Hi again

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Hi again

by Ginners on Thu Jan 22, 2015 08:33 AM

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I posted weeks ago after I got home from the hospital where I had a coma induced by a severe toxic reaction to 5fu.  I know I mentioned that I was confused how and why I came out of the coma so quickly.  Well, I found out some interesting news.  I was sent to Massachusetts General Hospital for a third consultation about the coma and questions about my future  without 5fu.  This hospital works very often with Dana Farber.  They did additonal genentic testing and guess what, I do have an "issue" with 5fu but not because of the enzyme issue!  Even when they thought I had this rare reaction (two doctors never saw such a case, I was anything but typical, even after they got the hazmat group to remove the chemo pump.  Turns out I can process 5FU but I have a genetic code that takes the 5FU and makes it toxic and I cannot be treated with it because they have no idea how much they can give me.  It is too risky to try again, because with all factors all the heads of the departments wouldn't risk my life.  Also, I "may" have been overdosed.  I have a form of dwarfism and the origional oncol doctor was having problems figuring out how much to give.  This just came out recently when in discussion with my current doctor.  She told me that because of the violent nature of my brain shut down she felt it was either an issue with the 5fu or they didn't calculate me correctly.  I can't name the condion, but it sounds like a singular genetic code, personal to me (and not the enzyme issue) makes it so that my body rejects the 5fu.  So, where I am now is no chemo.  Never a chemo with 5FU driving it (that is going to be hard)  Body scans every six months, blood work for the "marker" every three months and an annual colonoscopy.  If something comes up, they would 1st try surgical removal, and if need be trying to get me a personalized chemo treatment that won't kill me.  It is going to be a tough next few years.  The senior oncologist in Mass General agree's with my decision about not taking a further chance with the 5FU yeh, I won't have the enzyme isssue, but this mutant singular genetic whatever will never go away.  So friends, I am hanging with all with this strange diagnosis knowing that it contributed to my brain shutdown and is directly related to the 5fu.  I just shrug my shoulders and  think "figures that I have something even stranger than the toxic encounter with 5fu!!!  Nothing about me is normal, I am just too special for my own good.  =-(  I am grateful they decided to take the one step further and check my genetic sequences.  One day at a time I guess.  Right now I am waiting on an OR time to remove this port they put in. 

RE: Hi again

by EdinLoria on Wed Feb 18, 2015 04:45 AM

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What about the oxyplaten (?)  drug in the Folfox

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