Nicole DiCamillo: Living Family Life to the Full Thanks to Lutathera

I was diagnosed with cancer almost 14 years ago. Over the years, I have had many treatments that have controlled the cancer. But until my most recent treatment, Lutathera, none stopped the stomach and intestinal issues that greatly reduced my quality of life. Lutathera is amazing. Not only is it shrinking the tumors, it is allowing me to live a normal life with my husband and kids. Before Lutathera, I could barely make it from my bed to the bathroom without help. Now, I am doing better than I ever have.

When I was diagnosed with cancer in 2004, the type of cancer I have was called carcinoid cancer. Now it is called gastroenteropancreatic neuroendocrine tumor.

Even though I received the diagnosis at 27, I had been having what I now know were symptoms of the cancer since I was a teenager. I suffered flashes; I was always throwing up; I constantly needed the bathroom. My mom took me to see lots of doctors. None of them could pinpoint the problem. Some of them even told me there was nothing wrong with me.

Somehow, I lived with the endless stomach and intestinal issues but it severely limited what I could do.

The events leading to my diagnosis began when I was 7 months pregnant. After an uncomplicated pregnancy, I went into labor prematurely, and my son was born at 32 weeks. Three weeks after the delivery, I was back in the hospital because of severe pain in my abdomen, which I put down to an infection at the site of the caesarian section incision. But I ended up having surgery to remove my gallbladder and some gallstones. During the surgery, the doctor took a biopsy of a cyst that he noticed, the results of which revealed carcinoid cancer.

All this happened in early December 2004 but I didn’t find out about the cancer diagnosis until after Christmas. The doctors had told my parents but I was in no state to learn the news. I had a premature baby to care for and major abdominal surgery to recover from.

When my parents sat me down and told me I had cancer, I was angry. I was angry because after all those years of being told that nothing was wrong, it turns out I had cancer all that time. I was angry because I had just been blessed with a newborn son and now I feared that I might die. I was angry because I could see how much the diagnosis hurt my parents; they had been by my side through everything and hadn’t been able to get the answers we needed.

Then, I looked at my son and I knew that I had to overcome the cancer; I had to make it.

My first treatment was an exploratory surgery. They opened me up and removed a few tumors in my stomach and a large tumor in my intestines, which is what had sent me into premature labor; it was literally pushing my son out. There were also more than 175 tumors in my liver, which they could not remove.

After the surgery, the doctor told me to get my affairs in order. He said that I wouldn’t live past 30. I could not fathom it. I was being told that I wouldn’t see my son lose his first tooth, go to kindergarten, and grow up and graduate.

It turns out he was wrong. Since my diagnosis, I have had many surgeries, chemoembolizations, bland embolizations, and radiofrequency ablations to remove tumors. I have also received octreotide (Sandostatin). While all the treatments have helped, I remained significantly restricted by the ongoing stomach and intestinal side effects of the cancer. I could rarely get through a whole day at work. I couldn’t go to my kids’ school and sports events.

Then, in 2016, I started seeing a new doctor and received four treatments of Lutathera through a compassionate use program.

Since those treatments, each CT scan that I have had has shown my tumors are shrinking. My doctor recently changed my follow-up CT schedule from every three months to every four months and says he might move it to every six months soon.

Lutathera has changed my life. I never take days off work. I coach my son’s soccer team. I watch my kids’ concerts. I spent a whole day enjoying the rides with my family at Universal Studios. I couldn’t even have dreamed of doing these things before Lutathera. It is the best thing that has happened for me and for my family.