Day 153, Year 11: Good News . . . The Trial is On
Date: Wednesday, March 23, 2016
Weather: Overcast with Sprinkles, High Temp 60 degrees F
Location: At Home in Evergreen Preserve, Lowell, MA
Five weeks ago today I was in a lovely botanical garden in West Palm Beach when I got a call from Mark (who was in Boston) telling me about a drug trial for which he might be eligible. His oncologist felt the trial was his best chance at fighting his spreading cancer. The problem was that our home was also in West Palm Beach. But with a lot of weather luck and the help of a wonderful friend, Kevin Russell, we were able to get Windbird as far north as South Carolina. We then flew here and have been living in a condo owned by my niece Lynn. The generosity of family and friends has been unbelievable and we are very thankful. But we have been here since February 28th waiting to hear whether or not Mark was truly eligible for the trial. Today we found out that he is and the treatment will begin next Wednesday. Woohoo!!! The treatment will happen each and every Wednesday until it stops being effective. As Dr. Kwak told us today, Mark’s cancer cells don’t present a clear-cut message, so it is very difficult to predict how he will react to the biologics that he will be given in this trial. But it is worth the try. One of the biologics is called Erbitux (cetuximab). Last year he was given a very similar biologic called Vectibix (panatumumab). It worked like magic until the cancer cells caught on and outsmarted it. That took about nine months. This trial combines cetuximab with yet another biologic, INC280 (capmatinib). In simple terms, the hope is that the INC280 will allow the cetuximab to do its job. I don’t know about you, but all of this terminology keeps my head spinning. I include the actual protocol title of the trial here for those who might understand it.
“A phase 1b, open-label, multicenter, dose escalation and expansion study, to evaluate the safety, pharmacokinetics and activity of INC280 in combination with cetuximab in c-MET positive CRC (colorectal cancer) and HNSCC (head and neck squamous cell carcinoma) patients who have progressed after anti-EGFR (epidermal growth factor receptor) monoclonal antibody therapy.”
If I lost you somewhere in all of that explanation, no worries. We are lost, too. We do understand the basic idea, but that is not our focus. We are focused on whether or not the treatment works. In the meantime, Mark has found a pain medication regimen that works for him and he is generally feeling much better. He felt great today until he didn’t get to eat lunch, and instead had to drink two big bottles of contrast liquid containing barium and tasting like chalk (at best). Ingesting this yummy liquid was for a CT scan needed for the trial. You can have nothing to eat for two hours before a CT scan, thus the lack of food until the testing was completed. Because of all this, tonight has not been his best evening. But I think that after a good night’s sleep, he’ll rebound and feel good again tomorrow.
So one down and one to go. We now know about the trial and but start figuring out where we are going to live. We just haven’t been able to give that the time and energy needed until we found out about the trial. No more excuses. The trial is on and now the hunt is full-on for a place to live.

