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My Treatment Journey--Boceprevir Trial

Nov 18, 2010 - 0 comments




Posting this to my journal in case it will help someone:


--------- 5/10/2010----------

Got the news today that I have SVR'd. Not sure if anyone remembers, but I went into the boceprevir trial naive. My first 4 week results were very uninspiring. I went from 1320K (at the beginning) to 940K (2 wks) to 629K (4wks) which is about a third of a log drop when I started the blue pills. From there I dropped through the floor to <25 but still detected--which means it was not quantifiable by the test but still there. I stayed at <25 DET for the next two tests and then finally went UND at week 10. I had a blip at week 24 where I tested <25 DET again but on a repeat test I was UND and have been ever since. I finished up last November and have been steadily feeling better. Almost all my blood counts are back to where they were when I started except that my cholesterol numbers are higher. Going to have to deal with that. But that's okay. :)

I had various sx during treatment, including almost immediate anemia when I started the blue pills. That combined with that unmistakable awful taste (and the VL drop) assurred me I was getting the real thing and not the placebo. I was re-randomized at week 28 and after that I was getting SOC and the placebo only.

Thanks to everyone here for your support. Thanks for the jokes. Thanks for posting studies. Thanks for all the first person accounts of handling the disease and handling the cure. I knew exactly what I was getting myself into when I started treating and that really helped. It wasn't as bad as I feared or as good as I hoped. The one thing I thought would happen for sure was I'd lose my thyroid and that didn't happen. I guess I thought it would because I have thyroid issues on both sides of the family. But somehow they skipped me!

The trial I participated in was administered through Cedars-Sinai in LA. They took marvelous care of me.  I think the world of them. There is a 3 year follow-up and I plan on participating.

-------------- From 5/11/2010-----------------

If I'm allowed to give out one piece of advice to those who choose to treat, I recommend you make sure you have a doctor who knows what they are doing, and that you are comfortable with their style of treatment and attentiveness. If you are dealing with a nurse or PA, then you must feel the same way about them. Treatment can be quite anxiety provoking all on its own. You need to feel your medical team is supporting you and you need to be comfortable with their knowledge and decisions.


And I have just posted a followup here:

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