I can’t believe that I haven’t posted an update since before our trip to MD Anderson. I thought I would let everyone know what we have learned, and how things are going.
Here is a little background on the situation as of October -- Andrea was getting treated at Stanford, and had been doing well on her Gem/Cis treatments. However, we were well aware of the fact that Gem/Cis usually gets either ineffective or too hard to endure. We decided that during Gem/Cis cycles 7/8/9, we would get 2nd/3rd/4th opinions on what would be a good next treatment for Andrea.
Our first visit was to UCLA, which I think I already described. Next up was MD Anderson. Wow, that place is huge! Two tips if you decide to go to MD Anderson. First, be sure to use their online web application. This is how we found out the timing of our appointments. Second, if you have a port, don’t be surprised if they refuse to use it. They would not use Andrea’s port for her CT scan even though we had all of the documentation for what type of port it was and where it was. Their policy is that if they did not put in the port they will not use it without a chest x-ray!
Anyway, I think the standard MDACC review includes a meeting with the surgeon (Dr. Vauthey), and a meeting with Dr. Javle. We first met with Dr. Vauthey. We were not surprised at all to hear that Andrea was not, and probably would never be, a candidate for surgery. We have a long list of surgeons with that opinion! We next met with Dr. Javle. We found out from Dr. Javle that the CT scan indicated stable disease since the prior scan. We were hoping for shrinkage, but thankful for stable. Dr. Javle said that in his experience with stable disease, two approaches have been effective at prolonging the time to progression: radiation or Tarceva.
Dr. Javle’s recommendation was to:
1. Get a PT scan to get a baseline for current cancer activity.
2. Continue on Gem/Cis for 3 more cycles (12 total)
3. Come back to MDACC in January and get a PT/CT scan.
4. Assuming the January scan confirmed stable disease, pursue either radiation or Tarceva
I believe the type of radiation would either be proton beam or IMRT depending on an analysis of the collateral radiation (the involvement of the duodenal seemed key here??)
We next met with Dr. Kelley at UCSF. Dr. Kelley recommended continued Gem/Cis for 3 more cycles, and then to use IMRT radiation treatment on the primary tumor location. Given this is the biggest tumor and given the central location, Dr. Kelley thought this would be the area that would cause problems down the road. Hitting it with radiation while it was smaller and well-contained will hopefully extend the amount of time Andrea is stable. Dr. Kelley also suggested Xeloda during the IMRT treatment, and then continuing on Xeloda as a maintenance drug. Xeloda apparently makes the tumor cells more radiation sensitive.
We have decided to continue on Gem/Cis at Stanford until January, and then switch to UCSF and do IMRT + Xeloda. We have found a good match with Dr. Kelley and feel great about the plan (although still apprehensive about new chemo and new radiation treatment).
Andrea also got a PT/CT scan at UCSF to get a new baseline. Fantastic news…the CT part indicated additional shrinkage! The PT part indicated that there were NO VISIBLE SIGNS OF CANCER ACTIVITY! All of the tumors in the liver now have sugar uptake that is indistinguishable from the sugar uptake of the surrounding liver (or less if necrotic). That is just awesome.
Many of you have written with prayers and support. Thank you so much! Sorry that was a bit rambling. Feel free to post or email me if you have questions about our experience to date.
Hopefully, Andrea and I can continue to keep ahead of this monster…