Gastrointestinal stromal tumor
Very rare cancer
Site created on March 13, 2019
My cancer is called a GIST: gastro intestinal stromal tumor. It is extremely rare and fast growing. The usual protocal is surgery and then fancy designer chemo pill. I've pretty much been a Guinee pig for the past 15 years. LOL! Oh and I've been a single mom this whole time as well. My girls were 4 and 6 years old when this journey began.
Four major surgeries and two different designer drugs later ( Gleevec & Nexavar ); I am considered a miracle.
I don't feel like a MIRACLE! Lol! Far from it!
Unfortunately, we ( my surgeon Dr Agnew and myself ) are running out of organs to remove. We ( my oncologist Dr Sardar and myself ) ,are also running out of designer chemo pills.
This time I feel more stressed and scared than ever before. The stupid ass GIST keeps coming back sooner and sooner. It's only been 18 months since my last major surgery. Yuck!👎👎👎👎
I'm waiting in limbo for tests and results..... As it stands there are two choices for surgery.
1) The same surgery as last time but on the right. Which is the preferred option.👍👍👍💜 2) Complete removal of my esphogus and stomache; Then they take some of my colon to replace the esophagus and stomach. This choice is a very complicated surgery and will have a huge impact on what and how I eat. Plus, I would have to go to Oakland for the surgery. After surgery we will start a different drug ( Regorafenib ) with more side effects. Yay! I am such a " DELICATE FLOWER" that the last drug made me so sick.
There is hope! A new fancy designer chemo pill is being developed in Italy. It was created specifically for GIST tumors. It's not approved in the United states yet, but hopefully in 6 months to a year it will be approved.