The story of Wendy
I had had back problems for several years and at the end of 2008 I had my Gallbladder emoted due to nausea I was having. The month following  I had a lump that popped up in my throat and had that removed but never biopsies although the report read “carcinoma” I then experienced bloating and saw a Gastrointerologist whip diagnosed me with Irratibke bowel syndrome but never did any scans at all.
it was June 2009, that I lay in a hospital bed awaiting results from a CT scan, after having had a back operation to see what was causing the pain that I was having. The news was not good “you have a tumor” and you need a surgeon he said. Cool, carm and collected I was, not registering what the specialist had said, he left the room to appear the next morning to ask if I had located a Surgeon!
it was then that the penny dropped so to speak and asked if it was cancer! His reply was that he did not know.
my husband was devistated and found a well known Surgeon, albeit that he was not a Specialisr in Gist, Biopsies were done and results revealed , Gastrointestinal Stromal Tumor stage 3b. A RARE cancer he said. Not many people in South Africa have it and little known about it. Conventional chemo does not work on this cancer but there is a Target Therapy called Gleevec. I was started on 400mg every day for 3 months. The side effects were puffy bleeding eyes, nausea, heart fibulations excrutiating cramps and pain. When it was eventually removed along with the tail of the pancreas, spleen and 1/2 stomach the beast was 28cm.
i continued on Gleevec for 2yrs and the side effects were becoming unbearable. The oncologist did scans and all seemed stable so he gave me a break of taking Gleevec for about 18months. I then had the dreaded nausea return and back into the scanning room to see that the tumor was now bubbling up again into the diaghphram. Â Back on Gleevec and into theatre a month later to have it removed. Sadly, my muscles broke down and they had to put me on Life Support for 2 days! That was that! Gleevec for life. Inoperable!
At the end of 2017 nausea and pain in my clavicle area prompted me to see the oncologist and organize a scan. A week later a Petscan revealed the tumor up in the diagphram was active and had increased and that I had more metastasis to the liver….Gleevec not working! The disease of Gleevec was then doubled to 8oomg but side effects were so bad that we had to reduce to 600mg per day. 2 weeks later had an MRI and the lesions had not changed so hoping and praying that I stay stable.
My advice is that, if you have issues and cannot solve them, take it upon yourself to tell the Doctors “There is something not right” be your own Advocate, you call for the scans, you know your body better than the Doctors do!