June 9, 2017 | By Rose Wittman, as told to Rachel Tompa
Rose Wittman, 59, is a P.E. teacher and volleyball coach in Salina, Kansas. She participated in a clinical trial run by Fred Hutchinson Cancer Research Center and University of Washington researchers testing a combination of T-cell therapy, an immune-boosting drug (avelumab) and radiation or interferon for patients with the rare skin cancer Merkel cell carcinoma.
I had this bump; it felt like a marble on the right front part of my hip. I showed it to my general practitioner and he said it could be a lymph node, it could be a fatty cyst. He said let’s just watch it and see if it changes. It didn’t hurt; it didn’t anything. In the summer of 2015 when I was done with my summer volleyball season, I told my husband [Jim], “I think I need to get that checked out.”
The doctor said we should just take it out. They did that procedure on a Monday. By Friday I hadn’t heard anything. Finally the surgeon called. He said, “I don’t have very good news. You have Merkel cell carcinoma.” I said, “What is that?” He said, “Well, it’s a rare and aggressive type of skin cancer.” I said, “I’ve never heard of that.” He said, “Neither had I!” They had to send the sample to a lab in Georgia. That’s why it took so long.
Of course I got right on the internet, and I’m like, “Oh my gosh”: rare, aggressive, no known cures. Then I kind of panicked. I didn’t feel bad. I had no other symptoms at all.
We called our kids and family. I have a sister-in-law in Arizona who had been a nurse and she did some research for me over the weekend. By Sunday she called back and said, “You need to go see [Merkel cell carcinoma researcher] Dr. [Paul] Nghiem in Seattle. He’s the best, you have to get into Seattle to see him.” Jim and I watched some videos of Dr. Nghiem speaking about his work and we had a little relief, but we were still scared to death.
Then the next week — this was the end of July 2015 — we flew out. [I was with] my husband and daughter, who’s a nurse, and my sister joined me from Indiana.
I saw Dr. Nghiem and he was so super. Later, the radiologist told me I needed to have radiation for six weeks in that spot. We thought it was a no-brainer for me to stay [in Seattle to get radiation] so that’s what I did. I went in every morning at 8:30. I could get three Hail Marys in by the time they got me done. It was fast.
I am so fortunate. I have three daughters and they each came out and stayed a week with me, and then I had two good friends that came out and stayed a week, and my husband came back out. So I had somebody with me all the time.
‘It was Merkel again’
In week three or four of my radiation, I scratched my neck and felt something, and I was like, “What is this?” I told Julie, the radiation nurse at the University of Washington, “I feel something here.” It kind of felt like a mosquito bite but I knew it wasn’t. The doctor did a needle biopsy and here it was, it was Merkel again. They did a scan, and there was one [new tumor] on the right side of my throat and one in my right armpit.
We finished radiation and they were trying to enroll me in a trial that had a couple spots left. I came back to Kansas and I went back to teaching and coaching. I just felt great, I didn’t have any side effects from the radiation. Sometimes I felt really guilty because I felt so good.
In September I went back out to Seattle because there was a spot in the trial. They did all the preliminary tests, the bloodwork, the scans, they measured the tumor in my throat. That was on a Friday. I was to start the trial on the next Monday. Sunday night Dr. Nghiem and Dr. Erica Shantha [a research fellow in Dr. Nghiem’s laboratory] called me and said, “We have some news that’s not good: You may not be able to start the trial tomorrow.”
I said why? They said, “It’s not big enough. The tumor in your neck is not big enough.” It had to measure 1.5 cm; mine was 1.3. I had to come home. I wasn’t able to qualify for that trial.
I was all ready to go for that trial. I have girls who are 32, 30 and 26 and one of them was getting ready to get married and to think about grandkids. And I thought, if this doesn’t work I don’t like the end result.
Everybody was in disbelief. They said, we can see you have cancer right there, it’s growing. I’d feel the tumor and look at it every night. My teaching friends were starting to notice. They could see it. They were all blown away by the idea that it had to get bigger. They thought you’d want to zap it and fix it. The doctors reassured me that there would be other trials all around the country. I said I’ve been in Seattle for six weeks, I’d just as soon come back.
I came home and I had to wait. The waiting game, that was probably my most disappointed time. Without sounding too churchy, you have to turn things over to God. A lot of people were in my corner and praying. When I was teaching and working, that kept me busy. I’m just not a person who sits around and feels sorry for themselves. I tried to keep positive and think, yep, they’ll get it.
A new trial
Toward the end of 2015, Dr. Nghiem and his colleagues at Fred Hutch, including immunotherapy researchers Drs. Kelly Paulson and Aude Chapuis, launched a new clinical trial combining the immunotherapy drug avelumab, T-cell therapy and interferon or radiation. Wittman was the first patient enrolled on that trial; she started the experimental treatment in late December 2015.
It was pretty cool — they took my T cells out and I was able to watch that. Then I started coming out to Seattle every two weeks. I told myself: It’s like a business trip: You get on the plane and go, and come back. I’d leave on a Sunday night and be there Monday morning, getting my bloodwork and infusion and seeing Dr. [Shailender] Bhatia. Then I would zip out and get on a plane and be back in Kansas by 11:00 that night. I was in and out in about 24 hours.
[Getting the T cells extracted] didn’t feel any different from a normal blood draw for me, other than that I had to be lying there for 3 hours. It was a pretty neat process: Your blood goes out of your body and through this separator and then back into you. The very first time I got my T cells [extracted], Dr. Nghiem and Erica invited us to tour their lab, which was just way cool. The gal back there in the T-cell part pulled out [my cells] and said, “Here are your T cells!” I thought, good grief, that’s crazy.
I had radiation on the tumor on my neck before I had the T cells. It makes that area mad and then when they put the T cells back into your body, they go to that spot, that’s my understanding of it. They’re like, we have to go there and fix that.
I was always feeling [the tumor on my neck]. I probably had black and blue marks from feeling it so much. It was the size of the golf ball when they first did the radiation. Within 24 hours [of the first T-cell infusion] I thought, am I imagining this? And within a week [the tumor] was almost all gone. It was just that fast, that crazy, it worked so well. Jim and I were ecstatic.
My first set of scans showed that the tumor was shrinking, and my second set [that] it was completely gone — what they call a complete response.
I try to tell people: When a doctor tells you chemo and radiation are your only option, try to make sure you really uncover everything. People say you have to be your own advocate for your health, and you really do. I’m so thankful that my sister-in-law did her digging.