Lynn LuckerothMelanoma |  Diagnosed 1991

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 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.

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.

Dr. Weber 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.

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.

My last check-up was last Wednesday. My doctor’s notes read: “Complete response/no evidence of disease.”

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?