When my husband was first diagnosed, many people recommended a glioblastoma clinical trial at Duke University involving the polio vaccine. Unfortunately, upon further review, I determined that it wasn’t available to newly diagnosed glioblastoma patients. You can read more about our early treatment decisions here.
It hasn’t happened yet, but statistically my husband, Kraston, is getting close to having his first recurrence. If this happens, I want to be ready with our next move. I am strongly considering a glioblastoma clinical trial, but there are a lot of choices. Which is good for future glioblastoma patients and a future cure, but makes it tough to figure out what might be a good fit for us right now.
So this post explores the process that I am using to narrow down our options. If you are a glioblastoma patient or a fellow caregiver, you can use this process if you are searching for a glioblastoma clinical trial.
What Is The First Step?
My first step was doing a search on ClinicalTrials.gov for the following criteria, which today yielded 147 studies:
- Interventional Studies
- United States
- 34 years
Can You Narrow Down The Location?
Much of the research on glioblastoma seems to be happening on the coasts. So if you live on either coast, you will have a lot of great options without a huge travel time. Unfortunately, we live in Tulsa, Oklahoma making it somewhat onerous to travel to the trials in California, North Carolina or Massachusetts (those which seem to have gotten the most press this past year).
My husband and I have 4 kids under the age of 8, one of which is an infant, so traveling very far away for very long is unappealing. We don’t want to waste days traveling for a trial that could only add days to his overall survival. Depending on your situation, you may have a different tolerance for travel.
The Tulsa International Airport offers nonstop flights to 17 different cities in the US. So I went through that list of cities to eliminate those which involved more than 2 hours of travel time. I’ve narrowed it down to the following 5 cities which offer a glioblastoma clinical trial:
- 110 minute nonstop flight
- Oklahoma City
- St. Louis
These cities span 4 states and the advanced search on ClinicalTrials.gov only allows you to include up to three different different states. I checked all of the studies available in Denver and they were also offered in one of the closer cities, so adding Missouri, Texas and Oklahoma as search criteria reduces the number of results to 43 studies.
Can You Narrow Down By Phase?
Clinical trials can be classified as one of 5 different phases. Only 4 of our 43 at this point are Phase 3. These are the studies that have shown promise in their phase 1 and phase 2 trials. In our opinion, the downside of a Phase 3 trial is that there are multiple arms to the study where some percentage of the participants don’t get the experimental drug, they just get standard treatment. If we are going to do the standard treatment, we’d rather just do it in Tulsa.
So I am going to reduce my search to just phase 1 or 2, giving 34 results. At this point, I have pretty well exhausted all of the online search modifications that I was sure about. Below is a summary of my final search criteria:
- Interventional Studies
- United States, Missouri
- United States, Oklahoma
- United States, Texas
- 34 years
- Phase 1, 2
What is Next?
Now that I have reduced the list as best I can online, I downloaded a spreadsheet of the results to see how I can further reduce the list. When you download a spreadsheet, make sure you select all available fields so you get the most amount of information to analyze.
Looking at the information in the spreadsheet, I found one easy things to do a word find on. I am looking for clinical trials for after he has a recurrence, so I searched for “Newly Diagnosed” and eliminated those trials from my list. If you are looking for newly diagnosed trials, then you can search for “recurrent” and eliminate trials for which you would not yet qualify. Eliminating (4) “newly diagnosed” trials still leaves us with 30 options.
What Else Do You Look For?
This is where the process gets more personalized and subjective. I opened up each trial on the list and read through the information to find things which could eliminate a few more trials from my list. I edited the list down to 15 by looking for the following:
- Locations that were not yet recruiting in my preferred cities, despite recruiting elsewhere. The online search tool doesn’t make this distinction.
- Locations in Texas that weren’t in Dallas or Houston. There are a fair amount in San Antonio.
- Trials that had an “active comparator” arm, similar to the phase 3 trials. If there is a chance that he would be randomized to just the standard treatment, we’d just rather not take the time away from the kids. Depending on your financial situation, you might be okay with the possibility of the standard treatment within a trial environment. Most trials pay for the majority of your treatment costs.
- Studies with a maximum amount of dexamethasone less than Kraston’s occasional 4mg dose. If you are taking steriods, you will want to check the maximum amount allowed by the study.
- Studies which say they are only to be used as a last resort. Several said to do the standard treatment first, so I’m guessing they are risky and probably not a great option yet. Kraston is still doing pretty well.
- Researcher and Hospital reputation. I googled each of the hospitals and looked for their reviews as a cancer treatment facilities. Some trials list the primary investigator and you can google those names as well to read reviews of the researcher/doctors involved.
So Which Glioblastoma Clinical Trial Will You Do?
I can’t answer that yet. I have narrowed it down to 15 studies, reflecting the following 5 different researchers/hospitals:
- University of Oklahoma, OKC
- Texas Oncology (multiple locations in D/FW area)
- Washington University (St. Louis)
- Research Facility (St. Louis)
- MD Anderson (Houston)
At this point, I have narrowed down the options far enough, that it is time to start reaching out and making contact with these organizations. Some of the trials have pretty length medical requirements that I am unable to determine for sure if my husband would be eligible.
Are you, or one of your loved ones, involved in a glioblastoma clinical trial? If so, leave a comment below with your experiences about how you/they decided which trial to participate in. Read More →