Marika H’s Immunotherapy Story

I was first diagnosed with cancer at around age 50. It was uterine cancer, and I had a complete hysterectomy. Then about 15 years ago, I was diagnosed with kidney cancer, and my left kidney was removed. I was doing very well. I didn’t need any after‑treatment, and I thought it was onetime event. I went on with my life, until one day when I went to the bathroom and I had a lot of blood in my urine. I went back to my urologist, and he sent me for a CAT scan and discovered that I had a tumor in my urethra.

I traveled to New York from my home in Florida, and found a urologist who would be able to remove the tumor using laser surgery. I did that twice. But, unfortunately, on my third visit we found that the cancer had not only grown but had become much more aggressive. They told me that my prognosis was very poor. They said I had to do chemotherapy, but probably that will just arrest the cancer, and maybe only temporarily.

I came back to Florida and I found an oncologist (a very, very good oncologist, by the way) and he prescribed the chemotherapy, which I was on for three or four months. The chemo did what the doctors expected: arrested the cancer temporarily, but didn’t eradicate it completely. So my only other choice was going on a clinical trial for a PD-L1 immunotherapy.

I went for my first infusion, which took one hour, and then they observed me for two hours to see that I didn’t have a reaction. I didn’t for the first two hours, but on my way home I had a pretty bad reaction. I started trembling and it was very uncomfortable, so I called up the doctor and they told me to take Benadryl. After that, we changed the length of the infusion, and I haven’t had a reaction since.

My first CAT scan, after three infusions, showed the tumor was reduced by about 50 percent. We were very, very happy with that, and of course I continued with the treatment.

I’ve been on the trial now for five months. Every two weeks I travel to Sarasota, which is about a three hour trip from my house, and get an infusion. In a way it’s like forced rest. I go there and I take my iPad and I read, and usually my son drives me. I eat, I read, I sleep, so it’s not so terrible.

I’ve had three CAT scans since the first one, and every time the tumor was smaller and smaller. By my last one, it was less than six millimeters, and they said that it’s so small that it’s hard to tell which part of it is tumor and which part of it is just scar tissue.

My hope is, of course, that they approve the drug, because if they do I can do it here locally, and I won’t have to take that trip anymore, which would make my life much, much easier.

Other than the immunotherapy, I think they attribute the success to my lifestyle. I had polio at the age of 18 so it’s partly by necessity, partly just the way I am; I’ve always been athletic and I’ve always done a lot of exercise. I’m still swimming about 40 minutes a day. I do yoga just to keep myself flexible, and I try to be as active as possible.