Merkel Cell Carcinoma - Peter's

Peter's Story - Merkel Cell Carcinoma

In late May of 2020 I noticed an unusual small reddish lump on the side of my neck. I wasn’t unduly concerned as I have had numerous skin cancers over the years and all had been treated satisfactorily with liquid nitrogen, efudix or excision. In early June I visited my GP who took one look and said “ that has to come out immediately”.

When the test results came back he explained that my lump had been diagnosed as a Merkel Cell Carcinoma, which he described as quite rare and very aggressive, and two weeks later I underwent a wide excision surgery on my neck. This had been arranged by a Plastic Surgeon who was now handling my case. He recommended that I also undergo adjuvant radiation on my neck to “mop up” any  Merkel Cells that may have been missed. The radiation sessions were completed in late September and I was looking forward to a cancer free  life as CT scan results were clear.

In March 2021 I was dismayed to notice a lump in the same area of my neck. My GP arranged another scan, and also made an appointment for me to again consult the Plastic Surgeon who confirmed that I now had a tumour in my neck which was rapidly growing in size. I accepted his recommendation that further surgery was the only option, and he performed a radical neck dissection and PEG flap reconstruction. Merkle cell carcinoma was found in 9/15 nodes with extensive lymphovascular invasion and positive deep margin.

Two months later I had a further appointment with the plastic surgeon as new lumps had formed in my neck. He suggested that I should bring my partner with me. These lumps were confirmed as new tumours which were around the suture lines of the previous surgery.

My surgeon explained that no further surgery was realistic and all the system could offer was to make me as comfortable as possible for the limited time that I had left to live.

It was now time for me to break the news to my family that my condition was terminal.

It was at this time that my daughter-in-law Mareea suggested that I might be a suitable candidate for ‘Keytruda’ as she knew of friends who had responded positively to this treatment. As I already had an appointment with the hospital radiation oncologist, and nothing to lose, I asked him about this product and he commented that it could be helpful but warned me that it was “self funded’. I was already aware of this, and my partner and family were encouraging me to pursue whatever might make me better or at least extend my life.

My surgeon arranged an appointment with a medical oncologist at St Georges Cancer Care Centre in Christchurch to discuss treatment with pembrolizumab. My partner accompanied me on my first visit and we were told firstly that my condition was going to shorten my life and secondly that the treatment had only a 55% success rate for Merkle Cell Carcinoma. As I was nearing my 81st birthday I felt that any more life would be welcome, and that 55%  was a gamble well worth taking. Prior to my first infusion of Keytruda I had a CT PET scan which indicated multiple new foci in my neck since my last scan, with multiple liver metastases and bone metastases.

I had my first pembrolizumab (Keytruda) infusion in July and by September a CT scan showed an excellent partial response, with complete resolution of some liver nodules. A scan in early November showed a complete response of all nodules.

My oncologist now uses expressions like ‘its amazing’ to describe the effect that Keytruda has had on  my cancer and needless to say we are both very pleased with the results.

I am of course very grateful to Mareea for acquainting me with Keytruda, but at the same time disappointed that no one that I encountered in the medical system  mentioned that such a treatment could be available. I appreciate that it is expensive and not funded by Pharmac, but to deprive patients of the knowledge that they could receive benefits from it is, I believe, reprehensible.