Thanks so much, Darla, Marion, and Kris.
Nicole, it sounds like our moms are going through very similar treatment options. It's nice to meet you here, though I wish we had met under different circumstances.
Jason, thanks so much for the article. Mass General did a clinical trial of Cabozantinib on advanced pancreatic cancer and I contacted the prime investigator for the results, but I haven't heard back from him. My husband did ask my mom's new oncologist at Mass General about the trial and it turns out the drug was being tested on the very particular "Steve Jobs" pancreatic cancer instead of the garden variety type. Your article, from what I glanced at briefly, looks promising.
So here is what's going on with my mom:
We had an appt with Dr. Lipika Goyal at Mass General on Monday. Dr. Goyal is doing the trial along with Dr. Andrew Zhu. I also contacted Dr. Thedore Hong for a proton beam therapy clinical trial at Mass General, so we were able to get an appointment with both doctors at the same time. Dr. Hong informed us that my mom is not a candidate for his trial because her cancer has spread. He, along with Dr. Goyal, recommended a systematic treatment over any kind of local therapy.
After Dr. Hong left, Dr. Goyal explained to us that my mom could have either FOLFIRI, FOLFOX, or CAPOX as a second line of chemotherapy but that she could also do the clinical trial for Cabzantinib. It's a phase II trial and no patients will be on a placebo. My mom will be taking a 60 mg pill every day for as long as it works. She's had some patients who could not stay on the trial because their cancer got worse. But she has patients who have been on the drug for as long as 3 months who are responding favorably. There are currently about 12 people on the trial and they could potentially extend or close it at 20. She said it's not a "home run" drug but something that she would recommend for someone like my mom who's generally in good health and is open to trying something other than chemotherapy.
After talking to Dr. Goyal, we decided as a family (using my mom's preference as a guiding point) that chemotherapy is always there is this doesn't work but that this was a good window of opportunity for her to try this. We also liked that she would be monitored very closely and could come off the drug if it's not working. She would be scanned every 2 months.
We were also told that Mass General recently got approved for a grant from the Lazarex Foundation for people traveling from out of town to be on clinical trials. After filling out a short application, we were notified that we qualified to get reimbursements for lodging and other travel expenses incurred. This will be a great help, as the drive from Basking Ridge to Boston took 4.5 with just restroom breaks, and we are seriously considering getting an extended stay for my parents for the first three months when my mom will need to go to MGH every week (twice a week during the first week) for the first three weeks.
We ended up staying overnight to make our decision, then signed the consent form the next day. Her first appointment, when she will pick up the pills, will be January 21 (her last chemo was December 23).
But there's a twist. As we were waiting to see Dr. Goyal to sign the consent form, I got a call from Dr. Michel Kahaleh from Cornell Medical College informing me that my mother also qualifies for another clinical trial that I inquired into. This one is called "Photodynamic Therapy for Palliation of Cholangiocarcinoma."
http://clinicaltrials.gov/ct2/show/NCT0 … amp;rank=1
If you do a search for photodynamic therapy on this site, you will see a post from Marion that has a link that has a presentation that Dr. Kahaleh did on PDT (Marion said it's graphic and hard for most of us to understand, which is very true).
Dr. Kahaleh seemed confident that my mom wouldn't have to choose one or the other trial; that she could do both and benefit from both. But Dr. Goyal didn't seem to think so. So I think the two doctors might talk over this (with our consent). Since my mom won't start on Cabozantinib until 1/21, Dr. Kahaleh asked what she thought about getting PDT next week. So now we're facing that question and waiting on what Dr. Goyal thinks. I'll keep you posted.
I'm rushing to type this, so please excuse any typos, etc.