We got a call from Vignesh last Friday. Kaiser’s parameters for treatment only allows for ‘proven’ clinical results and as we know, I would be the first to try Afatinib for my EGFR truncation intron 27 mutation. He wasn’t able to get past go, didn’t collect $200.00, couldn’t get any FaceTime either. And so we are trying to go directly to the drug manufacturer to see if they will:
1.) First and foremost, approve the drug to be used in this way. Again, it has never been tried and I was told an appeal would have to be made to the powers that be to get their go ahead. Unfortunately, there is no time limit on their answer. It could take 2 days or it could take months. There is money and reputation at risk for them, I get it.
2.) IF they approve the drug then we would need a break on cost. According to their website, this gold-plated drug runs about $7800.00 per month, $5300.00(+) if we could get it out of Canada. Almost $200.00 per day for a pill that will most likely give me acne and diarrhea, still trying to wrap my brain around that one. They do have a program to apply for reduced cost. Taking it one step at a time, keeping my pony from jumping out of the starting gate too early. I am also looking into organizations that help with Rx costs but again, trail blazing unknown territory comes at a cost and trying something for the first time is at best, unpredictable. No need to panic, there is still much to be revealed.
That’s where we stand. I really don’t have any more answers at this point, we are looking closely at our options. Vignesh suggests we become the ‘squeaky mouse’, (I love that term) and we will all do our part to get past this hurdle. This is cancer, there will be more hurdles but life is an adventure and I am extremely cognizant of the gift.
My next appointment is the 25th and Vignesh will keep us abreast of any news until then. And me? I continue my own personal woo woo. There is a plan, God always has a plan. That doesn’t necessarily mean that it looks like OUR limited vision plan, that’s part of the adventure!
Thank you prayer warriors, energy givers and positive thought makers. You are integral members of my team and I am forever grateful.