When Sue Bohlin beat cancer the first time, she thought that was the end of it. Sue was diagnosed with breast cancer in 2004 and received standard treatment including chemotherapy and radiation. “After five years, they said that I was cancer-free,” Sue says.
But two years later, in 2011, she found herself facing cancer again—this time, melanoma. “The doctor said that I had been hit by lightning twice because they were unrelated cancers.” She eventually had multiple surgeries to remove the melanoma, but the cancer kept coming back. That’s when she decided to enroll in a clinical trial of an experimental immunotherapy called T-Vec (formerly known as OncoVEX), which consists of a genetically altered virus that stimulates the immune system to fight cancer. She was treated at the Icahn School of Medicine at Mount Sinai by Yvonne Saenger, M.D., a specialist in immunotherapy for melanoma and CRI-funded investigator. Sue spoke with CRI about the process of participating in the trial, and why she considers herself lucky.
CRI: When did you first suspect something was wrong?
Sue: I had this tiny—and I mean, less than a third of the size of my fingernail—spot between my back and side. I don't have moles per se, and I'm not a sun worshipper, although I live by the shore. But I did spend a good deal of time outdoors, and I have very fair skin and blue eyes. The first doctor I went to said, “I wouldn't worry about it if I were you.” After a period of time, it started to itch a little bit and have a slight height. I went to a much better doctor about a year later, and he looked at it, and the first thing he said was, “I think you have melanoma. You should go to a dermatologist or see a surgeon.”
CRI: You eventually had surgery to remove the tumor. What was that like?
Sue: The tumor itself was more than four centimeters deep, but he [the surgeon] made a big incision and a very long cut across my back. He said, “If everything goes well, this might be the last time I have to see you.” But then it did spread—in that area, as well as on my chest. He said, “I can do surgery again and see what happens.” And so he removed it, and it wasn't that big a deal. None of this was. I really had no other health issues at the time. But the cancer came back again, and he said, “I could keep doing surgeries and surgeries and surgeries, and it's going to keep spreading. We're not solving the problem. I'm only correcting the consequences.” He said, “Do some research on clinical trials and see what's best for you.” And so I did.
My surgeon told me, “Well, it could be because it's not just attacking the actual tumors themselves, but traveling through your system and going after any cancer cells that are developing in other parts of your body.
CRI: How did your husband react to the news?
Sue: My husband wanted nothing to do with this. He kept saying, “You're getting yourself upset. You shouldn't be reading about these things.” It was such a gloomy prognosis at that time—stage IV melanoma—that he felt I shouldn't try to do the impossible or worry about tomorrow, but instead enjoy today. But I felt empowered by believing that there was something I could do; letting things happen without feeling like I had some control was even more frightening. I read an article about a man who did some stage II trial on OncoVEX in Boston, and they said that they were opening up a stage III trial, and there were applications. So I filled one out that afternoon, and within hours, they called me and said that I seemed like a good candidate.
Well, it could be because it's not just attacking the actual tumors themselves, but traveling through your system and going after any cancer cells that are developing in other parts of your body. - See more at: http://cancerresearch.org/our-strategy-impact/people-behind-the-progress/patients/sue-bohlin#sthash.9lCRhr8E.dpuf
CRI: What was the treatment like?
Sue: There were two wings to the trial: One was with OncoVEX and the other was GM-CSF alone, and I didn't know which I would go into. It turned out I was randomly put into the OncoVEX wing. They injected the tumors with OncoVEX, and they started multiplying rather quickly. I went from three to five to seven to nine to over 20.
The very first time they injected the tumors, I had a fever of 104 and chills that night. But after the second time they injected, I had no side effects ever again. It hurt at the time of the injection, but not excruciatingly. By the time I left the doctor’s office, I felt fine. So I was really thinking, “This is not so bad,” but it wasn't preventing the tumors from multiplying. At a certain point, Dr. Saenger said, I think we'll give it one last ditch effort and give the injection to you two weeks in a row, rather than every two weeks. After she did it two consecutive weeks in a row, the tumors started to go away. She too was very hopeful and said, “Let's keep going with it.”
My left lymph nodes had swollen, and I started having some pain. My surgeon told me, “Well, it could be because it's not just attacking the actual tumors themselves, but traveling through your system and going after any cancer cells that are developing in other parts of your body. So let's just hang out and see what happens.” Sure enough, it just went away. I've had no signs of illness ever since. I can basically say that I've been healthy through the treatment and afterwards with no real side effects.
CRI: Was your treatment team supportive during the process?
Sue: I felt as though Dr. Saenger and her head nurses were cheering me on, and they made me realize that this wasn't just my life or my health: This was the future of melanoma patients. We're hopeful that more can, in the future, benefit from the injections as well. FDA approval seems to be such a long, tedious, drawn-out process. It is rather heartbreaking and frustrating that they have to take so long to get to the approval stages so it can be available to other people.
CRI: How would you say this experience has changed you?
Sue: Through most of my years, I was living for the future—working hard, saving money, trying to make a good life for the future of my family and always thinking, ‘Someday it will be different, and I'll slow down.’ Retrospectively, I wouldn't think that way again. Life is precious and you have to appreciate every day you have, because you never know. People ask me, “Why are you so happy? Why do you say you're so lucky?” Despite everything I've gone through and the odds that were against me, I've been able to overcome. Through a lot of people's hard work and research and help, I'm here today to enjoy my life. That's lucky.