I'm A Survivor

This was on my side bar... just changing things around a bit, didn't want to delete it though so I thought I would make it an entry!

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About 3 years ago, now (2005) I have been  diagnosed  with a  Intrathoracic meningocele on my spine.... A Intrathoracic meningocele isdefined as a cystic sac whose wall is formed by spinal meninges and containing cerebrospinalfluid, protruding into thethoracic cavity through an enlarged intervertebral foramen [1]. These lesions are commonly associated with neurofibromatosis [2], and the incidence of isolated intrathoracic meningocele without neurofibromatosis is very rare. Their etiology remains controversial [3]. In the absence of neurofibromatosis, the diagnosis of meningocele can be troublesome. The differential diagnosis of posterior mediastinal mass also includes bronchogenic cyst, lymphoma, neurogenic tumors, teratoma, seminoma and germinal cell tumors.
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I also have this genitic disorder neurofibromatosis. Which is.....  also called NF it  is a condition that causes tumors to grow on nerve tissue, producing skin and bone abnormalities. NF is often diagnosed in childhood, occasionally in infancy but usually around 3-16 years of age. The effects of the disease vary widely. Some children might live almost unaffected by the condition. Although rare, others might be severely disabled. I was told many yrs ago I have a mild case of this, BUT now I am not so sure now that it is mild with this meningocele now!  
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At the age of Nine the Dr's discovered I have Scoliosis... I had surgery for it at the age of 10... at that time I was the youngest to have this surgery! The Dr's seem to think a combation of the surgery my genitic disorder and possibly a car accident I was in 14 yrs ago(1994) may have caused the meningocele. I also had a bad fall about 2 years ago which could have also triggered this! Guess we will never really know though!

It never ends....*****

NOW IN NOV of 2007 I was found to have GIST - gastrointestinal stromal tumor.: GIST is a rare type of sarcoma that is found in the digestive system,most often in the wall ofthe stomach.  Some GISTS are benign (not cancerous) but they can become cancerous if not treated.  Generally speaking, the larger the GIST, the more likely it is to be cancerous. My tumor was the size of a tangerine. So now to fight this battle... Treatment for GIST:

The most common treatment option is surgery and this alone may be a cure for people with small tumors.   If the GIST has spread, it is sometimes possible to remove these secondary tumors too.  Chemotherapy and radiotherapy don't work well for GIST, so researchers have been looking for other types of treatment.

Glivec, also called imatinib, is a relatively new drug used to treat GIST since 2004.  Glivecis not a chemotherapy drug.  It is a type of drug called a tyrosine kinase inhibitor. This means it blocks a chemical (an enzyme) that the cancer needs in order to grow.  It is used to treat GISTs that cannot be completely removed with surgery. BUT I had the surgery and was told it was removed completely? Not sure why the glivec then, maybe as a preventive?

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