Hey Teamies,
In Tuesday James had a meeting with his hemotologist and after a long, agonizing wait for some news he Finally has some regarding what is next for him.
From December this year he will be receiving a drug called Brentuximab Ventodin. This drug is basically the only next step for James at this stage. It is an anti-body drug that is specifically targeted against positive cancer cells such as Hodgkin’s Lymphoma which is what James is dealing with right now.
He will be starting on 1 dose of Brentuximab via drip for one day every 3 weeks for 3 cycles so 9 weeks in total.
Then comes a PET scan to see if he has responded to the drug.
And so the cycle repeats for up to 16 doses.
The goal is for James to be in complete remission and then they can go ahead and give him a donated stem cell transplant as they have already tried his own stem cells and they weren't unfortunately able to fight the good fight.
The donated stem cells will then (with all of our fingers crossed) become his new immune system to fight off any further cancers.
The donated stem cell will come from myself - if I am a match) and if I am not they will go to Germany for a donor.
James is still waiting to find out if the drug company will fund this drug on compassionate grounds. We hope to find out the answer to this as soon as possible. James and our family remain ever optimistic that they will fund this drug but there is still the reality of "what if they don't?". To put it into perspective, only 2 other people from wellington have been funded for Brentuximab.
Brentuximab costs $40,000 per dose.
$40,000 x 3 cycles is $120,000.
James definitely needs 6 doses = $240,000.
The hemotologist has said that if he gets funded for 16 doses they will use all 16 as it would ensure the Hodgkins was completely gone = $640,000.
Like I have said, we are all remaining hopeful that at least 6 of these will be funded but I will update you all regarding this asap.
On top of all this, James has been told by his Doctor that he will not be able to work for another 2 years. This in itself is difficult for him because as we all know, he loves his job so much and at such a young age this has been a huge set back.
We all, from the bottom of our hearts want to thank everyone that has donated money to james, it has taken a huge weight off his shoulders meaning he can concentrate on getting better and keeping himself as healthy as possible.
As you can all imagine, this has been a lot for James to process and deal with. Please, don't be offended if he doesn't respond to your messages or calls, he appreciates all of your support and encouragement but he's understandably exhausted and physically in pain. He will certainly make up for lost time when he has recovered.
He loves you all and big ups to all the boys doing Movember - you guys absolutely rock!
There really are no words to describe exactly how much all you are appreciated and I know that if he could, he would thank you each personally.
James - you are an absolute superman. We all have your back 110%. Keep up your amazing attitude to life and your awesome sense of humor 💙💙💙💙💙
