For the past few weeks, as the rate of disease progression has slowly increased, we have been much more focused on immunotherapy clinical trials. At any moment my cancer can mutate and explode. Cancer does not necessarily have linear progression. The fact that I have felt better in the last couple of weeks than any time since my treatment began can be “fools gold” by lulling me into a false sense of security. Dr. P strongly suggested during our meeting last week that the sooner the better was the best plan of action. The fact that I feel good and am in good health is the perfect time to do a trial.
Finding clinical trials is a very confusing, time consuming, and an intellectually challenging task. The federal website of trials, ClinicalTrials.gov, is like a sink hole. It can swallow you up. There are thousands of trials all over the world. The site does a poor job of sorting them by type of cancer, trial purpose, and does a poor job of keeping them current. So trials shown as recruiting may be closed, new trials that are recruiting may not be listed. Then you must decipher if the trial makes medical sense for you, based on the science involved and the biological makeup of your disease. If you’re not an oncology scientist, good luck. You will spend hundreds of hours researching medical abstracts, with Google handy to explain the terms. That assumes you have the bio markers of your tumor, which many patients may not have.
To my rescue has come a wonderful group called ColonTown. ColonTown, a private FaceBook group, has created a spreadsheet of trials designed to address the general characteristics of my tumors sorted by purpose and by state and country. ColonTown has a few thousand patients like me along with caregivers. It offers emotional support, but offers more than that. They have a subgroup devoted to trials and science only. Among its members are patients who are also oncology scientists who can explain the science of a trial, forward information on the drugs and many members can share their experiences with the trials. One trial I was investigating listed a drug only by a code number. I inquired among the group if anyone knew what it was and the science behind it. A fellow member and Oncolgy scientist found the code name drug on the drug developer’s resume (he was looking for a new job) with an explanation of how the drug works! Ha! I am now on the waiting list for that trial in Tucson.
Immunotherapy has had some success, but it has been limited to cancer with what is referred to as “hot” tumors. With colon cancer 85% of patients have “cold” tumors. Unfortunately I am in with the majority who have “cold” tumors. The goal of current immunotherapy trials is developing ways to turn “cold” tumors into “hot” tumors. I think of the tumors as “hot head” tumors or “stoic” tumors. With “hot head” tumors it is much easier to get a reaction. Just as with hot head people, it’s easy to push their buttons and get the reaction you want. Keytruda and Opdivo are two similar immunotherapy drugs that have had success with “hot” tumors, but virtually no success with “cold” tumors. Tumors that are “cold” are like stoic people who are not so easily manipulated. So with these tumors, instead of using one type of therapy drug to attack the tumor, they use two or more. These therapy drugs are called pathway drugs. Their goal is to find a pathway into the tumor for our immune system to attack. Early results are encouraging. There are other immunotherapy methodologies such as lab created viruses or proteins that are designed to breakdown the tumor armor, opening the door for our immune system to kill the stinking tumors off.
Last week I was turned down on two trials, one because of insurance, the other because of my polio history. Through ColonTown I found another trial. This was a Phase 1 trial that was basically testing the toxicity and dosage of the drugs. It just so happens that they had just finished with that stage and are now in the expansion phase. They called me early Thursday afternoon as they were preparing for a meeting on Friday morning to select cohorts for this study and wanted me to email them information, lots of information, so that they could include me in the review. So little Lee spent hours scanning 23 and 26 page bio marker documents into PDFs along with many other documents of scans, radiation notes, blood tests, doctor notes, etc. Some of these I had to go to Dr. P’s office to retrieve. It was worth the effort. Friday afternoon they called and requested that I come in to “seal the deal.” We have an appointment next Wednesday with the CEO and top researcher of Pinnacle Oncology in Scottsdale. They also offered another trial, but it is a “first in human” dosing trial. Although it worked in primates…I dunno. In either case, as with most early-stage trials, they usually fail. We are going into this with our eyes wide open and can always drop out whenever we wish. Still, the science is there. And there are thousands of brilliant scientists and hundreds of billions of dollars chasing this problem. I also remember the brain cancer survivor at the talk I gave last week. Her trial drug did not pass the FDA threshold of efficacy but has worked for her now for nearly 20 years! So here we go on our next adventure.
When I am doing a trial, I will be leaving Dr. P and the folks at Arizona Oncology behind. They are great people from top to bottom. In April I will be featured on their parent company’s website, US Oncology. Below our two photos they took of me and the people who took such great care of me the last 22 months. Thank you Green Valley Arizona Oncology!