The anti-pd1 detour signs have been removed!

About a week ago, I wrote a post called It was a good ride Lambrolizumab about my scans not showing the results I needed to stay in my Anti-PD1 trial. This was based on my oncologist’s once over of my CT scans and although he told me he still needed to do the math, I had most likely reached “the end of this road.” Danny picked up a copy of the official scan report the next day. (Thank you again Darling for dealing with the hassle of that process!) As I poured over the report with my pen, pencil and two highlighters, my scan results were much better than I had expected to see! I had mostly stable tumors (no growth or shrinkage.) A couple tumors that had shrunk a small amount. Horray! And one tumor that had shown quite a bit of growth (this is what caused my oncologist to come to the conclusion that I was done with the study.) I was pleased with the results overall and sad to be done with this trial into which had seemed to work at first and given us great hope.

Today I met with my surgeon about removing my painful surface tumors. One which I had hoped would be removed is too complicated to remove without concerns about long term complications in my leg, but the large tumor on top of it WILL be removed as well as one on my back. We went over the surgery consent with my surgeon’s intern. He needs practice…. ‘nuf said. 🙂 I was teary on and off during my appointment, primarialy because it was clear the surgeon wasn’t ready to discuss my long term plans other than surgery and I was frustrated that I hadn’t heard from my oncologist about discussing my next treatment or trial options. Danny finally helped me find my voice enough to request we speak with my oncologist’s nurse. As soon as she heard I was teary and worried about not knowing what was going on, she put the pieces of the puzzle together to realize their had been a bit of a communication failure. She made some calls to confirm prior to seeing us and then came to let us know that….

I STILL AM A PART OF THE ANTI-PD1 TRIAL!!!

My tears almost immediately changed from worried to elated as I raised my hands in the air celebrating this fabulous news! She let us know that with tumor growth, you can’t have beyond 20% growth in the “targeted tumors” that are being measured for the study. I had only 17% growth, so I am eligible to get two more doses of my drug and then they will repeat the scans and re-determine if I will stay in the study or not. I still will have the surgery to remove my painful tumors, so I feel as if today was a double win! The surgery has to be approved by the drug company who is running the trial, but the nurse we spoke with today was pretty sure my trial nurse had already gotten that approval. (She is on vacation this week, which is part of the reason for the communication breakdown.)

Thank you for everyone who prayed for us today! This news feels miraculous to me and I am so thankful to God for the hope this gives us! Now our specific prayer request is that my tumors would all begin to shrink and these next scans would show vast improvement! We will update with dates for surgery and the like once we have them. Next week may be a busy week. The kids begin school Monday, I get infusion #7 of anti-pd1 on Wednesday the 7th (I am still giddy that I can write that!) and my surgery will probably be on Friday the 9th! Whew!

6 Comments

  1. Win, Win, Win! You are so amazing! You are beating this one step at a time and I’m so excited for you to still be a part of the trial. All the Lord’s Blessings each and every day! By the way, I was just talking about you….thanks to you my family didn’t get one sunburn this summer! I’m so proud of that fact. You’ve taught my family awareness and I am so conscious about sunscreening my kiddos! Hugs and special prayers!

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