Update from Tim - September 2018 24 September 2018
Kia ora and hi everyone,
I know it has been sometime since I have made contact with those of you who kindly supported me over the past year in seeking treatment with Axitinib. Thanks to the hundreds of you, I was able to access the Pharmac unfunded drug last year. I did well on this drug for nearly a year and it was actually quite gentle on me as opposed to other treatment lines I have used since my metastic diagnosis. After a period of time we self funded access to the treatment and then Pfizer started to funding the drug but unfortunately I appeared to be going backwards and not improving. Later I was required to fund a top up dose of Axitinib and while I responded in most areas there was still an area of tumour growth.
At around this time friends who live off shore and sponsor a chair of oncology at a US hospital contacted me. They mentioned they could provide access to a drug which has been seen as really responsive to individuals with metastic Renal cancer specifically with metastic bone disease. So while the decision I made would likely cut any ongoing funding of treatments from Pfizer in New Zealand I knew that this drug was really one I would be foolish to delay using. I actually never thought I would gain access to Cabozantinib as it has only been in play having had FDA clearance for renal cancer in the US for about two years. I have no idea how long it will take before it is funded by Pharmac and used for renal cancer in NZ. Probably years as it may come here funded for those with lung cancer yet not renal as we have seen more recently like the immunotherapy treatment line Keytruda funded for those with melanoma in NZ but not renal cancer. Only about 3% of all cancers are kidney cancer so it doesn’t have the rock star status and the power of lobby groups who support breast, lung, melanoma and prostate cancers which are considered the big ones effecting the NZ population.
So it was an easy decision for me to stop my Axitinib and after a baseline scan commencing Cabozantinib. I have now been on this drug for a couple of months and I would be lying to say it has been a smooth road. It has hammered me a bit more than other drugs and certainly has it challenges. Although in saying that, while some of the side effects are not that pleasant, I am not getting as knocked around as others are (in the US) where it is commonly used. So I shouldn’t complain.
The great news is I had a scan session last week and I am clearly responding to this treatment. It’s early days yet for me to get some shrinkage which I haven’t had for over a year and stable disease is more than welcome news. This outcome allows me to continue with what is now known as my 4th treatment line. I am continuing on the maximum dosage until it ‘gives me the bash’ so much that I have to lower the dose and or have a few days break (one of the most common decisions patients on the drug make). So I am very fortunate not to be suffering to the extent many are on this drug.
Christmas and New Year will be on us before we can say boo so on that note best wishes wherever you maybe. I am not scheduled for another scan until mid January 2019 since I did so well with my most recent scan. For my colleagues at Air NZ I am working across all the cabin crew jet fleets while aligned more closely to the A320 leadership team. So I may see some of you around the circuit and trust all is well whatever sandpit you are playing in!
I apologise it’s been awhile I know since I have communicated what’s been going on yet I am pleased to share some great news with you all, nearly four years since my metastic diagnosis. I am still beating the odds challenging the bell curve and living very much with a purpose in my life. The support I get from Catherine is nothing short of amazing and to the others out there you know who you are and thank you always. It makes a significant difference to my ongoing wellbeing. Clementine is thriving and is a teenager next year - Go figure! But it sure keeps me on my toes and makes feel younger, not necessarily cooler (as I am frequently told that’s not cool Dad)! It’s tough when you are as big a dickhead as I am!
I will continue to keep you all updated as best I can and my quality of life is still far superior to the majority of those in my shoes and I am constantly told I look good. Whether that’s because I do or because people are unsure what to say - I’ll take it anyway. I look forward to the summer ahead of us while always enjoying what the season of spring provides us along with feeling privileged living in Aoteaeroa, New Zealand.
Trusting this finds you, your family and friends well?
Good to read your update. Blessings to you and your family, Tim.