My Journey

My name is Jason Sprott, I am currently 48 years old and terminally ill with stage IV metastasis melanoma.(Metastases means that the cancer has moved to a secondary location.)

Diagnosis

In 2004 I went to see a GP about a suspicious mole that had changed colour on the back of my neck. The  mole was removed and samples sent to the lab for analysis. When I returned, he informed me it was melanoma and he was sending me to the Melanoma Diagnostic Unit at RPA hospital to see a Professor William McCarthy. During June 2015 I developed a pain in my spine which radiated to my left side rib cage, with a occasional shortness of breath. In April of 2016, 2 months into a new job working as a duty manager of a licensed venue in Sydney, my pain worsened, as did shortness of breath and so I wasn’t able to work on the Sunday night shift. So, I went to see a GP on the Monday morning, he sent me straight to St Vincent’s hospital Darlinghurst Sydney where I spent the next 10 days in hospital having every test imaginable. After having a MRI on the Wednesday I was given the news, there was a spot on the spine. They weren’t sure what it was, but would be doing a lumber puncture biopsy (the 2nd most painful experience of my life), given my history they were sure it would be melanoma. Following this I had an all out blitz from specialist appointments, neurosurgeon, oncologists, radio oncologists and orthopaedic surgeons. This continues today with a brain MRI every 3 months now and PET scan every 6 to 12 months when things are well.

Operations

After I was given the diagnosis that I was terminally ill and spent 10 days in Prince of Wales Hospital, I was given spine surgery. I had my T 7 & half my T 8 vertebrae removed from my spine and a titanium cage with 2 x titanium rods 7 x 35mm titanium screws. Holding it all together are 7 x 35mm Titanium screws that they screwed into my spine at my T 5 vertebrae  & again at my T 10 vertebrae. The surgeons also shaved the bone of my right side ribs which was then packed into the cage for a bone graft. It was a very long operation, as I was wheeled into the operating theatre at 7am and was wheeled out at approximately 7:30pm on Monday 23rd May 2018. It’s a day and date I will never forget, because my world was changed forever as I was placed on a disability pension.  Following the operation I had 6 weeks of physio to enable me to undergo radiation therapy to the spine area. I then started the treatment at St Vincent’s Hospital Sydney, 28 sessions in just over 5 weeks. I continued with regular checkups with orthopedic surgeon, oncologists, and GP appointments. I would like to thank my Doctor Ralf Stanford my senior orthopedic surgeon and his surgical team at Prince of Wales hospital.

In May 2017, 11 months after spine surgery a routine blood test found my blood levels were very low, so I was off for an endoscopy. These tests showed an ulcerated (slowly bleeding) tumour in the top part of the stomach, and I was sent for a PET scan which didn’t show anything. Surgery was scheduled at Royal Prince Alfred Hospital (RPAH), Camperdown Sydney for Monday 13th June, when surgeons opened me up and removed the tumour they had a look around and found another tumour and remove 3cm of small intestines. I was in hospital for another 10days, and would like to say a big thank you to my chief surgeon Prof Robyn Saw, head of Melanoma Surgical Oncology at RPAH (thank you for the individual, double stitches). Prof Saw also works from the Melanoma Institute Australia, North Sydney. Also to the nursing staff  and hospital staff that helped me, thank you.

In October 2017, after having an MRI, my medical oncology team from the Melanoma Institute Australia informed me I had a tumour on the brain, so I had to go for another scan 3 days later and then there was 2 tumours. I was place on Mekinist (trametinib) & Tafinlar (dabrafenib) from Novartis Pharmaceuticals. If  this medication isn’t successful they have the ability to operate to remove tumours once they increase to approximately 1cm in size.

October 2018  my tumours had increased over the previous 12 month period,  my oncology team where then able to give me double immunotherapy Opdivo (nivolumab) & Yervoy (ipilimumab). These were 4 infusions every 3weeks over a 12week period. After the 4 infusions my tumours were still there and hadn’t reduced in size so on Tuesday 12th February 2019 my neurosurgeon Dr Brindha Shivalingam removed my 2 brain tumours at RPAH Camperdown Sydney, and I was discharged 23 hour later to continue my recovery from home.

Mates Against Melanoma-The Jason Sprott Foundation limited

Due to my condition I was able to access my superannuation’s death benefit under the terminally ill clause, I then had some hard questions to face. Once I was to set to receive my death benefit payout, what was I to do with it? I could now only just a little short of the money needed to afford double immunotherapy which could potentially increase my survival time, but once the funds would be used, they would be gone. I would have no savings and fully reliant on government handouts. I thought if I was lucky enough to live 5 years, it would be hard to survive especially with the increased cost of living, and considering the types of surgeries I have had, would see the need for extra support that I would be unable to afford. So for me this was not an option and I decided the best way to help myself was by helping others, so I put my money in, and started Mates Against Melanoma-The Jason Sprott Foundation Limited. Our purposes as shown on our homepage have been chosen from the things I needed most of all after my terminally ill diagnosis and subsequent operations and rehabilitation.

The name I have chosen comes about from mateship, best described by an ANZAC spirit, this has proven time and time again, that standing side by side with your mate, we can defeat anything. So Mates Against Melanoma was born. My late father being a Vietnam Veteran, passed away in December 2011, with spinal tumours related to agent orange. He was given 5 years on a Friday when we spoke, on the following Monday he informed me he only had about 12 weeks to live, he passed away 11 weeks later. During this time, I never heard him complain once about the diagnosis, or play the victim card, or say why me. I am so proud of the way he faced what was coming, and I thank him for the strength for showing me that you can face your mortality with dignity and a smile and in his case a “cold beer”.

Some people ask how do I cope and stay so positive, I look to my father and a good friend of mine Dean Mesh (who passed away from Melanoma on the spine 2015) and feel I owe them and other people who have lost their battle with cancer a life debt, as they and others would have gladly taken any extra time to spend with family and friends. Human beings are very resilient creatures and it is amazing what we can over come, you just have to open your eyes and look around to see there is always someone worse off than you or me! I am grateful for things I do have and the things I can still do for myself. I will say it doesn’t mean I don’t have down days, but if I didn’t have the foundation I would find it difficult to get out of bed every day, this also helps me to keep things in perspective, and to realize the hardest part of this journey isn’t just on me, its on my family and friends. Thank you all for your support especially Natasha!

I would like to take this opportunity to say thank you to my current health professionals for their continued treatment; Professor Georgina Long Co-Medical Director of Melanoma Institute Australia (MIA), Professor Georgina Long, is the first woman and the first Australian to be President of the prestigious Society for Melanoma Research (SMR). Professor (Prof) Long has been inducted as SMR President at the 15th International Congress of the Society for Melanoma Research in Manchester, England, Dr Brindha Shivalingam neurosurgeon Chris O’brien Lifehouse, Prof Angela Hong (radio oncologist) MIA, Associate Prof Pascale Guitera Director of the Melanoma Diagnostic Clinic RPAH and Kate Willis clinical nurse from MIA.

I would also like to thank my previous healthcare professionals; Prof William McCarthy OA, Prof Scott Menzies, Associate Professor (A/Prof) Alex Guminski, A/Prof Anthony Joshua, Dr Raj Jagavkar (radio oncologist). I would also like to thank my previous clinical nurses Georgia and Rebecca and all my physiotherapists especially Loretta (keeps me moving like well oiled machine) and all the staff at Sydney Doctors (The Health Clinic) Chloe and Debra front office &  Dr Vincent Nguyen (GP) without his professionalism and thoroughness I would not be alive today, not once but twice, so thank you, also I would like to thank all my family and friends for your support through this challenging time. THANK YOU!

For the Future

In the future I believe with current research and the advancement of new targeted therapies, people wont die from melanoma, you will die with it. I also believe we will find a cure, at a biological stage where scientists will remove the cancerous gene. I don’t believe this will happen in my lifetime, but I sincerely hope the foundation will play a major part in funding research for these new therapies and treatments.

Final Thought

Melanoma is considered to be Australia’s national cancer and we have the highest rate of melanoma in the world and patients are only allowed one complete course of treatment, and if you are on public health system, you have limitations on when you can have access to top line therapies. If you do happen to have a battle with melanoma and have a full round of treatment and go into remission, as public patient if your melanoma returns you would have to fund your own future treatments. If you have some other types of cancer’s you can have as many rounds of treatment as required. I didn’t ever think you could discriminate amongst cancer’s, but I guess you can! I have started this foundation to support the melanoma cancer community with research and treatment, clinical trials, in home support services and advocacy. Just because I and others are terminally ill, doesn’t mean we shouldn’t have access to the best treatments available, even if is only to extend time with family and friends. (That’s Quality of Life)

What do you do when death smiles at you? Smile back and continue to Live Life 😉

#staysunsafe #getaskincheck

Jason Sprott

  • My Journey

  • March 2019
    Double immunotherapy infusions
  • February 2019
    Dr Brindha Shivalingam (neurosurgeon) removed 2 x brain tumours in a 2.5 hour operation at RPAH Camperdown Sydney. The surgery was successful and since having recent MRI, PET-CT scans on April 1st I was given the official news I am melanoma free for the fist time since October 2017. The pathology from the removed tumours were full of the immunotherapy Opdivo. On 8th April 2019 I start my single immunotherapy Opdivo infusions every 2weeks for up to 2years to keep the melanoma at bay.
  • November 2018
    I started double immunotherapy Opdivo (nivolumab) & Yervoy (ipilimumab) products from Bristol-Myers Squibb Pharmaceuticals, 4 x infusions every 3weeks over a 12week period at Royal North Shore Hospital.
  • August 2018
    Two brain tumors have almost doubled in size since last scan in May 2018, currently monitor, if tumors are still increasing, we will look at targeted radiation therapy to the brain to kill them, or surgery to remove them or double immunotherapy.
  • October 2017
    Currently 2 x Brain metastasis (right & left frontal lobes) started undergoing targeted systemic treatment, tumors were stable and now monitor with brain MRI every three months, until things change
  • June 2017
    Partial gastrectomy and small bowel resection (1 x tumor removed from stomach & 1 x tumor 3cm removed from small intestines)
  • April 2017
    Gastric metastatic melanoma diagnosis
  • May 2016
    T7 Vertebrectomy, T5-T10 pedicle screw internal fixations and fusion (T 7 vertebrae removed from spine and replaced with a titanium cage, 2 x Titanium rods and 7 screws)
  • April 2016
    T7 Metastatic Diagnosis
  • October 2004
    Melanoma primary diagnosis