Life of a Lab Rat

I am mid way through my second treatment cycle of a phase 1 study drug, living the lab rat life. This new treatment drug is called SGN-B7H4V, yeah so new it doesn’t have a name yet. It has been tested on animals and a few humans, mostly to determine side effects and efficacy. I am in the study that is looking at the best dosage. So I know I am getting the real thing, there are no placebos in this study, which is good. They are also continuing to study side effects and efficacy with my cancer type. This treatment is called an antibody drug conjugate (ADC) and it has two parts. The first part is an antibody that has been designed to find and stick to cancer cells. The second part is a drug that kills cancer cells, in this case a chemo drug called momomethyl auristatin. The antibody acts a bit like a trojan horse as it pulls up and sticks to a cancer cell, and the drug does its thing. This wikipedia page actually explains it really well if you want a deep dive.

So here is my schedule for a 21 day cycle, which is the dosage/treatment plan I am testing:

• Day 1 blood draw - around 10 vials for various tests. Infusion and four hour observation with vitals and blood taken at hour one, two, and four. Also meet with the study doctor.

• Day 2 blood draw for labs (on these days I just go in, get my port accessed, they draw a vial of blood and I go home)

• Day 3 blood draw for labs

• Day 4 blood draw for labs

• Day 8 blood draw - around 10 vials for various tests. Infusion and four hour observation with vitals and blood taken at hour one, two, and four.

• Day 15 blood draw and vitals taken

• Days 16-21 - just hanging out wondering if it is working

There are a lot of trips to UCH just to get a quick blood draw which is a pain in the butt, but is part of the study terms so I go. Getting a CT scan next week to see if the drug is actually doing anything to the cancer, that is after two 21 day cycles. This seems like a short treatment cycle that means a lot of appointments but it is a promising treatment and with treatment comes hope. If it works we will just keep going with the cycle.

Along with all the trips to UCH I have side effects/symptoms. It is tricky right now to know if things that are happening to my body are side effects of the treatment or if they are caused by the cancer growth. I have nausea and vomiting, fluid retention in my abdomen and legs, abdominal pain, neuropathy, and fatigue. The fluid retention led to hospitalization a couple weeks ago and the placement of an abdominal drain, adding one more thing hanging off my body. I also am now on oxygen. The questions are what is cancer caused and what is treatment caused? I guess ultimately it doesn’t matter what is causing all my symptoms, it is more about my curiosity about the root cause and figuring out how to manage it all. After I stopped being a knucklehead we have gotten the pain under control, and are working on some of the other issues now.

I have had some really great days recently and I love that. I am getting better at catching a good day for what it is rather than bemoaning all that my days are not. Anna took me to one of my appointments last week, that meant more time with her which was a win. I have worked in my yard for a few short bits both alone and with my mom, and have loved that - learning that 45 minutes of digging in the dirt is good, and I don’t have to finish cleaning an entire bed in one session. Watching a movie with Cherie, one I didn’t think I would like, but we gave it a go and enjoyed it together - don’t ask me the name - something with Nicholas Cage and Pedro Pascal. Yesterday the dog and I had a nice little walk together. Melanie came to see me last week and brought her new little baby, that made for a wonderful day. Napping in my new Lazy Boy recliner is pretty awesome too.

Some of those days above also had pain, nausea, etc, but they had those moments that were wonderful - I feel so grateful for them.

Lab rat life is keeping me busy with appointments, cancer is keeping me in the continuous realm of uncertainty. I am hoping this treatment will allow me time for moments of joy - I will happily keep up the lab rat life if it does.