I've been debating whether to post the latest about M's melanoma here but unfortunately I lost a lot of e-mail addresses when I got the new laptop.... so if you haven't heard, this is the latest. And if you have, sorry for the repeat.
We've been anxiously waiting to hear the results of the brain MRI, bloodwork and tissue samples. Finally last Wed we got news.
It was totally unexpected. Well, part wasn't - we figured he had the BRAF gene. That's a break in the animo acid at E600V. No. He has the break at L597U (I think it's U) which is so rare that this dr had not seen it before.
The brain MRI was clear.
BUT! To do something about the throat melanomas means M has to undergo a risky clinical trial using 2 separately approved FDA drugs in combination. One drug the insurance co will pay for, the other is paid for by the manufacturer.
It entails 12 weeks of every 3 weeks infusion of 2 drugs then 48 weeks of infusing of the one drug (the one the manufacturer is donating).
At the end of the 12 months - next summer - Mike, ideally, will be melanoma free.
There's side effects, this is very toxic and it's scary as hell. However, as his melanoma dr says, there's no options - even if the melanomas in his throat are removed, his immune system is being overrun by the disease and the melanoma will reappear somewhere else. And surgery will lower his immune system making that reappearance a given.
The drugs are nivolumab and ipilimumab- you can google and find out all about them. I really cannot bear to link to the side effects - scares the hell out of me.
Several of my friends told me how composed I seem about this. They should know better - but, let's just move on, shall we?
So, now we are waiting for the insurance to approve of baseline CT scans and another brain MRI for the clinical trial. As soon as M has those, within a day or two he will start the infusions and lab work at University Hospital. I'll post how that goes but the data manager says the first infusion is easier then the 2nd and 3rd which is when the immune system takes the hit and then side effects can roll into gear.
You know, I am gardening, spinning, riding my bike, rereading Diane Ackerman (Deep Play this week) and trying to stay as composed as my good friends think I am.
If you didn't get the group e-mail, leave me a comment and I'll add your e-mail to my address book. It's so annoying to realize I didn't update my list before shutting down the old computer's link to the internet....
I also intend to bail from the blog in November when my typepad account comes up for renewal. I don't know yet if I'll play with a free blogging site or just let it all go. One of the fun things to this blog has always been Mike's photographs. I'll have to see how we both feel in November.
This is one of my favorite photographs - taken at Red Mountain a few years ago. It reminds me how much fun we always have and how we need to get back up to the red canyons for walks. Soon.