Cancer Truth Note: #45
Seeking a reasonable answer to weird or uncommon side effects from cancer treatment is REASONABLE.
Looking back, I had 3 major side effect challenges that might have been handled better.
I got thrush three days following treatment. This happened for a year. Friday treatment, Monday sore throat. For 9 months of treatments, I had to see a doc to get treated. The side effects were not common and questioned every time.
Shortly after that first chemo treatment my nose started running and it hurt to touch. When I mentioned it to the nurse she said “that happens, everything dries out”. Ummm, my nose is running uncontrollably, it’s not dried out. Another HER2+ BC patient said to me “oh you have the Herceptin drip. They say it isn’t a thing, but it is. I have it too.” Fast forward 9 months, I saw an Ear Nose and Throat (ENT) doc. She took one look in my nose and very matter of factly said, “oh you have a staph infection.” Oh, is that all! She tested it to be sure and after 30 days of antibiotics I was better. It turns out this is something I may now deal with periodically forever. Yippee.
Finally, I am celiac and there is gluten in everything, especially medications. Turns out that most AIs and Tamoxifen have gluten in them. There are limited gluten free options. So, when I filled up with fluid and gained 10 pounds in a month in between running two half marathons and eating carrots and kale for lunch every day I was seeking answers from anyone who would listen. I didn’t get very far. One morning I woke up with the realization that it was gluten. It had not occurred to me that I would be prescribed something I was knowingly allergic to. After a conversation with my pharmacist, she felt certain it was gluten. It took my doctor’s office 12 weeks to get a confirmation from the drug company. It is simply not cost effective to make a gluten free version. The first warning on the leaflet is don’t take it if you are allergic. Finally, I had an answer and so did some others who were experiencing issues that could not be explained.
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