Lynn Luckeroth, 59, is no stranger to cancer. She lost both her mother and her son to the disease. In the mid-1990s, while she was dealing with the trauma of her son’s illness, she learned that she herself was also sick, with recurrent melanoma.
Having witnessed the ravages of conventional cancer therapies—chemotherapy especially—Lynn was adamant about taking a different approach to her disease. In 2010, she enrolled in a clinical trial of a new immunotherapy drug, called nivolumab, being tested at Moffitt Cancer Center in Florida under the direction of Jeffrey S. Weber, M.D., Ph.D.
Nivolumab belongs to a class of immunotherapy drugs called checkpoint inhibitors. By blocking a braking molecule on immune cells called PD-1, nivolumab “takes the brakes off” the immune response, enabling a more powerful attack against cancer.
Having learned a lot about cancer therapies as a result of her own journey, Lynn now helps other patients navigate theirs. She maintains an active Facebook page and also hosts a website, www.survivingmelanoma.com, which discusses the latest treatment news in melanoma. We spoke to Lynn in September 2014.
CRI: Tell us how you found out about immunotherapy with nivolumab.
Lynn: I was starting to search the internet because, well, my prognosis was poor. They gave me 6 to 9 months to live, and they didn’t think I even had that. They said there was nothing I could do really. So I got some radiation for two weeks and palliative care to buy me a few months. And I thought, well heck, I'm not dying. I'm going to find something.
So I looked on ClinicalTrials.gov, researched some clinical trials for immunotherapy, and Dr. Weber had my clinical trial posted. I think twelve hours after he posted it, I found it. I had all my medical records on my computer, so I wrote him an email. He called me back and said it looks like I may qualify. He told me to come down and do the assessment.
CRI: What was Dr. Weber like?
Lynn: He's so intelligent, first of all. He knows melanoma, and even before I wrote him about my clinical trial, I wrote him general questions about melanoma. That man would always answer me within a few hours. To this day, when I email him or call him, he immediately gets back to me.
CRI: You live in Wisconsin but were treated in Florida. Did you travel back and forth?
Lynn: Well, actually when I got diagnosed, I lived in North Dakota. When I found the trial in Florida, we couldn’t afford me flying back and forth every other week. We had a 37-acre farm and we sold it all for $20,000 and moved to Florida because time was really important.
CRI: That doesn’t seem like very much money in the grand scheme of things.
Lynn: It wasn’t, but we needed money to start doing something. We didn’t know what to expect, whether I was going to be real sick again. So we just went down there. You take a chance; you’ve got nothing to lose.
Yes, it’s a cure. We like that word. That’s a new word for us.
CRI: How did you first find out you had cancer?
Lynn: I was diagnosed in 1991. I had a spot on my neck and doctors said it was nothing to worry about. They cut off every mole on my body and they said they were all fine except for the one on my neck. But they said it was no problem, they had gotten it early.
Four years later, it came back on the same spot; it was a little purple black blister. I thought, “Well they said it was nothing, it’s just a spot.” This was at the same time my son had just been diagnosed with cancer. He was 14. He had what I figured was real cancer. Then we got busy treating my son. I knew I should get it cut off sometime, but it wasn’t going to kill me or anything. That was in 1996. My son was treated and he died in 1998 when he was 16.
That same year I got separated from my husband and I had a meltdown. It was such a bad year.
Eventually, I went to the doctor to get my neck checked out and they removed the spot on my neck. They said they got it all, but they recommended I go back in and go a little deeper. The doctor took out five sets of lymph nodes. They were all clear, and I was told I had nothing to worry about. That was in 2000.
I got my skin checked a couple times but nothing was ever found. And that’s what got me: melanoma, you figure, is going to be on the skin. When I was diagnosed this last time, it was in June in 2009, and there was not a spot on my skin. It was just a 6.2 centimeters blob in the lymph nodes in my neck. Doctors discovered it when I went to the Emergency Room complaining of heart problems—turns out the tumor was pressing on a major artery in my body.
CRI: What was the treatment with nivolumab like?
Lynn: You would never know you’re taking it. I mean, I had a few muscle aches, cramps in my fingers. About three days after my infusion I would get mild flu-like symptoms, which would make me a little dizzy. I also got these white spots on me, vitiligo, which is actually a good sign—evidence the immune system was working. It did destroy my thyroid, that’s one thing, so I’m on thyroid medicine now.
But you don’t get sick to your stomach, you don’t get diarrhea, you don’t lose your hair, you can work on this stuff. I used to go to Disney World and walk the whole park. You may get tired; that’s your number one side effect—tiring easily.
CRI: What is the status of your disease now?
Lynn: My last check-up was last Wednesday. My doctor’s notes read: “Complete response/no evidence of disease.”
CRI: You host a website devoted to melanoma treatment. Why did you get involved with advocacy?
Lynn: No one was there to help me, and I felt so alone and scared. As a social worker, I was able to help my clients and empower them. I think the hardest thing for me was to help myself. I felt helpless. And I had to turn that around. I thought doctors needed to refer you to clinical trials. Then I found out I can do that myself.
People need to know about clinical trials just as much as they need to know about melanoma.
People need some place to be able to go to and get help—someplace that explains what clinical trials are, where you go to get on one. I found my trial on ClinicalTrials.gov, but that site doesn’t always update their clinical trials and so they may list some trials as available when they’ve already closed and not accepting anybody else.
I'm not a doctor, but somebody needs to help these people. I don’t give medical advice. I just tell them where they can go to find the trial or the information they need. People want to know: can I have hope? That’s what they’re asking. Can I hope to survive this?
CRI: In your online support group, have you heard from other patients taking nivolumab or other PD-1/PD-L1 inhibitors?
Lynn: Yes, and it’s working for a lot of people. When they come in and post, they’ve often just had their scans they’re just so excited. Often there’s either been no growth or something like 70 percent shrinkage—and they’ve only had two or three doses. It’s like a miracle has happened. Everybody gets really, really excited.
I know people are careful about using the “c” word too soon, but why don’t people just come out and say it’s a cure? Yes, it’s a cure. We like that word. That’s a new word for us.