The Roulette Wheel of Cancer Medication- Why I Stopped Playing
BY Felicia Carparelli
PUBLISHED March 17, 2020
I have never been a person to take a lot of pills. I have been lucky that I don't need much medicine to get through my day. I am a doctor's nightmare because I don't finish medications. I follow my own feelings, for better or worse. March 4, 2019, I finished 20 sessions of radiation for breast cancer. It was a banner day for me. I was finished with treatment. Prior to radiation, I had endured four rounds of chemo, that made me wonky and unhappy and made my hair fall out.
The Neulasta patch, that prevents infection after chemo, made me feel like the Bride of Frankenstein. My body hurt and it smelled funny. The medical profession told me that my stage 2 breast cancer was gone. The tumor was removed. The margins were all clear as were my lymph nodes. I was ecstatic. The trauma of a lumpectomy, the port insertion and removal, those memories were dimming with the euphoria of being done with treatment. Except for one big stumbling block. Me, who rarely took a pill, was supposed to take five years of Letrozole, an estrogen blocking pill to prevent breast cancer recurrence. I tried, I really tried to take it.
At first, I took it seven days a week for three weeks. I became depressed, restless and developed a cramp in my neck that was so excruciatingly painful I bought new pillows and a neck roll. I hurt. I read journal articles about estrogen blockers on the National Center for Biotechnical Information, U.S. Library of Medicine, National Library of Health website. I am not a doctor or a scientist, but I am a librarian and a teacher I can read. So, I tried to absorb information.
I tried to interpret the statistical analysis of the tests that were run on people with my condition. I researched Letrozole and its effect on breast cancer patients. I was supposed to take Letrozole daily for five years. One study determined that if taken 75% of the time for 55 months, the effects were the same. I was encouraged by that at first. But after a few weeks, I couldn't do it. I wanted my body back. I am 67 and have osteopenia, so the bone scan said.
I like to tap dance and walk my dogs and swim. I could not handle the joint pain. I was offered Boniva, but I am in the process of getting dental implants and that shot does not jive well with jawbone health. What to choose? Teeth? Eating? Dancing? Not feeling suicidal? A higher risk of my breast cancer returning? The roulette wheel of aging was thrust upon me and I was spinning. My Oncotype DX genomic results stated that with chemo and Letrozole my recurrence rate in 10 years would be 6%. Without the Letrozole it would be 12%. I am taking the risk. I wanted my neck back. I wanted to feel less sad.
I know I am not doing everything I am supposed to do to prevent cancer coming back, but after all, I had been through chemo. I felt I had been flooded with enough meds to last me a lifetime. Taxotere and Cyclophosphamide, given in multiple IV bags to me, are drugs that made me bald and gave me neuropathy in my fingers. My heart beat fast for months and I still feel a bit of chest congestion which I did not have before chemo. So, with great misgivings and some fear, I tried taking it every other day. Then twice a week and then I stopped completely. I told my oncologist I had stopped taking Letrozole. She offered me Tamoxifen. I politely refused all substitutes. Chemotherapy is a medical cocktail of epic proportions.
When I read after the fact that some chemotherapy was derived from mustard gas used in chemical warfare in WW1 I almost fainted. Mustard gas? In me? And I thought Amoxicillin was bad? I know the rationale behind treatment. I had a tumor, it was cut out, my Oncotype DX genomic test results made me a candidate for a return of cancer, so I had chemo and radiation. I went with that. I hope it was enough.
I eat well, I exercise, I walk, I sing, I dance — I try to be positive. I love my family and enjoy my pets. I try not to worry about the world all the time. I would never tell another person what to take or not take, I can only tell you what works for me.