial involving an immunotherapeutic approach.
My name is Peter and I hope to listen, share our story and fill in the gaps of my knowledge by being on here. It can be very intense when she’s not doing well and the support here will be welcome. Thanks and God bless!
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