HNCSA marked the end of the year with a meeting at Domain Lodge on 1 December. We were fortunate to have radiation oncologist Andrew Macann speak to us about the state of radiotherapy, possible de-escalation of treatment for HPV patients and exciting new prospects for future patients using a combination of immunotherapy or the Auckland-invented drug Tarlox and radiotherapy. A Tarlox trial is underway in Auckland.

Our meeting consisted of a mix of patients, supporters and medical staff all appreciating the words of an HNC specialist. Andrew also answered  questions from our Facebook group.

The meeting was recorded and a video of the highlights will come out shortly. Some new information for me was the use of PENTACLO for radiation fibrosis. I had thought that this regime to improve blood supply was used for osteoradionecrosis alone.

Another group interested in HNC treatments was Merck Sharpe & Dohme represented by Sheryl Kurte and colleague Olivia. They are excited about possible future funding for Keytruda under the new government’s coalition agreement where 13 cancer drugs funded in Australia but not here will be added to our list of medicines. Equitable access to immunotherapy for HNC!

It was also good to see our two new trustees at the meeting, Ian and Peter. Both have technical knowhow and Ian is interested in providing support for other men who are outside the scope of our Facebook group.  While  the majority of members are women, HNC is more common in men. (We encourage men to join but know that Facebook is not for everyone.)

We’ve seen a rush of new patients joining our group. It’s hard to put into words the shock of a new diagnosis – you’re going to have half your tongue removed and replaced with a flap from your arm.  Your lymph nodes need to go and you will probably have radiotherapy down the track. It’s like the earth opening up under your feet. We always tell people to take it one step at a time and that they will feel better psychologically once they are in treatment even though the treatment is demanding.

It’s exciting to hear about trials using immunotherapy or prodrugs to treat the cancer before radiation and/or surgery. The thrust of research is not only the search for a cure but a search for effective treaments that won’t do so much damage to the rest of our bodies.

Mere Kirihimete everyone

May the pohutukawas keep blooming for a while yet

 

 

 

 

 

Maureen Jansen