What are the major obstacles in the way of HNC patients? There are too many to name but they range from the smallest things like actually getting to appointments to receiving rehabilitation after treatment. We are continually trying to assess need, raise money and fulfil needs where we can. At our first in person board meeting for a long time on 22 April we are going to discuss these issues. We will be at Domain Lodge from 10.30 til 12.30.

An important topic on our forum

One of the main topics that comes up on our Facebook forum is the toxicity of chemoradiation. Many people get so sick they have to miss out the second or third chemo treatment. This is where the long wished for process of de-escalation  of treatment comes in. Alas we don’t seem to be there yet as this post shows. A member posted this from a dedicated HPV group. It was written by Stewart Lyman, a scientist with an interest in this cancer. https://hpvcancerresources.org/

“Clinical trials are indeed underway to find some radiation/chemo treatment plan that is less toxic AND has a similar, if not better, five-year survival rate. These trials obviously take a lot of time, and they also take a lot of money to do properly. That money would likely have to come from the government, the hospital, or wealthy donors because drug companies would not sponsor or pay for such a trial (there’s no financial benefit to them for doing so).
Bottom line: everyone would like to see a “kinder and gentler” treatment for this cancer, and clinical trials are underway, but getting a clear answer will take time. You should also know that other types of therapies are being tested that might replace radiation/chemo treatments, but as yet none are as good or better than the standard of care. That’s a topic for another day.”

Raising money for Keytruda

Lastly, we are encouraging anyone we know to contribute to Adam Butler’s Keytruda fund. Adam has had several lots of successful surgery but he is prone to more of these invasive skin cancers and a systemic treatment will give him a chance of remaining cancer free. Adam and his wife are keen members of HNCSA. What’s more they are young and although we all want life to continue, it’s particularly poignant when a younger person is hit by an aggressive cancer.