Chuck felt pretty rotten earlier this week, he was sleeping over 20 hours per day, had absolutely no appetite, and when he did try to eat he would get very sick. He had lost over 20 pounds since returning from Hawaii, and was very very weak. By Tuesday night he was very frustrated and completely exhausted, and was mentally prepared to tell the doctor that he wanted to stop participating in the AZD trial, since he knew that was what was causing the majority of the side effects that he had been experiencing. I felt the same way - it was so hard watching him suffer and waste away and it was totally breaking my heart. So, we paged his doctor and Chuck told him how much worse the side effects were, and that he really wanted to stop taking the AZD. His doctor told him to stop taking the drug for now, and that they should plan on talking again at the end of the week so that they could decide if he did indeed want to go off the trial drug. At that point his doctor felt like Chuck should try one more dose reduction in the AZD, and that all he needed was another “drug vacation” in order to give his system a rest. But by the time the end of the week rolled around Chuck and I both felt like it truly was time for him to get out of the trial once and for all. There was no way he was going to be able to last another 7+ months on the drug, we couldn’t even imagine what it would do to his body. Chuck had absolutely no quality of life; he spent all of his time either in bed or in his recliner, and had stopped eating solid food. With this type of aggressive cancer there are no guarantees as to when the tumor will start growing again, and Chuck did not want to be risk being extremely sick for the duration of the trial only to have the tumor start growing again after the trial was over. He and I both care very much about quality of life, not just quantity, and we felt like the AZD was completely taking away his quality of life – with no guarantee of success. After only being on the drug for 3 months Chuck was completely ravaged by side effects, we couldn’t even imagine what his life would have been like after a year on the drug. So on Thursday we spoke with his nurse practitioner, who we respect and trust very much, and the three of us agreed that it was time to take Chuck out of the trial. No more AZD, ever again.
On Friday we spent most of the day at Dana Farber, so that Chuck could get a bunch of IV fluids. He began feeling better almost immediately – the fluids helped to rehydrate his system and flush out the lingering bits of AZD. He was able to eat a little dinner, got a good nights rest, and on Saturday he felt like a new person. He was able to eat a small breakfast, and was alert enough to spend a little time on the computer and then sat outside under the shade of a tree for a couple of hours. This was the first time Chuck had been outside in weeks, and he realized how much he had missed. He does not remember the tiger lilies blooming along the walkway, or the summer squash flowers turning into beautiful ripe squash in the garden. He realized that over the past month he had become numb to everything in the outside world, and was slowly slipping away into a haze of side effects. After coming inside to eat lunch (yay!) he took a little nap, and woke up feeling good. It was the first real day he had experienced in a long time, and it helped to reinforce our decision to take him out of the trial. I have no doubt that by the end of this week Chuck is going to be feeling so much better, and will be ready to enter back into life.
Taking Chuck out of the trial was definitely a very hard decision for us to make, and it also made us take a mental u-turn – we had invested so much in this trial drug, and in the beginning we worshiped it and believed in our hearts that THIS is what was going to destroy the tumor. We invested so much time and energy in this trial, and it was very hard to turn around and decide that this was not Chuck’s magic bullet. But Chuck had given it his all – literally. He had given up his body to research, going through grueling weekly one and a half hour MRI’s, weekly blood tests, and suffered through the horrible side effects. And in the end it just wasn’t for him, he gave it his all but he wasn’t going to let this drug take his life away from him too. This entire experience has been such an incredible mental and physical journey – and we have learned to truly take one day at a time, and to be thankful for each and every day. We have also learned the value of life, a life that can be experienced and enjoyed and filled with joy – and there was no way Chuck was going to be able to experience that kind of life while on AZD. We hold fast to our decision and know that it was the right one.