As a part of our Faces of Courage series, we are featuring a patient story each month. Each one of our members has a unique story to tell, but they all reflect the intrinsic courage of those who face the challenges of cancer head on, with dignity, strength, and passion for life.

Our Patient of the Month for August is Julie Durkee. Here is her story:

GISTory

In July of 2013, I noticed that my body temperature was always hot, and I needed to have a fan blowing on me. Previously, my body temperature had always been cool. I also was unable to complete my regular walks and hikes. In late August, I noticed a strange ache in my side, one that would switch from my back to my front and would rarely go away. I went to Urgent Care in early September and was diagnosed with kidney stones for which I was given medication. A few days later with no progress, I went to my primary care physician. She ordered an x-ray, but it didn’t show anything.

Image of Julie Durkee

Julie Durkee, California, USA

In mid-September, I had a CT Scan which revealed a large mass (9.4 x 13.0 x 15.7 cm), possibly GIST, on my stomach. I was with a friend when my primary care physician told me that it was probably GIST. It’s a good thing I was with someone because as soon as I heard the word cancer, I simply shut down. I could hear my friend speaking to my doctor, but I couldn’t hear any words she said. It was absolutely surreal, and I was very, very afraid.

A few days later, I had a needle biopsy to confirm the findings. I met with an oncologist referred to me by my primary care physician who confirmed that I in fact had GIST and should start taking Gleevec right away. I started taking 400mg of Gleevec on October 5, 2013. Within two days, I knew the Gleevec was working. I was not in as much pain as I had been before.

My boss wanted me to get a second opinion, so he got me an appointment with Dr. Jason Sicklick at UC San Diego Health (UCSD), a GIST specialist surgeon and researcher. I also saw Dr. Paul Fanta at UCSD, who is my current GIST specialist oncologist. I switched over to UCSD so I could be treated by specialists and I am so glad I did. Hearing some of the stories about other GISTers who have not had the appropriate care because their doctors do not know about GIST is terrifying. I feel so lucky to be treated by two excellent GIST specialists.

By early March 2014, I was told my tumor had stopped shrinking and it was time to schedule surgery to remove it. On March 25, 2014, it was removed, and I’ve been NED since. I remain on 400mg of Gleevec to this day.

Conversations with the LRG part 2

Meet Julie Durkee on Sept 10 at 2pm for our Conversations with the LRG: GIST Mentors.

Coping with GIST

In the beginning, it was hard. The side effects from Gleevec were difficult – gastrointestinal difficulties, rashes, facial edema, sensitivity to sunlight, fatigue, partial hair loss. But as time went on, they mostly subsided and now I’m doing great. Early in my journey, I recall reading about GIST patients who had been taking Gleevec for 15 years! That was so unbelievably inspirational and gave me such great hope. Even though I still get fatigued, I am still able to live a fairly normal life. I eat almost anything I want; I can get some sunshine without getting a rash and go for nice long walks. I have also completely embraced my nap-taking ability and I’ve gotten quite good at it! I have met so many wonderful people through the Life Raft Group. They have provided me with hope, friendship, knowledge and caring. I know I am not alone in this battle and having people who understand exactly what I’m going through is monumental.

I am also a mentor to other GISTers and find that to be extremely rewarding. I had to find out so many things the hard way, by trial and error when I was first diagnosed. So, when the opportunity arose for me to be a GIST Mentor, I jumped at the chance. If I can provide even just one bit of information that will help someone to not be as scared or concerned about their situation, I am incredibly happy to do so.

Meet Julie Durkee, a LRG GIST Mentor and other mentors, during our Conversations with the LRG Webcast on September 10th at 2pm. Register today!

Advice for Fellow GISTers

  1. It is absolutely imperative that you meet with a GIST specialist.
  2. Ask questions on GIST Chat. Your fellow peers have so much knowledge and are eager to help.
  3. Do research and learn as much as you can.
  4. For most of us, GIST is a chronic disease. Diabetics must take daily medication, people with high blood pressure have to take their meds, and so do we.

Hobbies

I love to be outdoors, camping, hiking, gardening and just enjoying the beauty of nature. I also like to design and make jewelry.

Motto

“Knowledge is Power so be Powerful.”- Unknown

Each member story reflects the individual patient’s experience. GIST is not one disease, but a family of diseases and each patient has a unique set of symptoms and manifestation of the disease.

Criteria for Patient of the Month

  1. Patient must be a member of the LRG Patient Registry
  2. Patient is an active member of the Patient Registry, continually providing medical updates
  3. Patient’s record should be at least 80% up-to-date
  4. Patient has a GIST/PRiME account
  5. Patient must agree to provide consent to share his/her story to our GIST community on our website and social media

Interested? Contact Sahibjeet Kaur, LRG Patient Registry Supervisor, for more information: skaur@liferaftgroup.org

read more member stories