Fight or flight: A chance encounter in the sky compels one GISTer to do her part

/Fight or flight: A chance encounter in the sky compels one GISTer to do her part

Fight or flight: A chance encounter in the sky compels one GISTer to do her part

By |2014-09-17T10:15:34-04:00February 1st, 2011|News|

My journey as a cancer fighter began fourteen years ago during a routine gynecological checkup in December 1995, when a recto-vaginal septum tumor was detected. After a large resection of the tumor, which was classified as leiomyosarcoma, a round of radiation therapy followed.

Four years later, in 1999, I had a local recurrence that was again resected and as the surrounding tissue had been damaged by the previous radiation; a temporal colostomy was required, followed by a post-operative brachytherapy treatment.

Until that time, I trusted my attending physician, but the following year (2000), when a new cancer recurrence surfaced, he failed to give it any significance, which led me to seek a second opinion as I lost faith in him and did not feel he provided the support and care I needed… I don’t know, maybe he thought the battle was lost, something that I could not let enter my mind.

The oncologist I consulted later left in me a huge impression, as he approached my case with commitment and empathy. He asked for a few days to study my medical chart and requested more specific tests, which confirmed how far off base my previous physician had been. The new diagnosis was “local recurrence with hepatic metastasis.” This again required surgery to resect the tumor and a permanent colostomy. A month later, I underwent a hepatectomy to resect three metastatic nodules.

In 2002, two more nodules were detected in the liver, but this time a resection was impossible due to their location. Again, my oncologist took a few days to study this new development and to consult with other specialists in the United States. He then discussed with me what he felt was my only chance, a treatment with a new drug that was been used in chronic myeloid leukemia (CML) and which, depending on the results of immunohistochemical tests, could be a valuable treatment option for me. Waiting for the results of the tests was extremely difficult. I was facing the temporality of life, although filled with great hope and faith, I saw before me a light, a chance to keep on living.

The results were as expected, it was a GIST that reacted to this new drug whose name was unknown to us at the time. The race to learn more about what a GIST was began in earnest and to try to get a hold of this new miracle drug. My surprise in learning that it was precisely Novartis that manufactured this drug was enormous, as just very recently one of my sons had began working for this pharmaceutical company. And so, the network of contacts and generous angels was set in motion.

We learned about the Max Foundation and Novartis Glivec International Patient Assistance Program (GIPAP) program and I applied immediately. For family reasons, I was living some months in Guatemala and some others in Chile during that time, so I was blessed to be accepted to the Guatemalan GIPAP program. I then started my treatment with Glivec, followed by periodic checkups every three months in Guatemala.

The power and magic of the solidarity around me does not cease to amaze me! I remember having received the gift of airplane tickets to travel to my checkups from good people that I didn’t even know, and I remember with immense gratitude the support of my family and friends who looked after my children while I was away.

Two years later, already permanently residing in Chile, I entered into the Chilean GIPAP program, which has allowed me until today to continue my treatment with Glivec without interruption and with great success.

Once again and every day, I give thanks to the Lord for the gift of life, for the generosity of Novartis, for the effective and close way the Max Foundation monitors my treatment, for the solidarity of my friends near and far, and for the strength shown by my children and their support throughout this journey, as they are the main reason behind my drive to fight this battle. Thanks to all of them, I have been able to look at the future with new and hopeful eyes.

Today, I also want to express my heartfelt thanks to the Life Raft Group for their invitation to participate in their Alianza GIST initiative. At this point, the same as Norman, I want to share with you something that happened during my return trip home after participating in the Latin American GIST Coalition planning meeting in Monterrey.

A Uruguayan lady who lives in New York sat beside me on the plane, and just after we had exchanged but a few words, one of those magical moments when two souls connect occurred. She began telling me part of her personal story.

Her husband had passed away two years prior after a battle with cancer. When she was describing to me the development of his illness, it was as if she was narrating my own story… an initial diagnosis, surgeries, radiations, metastasis and, in his case, also chemotherapy. The similarities were uncanny, the big difference was that her husband was dead and I was alive.

So many questions filled my mind! Was he diagnosed properly as was I and therefore received the appropriate treatment? Did he have access to enough information so as to decide whether or not to trust his physician’s diagnosis? Could it have been a misdiagnosed GIST? And if so, had it been identified and treated properly, as in my case, could he still be alive?

Of course, we will never know the answer to all those questions, but after the Monterrey meeting I felt compelled to return to my country to try to do my bit in the fight against this disease. This conversation further cemented my decision and confirmed the need to provide to physicians the largest amount of information possible related to this rare type of cancer so they can draw upon such information when making a diagnosis.

It also confirmed the need to arm GIST patients with all the wealth of information available so they may better understand what is happening inside their bodies. I need to support them so they never feel alone in this fight for their lives, and in some way, give to others the same gifts I have received during my journey.

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