Tell us a little about yourself
My name is Ron Neyenhuis, I’m 59 years old, married to Julie (my carer) and we have 2 children, Eloise and Brayden.
When and how did you first find out you had melanoma?
My diagnosis was in September 2014. A skin check by a dermatologist in August 2014 confirmed a suspicious mole on my back left flank that had changed and ulcerated (bled) to be positive to a Stage 2c melanoma.
Tell us about your treatment
Removal of that suspicious mole happened within a week and a tissue sample sent for a laboratory test. The dermatologist was also a cosmetic surgeon so I opted for him to do the wide excision when the test came back as positive, perhaps a mistake in that the surgery should have been done in a proper specialist surgery at a recognised hospital. The healing process was not handled well and further incisions had to be performed to correct the healing process. I must add at this point that together with the mental and physical trauma placed upon myself and my family was extreme. It must also be said that my employment went sour with pressures to return to work from my employer, all under physical and mental duress.
I was then referred to the Peter MacCallum Cancer centre for ongoing checks and maintenance in late December 2014. In January 2015 I had my first PET, CT and brain MRI scans. I had read all there was to know about Melanoma at the time and the treatments available to me. The scans showed nothing but an ultrasound on my groin lymph nodes showed a small irregularity. A fine needle biopsy was arranged, thankfully at that time all came back as negative to further metastasis of Melanoma. Dodged a bullet? Well I had thought so until April 2016. 18 months and PET scans every 3 months after primary surgery, a maintenance pet scan showed a ‘glow’ spot in my right lung, stage 4! To my understanding this was shock perplexing. How could it go from stage 2 to stage 4? Yes, as most patients affected by melanoma will know it can just do exactly that.
Surgery again was the method of choice at that time. It was seen by CT scans to be solitary and although not entirely clear, a rather simple surgical excise could be performed. Well, that was according to a top shot thoracic surgeon, if you could call any lung surgery ‘simple’!
To this brilliant surgeons forecast and delivery of the process to remove a ‘wedge’ of lung, all via keyhole surgery, he became the messiah in my eyes. In and out of hospital in 4 days, to someone in all their life that had never stayed overnight in hospital for anything, this was a real eye opener. Recovery at home, as you would expect with internal surgery, was long and arduous, about 6 to 8 weeks from memory. Although I still feel my lung capacity had diminished by around that 10% ‘wedge’ loss.
Yet again around 18 months after the lung surgery a routine PET scan showed some abdominal metastasis in September 2017. This time multiple, little glowing spots on the scan. Most likely lymph nodes as the scan showed that no intestines were affected.
My first intro to the oncology side of treatment, with the much heralded BRAF gene drugs available on compassionate grounds for stage 4 patients. Taflinar (dabrafenib) and Mekinist (trametinib) was prescribed and brilliant results in just 8 weeks with a clear scan in December 2017. I won’t go into the side effects too much but let’s say they can be turbulent to start with but tolerable after a period with some flexibility that these drugs have.
Fast forward 22 months after taking Taf/Mek we find they are no longer working and a serious progression again in the abdominal lymph nodes but also 3 spots found in the duodenum part of the small intestines. Literally a kick in the guts! After a gastroscopy to give a clear view of where these new cancer cells had settled, it was decided to remove part of the small intestine (40cm) which would excise all 3 internal tumours. The real unknown issue was the lymph nodes nestled amidst the gut area and behind the bowel, close to the spine. I must say these were probably the most mentally traumatic times through my cancer voyage. Not knowing how far the spread had occurred and having intestines and lymph nodes near the spine all involved, can all this be overcome? Well, up steps another brilliant surgeon, a specialist in abdominal cancers at Peter MacCallum Cancer centre.
Surgery July 2019 expediated due to a blockage forming in the intestine meant a bit of a panic but success once again with 3 intestinal tumours removed and 12 lymph nodes excised at the same time. 7 of the lymph nodes proved positive to melanoma.
Oncologist suggests starting immunotherapy asap. Ipi/Nivo started while in recovery in hospital 3 weeks after surgery. 4 treatments of the dual infusions and a very rocky road needs to be travelled, side effects causing hospitalization again to monitor nausea, imbalance with rashes, hair loss, vitiligo and the never-ending lethargy. Scans after 3 treatments show hot spots as well as a visual ‘hernia like’ protrusion from the midriff area. Persevere with the immuno infusions and wammo! complete metabolic response, all clear once again.
It only took 12 weeks later to discover the melanoma had returned, again in the abdominal lymph nodes and a spot on the liver.
May 2020 Oncologist recommends starting back on the combination BRAF drugs, this time vemurafenib and cobimetinib. It was short lived with an allergic reaction with a rash from top to toe resembling a leopard skin, together with fever/cough symptoms. At a time when Victoria was hit with the first lockdown from Covid19 virus it took some proving to Oncologists in Sydney, where we had travelled to, that I wasn’t a covid threat from Melbourne!
Sydney MIA Oncologist immediately suggests to try Braftovi/Mektovi (encorafenib/binimetinib) a UK/French version of the BRAF combination drugs with minimal side effects for most users.
My options are starting to run out! Of course I will try them, I have had success with other BRAF gene drugs so why not? I have had a great outcome with these although, at time of writing, I still have active tumours but they are diminishing slowly. Maybe a slower reaction is a brighter outlook forward as opposed to quick responses, time will tell.
What challenges did you and your family and/or friends face after your diagnosis?
What challenges did you and your family and/or friends face after your diagnosis?.
I think the greatest challenges are the mental ones. How long have I got? Who will look after my family? How can I defeat this disease and how will I pay the bills when I can’t work now and after I’m gone? The physical battles are somewhat short term realistically, well at they have been on my voyage. The surgeries have been dramatic for me but short term in the scheme of things.
Tell us about your involvement with MPA
I found MPA when arranging some fundraising for melanoma/cancer. People listened to my story in the early days and they pointed to groups to talk to and online pages to join so I googled and searched facebook. I guess my involvement started with online facebook page and quickly became the face to face group meetings in Melbourne, which was about 5 years ago now.
How has melanoma cancer affected your outlook on life?
Certainly has changed my focus about the future and how I want to be part of it, not delve into the ‘woah is me’ ‘why me’ scenarios although sometimes that does make me wonder.
Helping others affected, talking to general public, work colleagues and family and friends about the causes and cures for melanoma, prevention, protection and perseverance.
Start living life better, taking more time for myself and do the things I want to do.
Do you have a motto or personal mantra?
Melanoma Busters, Get a Skin Check, Plant a shade tree. And a quote by Bob Marley: “You don’t know how strong you are, until you need to be strong!”
I’m happiest when…
I’m with my family, enjoying life, having dinner together and communicating with each other.
Personally: playing sport, gardening or bush walking, that’s all ‘me’ time!