msargent1
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I agree … “The Emperor of all Maladies” was an excellent documentary on the history of cancer! I purchased the book after watching it, so I could see what was left out of the film. Unfortunately, I haven’t had a chance to read it yet.
My dad worked for the Railroad too, and has documented exposure to asbestos … and he has CC. As a result of that exposure he was receiving money from some type of asbestos trust fund for a while, but it stopped … I don’t know the details.
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!
Marion,
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
MikeMy dad isn’t in a trail yet, but his oncologist at MD Anderson will discuss one with us on our next visit in March. MD Anderson seems very open to trails, and appears to guide patients in that direction after standard therapy.. Our experience in Atlanta, at Piedmont Hospital, was very different … they didn’t seem at all interested in trials, and his oncologist in ATL was dismissive when I brought the subject up. That’s why I got my dad into MD Anderson … what a big difference and I’m so happy we didn’t waste a lot of time at Piedmont.
Jean-Marie,
A month or so ago, I asked a foundation in California about the UCSF MK-3475 trial, and they contacted the doctor out there, and her response was it was closed. I continue to look for other immunotherapy trials, including ones that might combination therapies, but haven’t found anything new yet … good luck!
Best regards
MikeFor those interested, below is an excellent group of panel discussions on immunotherapy:
http://www.onclive.com/peer-exchange/immunotherapy/Targeted-Immunotherapy-in-Cancer
This is great news Colleen! I actually sent emails to a foundation out there to see if I could get my dad into the UCSF trial, but it was full. I’ve been following the checkpoint inhibitor drugs every since my dad was diagnosed in May. Fortunately, my dad is so far responding to the chemo, but it is fairly rough on his immune system. After the 1st cycle he came down with pneumonia, and they also found blood clots. Thats been handled, but it was a little scary. He’s been off chemo for 1 month, and is back to “normal”, but he starts back up this Friday. I really don’t like what the chemo does, but there aren’t many options at this point. He’s at MD Anderson, and they’ll evaluate him for proton beam therapy on our next evaluation. I’ll of course talk with his doctor again about the anti PD-1 drugs (I don’t know when BMS’ drug will be approved).
Anyway, this is a good data point, and I hope we start getting published results in the next 3 to 4 months. Please keep us informed of your mom’s progress, and know we’re all pulling for you and your mom!
Thanks for all the advice and links guys! I’ve been watching this site for a couple of weeks and it certainly help in bringing me up to speed. I’ll surely share anything I learn along the way that might help others.
I assumed the “Compassionate use of a drug” loophole would be difficult, but you never know until you ask. Anyway, from what I’ve read, I believe these drugs will get FDA approval late in the year. At that time, I was going to try working the “off label” angle … but it’s my understanding that we’d have to point to proof it works with the cholangiocarcinoma.
Melinda – I’m so happy for you and thanks for sharing!
