15 years since diagnosis - Dave's NET Story (part 2)

15 years since diagnosis - Dave's NET Story (part 2)

Part 2 - Update March 2023  (15 years since diagnosis)

My last update was in 2016.  Since then the NET was dormant for a while and then 2 years ago metastasised to the bones. I have had 6 rounds of PRRT (4 in Australia and 2 recently in NZ). This was followed by a course of CapTem.  I am still functioning, active, working part time and am VP of a local club.

In 2015 a relative with NET, introduced me to  the Unicorn Foundation. We attended several seminars and found out about the multidisciplinary team concept.  Up to this point my local oncologist had admitted no knowledge of NET or its management.   We met with Ben Lawrence and after a review process, and more scans, I was accepted into the PRRT programme run at Peter Mac hospital in Melbourne. This was at my expense - PRRT was not available in NZ and NET patients had to fund their own treatment offshore.

I had 4 rounds of PRRT in Melbourne during 2017-2018.  While this did not appear to have any immediate benefit, like SIRT there was a good uptake of radioactive material in all the known cancer sites.  Lots of subsequent scans, most of which showed “no progression.” This lasted until 2020 when I started to develop pain in multiple bone sites. Up to that point I had not had pain to any significant degree. Scans showed new metastases in spine, pelvis, sternum and other locations.  Now taking oxycodone for pain relief.

In early 2023 I had 2 further maintenance rounds of PRRT in Auckland (now funded and carried out in NZ). It’s too early to say how successful this has been other than that the bone pain has largely faded, to be replaced with a mysterious gut pain, the origin of which has so far eluded the medics.

So how have I spent the last 7 years?I previously spoke about the difficulty in pursuing a career while under a cancer sentence.  I resolved to keep myself occupied by helping people in any way where my skills could be useful. This has been a most rewarding experience, where the focus has not been on personal gain, but more related to friendship. Some of these experiences include: -

• Overseeing the running of a small engineering services company where the owner (my friend) had experienced a brain injury in a car crash. I maintained this role for 4 years before a shareholder  agreement was made to liquidate.
• Volunteering at the local Classic Flyers Aviation Museum. This has included archive work and helping with specific events.
• Supporting a friend in a case of wrongful dismissal. This had a successful outcome.
• Secretary and latterly Vice President of the Tauranga Model Aircraft Club. This is an organisation of 70 members. In addition to my formal role, I also produce a monthly newsletter, maintain the club website, organise fundraising and organise an annual auction.
• In 2016 I was approached by a headhunter seeking someone who could help with establishment of a small civil engineering consultancy in Tauranga. I was open about my NET situation, but felt I could commit to 2 days a week for 2 years. My task was to develop systems, and undertake recruitment, while the owner focussed on fee earning work. My employer has been incredibly supportive in my cancer journey. The company has now grown to 50 staff in three locations and I am now chair of the board.

We recently celebrated our 50th wedding anniversary. This was a period costume dressup event in Arrowtown, organised by my daughter.

All of these experiences show that there is a life after NET, that you can still be functional and worthy.

AcknowledgementsMy NET journey has now taken up a large proportion of my life span.  There have been high and lows. Periods of euphoria and despair. I don’t know how I would have coped without the support of friends, family and medical specialists. In particular:-

• My wife Cherryl who has become “energiser bunny” spending an enormous amount of time in looking after me and in motivating me to keep going.
• A large group of medical specialists – particularly oncologists Ben Lawrence (Auckland), Kate Clarke (Wellington), and Will Thompson (Tauranga).
• The Unicorn Foundation (now Neuroendocrine Cancer NZ) and Avril Hull in particular.

My happy place

Junkers D1 - built during the Covid lockdown

Kelda – aka “therapy cat” who joined us some six months before my initial diagnosis and has been my continuous companion since.