Since my last update there has been lots of movement. When I visited with the doctor on the 18th of April after my results came back from my tests, it was clear that we needed to explore the next level of treatment options.
The tests revealed that my cancer had started to grow back and my CEA score (protein marker) had risen over the last few weeks to 260, which is just south of where it was when I began treatment in September 2015. The CT scan also showed that my tumor had increased in size and become more “cloudy.” My coughing and ability to breathe has gotten a little more difficult and generally my body is working harder.
After the conversation with the doctor, the next question was, “what do we do next?”
We had a family trip planned with all the kids leaving in a few days and one of the questions was whether we should leave town or not? After meeting with our UCSF and Stanford doctors, and talking with my doctor at Huntsman Cancer Center, we collectively decided that we should go on our trip and that the doctors would collaborate, research, and figure out the recommended path forward.
They all said, “go on your trip, we will do the work to figure out what is the best path forward and we can talk via email or phone to make the recommendation.” I think you can see how awesome my doctors are, they have set a new standard of customer service. I think the unique factor is that they are passionate about the problem and are obsessed with trying to beat cancer in combination with being outstanding people. My Huntsman doctor is on sabbatical for 6 months and has given me his cell phone and continues to do all sorts of research for me. Amazing.
They also pointed out that for me to begin a new clinical trial I would have to wait at least 21 days to let the current dose of Chemotherapy get out of my system before I could begin a new study, so it made no sense to stay in town. I quickly agreed, and off we went on a family trip. This was a trip that is probably the last with just our own kids as my oldest daughter is getting married in August 2016 and my oldest son is leaving (June 1st) for 2 years to go on a mission for our church to Nova Scotia. So needless to say, this was a significant trip for our family in many ways.
Many of you will understand this unique moment when you can see that your children are branching into many new arenas and your family is expanding in many wonderful and amazing ways, and at the same time this marks a moment of change that is reason for a little pause.
For younger parents, this is almost impossible to imagine happening and for the more seasoned crowd, you have long passed on this moment and can’t imagine life any different with all the new wonderful and amazing family members! So to me, this was special family time and I was stoked to be able to be with my family.
While away I emailed on a daily basis with the doctors, my tissue samples went through more testing, the doctors surveyed the world to find a trial that they thought I could get accepted into. You will recall that my situation is such that I have a HER2 mutation and so when figuring out the next line of treatment, this is a major consideration along with Immunotherapy options.
HER2 is typically found in breast cancer patients and is only found in 1-2% of lung cancer patients, so it is quite rare and there are not very many trials or approved drugs at the moment that I qualify for or that insurance companies are willing to pay for.
For about a week, the plan was to go to USC to work with an outstanding doctor there who said she would accept me into her trial. I was asked if I had a support system in Southern Cal and I quickly brainstormed a big list of people that I knew would be willing to help in any way so it was easy to say yes. Lots of love to all my SoCal peeps! The downside of the USC trial was that it only allowed me to get 1 drug that is targeted towards my HER2 mutation, so they kept looking.
About a week later, they found a trial at UCSF in the breast cancer department that is testing 4 different drugs that seems pretty on target for my situation. They spoke with the doctor and she said she would allow me in the trial even though I was a lung cancer patient. Today (5.18.16) I had a CT Scan that is the last hurdle I have to get over to get into the trial, so I am about 95% sure I am in. If all goes well, I will begin the new trial on May 24th.
Just to give you a quick overview of the trial for the more technical folks – This is a phase 1 clinical trial assessing the safety of Neratinib in combination with Paclitaxel, Trastuzumab and Pertuzumab in women and men with advanced or metastatic HER2+ solid tumors. Throughout the course of treatment, Neratinib will be taken daily (oral pill), Paclitaxel and Trastuzumab will be a weekly infusion, and Pertuzumab will be a tri-weekly infusion.
So the news is exciting and I am pumped up about the possible results of attacking my mutation in hopes of getting at the root of where my cancer started.
So I am taking this as a major blessing in my life that my cancer grew back at just the right time that this new trial is opening up (they only have two patients at the moment on the trial) and that I am able to get into it. It will be interesting to see how my body responds. This again will be another experiment and as long as we can stop the cancer from growing and shrink it, I will stay on the trial. The initial run is for 12 weeks and we will observe along the way and adjust as necessary. Living an “emergent” life is becoming quite exciting!
One of the interesting questions for me (as I have previously discussed) is finding out about possible side effects of the new trial. Do I want to know the possible side effects or just let it unfold? I worry that my mind is such a force that I could will the side effects to occur or not as opposed to just letting happen whatever is supposed to happen, and appreciate them as they appear.
At the moment, I have not fully read the packet of “disclaimers and potential side effects” like I have in the past. The positive aspect is being aware such that when something occurs you are not surprised; the downside for me is that I start wondering if the side effect is going to impact me.
Given that the combo of these drugs have never been given before it is hard to totally guestimate the side effects. The nurse did tell me about the very strong possibility of losing my hair, diarrhea, numbness in the fingers and toes, and a few others. When the nurse was telling me the potential side effects she said, “you might have level III bowel movements.” I was sitting there asking myself, “am I supposed to know what level III bowel movements means?”
One of those awkward moments where you ask yourself should I probe on that or look it up later? I could not help myself so I asked, “what does level III mean?” She responded, “more than 7 trips to the toilet.” (porcelain Honda as we used to call it for some reason as a kid) I then probed further what is level II? She said, “5-6 rides on the Honda, and level I is up to 4.” So I hope this data gives you some content to use for all those cocktail party conversations that are flat out boring - “What do you do for work? or for the college kid, “What is your major?”
I would not be telling the truth if I did not say I wish my current treatment would have held my cancer under control for a longer period of time, but clearly that is not the case. Sometimes I think about this like it is a game or sport and I am competing with cancer.
Then I stop and think, I can’t view this as a win or loss, it just is and that is perfectly ok. I can only control what I can control and as long as I am doing everything possible that is all I can do. The key is how I respond to the present and rally around my next moves and be open to the discovery process.
We officially ended the last trial on Monday the 9th of May and I had my exit tests. We saw Johnathan who was my clinical trial director. You will remember some of my earlier posts about how challenging he was to work with. As we ended, he came to say goodbye and it was a tender moment. Jan had made him a bracelet 3 months ago and he wears it every day. We grew to love him and he grew to love us even though things were rocky all along the way with him in various ways. I think we appreciated him in spite of his weaknesses and knew that he was doing the best he could do with the skills he had been taught. We have gained a friend that we will have forever. This is a clear W for us and that was within our control!
Words cannot describe how appreciative I am for all the support, prayers, love, thoughts, and positive energy I know that you are all sending me and my family. It is truly humbling and I am deeply touched. I only hope that in some small way I can return the love and friendship to my fellow human beings.
Have a great day and appreciate every moment you get to live and breathe.