I had my last infusion on October 31, 2016 and since then I have been searching for my next line of treatment as the scans showed that I had enough disease progression to warrant changing up my treatment plan. It has been an interesting path that I will tell you about. I have chosen to be part of a trial at UCSF starting on December 14th and I am excited about the possibilities.
My story in getting to this point is most interesting and I only tell you the story so you can see how wacky the process is and how much room there is to enhance health care in the future. I do not tell you this story so that you feel sorry for me…it is purely for entertainment and I hope you enjoy it. I trust that I am in the right trial because I did everything possible, and after doing all you can do…you have to trust the process…and know that things happen for reasons that are beyond our own comprehension.
When I had my CT scan on 10/31 and the results came back that we had some disease progression…it became clear that given the last few scans and CEA (protein marker) that it was time to begin looking for the next level of treatment. I felt pretty good but the trend line was saying that my disease was growing so it was time to find something new.
To get on a new trial, you typically need a 28 day “Wash Out” period where you get rid of the Chemotherapy that is in your body. So that meant that on 11/29 I could potentially start a new trial if everything worked out perfectly. So I began my search by asking my doctor at UCSF, I met with my doctor at Stanford, I reached out to my doctor at Huntsman Cancer Center, talked to Dana Farber in Boston, and I began to get ideas of potential trials that would work for me.
At UCSF there was an immunotherapy trial (CPI-444 +/- Atezo) that I went and interviewed in person with the doctor and then it was discovered the same trial existed at Stanford…so I reached out to them thinking that it would be good to mix up hospitals for a change of pace and to save 3+ hours of travel time. I went and met with my Stanford doctor and in addition to the CPI-444 trial he had another one (Irinotecan + VX 970) that he thought might be good for me. I got excited about both of them and said let’s pursue them.
In the meantime, UCSF came up with another trial (IL-10 +Opdivo) that seemed pretty cool. So I had three good options plus standard care that was available anytime. You might wonder…why not just go with standard care? A clinical trial allows you to test multiple drugs at once and potentially gives you access to something long before the general public could get it. If we knew how to cure my cancer, we would just go with standard care, but the evidence for how to solve my situation is not very conclusive, hence taking more of a risk is a smart path if I want to try and beat this cancer.
Not knowing how to best prioritize my options and not actually knowing if I could get into any of the trials I needed a way to figure out which ones to pursue in what priority order. I imagine the process is like trying to date multiple people at the same time; keeping them all interested in you, telling them they are your first choice, and at the same time vigorously pursuing multiple options in case you are not accepted or one appears to have increased ability to help you. As some of you know personally…this can be an exhausting and an exhilarating experience at the same time!
So it is tricky…they all require some sort of tissue samples, blood tests, interviews, CT Scans, EKG’s, etc. to make sure you fit the profile of what they are looking for. It is a lot of work and requires commitment to make it all happen…and in the back of your mind you wonder if you are even going to do the trial.
Keeping your options open is a key principle when picking a clinical trial to participate in….and it is a key principle in life…successful people always have options…you want to try and never do things that will eliminate your options down the road…trials are the same way…so I pursued them all with energy and interest.
The more you learn about each trial, you either get excited or less enthused, but you still have to pursue them because there are so many factors outside of your control that to eliminate your options would be foolish…and at the same time it is nice to have an internal monitor of which ones you are more interested in so you can go harder after those.
Each day you learn various facts and information evolves in a very whimsical way such that you never quite know what the next phone call or email will entail. It is impossible to tell the story in sequential fashion but I will try and give you the narrative in an entertaining way.
I decided that I was not smarter than the doctors on this particular issue…so I said to myself…let’s have a live conversation with all the doctors and I’d like to hear them battle it out in terms of which study would be most appropriate. Getting a phone call with 4-5 doctors is next to impossible…so I sent out an email to all my key folks and asked them to respond and prioritize which trials they would suggest and invited debate and discussion. This proved to be a good strategy and the team replied and I basically had my trials in priority order.
I started to learn several things as I continued my pursuit…I learned by a phone call one night from the Stanford finance department that my Blue Shield Insurance was no longer accepted by Stanford. They had severed their relationship at the end of 2015. Strange because I have been visiting my doctor there on a somewhat regular basis and had just been paying the bills thinking we were in network. Given this news, I had to determine if I went to Stanford, how would I pay for the services? We learned thru research and discussion that you can pay out of network fees or you could fight your insurance company for “continuity of care” clause and continue seeing your doctor. I went to my Stanford appointment knowing that there were issues but hoping that we could work them out. Upon visiting my doctor he recommended a different trial for me at Stanford (Irinotecan + VX970) or the (CPI-444 Trial). After doing lots of research, discussions with Sacramento government people, looking into the laws…it all got so complicated that basically I gave up the fight for my right for continuity of care. I was denied care because my personal doctor was not the doctor leading the trial.
Same hospital but different doctor was in charge. Seems crazy to me, but that was the rule. My doctor said, “there is also a law that says that no one can be disallowed from being part of a clinical trial.” So we pursued that angle and learned that only 3% of cancer patients do trials and they are in desperate need of people for trials so that learning can continue. Upon further discovery, we found that my particular health care coverage (which is expensive and is a PPO plan and is connected to Covered California in some way) has a clause in it that says they do not have to pay for trials.
So basically there is a law and my insurance has a clause that gets them out of the law…seems crazy to me…but I’m in the midst of trying to figure out which treatment plan to go with and I am spending most of my time dealing with crazy things like this. Frustrating from my perspective as well as the doctor’s perspective. So bottom line, Stanford became a very difficult place to be seen.
At the same time, I am pursuing my options at UCSF, the doctors identify another trial they think is even better and so I go and visit with the doctor, sign the consent forms, do some testing, and get a little excited about the new trial. I decided to email my Stanford doctor to let him know...that night I get an email back and he says (IL-10 + Nivolumab/Opdivo) is the same study we have here at Stanford and I did not even tell you about that one because it is only for Squamous Non-Small Cell Lung Cancer and you have Adenocarcinoma…so you can’t do that trial. I’m thinking, is there a possible chance my doctors at UCSF have a different trial or somehow they overlooked or did not know this fact? So I email them back and ask…”Are you sure I can do this trial?” After a couple of days of exploration, the doctor from Stanford is correct…I can’t do that trial…I don’t qualify.
In the meantime, the trial coordinator from Stanford calls and says we have some creative ways to get you into a trial…it required filling out a bunch of paperwork and I was going to begin the process to get in the (Irinotecan + VX970) trial. So lots of options floating around and lots of possibilities…I am keeping them all alive as best as possible. In the meantime, the folks from Huntsman Cancer Center tell me about a trial (Virus + Keytruda) that seems quite interesting…the question is when the trial will open again for new patients and do I want to travel for it?
In the meantime, I am going to UCSF to get further screening done for the CPI-444 Trial which was not my first choice due to the randomization that happens with the trial…you are not guaranteed to get one of the drugs (Atezo)…so it is a little more risky than the for sure path.
As I was driving home from UCSF, still not sure what to do…I get a call from Stanford and they tell me I can’t do the Irinotecan study because some other patient signed the papers to start the trial and they have to wait and see how that patient does before they let someone else on the trial. The guy actually said, “we have to wait and see if he dies before they put someone else on the study drug.” I was listening and said to myself, “blessing in disguise.”
From all of this I am honestly finding the situation fraught with humor and I was just going with the flow knowing that things would work out…and anxious to see what the next phone call would bring.
I continued to pursue the Huntsman option and eventually found out they could not realistically get me on the trial until January…so the only option left for me was the CPI-444 trial at UCSF…which is the first trial that I started to explore. So after a very interesting journey and several weeks of trying to figure out the right thing, I believe the trial I am going to start is the right one for now and I am excited to get going. I got randomized to receive the Atezo, so I was real happy to hear that news on the 13th of December.
I have appreciated the calm assurance that the right thing will happen. The good Lord teaches us that the Lord will bless you after you do everything you can do to help yourself. If this is true, I will be blessed.
Have a wonderful holiday season with your family and friends and enjoy the season for what it teaches us about how to love and serve others. I will be spending wonderful time with my family and friends enjoying the great outdoors up in the mountains…hopefully shredding the POW!
Lots of love and greetings towards all of you for your kindness and heartfelt love towards me and my family. I have been a recipient of human kindness beyond my wildest dreams.