Yesterday marked the beginning of Week #3 for my chemoradiation treatment. By now, the cummulative effects of daily radiation have started to appear.  This includes oral mucositis (where the mucosal lining of the mouth breaks down forming ulcers) and xerostomia (dry mouth). The World Health Organization (WHO) Oral Toxicity Scale measures anatomical, symptomatic, and functional components of oral mucositis¹. The scale ranges from Grade 0 (no oral mucositis) to Grade 4 (unable to eat solid food or liquids). The majority of head and neck cancer patients (83%) who are receiving radiation therapy develop oral mucositis and 29% develop severe oral mucositis².

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Oral mucositis ulcer on side of tongue

My current assessment would be WHO Grade 2, which means that I can still eat solid foods despite the presence of ulcers (see photo of the single ulcer on the side of my tongue). Recall that I started taking Caphosol® at the start of my chemoradiation treatment. This oral rinse has been shown to reduce the severity and duration of oral mucositis in a clinical study. The study design used a different oral mucositis scale devised by the National Institute of Dental andCraniofacial Research (NIDCR), which ranks oral mucositis on a 0-5 scale where I would presently be at Grade 2 (single ulcer <1 cm). Results from the study demonstrated a peak Grade 1.38 for patients using Caphosol compared to Grade 2.41 for the placebo group. Accordingly, it will be interesting to see whether or not I develop additional ulcers or more severe oral mucositis to help determine the benefit of using Caphosol.

I received a progress report during my appointment with Dr. Nancy Lee, my radiation oncologist at Memorial Sloan-Kettering Cancer Center (MSKCC). The results are encouraging, as the tumor has markedly decreased in size over the first two weeks of therapy – characteristic for my type of cancer. The better news was that the PET imaging study looking at levels of oxygen deficiency (hypoxia) in the tumor tissue showed dramatic improvement. In particular, the pre-treatment scan showed “mild” radiotracer uptake in the primary tumor (right tonsil) and “intense” radiotracer uptake in the neck lymph node, indicating a significant amount of hypoxic tumor cells that are generally more resistant to radiation and many anticancer drugs. However, the most recent PET scan showed “no” radiotracer uptake in the primary tumor and only “mild” persistent uptake in the neck lymph node. Unfortunately, the fact that there is still some hypoxia means that they won’t be able to reduce the amount of radiation to the neck node, which could have reduced some of the side effects.

This morning I had my follow-up hearing test, which showed no change from pre-treatment.  This is also good news, as the chemotherapy (cisplatin) can sometimes cause hearing loss. Next week will be my second round of chemotherapy on both Monday and Tuesday. I’m hoping that this cycle will be less eventful than the first and that I don’t contract the flu or have any other surprises.

¹ World Health Organization. WHO Handbook for Reporting Results of Cancer Treatment. Geneva, Switzerland: World Health Organization; 1979:15-22.

² Vera-Llonch M, Oster G, Hagiwara M, Sonis S. Oral mucositis in patients undergoing radiation treatment for head and neck carcinoma. Cancer. 2006;106:329–36.

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Join the conversation! 6 Comments

  1. Sounds like great news!

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  2. I just binge read your entire blog. I really like the way you write. You give great information without putting me to sleep. I’m so sorry for what is happening to you. I, like you, was blindsided by colon cancer in September of 2015. NO symptoms, nothing. Just caught on a routine colonoscopy that I scheduled because my biological father died of the disease. I share your experience of being impatient for the start of care. Living in Canada with socialized medicine, my wait was 72 days for surgery. Yes, you DO start to wonder if those cancer cells are packing up and setting off for balmier locations! I don’t know you, but your writing has is engrossing, so I am now following you. Good luck to you and stay strong.

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  3. Hooray! Great news! Hopefully both the ulcers and the cancers will be short-lived. Keep those spirits up! You can do this!

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  4. I was holding my breath as I was reading your post and let out a sigh of relief when you mentioned the positive results in terms of the tumor and your hearing. I am so glad you started this blog because whenever I wonder how you are doing, I can just pop on your website and read for myself. Otherwise I would be driving you crazy with Facebook messages 🙂

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