Ray Frost

MPA Patient Story - Ray Frost, a woman and child sitting at a table together smiling at the camera

Tell us a little about yourself

I’m 78 (as of March 2021).  I’ve never smoked and I’ve always been pretty fit having been a former Professional Distance Runner and VFL/AFL Boundary Umpire, both at the highest level.  Work wise I was a senior executive with major Australian and multi-national companies. In my 20’s and early 30’s I would train for up to 2-4 hours per day (usually 2 sessions daily) regularly covering up to 150km/week.  After retiring from competitive sport, I ran 5-10km every morning up until my early 60’s when I retired from work and took up golf and tennis.  In my distance running days, during the summers of the 1960/70’s, much of my distance, speed and repartition training was in shorts and running shoes/spikes only.  I don’t recall warnings of sun exposure or availability of the use of sunscreen during those times.

When and how did you first find out you had melanoma?

In 2012 I had a melanoma removed from my right cheek.  I was assured that it had been removed successfully.  In 2017 I experienced pains in my side and had weight loss and bed sweats.  My (then) GP virtually dismissed me.  Because of my poor medical advice, I Googled my symptoms and demanded (from my incompetent GP) a CT scan.  The scan revealed multiple tumours in each of my lungs, liver, brain, etc.  A PET scan and liver biopsy followed.  I was referred to a Cardiothoracic Surgeon at Geelong Hospital and then to an oncologist at Andrew Love Cancer Centre, Geelong.  My oncologist reviewed my file and confirmed that my cheek melanoma was successfully removed.

Tell us about your treatment

I was diagnosed Stage 4C June 2017 and after a number of consultations I was deemed in-operatable.  I had multiple tumours throughout many organs.  I was told that I had 3 months possibly 4 left and certainly wouldn’t make Christmas (I distinctively remember those latter words).  My Oncologist said my only chance would be an immunotherapy trial – if he could get me on it.  He did and I went on Ipilimumab combined with Nivolumab (initially 4 combined doses) in July 2017.  In October/November I had a PET scan and the tumours had shrunk and some disappeared! My next PET scan was January 2018 and all tumours had disappeared – I was in remission and have been ever since.  I went off Nivo in January 2020.

What challenges did you and your family and/or friends face after your diagnosis?

On a daily basis I got on with life and given my dire diagnosis I tidied up personal affairs and tried to get any jobs around the house done so that my wife wouldn’t be left with any problems.  Throughout my initial 4 combined (Ipilimumab/Nivolumab) treatments I felt OK but immediately after the 4th treatment a blood test showed that I had developed severe hepatitis (non-viral) that required immediate hospitalisation.  The 1st Nivo only treatment was suspended and I was hospitalised for 4 days.  About 2weeks after discharge Nivo only treatment commenced, albeit with large (but reducing) doses of prednisolone. Interrupted sleep was my biggest problem – my wife says I was also irritable and had mood swings.  In early/mid 2019 – along with my oncologist and the Andrew Love Cancer Centre (and obviously other oncologists and patients) I participated in a successful submission to the Pharmaceutical Benefits Advisory Committee to have Ipilimumab/Nivolumab treatment listed on the PBS.  Throughout my treatment, aside from the hepatitis, I only experienced minor issues (e.g. rash) until about mid 2019 when I developed increasing joint pain that was diagnosed as Rheumatoid Arthritis – thought to be a side effect of the immunotherapy.

Tell us about your involvement with MPA

Andrew Love Cancer Centre suggested that the story of my successful treatment could help others.  They referred me to MPA.

How has melanoma cancer affected your outlook on life?

I have always been a positive person. As a distance runner I often experienced and conquered severe pain, so I mentally prepared myself for a difficult journey. My journey was not as difficult as I expected. I was also determined that, as far as I was concerned, I would try to shield the worst aspects from my family, particularly from my grand-children. I got prices for my funeral (not needed as it turned out) and I am back playing 18 holes of golf (walking) 2-3 times a week. Obviously, I apply sun screen and cover up.

Do you have a motto or personal mantra?

Throughout life, sport and business I have always believed in the power of positive thinking and in maintaining a reasonably healthy body.  I also refreshed it with a beer or 2 and a good red wine.  My oncologist thinks that my fitness, based on my early competitive sporting life and my ongoing less competitive participation, was a very helpful and positive factor in my outcome.

I’m happiest when…

I am around family and friends.

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