I am now 12 weeks into my treatment program with Pegasys (Interferon.). This drug 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). According to my research, this is usually the last treatment method that the doctors try, likely because of the cost and the side effects.
The studies show that with interferon, it can slow the growth of the virus, which in turn enables a patient to go longer in between surgeries. I have mostly been on a six week surgery interval since late 2014.
I am pretty happy to report that on the last cycle, I was able to extend my surgery out an additional 3 weeks (9 week mark.) We have only been able to go that long once before (July 2016.) And to be honest, I was still able to speak audibly at that time but since we had the appointment we went ahead with the surgery. We have planned for surgery again at the next 9 week mark, but will wait until it has been six weeks to see if my voice is deteriorating at all and if we should keep the date, or move it out. Most patients don't report progress until 3 to 6 months into the treatment, so given I am 3 months in now, but may have noticed some improvement as early as six weeks.
The side effects are still consistent with what I noticed after the first few weeks. My doctor at Clearview Cancer Institute said that some people get used to the symptoms over time; that has not been the case for me. Fatigue, weakness, headaches and depression. The fatigue plagues me mostly after lunch every day; on weekends I can nap and regain some strength. On weekdays I fight through it but them am exhausted by the time work is over. The headaches seem to come from no where and immediately debilitate me. Often I have to lay down they hurt so badly. I am still hopeful that maybe my response is just slower to the drug and the side effects will eventually go away.
I am running about 20 miles a week. Short and (moderately) fast feels good; ie track work. Anything that requires endurance is very difficult. But the endorphin rush from running keeps me sane. And the Beagles love summer walks, so they are getting their fair share!
As for my voice, I am able to speak and be heard. It sounds a little scratchy, but has more volume and definition than I have had in almost three years; and that is what we have been after all along... some normalcy. Being able to order coffee at the drive thru and not have the barista think I am a 90 year old woman who has smoked her whole life. Being able to be heard in a loud room. Regaining some confidence in all social situations when being heard means being included.
Here is the previous paragraph, spoken.
My white blood cells have been up and down, but are still very low. My baseline was low to begin with (normal range is between 4.2 and 9.1 white blood cells per microliter) and I was at 3.4. Since then it has dropped by half, back up to almost at my baseline, then back down to my lowest levels (1.4). My doctor was not overly concerned because I am overall great health and as long as I can tolerate the symptoms, we want to stay the course with the current dosage plan. I will have more tests in a few weeks. The biggest concern about low WBC is risk of infection. I just have to take extra precautions when being in situations were germs may be present.
The original plan was to be on this drug treatment for 6 months and then re-evalaulate. That means that I am half way done. We may decide to stay on it for longer if there is any regrowth on the next surgery, or we may decide to back off and see if the virus comes back. One concern is that this drug has been known to have a rebound effect; meaning when you come off of it, the virus grows back worse than it was before starting treatment. While that sounds bad, my condition was about the worse documented case ever, so how much worse could it get!?
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.