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Writer's pictureLisa Hwang

Recalibrating - WTF is a GIST

Updated: Dec 5, 2022

In February, I had a colonoscopy. I asked them to check a bump in my rectum area which I thought was a prolapsed internal hemorrhoid. After bowel movements, I would see red blood. I had read that women can get this later in life if they had a vaginal delivery. I awoke from the procedure and they told me I had a GIST and to google it.


WTF is GIST?


A GIST is a GI stromal tumor in the GI tract. It’s a rare type of cancer and on top of that, in my case, it‘s in a rare location. In the past few months, I have had 2 colonoscopies, 2 MRI, cat scan, 3 ultrasounds, 2 biopsies and a lot of bloodwork done. The GI surgeon in the desert almost did a surgery to remove the tumor. After a review with the tumor board, the oncologists stepped in and said we should reduce it with chemotherapy and then remove it or she would be on a colonoscopy bag for the rest of her life.


After hearing that, I freaked out a bit. I reached out to the GIST guru in UCSD for a consult on my case. He took my case and the surgery will be done by UCSD GI rectum surgeons. It’s a delicate area and the surgery needs to be precise. On June 16, I started taking my oral chemotherapy tabs called imatinib also known as gleevac.


Today is day 16. My bloodwork on Friday showed that my white blood cells dropped dramatically week to week and my platelets are dropping. This means that my immunity system is low, energy is low and cuts will take longer to heal. I’ve been feeling more fatigued, headaches, stomach issues, blurry vision, loss of concentration and muscle weakness. I’m not sure if these side effects will decrease over time or will get worse. People that I know that went through chemotherapy seemed to get worse over time.


Prior to 2000, GIST was a death sentence. Chemotherapy and radiation did not work. Then, it was discovered that oral chemotherapy that was used for leukemia worked with a 93% survival rate if it did not metastasis.







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