In April 2012, Michelle Langbehn was diagnosed with sarcoma, a rare form of cancer that affects 1 percent of cancer patients in the United States. After nine months of chemotherapy, she and her doctor began looking into other potential treatment options, including a trial at the National Institutes of Health.
Sarah Kliff: I really appreciate you taking the time to talk to me. Can you tell me a bit more about your condition, and when you were diagnosed?
Michelle Langbehn: My formal diagnosis is sarcoma. I was diagnosed in April 2012, shortly after I'd given birth to my daughter. Unfortunately that's not where it started. It started in 2011, when I was newly pregnant, they found a large tumor on my kidney. I went to the doctor thinking I had simple side pain. They thought it was benign, and I then went through the rest of my pregnancy. I started experiencing some neck pain, and it turned out the cancer had spread to multiple spots on my spine and skull. I was 29 at the time of diagnosis.
SK: Was this a shock to you, your diagnosis?
ML: It was extremely surprising. I'm otherwise healthy. I only get one cold a year or so. The kidney tumor alone was quite a shock. I was very happy and relieved when we thought it was benign, but we realized that was not the case. It was rather scary, when I was diagnosed stage 4 sarcoma. Doctors hadn't had experience with a lot of patients like me because it is such a rare cancer.
That news was extremely scary since I had a newborn daughter. A specialist told me people live up to a year when they are stage 4. The thought I might not be here for my daughter was really scary.
SK: And how did you move forward with treatment?
ML:There are a couple of approved treatments, two of which I have done, neither of which promise a cure. There isn’t a cure unless you catch it early enough. For mine to have spread like it did, the chemo was basically just going to be there to prolong my life. I did the two regimens. One was really difficult and [we] found out it wasn’t working. I did two cycles of this new chemo, and it has worked so much better. I just finished my ninth month.
SK: And how did you start looking at clinical trials?
ML: I was talking to my doctor, and we were starting to discuss that I needed to look at other options. After finishing my ninth cycle [of chemo] he informed me that you cannot stay on chemo for the long term sine it weakens the immune system. My body wasn't reacting to it like it used to. So I started looking at clinical trials, found one, immediately contacted them and got the process started.
SK: How did you settle on a specific trial?
ML: This one seemed perfect to me because it was what I needed. It was a treatment that targets the tumor from the inside, basically, and kills it from within. It's so different from any other treatment like chemo, which attacks all rapidly growing cells. There’s no guarantee that this might be the drug that helps but, at the same time this trial is as close to a magic bullet as we’ve found. Previous trials of this drug [Cabozantinib], there have been remarkable results.
SK: How did you go about signing up for the trial?
ML: I contacted one of the nurses who was working with the head doctor, and I contacted her and got her on the phone and asked a few questions. At that point she referred me to the clinical research coordinator, and he got the process started of getting all my records sent to NIH about previous surgeries.
This was about two or three weeks ago, when I initially made contact. They were very diligent about collecting all my records.
SK: When did you first get a sense that the shutdown could affect this?
ML: When I spoke with him on September 24, that’s when I first became aware that the government might shut down. I wasn’t following the news at that point and learned everything would come to a halt. When I contacted him on September 30, he had told me all my records had been sent in, and they had started evaluation, that they needed to do their own re-diagnosis. They had started, and then on Tuesday, everything came to a halt.
SK: How have you felt since then?
ML: I’m frustrated to say the least. This was not supposed to happen. Nobody wanted the shutdown to happen. If I had a message, it would be that lives are at stake. People don’t want to be enrolled because they're doing well. They’re looking because of something that's wrong. For them to have that taken away, it almost makes you want to lose hope in a way.
SK: What would it mean to you to be able to enroll in the trial?
ML: It would give me a chance to think about the future. Right now the future is unknown. Since stopping chemo in July, my doctors have found one new spot. You never know how chemo is going to react to your body and how quickly things are going to spread. That makes it even more important that I’m on this trial. it would mean the world for me to see my daughter grow up. I made a promise to her that I refuse to let her grow up without a mom.
SK: What would your message be to Congress, if you were able to tell them directly how the shutdown has affected your life?
ML: I want to tell them that lives are at stake. This isn't just a matter of inconvenience. This is a matter of life or death. I’m not just doing this for myself. There are 200 people that are trying to get into clinical trials each week. I want to speak for all of us.