April 13, 2016
Today we got some more very hard news. We've learned that the second chemo, FOLFIRINOX, also has not stopped the cancer growth and spread, after just one month on the regimen, so we've stopped it effective immediately. After the appointment, Michelle had some blood work and fluids and we went home early. We did find out that her albumen and total protein continue to climb, so the nutrition plan is working and her fluid build-up is much better controlled as a result.
Michelle continues to feel pretty decent, all things considered, but the enlarged sentinel lymph node was indeed a bad sign. The largest tumor (the pancreatic one) is now over 14cm by 7cm at its largest dimension.
The primary and largest tumor
There are also a number of large growths in the abdominal wall, though they don't seem to have spread very much in the past month. While we can still be pretty certain that we're dealing with one of the many types of pancreatic cancer (which all have the same treatment), the scan noted that this is an "atypical appearance of pancreatic adenocarcinoma given its extensive hypervascularity, large size of the pancreatic mass, and pattern of spread".
We need to figure out what to do next and we have a number of things happening in the next two to three weeks to help us make that decision. There is no additional standard treatment to try, so we are on to clinical trials at this point.
First, we have submitted some blood work to a full panel of genetic testing. This might shed some light on why Michelle may have gotten pancreatic cancer in the first place, but more importantly, could lead to some suggested treatment options. The current suspicion is that she inherited the BRCA2 mutation. If we can confirm this, it opens some clinical trials that target that type of mutation specifically (as well as require proof of it). We should have the results in the next week or two.
Second, today our oncologist ordered a second biopsy, this time done at OHSU and as a core needle biopsy, which can obtain more tissue. The original biopsy at Providence was a fine needle and the material was used up in the initial attempts at diagnosis. This new material can be genetically tested itself, which could point to some other clinical trials that we are looking at as good options to pursue. It may also help us figure out exactly what type of pancreatic cancer it is, which could help inform future treatment. As of now, the biopsy is scheduled for next week with results in about two weeks, but we are going to try hard to get that to happen sooner if we can get an opening.
Third, even before today, we scheduled a second (technically our third) opinion in Seattle with the University of Washington, the Fred Hutchinson Cancer Center, and Seattle Cancer Care Alliance. Today's results of an atypical cancer only confirm that this was the right choice. More experts and a bigger institution can possibly shed more light on what steps to take next. We have a place to stay and will be in town for a couple days later this month, but hopefully Michelle will feel pretty good and we can do some fun things while we're up there, too.
The cards and well-wishes continue to come—we have hundreds at this point and they let us know that you are all out there thinking of us. For that we thank you. This weekend we baked a pie together and Sunday we celebrated Justin's birthday. We had a big open house party where many of our local friends came out on a beautiful Sunday afternoon for barbecue, beer, and pie (we had at least fifteen pies, but it was hard to count since we had three times as many people trying to get a slice). It was our first chance to entertain and to see many friends since before the holidays and did a lot to boost our spirits.
We continue to focus on feeling good, staying positive, and doing the things that we love. As always, we'll share more when we know it. Please continue to keep us in your thoughts.