12 week pcr -Gauf's friend

[evangelin]

My husband is Gauf's friend and we are grateful to have such a good guy for a friend.  Joe is also taking Alinia and there is a chance that the insurance will no longer want to pay for it because his response isn't that great.  It's better than he ever had before but still not great.  We have a Dr. appt. coming up and will have to discuss his chances if he continues.  It's such a hard decision because there is no way to know how his liver will hold up waiting for a PI.  He won't be eligible for a trial because his platelets run too low but so far no known decompensation.  He has non-bleeding varices though.
We had such high hopes this time and the thought of going 72 weeks is pretty unbearable but the thought of relapsing after 72 weeks is way past unbearable.  I appreciate all of you who commented and would love any other thoughts you have.  I have been very dedicated to this problem for a long time and fought as hard for Joe as I know how but after years of searching, I don't have any answers.  If he doesn't make it to svr we will go right back on HR's liver lovin list.  I might even try some of Matt Chin"s juicing.  I can't see it hurting but I can see Joe complaining about swallowing it.  I can do all the research but I can't swallow things for him. :>)  I would if I  could.  Joe is a wonderful husband and father and I'm holding on tight.  At the end of the day though, I know there is someone in charge of these matters, and it's not me.
Thanks,
Ev

[eureka254]

My heart and prayers go out to you and Joe.  I truly hope that the Dr. will supportive of  you and Joe's decisions --- and maybe, if need be, he can step up for you guys and convince the insurance to cover the meds for Joe's current course.  (One could make a credible case to the insurance about improved response on the Alinia combo, and that paying for the meds would be much cheaper for them in the long run than not, etc.)

(And then, there's always the option to dial up Romark directly and see what they have to say...)

And... the buzz is that eltrombopag (platelet-booster) is the next rescue drug -- plus, as the stats from the PI trials continue to increase svr, there's a good possibility the protocols will broaden to include people like Joe.

Don't lose hope, ev.  You have the knowledge and the kind of will that finds a way.  Your dedication and perserverence are inspirational -- bless your heart.  

All my best,
eureka


Your dedication and perseverence are inspirational, ev.  

[kickboxingmom]

I wanted to wish you luck in trying to find your answers.I wish I could help in some way.I will put you and Joe in my prayers.
Tammy

[can-do-man]

Yes, last cbc a few months ago had mine around 90. Waiting on my last blood test to see if their still holding. Mine also were in the 50's during tx. My hepo didn't seem to worried. Why these durn trials have to be so picky.

cando

[evangelin]

Joe's platelets have ranged from the 40's to low 70's the last few years.  Infergen knocked them down some and they never went up to the 80's again.  They have been staying in the 50's so far during tx.  He was in the Ideal trial some years back and their cut off for platelets was 80 and that is exactly what Joe's were.  His don't seem to go down too bad during tx. I assume yours are higher than 80?
Ev

[can-do-man]

I'm also a geno1, stage 4 relapser, so i'm sorry what your both going thru. You sound like a fantastic wife, he's lucky there.

Curious though as what his platelets run? Thats been an issue with me also but it looks like i still will get in the relapser trial with a P I.

Wishing you both the best

cando