My wife's long history of HPV 16+ head & neck cancer

My wife, Suzanne, was first treated in 2010 at the St. Lukes Cancer Centre, Royal Surrey County Hospital Guildford for SCC HPV16+ right tonsil and cervical lymph nodes, undergoing chemo & RT (60 Gys) followed by radical neck dissection. She recovered well until 2017.

She had a recurrence of the same type of cancer in 2017 (late diagnosis) this time in the nasopharyngeal space. It was not operable as the tumour was wrapped around the carotid artery. She consented to having a high-risk treatment of more RT (60Gys) & chemo at The Royal Marsden, the treatment area overlapping partially with that in 2010. This eliminated the tumour but had a devastating impact on oral tissue, salivary function, swallow and jaw fibrosis which still requires daily management to this day.

In 2019 she had a recurrence in the left cervical nodes and had a further neck dissection at the Marsden followed by a short course of EBT at the Royal Surrey County Hospital.

In mid 2020 she was diagnosed with a recurrence in the base of tongue and started immunotherapy treatment (Pembrolizumab) at the RSCH in September 2020. This treatment continued for 2 ½ years and virtually eliminated the tumour. However, towards the end of treatment it resulted in a severe adverse effect that destroyed pancreatic function resulting in exocrine pancreatic insufficiency and type 3C diabetes.

Unfortunately, a localised spread to the epiglottis was discovered in December 2022 and the RSCH referred her back to the Marsden for participation in a suitable clinical trial. In April 2023 she started on a clinical trial of Cemiplimab (Regeneron) immunotherapy combined with an experimental vaccine (ISA 101b) targeting the specifics of two HPV 16+ tumour protein expressions. This was planned to be a two-year trial with treatment on a three-weekly cycle, along with clinic appointments, blood tests and regular scans. However, the sponsors closed the trial to new entrants but her treatment is continuing on a compassionate basis. In May 2024 her treatment was suspended while while numerous tests for possible ulcerative colitis caused by the immunotherapy were undertaken at RSCH. Ultimately U/C and other inflammatory side effects were ruled out and treatment re-commenced in August 2024.