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Avatar universal

Start treatment and have surgery

My husband is seeing doc next week to hopefully start treatment with the newly approved Sofo with RBV and INF. he has issues with his shoulder and thinks he can get surgery for that while starting this treatment. I do not know yet if his doc will prescribe this regimen and even if his insurance will cover it. (Express scripts). From all I have read, for his Hep C genotype 1a, he is going to have to get the INF regardless. Sooooo.....what do you all think. I am so worried about him, when he had is liver biopsy it said he was at a 3/4 ?? Not sure what that means.he has a lot of sensitivity in the area of his liver, and to me, has also appears to have fluid buildup. He looks 8 months pregnant to me, and the way his stomach bulges, i can't believe it is just fat. If it were you would you attempt shoulder surgery while on treatment. When he had his other shoulder done a few years ago, it was a living hell....please please ....tell me what you think. I can't stand to see him in all this pain. He also has much fatigue and sleepless nights and joint pain in general, I try to watch how much Advil he takes, because I know that is not good for the liver.
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Avatar universal
Yep! I should find out any day if I'm positive with Q80K.
However....I've decided to ask my hep dr to let me treat regardless. Results show a 15/20% less effectiveness with Solvadi/Olysio if positive with Q80K but as far as I can see from other (AbbVie) trials that makes them pretty much comparable. I'm dead set on not treating with RIBA much less inf.
I have appt tomorrow so will see what he says...
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Avatar universal
Finally! Results show that I do have Q80K. Same here with the labs....the sample has to be frozen within a certain time. Mine were not so had to go back for a redraw. They only test this once a week and it takes 5 days for results. Then the report was confusing so I got the call I was negative and a few hours later that I was positive. Quest labs and yes it's new to them hence all the confusion.

But! After talking to my hep dr we decided to go ahead with the off label of Sovaldi/Olysio regardless. I might mention too that he consulted with the Director and got his approval as well.

I realize that my chances to clear fell from 100% to 91%.....

"When looked at by HCV GT1 subtype, the results show that patients with the Q80K polymorphism did not fare as well. In cohort 1, 89% of patients with that polymorphism achieved an SVR12, compared with 100% of those with GT1a or 1b without Q80K. In cohort 2, 91% of those with the polymorphism achieved an SVR4, compared with 100% of the patients with GT1a or 1b who did not have Q80K."

....but I am willing to go with those odds as opposed to the infer/RIBA route.
Doc actually never mentioned interferon except in the beginning that that wasn't what he supported. He did suggest that I could do Sovaldi and RIBA but it was my personal choice not to.

Soooo......pharmacy has them and confirmed my copay of $30 each. The prescription has been written. As long as Aetna doesn't throw a wrench in the works I should be starting soon. :)





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Avatar universal
Hi friends, need you positive energy and prayers that my latest plan works. Thanks to all of you and all the info I have gleaned from this site, here is were we are. My husband went to have the test done for Q80K. The tech had no clue on how to handle the prep of the blood for this teat and had him sit there for over an hour contacting his doctor and calling other sources. I guess it is so new! Anyway, supposedly the prep and blood must get processed within a 6 hour timeframe. (I wasn't there so this is what my husband heard them saying). I will be calling to find out the results because he forgot to ask how long it would take for results to come back...ugh...Now, if he is negative and if his insurance will pay for both Sovaldi and Olysio, let the treatment begin!!! If not, we are at Plan B and that is Sovaldi with Copegasus and Pegasus. He saw his primary care doc, and has a script for Zoloft and so in case we go to Plan B, we are ready. I can't tell you how many hours I have spent calling his gastro, talking with his nurse, writing emails providing the info on the clin trials to his doctors, and hours and hours reading and researching. The info you all have provided and the support has giving me the strength to carry on. I also just found out my mom has been having issues and is scheduled for a endometrium biopsy. She lives 4 hours away and I want to run to her but have to make sure my hubby is ok here. Please play, I have faith that Someone above is guiding us to what is His will. If my husband did not have that horrific accident, we would never have found out about this a Hep C! So I believe that everything happens for a reason but sometimes it is not easy to see it at that moment. Thank you all and I will keep you posted on our journey.
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Avatar universal
Hi, did you get your test results back for Q80K? My husband is getting tested today.
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Avatar universal
One more thing, is your insurance going to cover this "off-label" combination?
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Avatar universal
Please keep us posted on how it goes! I am now thinking to ask my husband doc about this as well!!!
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