Things to Know About Chemotherapy for a Brain Tumor
, by Giselle, Ependymoma Survivor
Giselle shares her treatment journey with five brain tumors over 23 years and the lifelong impact. She also shares important advice to manage chemotherapy and stay positive.
I first learned I had a tumor in my brain in 1997. It was so hard because I didn’t know what to expect. The neurosurgeon couldn’t see where the tumor was attached, so there was no way of knowing the outcome of surgery and long-term effects. My doctor said I would be back to work within six weeks, but I haven’t worked since.
The ependymoma tumor was completely removed. After surgery, I had a lot of physical therapy to relearn how to walk, talk, and control my body. It took some time to recover, but my functions returned to normal.
Discovering Tumor Regrowth
Over the past 23 years, I’ve had three tumor recurrences in the same location as my first tumor. My recurrences were treated with radiation, gamma knife and surgery, but that did not completely kill the ependymoma tumor. I thought I had maxed out of every treatment and was out of options. My local physician and I decided to watch the tumor and wait since the tumor appeared stable.
In 2019, during a routine MRI, we noticed a tumor located in another part of my brain, which appeared to be a subependymoma. We discovered the tumor was not a new tumor, but my original tumor moved from the center of the brain and ventricles to the front of the brain in-between my eyes. Since it is not normal for that type of tumor to move and my optic nerve was now involved, my local physician referred me to the Neuro-Oncology Branch at the Center for Cancer Research, NCI for a consultation to determine the best course of treatment.
First, neurosurgeon Prashant Chittiboina, M.D., of the National Institute of Neurological Disorders and Strokes (NINDS) performed a debulking surgery to remove as much of the tumor as possible. Since it was attached to my optic nerve and would eventually impair my vision.
Second, neuro-oncologist Marta Penas-Prado, M.D., of the Neuro-Oncology Branch, talked with my local physician about starting chemotherapy treatment closer to my home in Oregon. This would eliminate travel to NIH Clinical Center in Maryland, which would take a lot out of me. We decided on a standard therapy of chemotherapy drugs, temozolomide and lapatinib, because they showed promising results for others with recurrent ependymomas.
What to Expect During Chemotherapy
I started chemotherapy in January of 2020. This is the first time I’ve had chemotherapy. It was not a viable option when I was first diagnosed.
All my treatments and appointments are now virtual since the initial consultation, which I prefer because of the pandemic and my weakened immune system. My local doctor manages all my therapies.
I take two different types of pills (temozolomide and lapatinib) orally. I take temozolomide for five days straight and then I am off for 23 days. That is considered one cycle. I take lapatinib daily. I take one of the medications in the morning and one in the evening so that I can tell which drug is causing each side effect. I even set an alarm for the same time every day to remind me to take the pills.
As with any treatment, each person may react to treatments differently. Some side effects I have experienced with temozolomide are headaches and nauseousness. For lapatinib, I have not noticed any side effects. I do not have the same energy level when I am on chemotherapy. I sleep a lot, sometimes 12 to 15 hours a day. It takes a lot out of me and I could not imagine working full-time.
Overall, I am able to manage the side effects. I was surprised that my side effects are not the same month to month. They also seem to get worse over time. I am thankful that my parents live in the same city. They take me to the doctor, take my kids out since I can’t, and bring over food.
Advice for Others on Chemotherapy
- Be aware of your body and your needs.
- Contact your doctor if you have questions.
- Your doctor is there if you have problems. They work for you, not the other way around.
- Maybe you think it’s not a big deal, but if you let it go then maybe it would get worse.
- Seek out answers and find another doctor if your issues aren’t addressed.
In general, live in the moment. Do not worry about what could be. Focus on what’s going on right now. When you hear brain cancer you think the worst, but many people live a long happy life.
Cancer is a big deal, but don’t let cancer rule your life. Find a support group, family and friends, or spirituality to help you cope.