Hello 2023, you’re an unexpected but welcome delight...

I started and stopped this blog post oh so many times. Part of me wanted to do an update on what’s been happening with my treatment, and then as I procrastinated, part of me thought I should do a reflective piece on the ups and downs of the past six months, but that felt too self-indulgent. tl:dr not having blogged since last July should be taken as a good sign that some normality, or at least acceptance, has resumed in mine and David’s lives.

My immunotherapy treatment has been been going well. I’ve now been receiving 6-weekly infusions of Pembrolizumab for over a year. Each time I have an infusion I still experience quite bad fatigue for a few days, but then my normal energy levels resume. Thankfully, I’ve not developed any autoimmune responses, which can occur during immunotherapy treatment, even late on. I am still having scans every 3 months or so, and these show that the Pembro has stopped any new tumours forming (yay!) and have shrunk the six identified lung tumours to a steady state (see graph below).

Ever-questioning, this graph actually caused me some concern back in September when I got the July results through -

1. Should I take these results as being good, in that Pembro has stabilised tumour growth and this is consistent with the treatment working well?

2. Or should I be worried that because the tumours are no longer shrinking, Pembro is in itself no longer being effective?

I organised an appointment in October with one of the world’s leading consultants (Professor Kevin Harrington, Institute of Cancer Research) on the use of immunotherapy treatments, and he was able to reassure me that I should be optimistic about the immunotherapy continuing to work in the immediate short to medium term. From randomised clinical trials on metastatic head and neck cancer using this drug (KEYNOTE-040), tumour stabilisation for a number of years seems to be possible, even when treatment ends, for a significant minority of people.

But this then give me another slight panic – Pembro is only licensed until either disease progression, or unacceptable toxicity, or for up to 2 years in any patient, which ever comes first. I believe that a written case can be requested on a patient by patient basis to extend this to 3 years, but given the cost of the drug (at over £120,000 per year) this is not a given. The cost of immunotherapy treatment is so expensive that its use in other types of cancer, especially melanomas, raise the interesting question of whether a durable treatment can be achieved using less of the drug. As can be seen from the figure below, the number of ongoing clinical trials testing immunotherapy drugs for head and neck cancer patients is now growing rapidly.

Summary chart showing the number of clinical trials of immunotherapy drugs for HNSCC patients

For deeper, long-term insights, we can turn to the use of immunotherapy for metastatic melanoma (skin cancer) which has been used for over 10 years now. As cancer ‘cures’ are associated with 5-year survival rates, conditions such as overall survival, complete response, partial response, and stable disease are now being assessed from the relatively long-term use of Pembro (see Table below for definitions). After having spoken to Professor Harrington, tumours in patients receiving immunotherapy for metastatic HNSCC do not disappear completely (i.e. a complete response is rarely achieved). However, partial response and stable disease are possible, even after immunotherapy treatment has ended.

​Overall Survival	The length of time from either the date of diagnosis or the start of treatment, that patients diagnosed with the disease are still alive. Measuring the overall survival is one way to see how well a new treatment works
​Overall Survival Rate:	​The percentage of people in a study who are still alive for a certain period of time after they were diagnosed with or started treatment for a disease, such as cancer. The overall survival rate is often stated as a 5-year survival rate
Complete Response:	The disappearance of all signs of cancer in response to treatment. This does not always mean the cancer has been cured. Also called complete remission.
Partial Response:	​A decrease in the size of a tumor, or in the extent of cancer in the body, in response to treatment. Also called partial remission
Stable Disease:	​Cancer that is neither decreasing nor increasing in extent or severity

What many of these trials show is that even after completion of the immunotherapy treatment for metastatic melanoma, durable responses were evident. That is, a large number of patients remained cancer-free for a number of years after treatment ended. Even patients whose disease ‘only’ stabilised, a significant proportion of those continued to have stable disease after 2 years of ending Pembro treatment. And for many of those who unfortunately exhibited disease progression, after Pembro was restarted, more than half achieved a new positive response to the drug. Finally, even for patients who had to end Pembro early, before their allotted two years of treatment, the benefits of the drug for many was surprisingly apparent. I guess the up-shot here is that while metastatic cancer is nearly always a terminal illness, there is still a great deal of uncertainty as to the optimal duration of immunotherapy treatments that can lead to effective disease control.

So for my own case, after talking through the potential outcomes (of my treatment) with Professor Harrington, both David and I have taken on a much more positive frame of mind with respect to my cancer. While less than a year ago it was not certain I would even see in 2023, we can now both see a future that takes in a few more years yet, and that feels pretty amazing!

My running plans have of course taken a turn for the more adventurous. At the end of this month, I’m running a 100-mile race around the coast of Cornwall, called the Arc of Attrition - Attrition because over half of the competitors are unlikely to finish, making it one of the toughest races in the UK! But under Toby’s (Queer Runnings) robust guidance, I’m confident I’ll finish under the cut-off time of 36 hours, even given the dark, and likely stormy conditions...

I’ve also just completed my third year of running every day, and fully expect to make 2023 the fourth year. I’ve secured a place on running May’s ultramarathon on Snowdonia, the only qualifying event in the UK for the highly competitive UTMB World Series. I’m also running Camino Ultra’s Lea Valley Ultra in March, And there are a couple of other ultra-marathon races that I’m waiting to hear on for later in the coming year.

So Hello 2023, you are indeed an unexpected but welcome delight...