Woaaaaaa Nellie!

April 5, 2017

HALT! It’s time to change horses.

Dang this cancer is a worthy opponent. We’ve reached a fork in the road for the Carbo/Alimta chemo pony. She fought hard, worked up a good sweat and traveled as far as she could go.  A PET/CT scan last week revealed progression back to the pleura, one lymph node and primary tumor. Not back to square one, but progression and so we move onto a fresher horse. A beautiful strong filly named Afatinib and tagged with ‘targeted treatment’, a fresh blanket, saddle, reins, bit, and a new riding habit for me.

Jim, Lene and I met with Vignesh yesterday to go over the new findings and discuss a new plan of action.  Vignesh was well prepared and spent over an hour with us going over the suggested treatment plan and answering all of our questions. He had already called and talked with Dr. Camidge and Dr. Doebele at UCHealth and as my extended team, they think that even though it has never been tried before with my specific and weird for lung cancer EGFR mutation, we want to give targeted treatment a go.  Why and what is Afatinib? Afatinib is a TKI, or an irreversible kinase inhibitor that targets the kinase domains of among others, EGFR which encodes the epidermal growth factor receptor which belongs to a class of proteins called receptor tyrosine kinases…that’s a mouthful. Why Afatinib? Because I have some of the best minds in the biz saying it’s worth a shot and my gut says go for it. Afatinib won’t go after my good cells but will attack the cancer cells which is why targeted treatments hold so much promise. Will it work? We will know 2 or so months after I start the protocol.  I will be keeping my port for now for blood draws and such but the targeted treatments are tablets that I will take everyday.

There is one very large obstacle course jump that Vignesh has to overcome which is presenting this course of action to a consortium review at Kaiser.  Five other oncology docs and one pharmacist have to place their bets that this treatment holds promise and is worth taking the risk on. It’s my life.  I’m willing to roll the dice but they have to pay for most of it. If it works, then it would be possible that others with EGFR aberrations could possibly respond positively as well, and I’m all about paying it forward. We should know their decision sometime middle of next week and then start treatment sometime the week after if all goes well.  Vignesh says he’s up for the challenge and will make a compelling case, and being the super ninja doc he is, I know he will do his absolute best.

The more I research NSCLC, the more understanding I have of this specific cancer and the catch phrase is ‘always stay one step ahead’. It’s tricky, a worthy opponent to be sure. In the mean time I am relieved that I have 2 weeks sans chemo where I can polish my spurs and focus my energy on continuing being as healthy as I possibly can.  My blood work came back amazingly good. Vignesh actually said that after seeing the blood results, he was having a hard time believing the PET/CT! Other than some pleural pain, I feel great and there is still no metastasis outside of the right lung. As he says, “except for the lung cancer, you are in amazing good health”! Cudo’s to those prayers!!!

The side effects of Afatinib aren’t pretty…literally.  Most people taking the drug report an acne like rash, sun sensitivity and dare I say it, diarrhea. I just figured out the constipation, now we get to experience the other end of the spectrum, HA! These are the most reported but like any good TV commercial with side effects, I will be hyper aware of other possibilities.

Semi happy note, I believe the hair loss will slow down but I could have new growth that is very curly and a different color, most likely grey, can’t catch a break on this one. Unfortunately, the opportunity for long blond tresses which I have coveted at times over the years is definitely not an option…living longer is, however.

Again, I thank you for your continued prayers, good wishes and positive energy. I’ll update next when I know more.


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