Tuesday, September 10, 2013

Temodar Tolerance

Sometimes we hear people say that they can't tolerate Temodar, but we aren't always sure what they mean by that.  Do they mean the doctors pulled them off of Temodar because it was destroying bone marrow and was therefore doing more harm than good? Or do they mean it made them feel bad, and they couldn't tolerate feeling bad?

 In the first scenario, if your doctor looks at your blood panels and tells you that Temodar is destroying your bone marrow, there isn't much you can do but go off of the drug or follow whatever your doctor suggests, but in the second scenario, where your blood work is good, but you can't tolerate it because you feel sick, there are some things you can do.

When Ted was diagnosed seven years ago, Temodar was in the experimental stages.  It was known as a stage three drug, (History of Temodar) which is why he stayed on the drug for three years. Currently, patients are on it for shorter periods of time. (.Drug Stages)  At one point during his treatment, the doctors suggested he take Temodar in a different sequence.  Looking back, I think they did that because one of his MRIs showed inexplicable shadows.  They weren't sure if it was the tumor coming back or if it was necrotic tissue, also known as dead tissue, from the surgery.  It turned out to be necrotic tissue, but before they discovered what it was they asked him to change his Temodar schedule from 23 days off and five days on to a daily dosage, which made him feel much worse than he did with his old schedule, so he opted not to take it daily and to go back to the old routine.  With that being said, a friend of ours, also a long term GBM survivor, tried the 23 days off and five day on schedule, but that sequence made her feel awful, so she opted to go back to the daily routine.

Although Temodar made Ted tired and somewhat flu-ish every month, he kept on pushing through.  We traveled and hiked and kept on going.  He said he could either sit around at home and feel sick or go out and distract himself from feeling sick.  Either way, he was going to feel crappy.

My point in putting this information out here is two fold.  One is to tell you that if your blood work is good, but the drug is making you feel bad, you should ask your doctor if you can take it in a different sequence.  The other point I'd like to make is that Ted tried all of the anti-nausea drugs, but only Zofran worked.  He couldn't function on the other drugs, so make sure to ask your doctors for all of the anti-nausea drugs before you give up.  There may be a way to make it work for you.  Not everyone is the same, and we heard early on that women don't tolerate Temodar as well as men, but our friend Jennifer was able to find a way for Temodar to work for her, and she is here six years later and going strong, and she was only on Temodar for a year.   Good luck.