March 18 2025
Written by Jeffery Shoop, NRG Oncology Patient Advocate and 2x Head and Neck Cancer Survivor
Human Papilloma Virus (HPV) Awareness Day is March 4th and Head and Neck Cancer Awareness has its own month coming up in April. HPV infections affect both males and females. Over 200 types of HPV are known, but a dozen or so cause cancer. “High-risk” types, P16 & 18 are the most common, including cervical cancer in women.
Awareness is this article’s focus. First, let me state there are many websites, social media sites, and brochures in offices spreading the necessary information about HPV cancers. However, I wanted to find out if people in my local area knew about HPV. My recent personal experience doing a very small informal survey (10 people) in the general public has been quite enlightening. All ten were open to the topic and to the questions, but also wanted to hear more about HPV cancers, vaccines and treatment. To break down a few participants; I talked with a man in his late 60’s while in the barber’s chair. He was a pastor and learned about HPV during counseling parishioners dealing with cancer challenges. He also shared with me that he was currently being treated for prostate cancer and was having radiation treatment the next week. As a patient advocate, I offered encouragement and support. Next, was a junior college dental hygiene teacher in her early 50’s. Explaining HPV screening techniques being taught, she indicated it was a small part of the curriculum. She stressed how important and thorough this exam must be. Lastly, was a middle school counselor in her late 40’s. Her initial response was, “that isn’t a topic a counselor would talk about” but did say that it was most likely covered in the high school physical education classes. Unfortunately, I had not talked with anyone under 40 or with a high school physical education teacher directly. Again, this was a random selection of individuals.
Everyone interviewed had heard of HPV, and knew it is a sexually transmitted infection (STI), but very few knew that it caused cancers in both men and women and all were surprised to learn where the cancer shows up in the body, and that the same HPV cancer type can affect different areas of the body. Additionally, most heard about the HPV vaccine, but not the details for what age range should receive the vaccine. Recent reports show the FDA approved HPV vaccines are for ages 9 through 45.
This small survey response is encouraging and has me also questioning the advertising exposure effectiveness. It’s obvious that awareness of HPV is being heard but the details covering prevention and vaccines may not be. More surveys should be conducted among school age students, parents and teachers to ascertain if more education information is needed and what type of advertising (social media, print, etc.) is most effective.
As a head and neck cancer survivor (12 years) and a very fortunate participant in a clinical trial, my empathy goes towards others in treatment and survivors, but even more so to future generations. Prevention of this disease and the development of life altering treatments is extremely important. Quality of life after treatment is also important and we survivors must impart our experiences, so others don’t or won’t need to experience it.
Hearing Loss & Cisplatin
March 24th is also considered National Adverse Drug Event Awareness Day.
My initial diagnosis was stage 4 head and neck Squamous Cell Carcinoma. Initial treatment was chemotherapy using cisplatin: three rounds, and thirty-five radiation treatments (no surgery). I had hearing issues three days after the first round of chemotherapy. Luckily, my otolaryngologist ordered a baseline hearing test before treatment. Having another hearing test proved damage in both ears affecting the midrange hearing including tinnitus. So, my wife and I pushed to use another chemotherapy drug which ended up being cetuximab. There was no doubt that the hearing loss was real and the midrange damage and tinnitus was in both ears. This made speech extremely hard to understand, so hearing aids became very necessary.
Two years later, I had total hearing loss in the right ear. My ENT, then prescribed prednisone (which helped very little), then he used a through-the-eardrum series of injections of another steroid. This helped bring back hearing but made no change to the midrange issues. Then one year later, almost to-the-day, I lost hearing in the left ear. This time, I just happened to have an acupuncture appointment the next day. I asked if he could help get my hearing back and he smiled and said, “I think so, yes.” After a night’s sleep, I woke up with hearing in the left ear. Still no midrange or tinnitus change, but I could hear out of both ears.
Maintaining my hearing was discussed in detail before any treatment began and we were told it wasn’t a major factor. We know now that was false! Hearing is such an important part of my life as a performing and recording musician/drummer. That was discussed right up front with the oncologist.
Be your own best advocate. Ask questions, and don’t accept unreasonable answers.
Seek out a support groups:
• SPOHNC, Support for People with Oral Head and Neck Cancer
• Head and Neck Cancer Alliance, HNCA
• Immerman Angels
Cisplatin has been the preferred chemotherapy for many years and is very effective. My treatment was in late 2011, and I was not aware of any pre-treatment protective procedure to help minimize cisplatin ototoxicity. Currently, there are several strategies: antioxidants, anti-inflammatory drugs, and protective agent statins that may be possible depending upon your age and cancer type.
In order to help maintain and improve my hearing, I have been trying some alternative approaches: visits to a chiropractor as needed; acupuncturist for pain management and tinnitus; regular blood tests to assess optimum immune support; and, wearing ear protection in loud environments like when mowing, leaf blowing using snow thrower. I also use in-ear monitors during drum practice or when performing live to control the overall volume and the volume of each instrument. I’ve recently begun using “Red Light Therapy” to help relieve the “ringing” noise (tinnitus). Some clinical studies have shown positive results from this type of therapy, but no large-scale study has found results to date. So far, no improvement, but it’s only been a few weeks. Persistence rules!!! (fingers crossed)
Stay positive, smile a lot, and keep searching for better results! Oh, and one more thing! - Support LIVE Music!!!