The Trial

About a minute after I found out I had Stage IV ovarian cancer, back in February 2016, I learned the word immunotherapy. For at least a year, and occasionally since then, people sent me links to videos and articles about immunotherapy. And although there was no immunotherapy treatment available for ovarian cancer (and still is not), it was obvious that this was the future of cancer treatment. And what a promising and magical treatment it seems to be.

I’ve read the articles and watched the videos. I particularly remember a 60 Minutes segment, which aired deep into my first awful round of chemotherapy, about treatment for brain cancer that seemed to be working fantastically. Although these programs and articles always have an very upbeat tone, this one also talked to at least one woman who was in a trial where she suffered intensely from the treatment. The treatment involved injecting a modified version of the polio virus into a brain tumor to get the body’s own immune system to attack the tumor.

There are two main kinds of immunotherapy being tested. One type does what the polio immunotherapy does, injects a (modified) virus the body will recognize into the body to get it to attack the cancer. The second type works with super T-cells, or Killer cells, immune cells already in the body, super-sizing them or injecting ones that recognize a specific cancer that otherwise goes undetected, and these immune cells duplicate and do the work of eradicating the cancer.

About three years ago, at a one-day conference at Mayo in Rochester for ovarian cancer survivors, I heard a talk by a researcher who was conducting trials using these super T-cells. The researcher showed us a little animation where a T-cell was designed to attach to the ovarian cancer cell and flip a switch, turning off something that allowed the cell to remain undetected. However, the crafty ovarian cancer cell had some other mechanism that allowed it to just flip a different switch on the other side of the cell! This was infuriating. The ovarian cancer cell in the animation had not one but two invisibility mechanisms. Still, the researchers had kept at it and now had some kind of additional agent or superpower to go over and flip off the second switch. They were going to start testing it. I almost knocked my chair over running up to see if I could possibly qualify. I did not. At that point we had just detected the return of the cancer, after an 18-month remission. Eight months after the conference, I was getting my second round of chemotherapy.

I occasionally look at the list of trials available. My sister-in-law Tina also occasionally does searches and sends me possibilities. Usually I can just go down the list and see that I do not qualify. I am not BRCA positive (a primary genetic mutation for breast and ovarian cancer). I am not carboplatin-resistant (the toxic but most effective treatment that eventually the body can’t tolerate, and which I’ve had four times now, in combination with other chemotherapy agents). I’m so done with carboplatin.

However, about a week ago she sent me a list of three trials, and one looked right for me. It is an immunotherapy trial, and involves injecting modified measles cells into the peritoneum (abdomen) to rally the forces to fight cancer there. I sent the link to my oncologist, who confirmed that it seemed like I would qualify, at least given the broad criteria.

It is a Stage I/II trial. That’s early. Early trials can be scary, because they push limits. Stage I and II trials are the first tests to see if a therapy will work, and also involve increasing the amount of the therapeutic agent to higher and higher doses to determine which dose works best– and find out when the dosage becomes too toxic or harmful.

I tried to get more information on the trial from Mayo, but I can’t talk to the researcher until they have reviewed all my medical records to see if I truly am a good candidate for the study. That meant contacting my oncologist and my surgeon (two different offices) and mailing requests around. Some information can be faxed (believe it or not, these offices still depend on fax machines, which I guess is a secure way to exchange information). Some information will need to be burned to a CD and mailed to Mayo. I also had my oncologist office fax recent information to my surgeon (a gynecological oncologist) to get her opinion on my participation in the study.

It was an intense week. After all, I am on a break. A break!! It is very difficult to think about signing up for something that will at the very least cause me discomfort and some pain, treatment, when one is on a break. Then there is the issue of “the devil you know.” Because when I think logically through things, I know that the only other option out there is more chemo, maybe in a few months. I mean, yes, I know those side effects, I can deal with the fatigue and the taste issues and the blood issues and some nausea. I know how to do chemo. But I really don’t want to do more chemo. And the chemo is becoming less effective.

It seemed to me that some people in those immunotherapy studies with the polio to the brain really suffered. Like hospital-stay and near-death suffering. I have had relatively little suffering so far. Quality of life is important. I don’t want to screw that up for whatever time I have left. It was a lot to think about. It was super heavy.

Then I found, deep in the interwebs, a report on an earlier study that seems to match this one. It started in 2014 and ended in 2017 and there were results. Results! Published in 2019. Holy cow. This was exciting news because it means that a) the results were positive enough that they decided to do another study, and b) I could find out something about the results and the side effects when I talked to the doctor at Mayo.

Actually, I found some of the results right away. Not about how effective the treatment was, but about side effects. It was just a chart with numbers, but it was revealing. First of all, none of the side effects were dramatic. ALL 39 women in the study completed it– no one left the study either because of death through progression of their disease or because the side effects were so bad they couldn’t go on with it. In the second phase of the study, where women got higher doses, all 16 of 16 reported abdominal pain. Most had flatulence (don’t we all) and some had diarrhea. This makes sense given they’re injecting the cells directly into your abdomen to fight cancer that is in your abdomen. I remember the first time I had any treatment at all, when the cancer seemed to realize it had been discovered and something was coming to kill it, I had intense abdominal pain during treatment. That stopped, though, by the third treatment.

The other side effects reported were familiar to me. Some nausea, some blood count issues that resulted in fatigue. I haven’t been prone to nausea, but also there are meds for that. None of these side effects scared me at all, and the fact that all the women made it through the trial was beyond encouraging.

So here I am. Now I wait for the medical records to be sent out and reviewed, and the appointment with the doc at Mayo. Now I find myself not scared but hoping that I am a good candidate. I realize there are things that can disqualify me– do I have “enough” cancer in my peritoneum? Do I have too much cancer in my right lung? I know that my overall good health improves my chances of qualifying. The trial is for women who have had multiple recurrences (I’ve had three) and who are Stage III or IV. Stage IV means it has spread elsewhere, so maybe my lung won’t disqualify me.

Immunotherapy. I’ve been waiting and hoping treatment would get me to the place where this magical new treatment option would be available. Let’s hope it lives up to the promise. Let’s hope I have made it there.