My loving husband, John Allen, was diagnosed with HPV related (Human Papilloma Virus) malignant squamous cell carcinoma on his left tonsil and lymph nodes in October 2017. This particular strain of HPV is also responsible for most cervical cancer diagnoses. John underwent 36 radiation treatments (finishing 2/6/2018) and completed 2 of 3 chemo treatments after which he developed kidney disease and nerve problems affecting his walking and left hand use. He also could not eat or drink anything due to radiation burns in his throat and had a feeding tube for several months. Once he could try eating most everything he tried didn't taste good due to radiation affects on the tastebuds. Other taste complications included a lack of saliva and sensitivity. Many things seemed spicy hot even if we would not consider the food item to be that etc...
After waiting the prerequisite time after radiation, he was scanned and the cancer showed up in his lymph nodes again/still. He had neck dissection surgery at the end of June 2018 where they removed 37 lymph nodes from the left side of his neck.
After recovering enough from surgery, he was scanned again and the cancer showed up again in his left tonsil. He then underwent a radical tonsillectomy surgery early in October 2018 and was put back on a feeding tube. He has remained unable to swallow and on a feeding tube since that surgery. So far, he has been unable to eat or enjoy food/drink for nearly a year and a half and suffers from a very dry mouth and other unmentionable issues due to an inability to swallow well and loss of part of his palette.
They also put John in a clinical trial for the immunotherapy drug, Keytruda, since he has already had recurrences of the cancer. He had his 1st infusion of Keytruda 3 weeks before the Radical Tonsillectomy surgery and by the day before surgery the tumor on his tonsil had shrunk considerably. A positive indication that John is responding favorably to the immunotherapy. This is great news and we hope he continues to respond well without any negative side affects. So far, so good. He will continue to receive the Keytruda infusions every 3 weeks for a year after surgery (till the end of Nov 2019). So far he has had a total of 6 infusions. The hope for the immunotherapy is that John’s immune system will recognize and kill off any future cancer cells before they can develop further.
Back to Radical Tonsillectomy recovery, or lack thereof,...Since surgery was done on heavily radiated tissue, the healing process has been very slow. The surgeon said his tissue healing has even been slower in comparison to others in his same position. John is now getting hyperbaric chamber treatments to increase the oxygen levels to his injured tissues. Those treatments seem to be helping the tissues heal better and John is noticing other improvements such as a slight reduction of numbness in some areas of his left face and neck. He’s also looking better generally. I think the oxygen is helping him quite a bit.
As I mentioned previously, John still can’t swallow correctly because he has a big hole in the left side of his throat and is now missing part of his pallet. We just met with a special prosthetic dentist about getting an obturator to plug the hole in his throat, which is creating significant pressure problems with his swallow. It will take a little while to get this, but I’ll skip those details. We hope after this, John will be able to learn to swallow again. As you might have figured by now, oral cancer patients have a lot of mouth related complications. John needs to use fluoride trays for the rest of his life to help protect his teeth due to low levels and quality of his saliva since radiation. There will be risks to his teeth, mouth, and surrounding bone for the rest of his life (even if the cancer never returns) which will require close monitoring.
As you can see, this has been a very difficult last year and a half and I wouldn’t wish this disease on anyone! Through much of it, especially lately, John has retained his great sense of humor and loving nature. I’m incredibly proud of him!
Anything we can do to prevent our children from contracting and spreading HPV, and improve the likelihood of early detection of Oral Cancer is well worth it! Please discuss with your doctor. They are also working on a vaccination specifically for people older than teenagers.
While oral cancer remains a small percentage of cancers overall, it has increased every year for the last decade due to HPV, and the death rate is higher than most cancers we routinely hear about (43% within 5 years). Not to mention the high level of suffering during treatment, recovery from that treatment, and ongoing. The death rate is particularly high due to the cancer routinely being discovered late in its development, which also increases the likelihood for recurrence of the cancer. This kind of cancer is routinely discovered in the late stages due to a lack of public awareness and missed opportunities for early detection, since there are no national policies to help facilitate awareness, early detection, and prevention.
The Oral Cancer Foundation funds lifesaving research and work to support early discovery and further disease understanding. Provides support to Oral Cancer Patients and Caregivers. Disseminates information and works to advocate for national policies that facilitate disease awareness, early discovery, and improve treatments and their outcomes.