In June I finished my 12th cycle of Temodar, the oral chemotherapy that I’ve taken every month as the main treatment for my oligodendroglioma. I’ve written about some of the side effects I had before— but each month I seemed to have new ones. From Nasuea and vomiting, rashes, to low blood counts— in addition to an overwhelming fatigue that came with each 5 day course. Blargh.
But with each negative reaction I could feel, I imagined another effect that was 10 times stronger working to destroy my tumor. If what I felt was complete crap, just IMAGINE what my tumor must be going through! I could and would endure each side effect again and again if it meant I was successfully beating my cancer down. I was focused and thinking of the “long game,” you know?
When I started chemo, and was deciding on the treatment course to go with, I heard from my doctors that sometimes patients will continue on Temodar indefinitely. For years — they would just keep taking it— the idea being that if it’s working, why stop? Knowing this disease will eventually come back, why not keep it at bay with Temodar for as long as possible? Once I heard this, it sounded like a good plan to me! And, during each cycle of chemo, with my mind on the “long game,” I kind of planned to just keep going with it. Why stop at 12 if things looked good? It seemed scary to stop…. and wait. Waiting is not something I’m particularly fond of even when it’s for something I know I’ll like! I know it’s not equivalent, but deciding to stop also felt a little like giving up— like if I stopped, I wouldn’t be “doing everything I could.”
I know I’ve written multiple times before about this idea— and how it is impossible to even know in my situation what the right thing to do is. Oligos are so rare, there isn’t enough data out there for a confident “right way” to treat them. I already decided at the beginning of all this to hold off on radiation, so deciding not to do something else was kind of a hard choice.
So why stop? There are two main reasons that my doctors and I agreed to stop now after the 12 cycles, which has been the conventional treatment length, rather than continue on indefinitely.
First, I have continued to have significant bone marrow suppression and low blood counts almost every cycle— they usually have rebounded, but this can take longer and be worse with more exposure to chemo. Some people never recover. By stopping, the idea is to give my bone marrow time to heal properly, so that when I have to start treatment again in the future, I’ll be able to take more of this same chemo. It’s been almost 2 months since my last chemo doses, and my labs are still not normal— I’m checking them every few weeks and hoping that they will make a slow and complete recovery. Time will tell.
The second reason I stopped was because of something called “hypermutation” that can happen to brain tumors that are exposed to continued Temodar. And yes, it’s as bad as it sounds— tumors that are hypermutated end up being much more aggressive, can spread through the brain and spinal cord, not respond to other treatments and are associated with a worse prognosis. I definitely don’t want that if I can help it!
So…. I stopped. It still feels crazy to say that. I hate the idea of just waiting now for it to come back… but— as it turns out, NOTHING about any of this this is not scary. I just need to accept the fact that there will always be something scary going on, and I just need to be ok with my choices, and try to live without focusing on that element of it. And, even though I’m terrified of not “doing anything” — I’m also relieved and grateful to have a break from chemo. I know that if I live in fear, I won’t live. So— I’ll take the waves of emotion and fear that may come and go, but enjoy the lulls between as much as I can with the people I love.