Being in Cancer Clinical Trials

Katie Doble received a diagnosis of stadium 1A melanoma In spring 2013. Eye melanoma is a rare cancer type that develops in the eye, especially in cells producing melanin (pigment).

At the time of the diagnosis of doble, the treatment options for his cancer were very limited. She underwent radiotherapy, but her cancer progressed in stage 4 by fall 2014, Doble having developed several tumors on her liver. His doctor gave him about 16 months to live.

Doble turned to clinical trials to have a chance to do a new and effective treatment. She explored about eight tests in total, participated in four and traveled outside the state for two. It was successful in its fourth clinical trial, which involved an immunotherapy treatment based on T cells. This treatment has changed its immune cells to identify and attack its cancer cells.

The treatment has narrowed all its tumors except one. Then, a final surgery to eliminate its most obstinate tumor on the left doble without any evidence of illness. Despite its original prognosis, Doble has been without cancer for over three years.

Doble is now a defender of the Advisory Board patient for Walgreens’ clinical trials. “I want people to know that if you are confronted with a disease or cancer, clinical trials can be an excellent option for treatment. Clinical trials have continued to buy me more time. They bought me more than my 16 months,” said Doble Health.

When you received your diagnosis for the first time, were you aware of clinical trials as a treatment option?

Doble: When I received a stadium eye melanoma diagnosis, my doctor told me that I had a treatment option. This medication was not approved by the FDA for my specific condition, but rather for the melanoma of the skin. She told me that I was 16 months old to live.

My doctor did not originally suggest optional clinical trials. It was my father, an internist, who asked questions about it. The only answer we obtained was that it would be very expensive.

Fortunately, my father helped me, and he started calling doctors throughout the country to find out which options would be available. He knew that I would have a better chance of survival if we were going to the way to the clinical trial.

What do you want to know to find and enter clinical trials?

Doble: When I got into this, I didn’t know anything. I didn’t know what to expect. I didn’t know how to sail. I learned by advancing, partially from my father’s advice, but also of the doctors that I met throughout my clinical trial search.

My first clinical trial doctor, oncologist Michael A. Postow at Memorial Sloan Kettering Hospital in New York, knew it was a foreign world for me, so he gave me an intensive course in clinical trials.

He taught me the difference between the treatments approved by the FDA and clinical trials, the difference between targeted and systemic treatments, and the importance of constituting a team and having a plan B and C.

While I was in my first clinical trial, which lasted about eight months, Dr Postow shared my case with other specialists nationwide and learned which other trials were available or became available.

Often, when I was eliminated from a trial, there would be a new available trial which may not have existed three months ago. He helped us establish the navigation strategy on changes.

I had another doctor, Dr. Richard Carvajal, oncologist at Columbia University in New York. I explored some different clinical trials through him, and although I never ended up being treated through him, he was a resonance box for me.

He always picked up the phone when we were at the crossroads, trying to determine which treatment would have been the best to do afterwards, and would weigh and help us.

To what extent was your medical network essential to find a successful test?

Doble: Building a medical team is one of the most important aspects of the treatment of a rare disease – in particular who are specialists, and also ensure that specialists know who you are.

As I met the doctor during my fourth and last clinical trial at the Pittsburgh University Medical Center, Dr. Udai Kammula, he came to the room and said: “Wow, Katie, it’s so pleasant to finally meet you. I have been following your case for years.”

What was an unexpected challenge to be in a clinical trial?

Doble: Being in clinical trials required many trips, which was expensive and hard for my body.

Travel is not always necessary for clinical trials, but it is often a requirement for rare diseases and rare cancers, like mine. At the time of my diagnosis, there were no specialists in eye meloma in my country of origin of Colorado, which was shocking enough for me. It was necessary to leave the state to obtain treatment.

My first clinical trial was at Memorial Sloan Kettering in New York. I have traveled from Denver, where I live, for treatment and the first five weeks of the test. It was very high intensity of labor. I had to do blood analyzes every week and I went to two or three meetings every week.

Instead of traveling every week in New York, I rented an apartment for five weeks because I didn’t know how I would feel in a new place and receive cancer treatment. In terms of costs, he ended up being comparable to flying there and returning every week. I was also able to work in the Manhattan office of my business, something that I was very lucky to be able to do.

The side effects of the treatment were quite horrible, so I was satisfied with the decision I made to stay in New York. It was also a little exciting to be 32 years old and suddenly having the opportunity to live in New York for five weeks, despite the circumstances. I took advantage of it. I went to a Broadway show. I spent time with good friends who live there.

What do you want to know about the ups and downs of participation in several clinical trials?

Doble: I would have liked to know that it is not uncommon to be eliminated from a trial, which is not something that doctors always speak. I should have known by the way my doctor was looking for backup options that it was a possibility, but when you take things one day, you don’t really think so far. So it was surprising for me.

I do not think it is also common to do several clinical trials, but for a rare disease, and for all those I know in the community of eye meloma which takes the path of clinical trials, most of my peers have done more than one. You have to be mentally prepared for this.

I was unexpectedly eliminated from my second trial. I had developed very bad gastrointestinal problems and I was removed from the test without being told. It was a shock. I went to get my second infusion, and I was told: “You are no longer in this trial.” It was quite shocking because I did not have a plan B or a plan C already aligned, and it was a huge lesson.

To move forward, I learned what questions to ask my doctors and how to anticipate such situations before taking me off guard. There are so many things for which you cannot prepare. Although it is essential to think in advance and have a plan B and C, you must also take one at a time. That’s really everything you can do when you are in the fight.

With hindsight, what are your greatest dishes to take away from your treatment path?

Doble: I was a young 30 years when I received my diagnosis. All my friends provided weddings and babies, and I was just trying not to die. I had been given 16 months to live, but it was important for me to maintain as much normality as possible.

The great thing I did was to continue making plans. My boyfriend – now my husband, Nick – offered two days after my diagnosis of stadium 4. It was not necessarily this happy and carefree moment of our life. It was a really terrifying period in our lives.

I made this decision: “I do not know if I plan a marriage or funeral right now, but I’m just going to take every day like that.” Nick and I are really committed to each other. We said to ourselves: “Continue to live.” We got married, then we decided that it was a very good idea to build a house. So we built a house, then I pulled the cancer card to get a dog.

The beauty that came from it was that life in general has become rewarding, in particular the banal moments of life. I remember organizing an evening of play in my apartment with my husband, my sisters and their husbands during this first year. We had traveled a lot; I hadn’t seen them for a while and I was not doing very well.

I was not drinking alcohol, but I was drinking Pedialyte out of a wine glass and we played games. I remember laughing hysterically and soak up this moment, to be incredibly grateful. I have the impression that cancer taught me to appreciate the small moments, in chaos, in the challenges, and to be present when you get these normality extracts.