play-the-numbers-gameJohn and I just got home from another frustrating visit to his local general oncologist. To catch you up, he started on the new FDA approved PD1 drug Keytruda on November 13th and was supposed to have his second infusion last Thursday. The day before Thanksgiving he started having upper stomach pain and we found out that his blood work showed a severely inflamed Pancreas. They put him pack on Prednisone to bring the swelling down and he felt better almost instantly. Last week when he went in for his second infusion he was still at about 50 mg of prednisone daily but his blood work showed normal numbers. Yay! That was the good news.

The bad news was that they couldn’t do the infusion with that level of steroids in his system so the doctor told him to step down off of them by 50% every 3 days so he’d be down to 10% by today. He’s been feeling fine over the past week as he’s decreased the dosage so we were hopeful that his Pancreas was fine. Today the numbers were back up to 4 -5 times the norm.

So no infusion today and his oncologist here in Walla Walla will call his specialist at Seattle Cancer Care Alliance today to get further input and see what’s next.We both feel strongly that one dose of the Keytruda is not enough and we want to attempt at least one more dose if at all possible. Unfortunately, the lump in his groin is also back up to it’s maximum size again over the past few weeks. We were told to expect that once he stopped the oral chemotherapy he was on this Fall, but it’s still disconcerting and a very visual reminder of what could be happening in the other nodes inside his body that we can’t see.

The good news is that John feels great. No joint pain or fatigue. As always, he took this news in stride and with an eye toward what we can do next (he’s a problem solver for a living, so that’s pretty much his default). Even his doctor said he was surprised by the “aplomb” he was showing in light of what could seem to some to be pretty bad news. He also was impressed that both John and I knew, off the top of our heads, what the normal ranges were for both parts of his blood test that relate to his Pancreas while he actually had to look that up. That’s because those two numbers are pretty important to us right now.

I’ve been maintaining a really even keel about his cancer for the past several months, and even last week when we walked away from the cancer center with no infusion, but today has hit me pretty hard. I’m trying to stay optimistic but I’m just frustrated and a little scared. This PD1 drug is his best hope and so many people are experiencing great results on it that we just really wanted him to be able to continue taking it. So for now, it’s a waiting game again as he continues on the steroids and tries to bring his blood work numbers back in line with what his docs need to see to allow for that.

Thanks for your continued positive thoughts and prayers. They are appreciated, as always.

 

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