Today marks one hundred days since I had the stem cell transplant. January 22 doesn’t feel like three-plus months ago, but I guess time flies when you’re having GVHD, er, fun. We were hoping to be back in Kentucky or at least on our way by now, but alas it was not meant to be. May 12 is Day 110 and our new target date to be released to go home. That’s just ten days from now, but a very critical period nonetheless.
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| By Quinn Dombrowski from Berkeley, USA (Tightrope Uploaded by russavia) [CC-BY-SA-2.0 (http://creativecommons.org/licenses/by-sa/2.0)], via Wikimedia Commons |
The next couple of weeks present a precarious set of circumstances for us. Since I tested positive again for the FLT3 mutation that was causing the leukemia and have a greater chance for relapse, we must take measures to prevent this sooner than intended. The difficulty comes in not doing something to make the graft-versus-host disease (GVHD) worse while at the same time preventing the leukemia from returning. It’s a delicate balance and tipping the scales in either direction could bring significant consequences.
Preventing Relapse
My doctors have a two-pronged attack for killing off the residual leukemia: targeted therapy and a stronger immune system. I restarted the FLT3 inhibitor, sorafenib, about ten days ago. This is the drug that helped me get into remission before the transplant. Thankfully, my body tolerated it well before. This is the second time that I’ve restarted it post-transplant. I took it for about a week back in February, but my GVHD flared up and I stopped. Whether or not this was due to sorafenib isn’t certain, but it was the only thing that changed and therefore expected of being the culprit. Now, though, the chance for relapse is great enough that it’s worth the risk to take sorafenib. Lord willing, the drug will make me “FLT3 negative” again.
I’ve also stopped photopheresis, which will allow my new immune system to recover and produce more lymphocytes. These white blood cells should recognize any cancer cells as foreign and kill them. At the same time, a stronger immune system means a greater risk for GVHD as my body and the donor cells aren’t used to each other just yet. This usually takes about a year or so.
Controlling GVHD
Drugs and vigilance are the two keys to success in controlling my GVHD. I take steroids (prednisone) and tacrolimus, both of which bring unpleasant side effects. The tacrolimus makes me jittery while the prednisone leaves me feeling weak and interferes with sleep. I already have the beginnings of a skin rash. It has slightly worsened over the last few days, but hopefully the medicine and topical ointments will keep it in check. Thankfully my eyes are still improved. It’s important that I keep a close watch on the symptoms so that we can address any new ones before they get out of control.
Walking a Tightrope
The challenge comes in not leaning so far in either direction that we set off something that can’t be treated. The relapse of leukemia presents the biggest risk, but severe GVHD can be life threatening, as well. Any changes in medication must be made gradually. However, reacting too slow could allow the cancer to gain a foothold if it starts to relapse. Since this also comes at a time of transition as we prepare to go home, I will not see my doctor as frequently and so it’s up to me to remain vigilant and inform her of any changes.
Despite this predicament, I am very fortunate to be where I am. My doctor admitted that she didn’t think I would get into remission and make it to the transplant. This was sobering to hear, but at the same time reinforces the power of God working in me. This isn’t the first challenge in this almost year long trial, and I doubt it will be the last. He has been faithful through each one. As I walk this tightrope, he promises to catch me if I fall.