Clinical Trial
Friends and Family,
We are thankful to share that we are back in Houston at MD Anderson gearing up to begin a clinical trial. There was only one that I qualified for, and so far, we are approved to enter into it. We have completed some of the pretesting and have a few more things on Tuesday before we start on Wednesday, Lord willing. The trial is for an antibody drug, it works by binding a specific receptor that is common to this type of cancer and also binds to the T cells, which are cancer fighting immune cells. The theory is that the drug will bring the killer immune cells right up next to the cancer to help get them to attack it. I will be the third person at MD Anderson to receive the drug. Its side effects include diarrhea and something called cytokine release syndrome. This basically just means my immune system can go haywire when I get the drug and can cause anything from flu-like symptoms to blood pressure or heart rate problems. I will be receiving a half dose the first time to try to limit some of these immune-mediated side effects and to help my body get used to the drug so to speak. Still, we will stay 2 nights in the hospital for observation. If everything in our pretesting remains clear, we should get admitted to the hospital Tuesday night to be there for the medicine first thing Wednesday morning, July 28th. If I tolerate the drug without significant problems, I should be discharged on Thursday around 24 hours after I get the dose. The dosing schedule is every 2 weeks, and the first couple doses we will spend several days in Houston for various lab testing for the clinical trial parameters. The plan will be to rescan about 8 weeks after I start to assess how my cancer is responding. If the cancer is still growing, I will be cut from the trial and will be moving on to other options we have cooking in the background. However, our hope and prayer is that my cancer will not be growing or might have shrunk. Of the other patients around the country who have received the drug and it helped them, they have most often seen long-lasting stability of their cancer, meaning it has stopped growing and stayed stopped for a length of time. But some patients have seen tumor shrinkage which would be amazing. Please pray with us against side effects and for the Lord’s hand to make this drug much more than we could expect.
Since my body has as much cancer as it’s ever had currently, my body is reacting with significant inflammation. This has manifested in significant pain in my low back and hips and some ongoing muscle spasms. I do have some cancer in my low back and pelvis, so these tumors could be contributing to the local inflammation or directly with pain just from them being there. This has been our biggest struggle lately, as this pain has progressed to causing me difficulty walking when it is really flared up. Our sleep has also been affected, as for the last few weeks I have had to float in a bathtub to relieve my pain and muscle tension enough to be able to get back to sleep. I have had some relief with anti-inflammatory medicines, but these have various downstream effects that we don’t necessarily need. We need my immune system ready to go once I get this trial drug, and we don’t want to be dampening it in any way. We are hopeful to get some medicine help from my doctor this week that will help my back and sleep but will not hinder my immune system at any level. Please pray with us for some relief and that this medicine might work a miracle and knock down my cancer which would knock down my ramped-up inflammation which would in turn help this pain.
“And he said to all, “If anyone would come after me, let him deny himself and take up his cross daily and follow me.” Luke 9:23. We have been finding that the cross we pick up to follow Jesus changes over time with this cancer journey. At first it was obviously terrifying, but for the first half of our year long journey, every other week I felt fairly “normal”. I could run, workout, and had normal energy and stamina for everything we did on a daily basis. But after radiation and the malnourishment that I suffered, things have been different. My strength and stamina left me, and though I have regained some of it back, I have some very different limitations. Now with this pain, it’s a whole new struggle. In the night when you have trouble standing up from bed to escape to the relief of a hot bath and then lie in bed fighting spasms and exhaustion from not sleeping, it is so easy to wonder where God went, so easy to cry out, “How long, O Lord?” It is in these moments that we have been so thankful that God has spoken truth to us and we can read and re-read His truths in the face of the lies of the darkness of night and pain and sickness. Pain can shout very loudly, but for what feels like more sleepless nights than it’s really been, we can attest that the voice of God in His word is louder and trustworthy.
“Why are you cast down, O my soul, and why are you in turmoil within me? Hope in God; for I shall again praise him, my salvation and my God.” Psalm 42:5-6a. We are thankful to serve a God who is so faithful to keep His own and to refresh their souls again and again through trial. He is worthy of our worship, worthy of our devotion, and worthy of following no matter what our circumstances are. His Word is alive, and He is our Salvation and our God.
May the grace and peace of our Lord Jesus Be upon you,
-Sawyer & Amy
