🧵 8 years ago today, my wife who was SO sick and so much pain with stage 4 melanoma with many bony mets received her first dose of the drug that was to become Keytruda. She was the last enrollee worldwide in the phase 2 trial.
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She had been given an effective death sentence. There was nothing left.She had failed traditional therapy and was in bed 23 hours a day, and dozed on the couch in a haze of narcotics the other hour. It was so painful to watch, and in the 6th and 9th grade my kids were reeling. 2/
When all hope was lost, I put my head into the lit, and became an ER doc specializing in the advances of immunotherapy and melanoma. I found the PD-1 drugs in trial and knew that I wanted her to have it. I emailed every oncologist in the nation studying the drug, and begged. 3/
This was a Tuesday and I found that the trial closed that Friday at 5. An amazing research nurse named Victoria at UNC Chapel-Hill had mercy on us and we went through the app over the phone and the forms were faxed from my ER at 4:55 PM on Friday. 4/
She was biopsied and given her first infusion after being randomized into the active drug. I was told I could remove her sutures from the nasty large grape sized tumor on her right shoulder in 10 days. This would start a 14 mo ordeal where we flew to NC every 3 weeks for tx. 5/
On the 10th day after her tx, she asked me to bring home a suture removal kit to take out her stitches. She pulled her shirt to the side and my mouth dropped and tears fell from my eyes. The tumor was MELTING. The sutures were floating in normal skin. 6/
Now, here, 8 years later, and she is training for Kilimanjaro early next year. The girls kept their mom into their own adulthood. Even though she has watched most of her “melahomies” die over time, she still has no evidence of disease. Joy and survivor’s guilt, hand in hand. 7/
Over those 14 months before approval, being out of network, and having to pay for 50% of costs for a zillion labs/scans plus 2 plane tickets and a hotel room, I spent WELL north of 100k out of pocket. And during that time I had to face facts. Important ones. 8/
My wife is alive because I make a lot of money. That’s all. Many/most people could not have done what we have done. The cards fell into place for us. A doc who speaks the language and can parse the lit and knows how to advocate for his family. The $$ to get it done. 9/
I do not pretend to know what it will take other than burning our health system to the ground and starting over to erase that inequity. But I know that SOMETHING has to be done, and it gnaws at me. 10/
For now, I will continue to advocate hard for my patients,and do my best to see that they receive equitable care. And VOTE. Because EVERYONE deserves the chance to live, and if the only thing that separates us is the size of our bank account, that is some grade A bullshit. 11/
But so thankful every day that the anniversary of her funeral, which was rapidly approaching, is not on my calendar. The photos in the first post are screenshots of Facebook posts we made that day. Enjoy. And F#%K cancer. ~fin
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