keep-calm-and-be-a-rebel-24

Several of you have asked how John’s doing. I haven’t updated the blog in a couple of weeks because things have been fairly stable. I think that’s because we’ve gone a bit rogue. It felt like his doctors had sort of given up and they were telling us there were no treatment options left. Never ones to go down without a fight, we took things into our own hands.
John was on two oral chemotherapy drugs specifically designed to combat the BRAF gene mutation he has that causes his cancer to grow faster. The drugs cause a shrinkage of the tumors and worked great for him initially. Then, after about three months of being on them last Fall, they stopped working. Since he had almost an entire month of the pills left (and they run for about $20,000 a month), he couldn’t bring himself to just throw them away so we kept them in the frig.
After his sepsis infection in June, his melanoma specialist told us that his immune system had basically had a “reset.” We figured that might mean the drugs would work again, so he started back on them about a month ago (even though the doctor said he didn’t see the point).
His tumors are shrinking again. There are a few we can actually feel that are obviously and magically much smaller then they were even a few weeks ago. And the ones in his gut must be smaller because the bleeding he was having last month has stopped. We know it’s temporary, but in a world where new treatments for this very tricky cancer are being developed and approved almost every week, buying him even a few months could literally make the difference between life or death.
So, since we were on a roll, we asked his docs if he could start the immunotherapy Opdivo. It’s basically the same drug (Keytruda) he was on last spring but manufactured by a different drug company. There may be slight differences between the drugs and, taken in conjunction with the oral chemo, who knows. We figured it was worth a try. Even though both his local oncologist and the specialist told us they didn’t think it would make any difference, we asked if we could try it anyhow.
So yesterday, John had his first dose of Opdivo. All day I kept saying, “Honey, can you hear that? It’s your cancer cells screaming in pain as they DIE!” It’s now a running joke. We’re visualizing that.
Die, MO FO cancer cells…DIE!! I’m sure his doctors would be DELIGHTED to be proven wrong.
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