Judy Gray’s Immunotherapy Story

Looking back on it, I began to notice something was wrong many months, if not a year, before I was actually diagnosed. First, I began to experience a lot of pain in my hips. But I was 64 and I thought, well, this is just part of getting old. Then, a few months later, I developed a dry cough that simply wouldn’t go away. I ignored that for a long time, too. After all, if you live in Michigan, it’s pretty common to get the sniffles or a cold or a cough during the winter. Finally, I went to my internist in February of 2011. She said, “I don’t hear anything unusual in your chest, I’m sure everything is fine, but let’s take an X-ray to be safe.” And they found something suspicious in my right lung. I had one test, then another and another. I received the diagnosis of metastatic lung cancer in early March 2011, and was referred to Dr. Nithya Ramnath, a thoracic oncologist at the University of Michigan Comprehensive Cancer Center.

It had already spread to both my hip bones, which explained the pain I’d been having for many months previously. Then, two small metastases were found in the right parietal lobe of my brain. For me, that was the most upsetting thing of all, the last straw in an accumulating mountain of bad news. As it turned out, though, the brain metastases were quite treatable with stereotactic radiosurgery. To this day (knock on wood!) there have been no signs of recurrence there.  

By the spring of 2013, about two years after my diagnosis, the cancer had begun to spread widely and I had run out of treatment options I felt were worth trying. We were just about to contact hospice at that point, because all the signs were clear. That’s when my oncologist came back from the ASCO (American Society of Clinical Oncology) meeting that year, full of exciting news about immunotherapy and about anti-PD-1 and anti-PD-L1 clinical trials. Although the University of Michigan was not participating in these trials, she urged us to look into them.

So the next big hurdle was to educate ourselves. We had to learn about immunotherapy, and find out who was doing this research and how one gets into a clinical trial and who to talk to and how to get all the required records submitted. If you’re not already being treated at a center that’s involved in the clinical trial you’re interested in, it’s quite a challenge. We felt that this was my last lifesaving opportunity, but finding our way through the maze of national scientific and administrative spaghetti was really stressful.

We did lots of research, mostly on the internet. My husband, Peter, was the major researcher. He became an expert. Early on, he discovered the indispensable website clinicaltrials.gov. He called Johns Hopkins in Baltimore, because we knew that their Dr. Julie Brahmer was a star in the cancer immunotherapy field. We both talked to people at major cancer centers in Detroit, Chicago, Seattle, Boston, New York, and elsewhere. We looked at all the drug companies who were active in immunotherapy clinical trials for patients with lung cancer. Eventually, we decided that the anti-PD-L1 agent MPDL3280A looked like my best bet. We found the right people to talk to, got all the paperwork together, and sent it off in many directions. It took weeks to get that far.

Eventually we ended up at Memorial Sloan Kettering in New York City, where they had openings in their trial of the anti-PD-L1 agent that seemed best for me. For this particular study, your tumor tissue had to test positive for PD-L1. Biopsy tissue had to be submitted for testing, and then there were weeks of waiting to find out if the sample was PD-L1 positive or not. There’s a slightly amusing story about this…well, actually not all that amusing, especially at the time. One afternoon, the clinical trial doctor at Sloan Kettering finally called with my test results. He said he was sorry, but my tumor tissue had come out negative for PD-L1 and so I couldn’t enroll in the clinical trial. We were devastated, having pinned all our hopes on this opportunity. Then that same night, the doctor called back again and said, I’m terribly sorry for the mix-up, but I’m happy to tell you that you are actually PD-L1 positive. It seems the lab had tagged me as Patient JG, and my results had somehow been confused with those of another applicant, Patient GJ. To this day, I feel guilty about Patient GJ, who no doubt got the same two phone calls, but in reverse order, the first saying congratulations, you’re in, and several hours later a second call saying, Oh, sorry, we got confused, and you’re out. If there was going to be a mix-up, my end of that mix-up was certainly preferable.

The treatment itself was not a problem for me. I had no nausea or other immediate side effects. But a few days after my first treatment, I began to have fever and chills, and my white blood cell level bottomed out. The doctor clapped me in the hospital to get IV antibiotic treatment, assuming I had some sort of terrible infection. I was in the hospital for three days, but no source of infection was ever found.  It turned out that my immune cells were just very busy, like little Pacmen running around eating up the cancer. Since then, I’ve learned that it’s pretty common for patients who are getting a good response to immunotherapy to show “flu-like symptoms” early on, though not usually as severe as mine.

After the second treatment, I had a repeat PET scan. It was amazing to compare the new scan side-by-side with the pre-treatment scan, taken only six weeks earlier. The cancer’s activity had simply been shut down. Over the next few months, follow-up CAT scans showed the tumors shrinking, then disappearing altogether.

It’s been more than two years since I started the trial and about a year since I stopped. I’ve had no anti-cancer treatment since then. I still get CAT scans every three months, and everything remains stable. There is scar tissue, but no active disease process can be seen. It’s almost miraculous.

After about a year of treatment, I had to withdraw because of autoimmune side effects, which are fairly common with immunotherapy. This isn’t too surprising, since these treatments work by blocking PD-1/PD-L1 receptors, which are found on normal cells as well as cancer cells. After a few months of treatment, my thyroid gland was shut down by my own immune cells. Once diagnosed, this problem was easily treated with thyroid replacement hormone. But then I developed another, more serious autoimmune disorder, called eosinophilic fasciitis. This is a rare cousin to scleroderma, a fibrotic process that causes stiffening of the skin and connective tissue. It can be life threatening, though it wasn’t in my case. Nevertheless, it was debilitating, uncomfortable, and potentially dangerous. It was time for me to leave the clinical trial.

To manage my side effects, I am taking prednisone, a corticosteroid. I also take CellCept, which is usually given to prevent the body’s rejection of an organ transplant. It’s ironic that I now take anti-immune drugs to treat the side effects of the immune-boosting treatments that saved my life.

The fasciitis does seem improved. In fact, lately I’ve been bothered more by the prednisone side effects than by the fasciitis itself, and I’ve begun slowly tapering down the prednisone dose. It’s quite a balancing act between treatments and side effects and treatments for the side effects! 

Prednisone is a very powerful drug, and can affect just about anything. For example, it interferes with sleep, so I’ve been sleep deprived for over a year. It also causes the skin to become thin and fragile, so that every little bump causes bleeding or a big, dark bruise. Abdominal distention and weight gain, especially around the middle, are other delightful side effects. And, I keep looking in the mirror, waiting for the traditional prednisone “moon face” to appear, but that hasn’t happened yet. Prednisone also can cause weakening of the bones and gastric ulcers. The list of possible side effects is endless. Prednisone isn’t something you’d want to take, but it’s the main treatment for these sorts of disorders.

I was treated with various kinds of chemotherapy and was very fortunate to get a good response to each of them…for a while. For several months, this one would work and then it would stop working, and for several months that one would work, then it would stop working, too. It seemed the cancer was always able to find a work-around. 

Immunotherapy not only saved my life, but it has also allowed me to lead a real life. I wouldn’t hesitate to encourage other patients to reach for this new chance too.

Before beginning the clinical trial, I had been relying on a pretty high dose of narcotics just to make my pain level tolerable. Within a couple of months after I started immunotherapy, I no longer needed the pain meds. It was like getting a new lease on life.

But every six weeks there would be another CAT scan. Do you know the term ‘scanxiety’? With each scan, we’d worry that this time the magic would end and some new metastasis or progression would appear. But the magic continued, the scans kept getting better and better, and then all signs of cancer were gone. Unlike the cancer, though, the scanxiety never has gone away.

My husband 

has it way worse than I do. I have a much better ability to compartmentalize and, to be honest, I’m also very good at denial. Having a terminal disease does change your point of view about everyday life, though. It’s kind of weird to be one of those dots WAY far out on the survival curve, to be the person who has managed to live years beyond everybody’s expectations, especially my own.

Sometimes it feels like we’re sitting under an unstable roof. We know it’s going to fall down on our heads, we just don’t know when. And while we’re sitting under that roof, waiting for it to fall, what sorts of things seem worth doing? Is it worthwhile going to the dentist when you know the roof could fall on you any day? Does it make sense to buy a new coat?  Should we make plans to go to Florida six months from now? Should we even renew our subscriptions for another year?

When I first found out I had lung cancer, I didn’t think my younger grandchild would ever know me or that my older grandchild would be able to remember me. But in just a few weeks now, they will be turning five and seven years old and, hey, I’m part of their lives.

I would absolutely encourage cancer patients to look into immunotherapy. There are no guarantees. Not everyone with non-small cell lung cancer will respond, and even among responders, not everyone will get the amazing results I’ve had. But compared to chemotherapy, the response rates tend to be higher, and responders tend to have longer survival times and fewer side effects. Immunotherapy not only saved my life, but it has also allowed me to lead a real life. I wouldn’t hesitate to encourage other patients to reach for this new chance too.