Tuesday, April 1, 2014

Let There Be Light

Briar's Chi is strong. She reminds me to keep fighting!
A lot has happened since the last post, much of it positive.

I just got off the phone with one of my doctors at the Seattle Cancer Care Alliance (SCCA). They have decided to try Imatinib (sold under the brand name Gleevec), which will replace the Tacrolimus that I am currently taking. As recently as last week the team had decided to skip this option, as it would treat the symptoms of the GVHD and not the root cause. It made clinical sense because we didn't want to muddy the water with a bunch of treatments. Imatinib has shown to help GVHD patients about 30% of the time. It is what my friend Nick is taking (mentioned in a previous post) and he has seen a marked improvement in his mobility. I'll take 30% any day!

The phone call wasn't all sunshine and roses, though. The SCCA team wants me to consider putting a Hickman's catheter back in, because my current port is so temperamental (again, blogged about previously). We are going to give the port another try tomorrow. Please get in touch with your favorite deity and call in a favor on my behalf. I really don't want to go the Hickman's route and we need my current port to start performing. Living with a Hickman's brings the real risk of infection, not to mention the quality of life issues (can't lift Briar, showers are a nightmare, etc...). I'm going to stick to my guns for as long as I can, but we need to make sure the extracorporeal photopheresis (ECP) treatments are successful each time I visit the clinic.

Amy has also been researching UVA1, a light treatment that has helped some patients with scleroderma. This component of GVHD is part of the reason my mobility is limited. Unfortunately our dermatologist at SCCA hasn't found any local office with a UVA1 booth. Amy and I have decided to order a home unit (with luck insurance will help cover it). With the help of our dermatologist we'll be able to get the right dose at home. My skin always responded well to UVB, so we hope the same holds true with UVA1. We're going to get this GVHD one way or the other!

Finally, I was a guest on the Stupid Cancer pod cast. The show can be found here. I encourage you to listen to the whole thing, but I start at 12:50. Stupid Cancer is great organization that advocates for young adults with cancer.

1 comment:

  1. Awesome Greg! Can't wait to listen to the podcast. I am calling in my favorite deities per your request!