March 10, 2016
It's been a long time since our last update. We had mostly been on a course of just holding steady and making progress every day, so it was easy to forget about posting updates for everyone to let them know how we were doing. Sorry about that.
Today we have some very mixed news.
The past month has been huge in terms of our ability to get out and to do normal things. We've been on shopping trips, out to eat for brunch and lunch, we went to the ballet, we had a couples massage, and we even had an overnight trip to the coast where we stayed at a resort complete with a fireplace and a soaking tub with ocean views. Michelle has just turned around her weight loss and started to gain weight. Part of this is due to her eating chicken again in order to maximize her protein intake. Her appetite is up again as well. Her pain is fairly well-managed and sleep is still generally good. Michelle's parents and brother were able to visit us in Portland. The short haircut only lasted a couple weeks, though. Eventually we shaved her head due to the hair thinning that was going on in order to keep things more manageable and less stressful. We also made it past Rare Disease Day and learned of a major research breakthrough in pancreatic cancer. The past weeks have been relatively eventful and encouraging.
However, on the clinical side, yesterday we reviewed the results of this week's CT scan with our oncologist, the first measure of how well the chemotherapy has been working. It seems that surprisingly, it has not been working well and all tumor sites have grown and the disease continues to progress. This is very hard and unexpected news. As a result, the doctor recommended that we do not continue the Gemcitabine/Abraxane chemotherapy (a treatment approved in 2013).
We have two main options available now.
The conservative approach is to try the other approved chemotherapy regimen, the drug cocktail FOLFIRINOX (approved in 2011). This can possibly more aggressively attack the cancer, but it can also be harder on the body with its side effects. Previously, Michelle wasn't even a candidate for the regimen due to how badly things were going around the start of the year. Today, symptoms are better and she feels stronger, so this approach is an option now.
The other approach is to consider clinical trials as the second-line treatment. In our initial searches, there are currently about 20 relevant trials nationwide and in Canada, but only one is in Portland and another is in Seattle (a three hour drive). Everything else is further away. We've just started researching the possibilities and are working hard with our patient advocate to narrow down the list and to consider what travel or relocation might mean.
We have the next one to two weeks before we need to choose the next step. We are already setup to proceed with FOLFIRINOX locally for the next two months if that's what we choose to do.
Thank you as always for the well-wishes and cards. It helps us also that the weather is improving in Portland and we get good sun some days. Please keep us in your thoughts and prayers as we decide what to do next to try to beat this.