PEG-IL-10
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I think your response was fine Marion … no issues. I’ll certainly share any positive experiences!
So far, I think my dad’s treatments have been routine for MD Anderson. Sequencing didn’t show any identifiable mutations as the cause of the cancer, and he had 3 weeks of IMRT in December. My dad doesn’t appear to have to most aggressive form of the disease (mutations Dr. Javle talked about in the podcast), so I’m hopeful we can buy him time until better immunotherapy protocols are developed. I think these protocols will replace standard chemo in the next 5 to 10 years.
By the way, I can’t say enough positive things about MD Anderson and Dr. Javle!!! I know this is a tough diseases, and I am so thankful for the dedication and support of the people at that hospital!
Mike…..I hope you did not misunderstand me. I applaud you on using this discussion board for the purpose of interacting with others in regards treatment experiences. This board, driven solely by the members, serves as a valuable resource to all touched by this cancer because of just that – the sharing of experiences with others in similar situations. We know that many so called “lurkers” (those that don’t sign up) gather much information from this site. If only they would join in and help us expand the knowledge base. In fact, if indeed you decide on participating in the mentioned trial, we will make sure to “sticky” (highlight) your thread.
It is unfortunate that study participants don’t have the means of interacting. It is prevented by HIPAA securing the healthcare information of all. The major downside in a clinical research study is the lack of knowledge and uncertainty of knowing how others respond in a likewise situation.It is likely that MD Anderson is the only cohort for Cholangiocarcinoma patients therefore; the information you share with us and the global community is of great value to all.
All my best wishes are heading your way with the upcoming visit.
Hugs,
MarionMarion,
One person posted on the “Inspire” website, about the trial and their experiences, but they had to drop out of the trial because it wasn’t working for them. I believe they had lung cancer. I also emailed one of the “contacts” identified for the trial and was basically told Phase I had been expanded. Phase I was suppose (estimate) to have been completed in Dec 2014.
We meet with Dr. Javle in early March, so we’ll discuss this with him at that time … I was really just looking for people’s experience if they had been on the trial. I wanted to be prepared for that conversation.
Best regards
MikeMike…thanks much. You might not be able to connect with others as (I believe) accrual is in beginning stage. But, it won’t hurt to ask Dr. Javle as to how many people are participating as of now.
Hugs,
Marion
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