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 January is Juan Castelan. Here is his story:

GISTory

Juan Castelan

Juan Castelan, Atlixco, Mexico

It all started for me in October 2016 when I noticed that my head ached almost daily. I gave little importance to it. However, one day when I made an effort to lift a table, I felt that my heart was uncomfortably accelerating and that worried me, so I decided to have a routine test. When I saw the results, I was amazed because I had 5.3 hemoglobin. I was hospitalized that same day and received two blood transfusions.

Once I was discharged, I pushed for an endoscopy and a colonoscopy to determine the cause of my anemia. The results showed nothing but light gastritis. By December of the same year I returned to be hospitalized since my hemoglobin was low again, and I received more transfusions and tests, like an ultrasound and simple tomography, but nothing was showing up.

I didn’t feel sick, nothing hurt me, and after so much testing the doctors ordered another endoscopy, and that’s when the tumor was discovered. It was in my small intestine area of the jejunum with a size of 4 cm. The tumor was ulcerated and that was what was causing all the bleeding. I still remember how the doctor’s words after the procedure chilled me. He said, “We found something, but it’s not good news. The diagnosis is a possible GIST.”

I had never heard of GIST and I had no idea what it meant until I investigated and found out that it meant cancer. I thought the worst. My surgery took place on February 17, 2017. Everything went well, with clean margins. I was happy because they had removed the tumor. The doctors explained very little about GIST and I lived in a sea of doubt. In April I started treatment with imatinib 400 mg a day with a plan to take it for three years. To date all my scans/tests have gone well and my only side effect has been cramping. Today, I am very afraid to stop the medication. I only have a few months to go until I finish the three years of treatment.

Coping

I deal with GIST by trying to stay positive and not think daily about the disease – which I find somewhat complicated, because any discomfort that I feel I associate with the cancer. Thinking about it all the time causes me some anxiety especially because I do not have an oncologist specialized in GIST.

Fundación GIST Mexico has helped me quite a bit. They advise me dearly every time I need it. I also changed my diet to a healthier one. I must admit I am guilty sometimes because I like sweets, especially desserts, but now I eat them in moderation. I have also dedicated more quality time to my family and making the best of every day of my life.

Advice

Although it is repetitive, the diagnosis of GIST completely changed my perspective on life and what is important. It helped me to mature, in addition to accepting what I must face. I advise that fellow GISTers enjoy each experience to the fullest. We must be clear that we have to give the best fight to this condition as much as we can. Let us fight for our life!

Hobbies

I love spending time with my family. From cooking, going to the movies, and fishing. We have three Akita dogs that are my faithful companions. I enjoy walking with them a lot. I love learning with my son; he is fascinated by all those strange creatures like Bigfoot.

Motto

“Continue when you think you can’t anymore, it’s what makes you different from the others.”

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