Hello all,
Firstly, thank you so very much for your support, be it financial, sharing, or otherwise - this vicious battle is easier to fight with all the help we are receiving! The support is overwhelming, and we are all so very grateful to you all.
Ged's health:
So, for those of you who haven't been filled in yet; Dad has had a very, very sore back for a while, to cut that long story short it was discovered that there was a tumour crushing his spinal cord in his lower back. There were also several other tumours discovered in that CAT scan around his body in tissue and in organs, but the biggest threat was his spinal cord being damaged. Until recently, this diagnosis of Stage 4 Melanoma has been terminal.
Urgent radiation therapy was performed on the spinal tumour in Christchurch when the pain and swelling got very bad in September. The radiation and steroids really smacked that tumour back, and good progress was made with mobility and pain!
Unfortunately, as the steroids were cut back, some serious brain tumours started to play havoc (these tumours were not known about from the previous CAT scan) and further radiation was applied to Ged’s head in Christchurch in early October. This radiation has taken Ged’s hair, but he looks good, and hair is the least of his worries!
It was after this second lot of radiation that the oncologist explained how rapid the cancer advance is, and how the only avenues to fight it are costly. This is where this wonderful appeal started, and you all have helped in such touching ways!
To get started on the new medications, it was desired that the radiation settle down, and the steroid dose get slowly lowered. This past weekend, Dad's brain swelled up too much and he went into Nelson hospital again, where they have upped his steroids because the risk of brain damage is quite high.
Medications:
Ged has the BRAF mutation, which means that melanoma can spread very fast through his body - this is bad. But there are relatively new drugs (3-4 years old) that inhibit this mechanism and have proven to shrink tumours - this is good. So far though, this BRAF inhibitor medication (vemurafenib) typically only buys a few months of life - it just stops working after a while. It costs about $3,600 a week with some weeks free, but in total costs $88k for 36 weeks, then you get it for free ongoing - but, so far (by itself), it is not a long term solution.
The new hope is in the new immuno drug keytruda (Pembrolizumab). This is the drug that was on the TV1 Sunday program on the 8/11/15, has recently been publicly funded in Australia, the US, and the UK, and seems to restore health with remarkable/breakthrough success rates. This drug costs about $9k per infusion/shot - with other associated costs due to being done through a private institution. The articles are talking about $200k for a full round of it, but we are not sure where that number comes from.
Because Ged has the BRAF mutation (is BRAF positive), it is advised that he goes on that medication first - to slow/stop the spread and shrink the tumours. We think 2 months of this treatment should be enough, then move on to - or overlapping - the king-hit medication Keytruda. Before the latest brain swelling episode, it was thought that the BRAF treatment would start on the 25th of November - the radiation would be well settled by then, and the steroids would be at a low enough level... The steroids are proving to be required still quite high to keep the brain tumours at bay.
Thanks to everyone’s generosity , we should have enough money to get started on the BRAF treatment, and do several doses of the Keytruda – and hope that by then Pharmac will publicly fund the rest of the course – if any further keytruda is required.
If anyone has connections to the drug/clinical trial world, Ged is very willing to help find out how to make the BRAF (vemurafenib) drugs last longer. There are trials with vemurafenib and anti-malaria medications that seem to extend the period it works. A trial with both vemurafenib and keytruda would be ideal as this is what we are hoping to do anyway.
Pharmac is apparently trying to speed up the process of investigating the funding of Keytruda, but please, if you can, apply more pressure – sign petitions etc, time is something we do not have to waste.
We will update again when we know when Ged will start on one or both of these new drugs.
In the meantime, please keep the positive thoughts/prayers coming in, spread the word, apply the pressure, and all going well we will have the regular healthy Ged back in no time.
Brian and family
