Brain tumors suck. Hi, I'm Patrick btw. This is my cancer blog. My "normal" stuff is over here.
This is an English translation of one of my emails to the German HirnTMR mailing list, the German equivalent to the BRAINTMR mailing list. It was written on 13. Oct 2011 and I had just finished my second to last cycle of chemotherapy with Temozolomide (sold under the brand name “Temodal” here in Germany, in the US the brand name “Temodar” seems more common). I’ll abbreviate it as “TMZ”, something you might also often encounter in forums and on websites. TMZ is one of the important new developments in recent years, as it is generally well tolerated, works as good or sometimes even better than older chemotherapy agents and can be taken orally. There’s still ongoing research on how to make it even more effective.
How one reacts to TMZ is of course different from individual to individual, but as I already wrote, people usually tolerate it very well. Luckily, I did too. In the following paragraphs, much is just a translation of my original email. I’ve added explanations for the medical terms and background where appropriate though. However, please be aware that I have no real medical education, so I might get some things wrong. So please don’t take any advice from a stranger’s blog without consulting your oncologist first ;).
For those of you who don’t really know how chemotherapy works, let me give you a quick summary: The chemo agents basically kill rapidly dividing cells, one of the things tumor cells normally do. Unfortunately, this is a rather blunt weapon, as other cells in your body divide rapidly, too. This is why so many chemo agents cause the loss of hair, as your hair grows rather fast. It is also true for your white blood cells, leading to a weakened immune system during chemo. Researchers are constantly trying to find new drugs with less side effects that ideally only effect the tumor cells.
The tricky part about brain tumors is that you need an agent that passes the blood-brain barrier. Normally, your brain is protected against all the nasty stuff circulating in your blood stream, like germs and viruses. That is however a problem if you want to send a chemotherapy agent in there. You certainly don’t want to open the skull every time you have to apply a chemo agent to the tumor, so researchers found drugs like TMZ that are able to pass the barrier.
How much TMZ you have to take is normally calculated by your weight if you follow the very common 23/5 cycle. That means that you take the TMZ for 5 days in a row and then you have 23 days for recovery until it starts over again. For me, that meant 380mg of TMZ per day. Usually you also get a prescription for an antiemetic, i.e. something against the chemotherapy-induced nausea. I had Granisetron and Metoclopramide.
Another nice thing about TMZ is that you usually don’t lose your hair. Don’t get me wrong, I would have gladly rocked a bald head if it would’ve been necessary. It was still nice to be able to retain my hair. Don’t ask me why this works with TMZ, I’ve never looked it up.
I did 9 cycles of TMZ, beginning at the end of March until the start of November 2011. I scheduled the intake for the evening instead of the morning, as my Internet research revealed more positive reports for this. The coordination was done with Heidelberg, but my first inquiry here in Aachen about the chemotherapy even recommended taking the TMZ in the evening. The downside of taking TMZ in the evening is that you have to take it on an empty stomach, so I had to wait 4 hours after the last meal of the day. That meant to have dinner rather early, usually around 6pm. Half an hour before taking the TMZ, I took one Granisetron pill. This was at first meant to only be done on the first two days, but I discovered that for me, taking it all five days worked better due to nausea creeping in. A side effect of Granisetron is unfortunately constipation, but you can handle that fairly well by changing your diet. According to my oncologist, drinking was ok, so instead of eating late as I like to do, I just drank water or tea. During the 5 days of taking the TMZ, I also didn’t go to work but stayed at home.
I didn’t sleep very well during the 5 days of intake, so I slept in the next day to make up for the lost sleep in the night. Approximately starting with the last day of intake, I started to feel like having a light flu, but without a fever. I felt exhausted and queasy, but fortunately never had to vomit. The queasy feeling held on up to four days sometimes, but always receded with time. Eating generally went well, my initial appetite was usually rather poor, but came back when I started eating. However, I always tried not to overeat, so I didn’t get unncessarily nauseous. I took the Metoclopramide only 2-3 times at the beginning, then I never needed it again.
So much for my experience with TMZ. I’m glad I don’t have to take it anymore, but it wasn’t as bad as I thought it might be. And of course, I’d do it again. You never know if it really helps though, but I came through just fine and my MRIs are stable up to now, so I won’t complain.