Friday, April 21, 2017

Nicolas Flamel and the Philosopher's Stone

This past Thursday was my third round of Pegasys injections. Interferon is typically used to treat cancer patients, but has been proven to have some limited success when used “off label” to treat Recurrent Respiratory Papillomatosis (RPF). The hope is that with the interferon it will slow the growth of virus so that it will be longer between surgeries or that it would actually kill the virus and I would go into remission. Rachel has been able to give me the weekly injections; I hate needles and she is tough as nails to shooting me up is something she can stomach.

The side effects were mild at first, but certainly are persistent. If I were to rank them from “sucks really bad” down to “sucks not as bad,” I would say they are fatigue, weakness, depression and headaches. Side effects are supposed to be worst immediately after the injection, then slowly fade over the course of the week. Then the cycle repeats all over again. Some research shows that after a couple of months the patient gets used to side effects but that is yet to be seen.

The weirdest part about a side effect is the psychological aspect. Do you think you have side effects because you are supposed to have side effects, or are they all in your head? Do I really feel lousy or is it just my subconscious?

Other than the side effects, I also have a decreased white blood cell count. This was expected. The normal range is between 4.2 and 9.1 white blood cells per microliter (mcL). My baseline tests before I started taking the injections showed I was at 3.7, or slightly below normal. But in the few weeks since taking the injections, my WBC has dropped by half, down to 1.8. Low WBC counts significantly increase your risk of developing an infection so I need to be very careful with trying to remain healthy.

As an engineer, I know that you need three data points to create a trend line. So just having a baseline and the single point since means that the trend is inconclusive until we take another sample this week. It is very well possible that 1.8 is the new baseline and it will not drop any further. Dr. Schreeder at Clearview Cancer Institute agrees, and said that there is no need to adjust my dosage until we see the third data point.

Just like Nicolas Flamel and the Philosopher's Stone from Harry Potter, we are hopeful that this treatment will be the magic elixir that we have been looking for.

I will go to see my physician at UAB on Tuesday for a scope in clinic to determine the regrowth rate of the virus. We don’t expect to see any results from the interferon injections for 3-4 months, but since this virus is an unknown entity, it could go to sleep at anytime for no apparent reason.
So that is all for now. We will continue to fight. We are hopeful that this is the treatment that works and I will be able to have a normal life again.

You shoot me down but I won't fall, I am titanium.

The regrowth on the right is much worse at 5 weeks, than the left after 6 weeks.