U Miami called today with a offer to apply to a
open label trial of a combo pill taken once a day of Sofosbuvir and Ledipasvir (I think I spelled those right).
Here is the study:
They are offering a trial places without Ribavirin to some post transplant folks who have high Viral Loads.
It is not definite and TP center is doing a bunch of background stuff to get ready: bone density, liver biopsy, nephrology consultation...and we have that in process.
A clerk called today and I sort of laughed. She wants Mike's medical records from 2009 forward. I think we have about an 8 inch pile of medical records....she says just bring the notebooks and they will copy what they want.
I think Mike may copy them or scan them and send or bring the files. We are figuring this out.
We have more questions than answers, but for now I think I will open this post and go back to it to add information as there is information to share.
They told us that the meds would be paid for by the study. But that it isn't 100% that we would get in.
They are having HUGE success rates with it...like 100% for Genotype 2 and 3 in a very short time with and without Ribavirin. For Genotype 1 there have been some reports of relapse and I think they are extending the length of time to see if they can decrease relapses. (Earlier regimen was 8 weeks...now they are talking about 12 or 24).
I am reading everything I can find and don't recall anyone on this site having this treatment...are there?
The posts don't talk about heavy side effects. That will be something to learn about. And we will want to discuss with cardiology as he has that valve problem...
You know me, Ms. Emotional. I cried a bit when I got off the phone and started to read about the SVR %ages!!! If Mike could be free of the virus it would give him more of a chance to live out his normal life.