On Monday the 15th of August I received the results back from my CT Scan on 8.8.16. I have been on this trial for 12 weeks that was focused on attacking my HER2 mutation and the first 6 weeks we had amazing results in terms of shrinking the tumor.
The results showed that the Cancer has grown back a little since the previous scan. It is unfortunate that we could not keep it under control for a longer period, but it is not bad enough to change treatment immediately. We will begin monitoring with a weekly test of my protein marker, and I will have another CT Scan on September 5th to assess.
You will recall there are three factors that determine how I am doing:
How I feel: I feel pretty good, I am operating a normal life for the most part, and my energy is good. I can tell that things have gotten a little worse over the last 6 weeks, but they are dramatically better than before I started the HER2 Trial at UCSF. I am able to work, exercise, and we have been doing a much better job of managing the various side effects associated with the 4 different chemotherapies I am taking. The one side effect we have not been able to get a grip on is my taste buds. I basically cannot taste how yummy the food and drinks are that I am eating. I have learned that many people suffer from not being able to taste and smell their food, so I am not alone. Food has become a “fuel” activity…so reallllly appreciate the simple ability of tasting God's creation of food!
CT Scan: As I have described in the past, my tumor is hard to measure because it is poorly differentiated and is more like a cloud. The doctor looks at it and determines if the cloud is thicker or thinner so there is some subjectivity to it. After having looked at my scans many times…it is pretty easy to see when it is more or less cloudy than the previous scan. They pull up your scans and split the computer screen and they compare the exact images. The granularity of the scans is amazing and it is really interesting to compare and contrast the differences. My doctor says that he thinks I could be a Radiologist because I have gotten pretty good at it!
Protein Marker: The third piece of data that we examine is my protein marker and it has been going down, which is great news. It is hard to tell exactly what this means because last time my protein marker was increasing and my CT Scan got better…so it is basically crazy to try and figure this stuff out. Net net you take this as a positive sign when the marker is heading in the southward direction. We will monitor this each week and see what direction it goes and then assess what this might mean.
Of course you hope that every CT Scan gets better and better, but that clearly is not my situation at the moment. We will monitor all three factors above and instead of waiting 6 weeks for a CT Scan, we will have one every 4 weeks.
The guidance is that if your cancer tumor has grown more than 20% or is directionally heading that way, it is time to look for new treatment options.
My tumor has not grown back that much, but to be proactive we will begin to explore Line 3 treatment options should the next scan show that my tumor is continuing to accelerate. I will be working with my various doctors at UCSF, Stanford, Santa Cruz, Huntsman Cancer Center to collaborate and map out the potential options over the next week. If we determine that we want to change, there is typically some waiting period to let the current chemo out of your body before you can begin a new trial or treatment regime.
Many of you have heard about Immunotherapy Treatment Options which is probably the most common path for my next line of treatment. I have been learning about these over the last year, so I am pretty educated on at least some of the options.
As I reflect on the situation it is quite fascinating to see how in 6 weeks the drugs that I am on can basically do dramatic things to make me feel better and to reduce the tumor… and then 6 weeks later the same drugs have been unable to stop it from spreading and it grows back. They refer to this as “resistance” and it is just amazing how resistant this crazy thing called cancer is. Professionals have just have not been able in some/many cases to figure out how to tame it for the long haul. This is why these doctors and health professionals are so amazing…they desperately are trying to figure out how to beat the disease!
Can you imagine always losing to Michael Phelps at the Olympics and just trying to figure out some way to win a medal after all the hard work you put in!? That is what these doctors and nurses and researchers must feel like…and God bless them for their continued efforts to keep trying. The great news is that we are succeeding in many situations and these brilliant people around the world are finding cures and saving peoples lives every day!
The key is to stay positive and enjoy the process, learn from it, be aggressive with treatment options, and appreciate every day for what you can learn and accomplish while in this life. As we all know life is a probationary period, and we are responsible for our own happiness while we have the opportunity to live in this beautiful world.
This is totally not related to cancer or my situation, but because of my situation I have been able to observe something and thru my observation it created an insight that I think is worth sharing.
For those of you who know our family, you can attest that our house is a wonderful rotating door of people, friends, family, neighbors, unknowns, and great times. I believe that the energy and spirit that exists attracts and invites people to feel loved and welcomed regardless of how well we know them and that it enriches our lives and is a great blessing to us.
Many friends over the years have come to visit and stay and have gotten to know other people in the community such that they have created their own friendships with people that are our friends.
When these friends of ours think about Santa Cruz they always say amazing things about our community and that they love coming to visit, that everyone is so friendly, that the surf is amazing, the biking is breathtaking, the food is raw and pure, the diversity is beautiful, the ocean and trees are a unique blend they have not experienced, etc.
The insight is that, if these people came and just visited with my family, they would probably score the visit at about an 8/10…which is a pretty good score, but because of the “other” people that they meet (unplanned and not expected), most of them I think would bump their trip to a 10/10.
As I have watched this happen numerous times and heard people in many ways give the credit to my family for entertaining them, showing them a good time, etc... the real difference maker has been the “other” people that spontaneously came into the mix and created a deeper and more enriching experience for our visitors. They reached out to them not because they were “our” friends, but because they independently wanted their own relationship and by so doing it made our visitors feel important, loved, welcomed, and valued.
If I was to name or label this…I would describe it as: we were the Primary host and other people were Secondary hosts. How grateful I am for those people who have played this role for my friends and fundamentally changed their experience. It is said that it is better to have 100 people that love you, than 1000 people that like you. In my experience, clearly one of the things that pushes people into the “love” category are those that play these secondary positions.
So the key is to play whatever role you find yourself in, the spirit will guide you and prompt you to influence and make a difference. It should not matter where you sit, but what matters is that when prompted to play a role or to reach out to someone that you do it. I am very thankful for the many people who have played both Primary and Secondary roles as I have been able to travel and visit our amazing earth. These people have deeply influenced my experience.
Have a great day!
Greg aka part of Team Maddog!!