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Hep C Discussion Forum -> On Treatment -> ALL ABOARD THE VOSEVI TRAIN
Post Info TOPIC: ALL ABOARD THE VOSEVI TRAIN
robertsamx


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RE: ALL ABOARD THE VOSEVI TRAIN
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Hi all-  I have 4 left in the first bottle. I do a load test on the 26th, that will be 4 weeks on treatment. I took two pokes to draw blood,It came out so slow that it spent too much time filling one of the tubes and it coagulated, so some of the results were questionable so they called me back to give more blood, so I asked for the gal who only takes one poke an she got the job done. The questionable Results normalize. When you find a good phlebotomist you try to get them every time. I have a good one at home in eastern wa. Going to clinic at 1:30- I will find out hen I can go home.  Im feeling stronger in my head but still get tucked out on walks, so I need to push myself that extra little bit. Easy to say, not so easy to do!!

This is the first time in 37 years I have been hcv&cirrhosis free. Even though I haven't been told Im UND, I know I an right now. Its a freedom I have not felt in so many years, but has been the main focus of my life for years. I can put it all behind me and move forward with my new life.Im so grateful for my new liver, Grateful for VOSEVI, Im starting over with my second chance.Im going to focus on living life to the fullest, enjoying the moment,not living in fear any longer. The future looks bright to me!!    RC



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 M-68, 3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017)   SVR-12. 3-13-18   
Canuck


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Magic! (In that bottle) AND so are anniversaries.

Here's hoping you had a nice gusher at the lab today and only one poke.

Exciting, that second bottle to arrive today! (back up troops, round two), and I'm excited for your Thurs appointment too.

If your Vosevi SOT was Aug 29, then 28 days, your 4 week ends Mon Sep 25?? You get to crack into that new bottle soon!

I love the sound that the "few" remaining pills make, rattling around (loud and powerful-like) in those near-empty bottles, kind reminds me of how, as the bottle empties, how lonely those last few dying virus's must feel, rattling around but with NO PLACE TO GO, with every pill, spelling the end of their days. biggrin C. 

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)
robertsamx


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Thank you all, We had a quiet day, went to Steward Park. Looked out over Lake Washington. The rain was coming down hard at times. It was beautiful. Thanks for the Joe Cocker song. He has always been on my top ten list. Off this morning to give blood for my clinic tomorrow afternoon.  RC&Ragdoll !!

Edit:  Below 

Bottle # TWO  of VOSEVI is coming today!!!  I ordered it Monday. I was able to order it at 21 days into my first bottle of 28.  It comes from Kentucky UPS AIR.  VOSEVI--GOOD STUFF! RC

 



-- Edited by robertsamx on Wednesday 20th of September 2017 10:44:22 AM

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 M-68, 3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017)   SVR-12. 3-13-18   
Lindsmatt52


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C-LOVE that rendition of "You Are So Beautiful" with Joe Cocker AND Eric Clapton.  What a great way to start my day!



__________________

64 y/o female, no idea how HEP C contracted

diag. 6/2017, GT 1a, VL 7.64 mil

Fibrotest-.41 (F1-F2) ; Actitest/Metavir 0.18; Apri: 0.266

Mutations detected: Q30H/Y, H58Q

Alt-33;  Ast-28

4 week:  VL<15; ALT-7 AST-11: 8 week: VL-UND, ALT-9, AST- 9

 Epclusa SOT 8-31-17; EOT 11-22-17

Lindsay
Observer


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Happy anniversary to you and Chris.

Celebrating 30 years together is awesomely wonderful.

You are both so lucky to have each other.

Seattle in the rain is romantic and cinnamon buns are the best!

Alison



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61 y/o, Infected via transfusion Oct'83, GT-1a, F-4 cirrhotic,
tx Holkira pak/moderiba 12 weeks

4 years.... successful dragon slayer 
Canuck


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Happy anniversary.

You two made me think of this song today.  :)

https://www.youtube.com/watch?v=wK6GZSBPSSQ

 

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)
Cinnamon Girl


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Wow, congratulations to you both, RC and Chris... happy anniversary!!party.gif

And many more celebrations ahead, you two deserve all the happiness that comes your way!  heart.gif



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
wmlj1960


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Congrats on 30 years for you two and look out Wilson, 50th here we come (cinnamon roll equipped). Enjoy Chris and Robert!

30th Pearls100.jpg



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60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

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bbomb


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Happy Anniversary!!!  sun.gif Enjoy that cinnamon roll and coffee!! coffeecup.gif 



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55 yo GT1A F1 minimal fibrosis HCV dd 1996 

3/16/17  HCV VIRAL LOG 6.529

6/21/17 started Viekira Pak and Riba 800 mg per day for 12 weeks 

as of 7/19/17 NOT DETECTED....Slaying mode!!! YEESSS!!!!

Miss Brenda
wendyo


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Happy Anniversary RC and Chris. And many more



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Wendy 53 y/o, DX 1994, geno 1A F1

1999 TX 1 - Inter -non responder 2001 TX 2 - Peg + Riba - viral load tripled and taken off

T3:  Harvoni 12 weeks Sept. 19, 2015 ALT 41 AST 30 VL 541800 UND at EOT and SVR 24 ALT 18 AST 26 platelets 223

 
Lindsmatt52


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Happy, Happy Anniversary Robert and Chris!  I think a gooey cinnamon roll is just the thing to celebrate!  Cheers to 30 years and many more!



__________________

64 y/o female, no idea how HEP C contracted

diag. 6/2017, GT 1a, VL 7.64 mil

Fibrotest-.41 (F1-F2) ; Actitest/Metavir 0.18; Apri: 0.266

Mutations detected: Q30H/Y, H58Q

Alt-33;  Ast-28

4 week:  VL<15; ALT-7 AST-11: 8 week: VL-UND, ALT-9, AST- 9

 Epclusa SOT 8-31-17; EOT 11-22-17

Lindsay
robertsamx


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Hi All.   Me and the Ragdoll are celebrating 30 years today.  If you would have told me 30 years ago I would be sitting in Seattle recovering from a liver transplant and on my third R/X to cure Hep C I would have said "what you talking about Wilson"

Now with our new fresh start I am shooting for 50 years!  There have been times in the last couple of years that I diden't think I would make it to 30 years.Those were some low times for us but we held it together and pushed forward.Chris has such a big heart ,she is so loving and carring and did I mention Forgiving-----The key to 30 years is Forgiveness.

It's raining today in Seattle, I think we need to go out this morning and find a place that has big gooey cinnamon rolls and piping hot coffee and just chill.         RC



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 M-68, 3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017)   SVR-12. 3-13-18   
Canuck


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Reports are gettin better all the time RC! biggrin 

I cannot believe it! - the warp-speed time with which all has occurred since you got that momentous phone call - out of ICU in a millisecond, kicked out of the hospital, barely upright in 2 peices!!!, and now they talk about banishing you home already! Sheesh, you haven't even had time to mess up the new place yet! (Tell her to stop cleaning, there will not be time to finish, the way your docs are!). If they insist on kicking your butt out of Seattle, on such and such a date, then find out when IS the next appointment - they will probably just make you drive all the way home, only to ask you to come all the way back in such a short time for more labs and lookie loo-ing, that maybe, you will just elect to stay on for a bit (of your own volition) and keep your apt until the end of the month, or some such thing. True, there is no place like home, but on the other hand ... the frequent-flyer (return) thing may occur the most frequently the first few weeks. Find out when they are going to be demanding your presence again, if they really are going to cut you loose so early - maybe you will just decide to stick around for a wee bit longer and use the time to take in a pleasurable tour, have an outing to some place you always meant to go to but never did, or use up that ample parking, or just settle-in and tally spider-kills for a while. 

Ah, funny, how grateful we can become, when good fortune befalls us, glass half-full kinda stuff, the infra-red crown that can make up for a tiny throne, shared bug extermination duties, and reserved parking.  

Hey, I'll say! ..."anti-everything under the sun" (heehee) so glad they did not accidentally nick your humour - about your "required"-to-swallow FIST-FULS of drugs ... I was jes jokin' bro! ('bout Nancy's "just say no"!), good grief tho, how I wish it did not have to be quite SO many pills! Holy cow that IS a LOT of pills!

I am so glad to hear you say you think you ARE finally starting to feel like you are recovering from the mega-surgery, feeling better (in that way) day by day, is encouraging.  https://www.youtube.com/watch?v=y925oc8bnOs  Thanks for feeding my curiosities about diuretics, lax's, and sleep-aids - the busy-body that I am!

Does that fancy car of yours even have a back seat, or just two rocket chairs in the front? May be no room in the trunk what with that extra suitcase of pills you'll have to drag home. Maybe over the course of the next weeks and months the pill count will start decreasing somewhat, perhaps it will get down to a briefcase size. (For sure there will be at least one less pill soon, that LAST Vosevi pill, and that will be happening before we know it!, just around the corner - and we will be celebrating that day for all we're worth bro. biggrin C.

Here's another one, just because, in cool Seattle, a little sunshine is always nice. https://www.youtube.com/watch?v=SMAkiwuUQLE

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)
robertsamx


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RE: ALL ABOARD THE VOSEVI TRA
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I just take the buffer once a day, in the evening with all the 9 PM. Pills.  I take (3) 5mg prednisone only once a day with the morning 9:am pills.  I think the prednisone is the most harsh on my stomach? 15 pills in all at the 9:am pill fest!   3 other pills between 9 am and noon, then  7 pills at the 9:pm.Chris spent the last few days cleaning house, I mean really a deep cleaning. She worries I might catch a bug, she has been disenfecting every thing in sight.Even the picture frames-really- Speeking of bugs, it's getting cooler outside (Seattle) and the spiders are coming in out of the weather,she is scared to death of spiders!!  I cant really bend over to get em so she has stepped up and taken charge of those little kritters.She gets em with the vacuum (which we had to buy because the one in the appt. was junk) and the easy ones on the wall get a toilet tissue ride to the Pacific Ocean- kinda like a bon voyag!! We may have Only two weeks to go before we get sent home.May find out this week at the clinic on thursday.  Blood draw on Wednesday,clinic on Thursday-maybe home on Friday?? We are just getting Use to this place, it has two bed rooms,nice big front room just off a fairly large full kitchen.The bathroom has a good size vanity, tub shower combo that's clean,but a small round toilet bowlno. I guess the infra red heat lamp in the ceiling makes up for the tiny little toilet. Did I mention we have off street parking?Come to find out parking in big cities is a luxury. Some of these folks half to park 1 to2 blocks from there appt,and cary there grocerys home.We take 9 steps and WOLA we are home. There is a printer here but it needs a cartridge and the printer is a cable connect and how do you connect apple pads and I phones to printers 54 years old? YOU DONT! Im a wi-fi guy! I will explain Drug adjustments in a different block on this thread,it's complicated and I want to get it right.  My liver has been behaving, great LFT's 16&31.v/l under3k.I think it has accepted its new home. 6 weeks in its new home and no rejection going on.Were both a good fit for one another. Im feeling better each day, getting over the surgery that is. I will never know if im having any S/X from the VOSEVI because of all the anti-everything under the sun med's I'm taking. I will say that the first two weeks after the transplant I felt pretty much the same as I do 21 days on VOSEVI. Most people in the VOSEVI trials reported no S/X- CC you could chime in on this!  I believe it was Nancy Reagan who said (Just Say No) to drugs.Wish it were that easy!  RC

 



__________________

 M-68, 3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017)   SVR-12. 3-13-18   
Canuck


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Oh, good report! - but don't stay up too late just to get all these duties done. 

But, could you repeat all that, i couldn't quite make it out, what with all this high-pitched whining squeeling in my ears!

WHAT! NO printer! - what, are you having to actually resort to pen and paper! Very third world.

You must feel like a bit of a refugee, packing your own kitchen sink around, on the move, used to having a home and now it's been a series of temp.quarters. WHAT MAJOR CHANGES (in EVERY possible way) for you and Chris! But all the right things to do and all headed in the right direction. Funny, that the ultimate, in being home-"free", is when you are once back home again! Ya, ya, I am twisted. So, you're out of the hotel and into the new apart now, thought you were just still fixing things up?

Nice the diurectics dose is down by half. Do you take the buffer "a bit" before the rest of the pills that go with the buffer? So, about 10 days ago, you said they reduced your prednisone to 15 mg (once per day?), and you said, now, that you are currently taking 3 pills of prednsione (at least once per day?) so, how many mg per day of prednisone (in total, per day) are you on right now with these 3 pills? Do they just keep constantly keep tweeking the prednsone and the anti-rejection drugs up and down?

Yes, too bad ativan doesn't agree with you - good you know this tho! - wise to avoid it if you have been burnt once. Too bad for some people it is not nice at all, for most it can be sometimes be such a welcomed small blessing.

Some day you WILL be on a more even keel, sleeping and otherwise.

Dif drug reactions for dif folk - my friend went completely off his rocker on gaba once (never again) entered into a deep and brief and exciting midnight delusion - woke up from sleeping only to be forced into a life and death fist fight with his washer and dryer in the middle of the night, at the time, it made perfect sense to him, it was kill or be killed. It was toss up but it looked like the washer won. My Dad waking up from his first (or was it his second) cardiac stent found out he did not do well on morphine, pulling out tubes and beating up on everything around him within reach, my brother trying to calm him and gentley hold and stoke his hands ... my Dad proceeded to grasp my brother hands in a death-lock and try to rip and twist my his fngers off, repeatedly! None of it recalled when the morphine wore off.

Who was it who said - just say no to drugs? They must have meant ... just sometimes. C.

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)
robertsamx


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RE: ALL ABOARD THE VOSEVI TRA
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C--I have never really had a gut issue,so I dont know if its acid reflex.  The discomfort is really low in my gut so I'm thinking its not acid reflux.Its all the meds I take at once.I half to eat a little then take a bunch of pills then eat a little more then more pills  and so on tell the pill box is empty.Chris thinks its the prendazone {spelling.   The morning medicine is a mixture of lots of things. 5 anti-rejection,1 anti-fungal,1-anti-bacterial,1 anti-viral,3 different Antibiotics,1-40 mg water pill,3- prendiazone,and 1 stomach buffer pill.I dont think the buffer is helping? LOL !!   I got spun out on ambien so thats not a option. I do sleep some its just all broken up, my sleep pattern is coming back,just going to take some time.I realize all this is temporary and as the pills get decreased things will get bette all around.The edema has pretty much gone away, just a little moon face from the prentazone. I went from 160mg water pill to 40mg 2X a day, just a maintenance dose. The pain is getting better,the 5mg oxy keeps it  tolerable,I went from 3pills every 3-4 hours to 2 pills every 4 to 6 hours to 1 pill every 4 hours to 1 pill every 5-6 hours.2 when it gets really bad. I had all the heavy drugs in the hospital. They haven't posted my latest LFT's so no news there. I will put together a complete list of all the blood work results at a future date and post them. I dont have a printer here at the Seattle apartment so will get list when we get home. Its 4;15am  now and I have been up for 1.5 hours,this is part of my broken up sleep problem.O ya and the ringing in my ears-will someone please answer that phone!!     TTYL.   RC



__________________

 M-68, 3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017)   SVR-12. 3-13-18   
Canuck


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RE: ALL ABOARD THE VOSEVI TRAIN
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RC,

Oh good, you are "in" today! So, I have a captive audience with you, so i can just prattle on and on! hee hee

Glad you are laying low today - you just simply have to do what the body/common sense and circumstance demands sometimes. Not always a choice nor ways we can figure out how to get around it. The ups and down (as you well know, from the experiences that NONE of us can ever know like you do) of these last years and all the major events you have gone through, have been whirlwind of hope, fear, pulling yourself up from your bootstraps time and time again and overcoming all - proves your golden resilience - YOU will carry YOU through all of this - just as you have been doing. Now, this is not to say all those around you, your dear Chris, your team, your donor and his family, and all your cheerleader team here, have not been wishing/trying/wanting to move heaven and earth for you (if we could, and as we are able), but, it is ALL on you, in the end (I know it can feel lonely, even with all of us around!). This is a HUGE endeavour you have taken on and you will come out the other side (you ARE coming out the other side) with such strength and perseverence. Yes, things will look and feel dif every "other" day, from week to week, next month, and many months from now. More ups and downs, more hurdles will follow, but you will do it and in the same very fine manner you are doing right now! You WILL reach a middle ground, one that is more comfortable - wait for it, strive for it, look forward to it. These drugs, recovery regimes and healings are VERY hardest work.

Everything you have done (and accomplished) has been 10/10 on the degree of difficulty. I DO kinda like your Harvirma name, it attests to the whirlwind of danger, difficulty, tenacities, and then strength, to pick up the pieces and re-buid after the storm. Appropriate.

The vel/vox Polaris stardust thing - the "magic" - we both know - I so relate to your overwhelming feelings of amazement with it. My first UND, only showing 236 of the varmits still standing, absolutely floored me (as you recall), and all the way home that night (and still today) staring up at the twinkling cosmos, the North star "guiding me home" ... truly miraculous. I felt I luckily caught the tail-end of that vel/vox comet just in time before it streaked and passed me by. Indeed - lucky, lucky, lucky we are.

You have had miracles ten-fold to that! I used to call my bottle of magic-stardust-Gilead pills, "big bro" or "best back-up buddy EV-ER" in a bottle! But "buddy" is how I am feeling about your brand new lovely gifted liver, your new liver is really your "best buddy EV-ER" in spirit and in flesh. Your donor has been your best buddy, your new liver is your best buddy, and together you get to own and enjoy this wonderful new loving relationship for the rest of your life. Forever, you get to share this special life-giving love with your best bud's.

I think I'll always think of your liver as "buddy", or bud. Freinds forever. 

What was your answer/feedback on the edema, pedal edema and tweeking of diuretics thing? Still on lax? Which things are aggravating your stomache mucosa and why? Is is like ... acid stomache or what? What were your thoughts about my Ativan suggestion for rare use? If you are on opoid-based/narcotic analgesic or codiene, and have bowel or gut problems with it, maybe switching to methedone might be considered? (Some less constipation with it and may be some easier on stomache) - sometimes pain releif can be very good on it, especially when coupled with something else to attenuate and "potentiate" the methedone. I know Tig would have thoughts on pain control and Lamont is also experience using methedone. I have seen it work amazingly well for severe intractable or slow to resolve/ hard to manage discomfort. 

Keep the hotline open for us on your next LTF's, but sheesh how much lower can they go! What are some of your other bloods - do you get to see them (all of them)? So many they must draw from you - we would be interested in any of them (pre and post). C.

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)
Lindsmatt52


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Awww RC-  I think you have earned the right to whine ANYtime you feel the need and no one here could fault you.  In my opinion and obviously many others, you have shown an amazing amount of strength and courage.  And to top it all off, your sense of humor always pops up to make us all feel better.  "Don't Stop Believin"biggrin



__________________

64 y/o female, no idea how HEP C contracted

diag. 6/2017, GT 1a, VL 7.64 mil

Fibrotest-.41 (F1-F2) ; Actitest/Metavir 0.18; Apri: 0.266

Mutations detected: Q30H/Y, H58Q

Alt-33;  Ast-28

4 week:  VL<15; ALT-7 AST-11: 8 week: VL-UND, ALT-9, AST- 9

 Epclusa SOT 8-31-17; EOT 11-22-17

Lindsay
robertsamx


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Thanks C thanks 52    C- I really like the star dust pic you put up. Thats how I imagined your trip through the POLARIS COSMOS looked. Can you beleave it, I got kicked off of the Polaris 4 and now im on the same drug that was in the P-4 trial!!   I think I mentioned someware that I was calling my treatment the POLARIS 5. I even got my Dr. Calling it P-5.  We'll'  always look at the North Star  just a little differently Than everyone else. 

Seens like every other day the meds I take tear up my stomach, just after I eat I get a really upset gut ache , it puts me down.  Today is one of those days, I'm laying low today-I walked a lot  yesterday so my upper legs are sore . The incision is pretty tender but its healing up nicely. See I told you- every other day I turn into a whiner, What am I complaining about? I got a liver and a second chance- You guys have my permission to slap me around when I get whiney. I'm grateful to be where I am today. They tell me things get better,meds fall off the list, I get use to the anti-rejection meds. I just need to give it some time-there talking 6 months or so.  Nothing else new to report, I waiting for the LFT's that they just drew. (yesterday)..later RC

 

 

 



__________________

 M-68, 3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017)   SVR-12. 3-13-18   
Lindsmatt52


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WOO HOO!!!!  That is absolutely awesome RC!!!!  What inspiring news!  You are crushing it!  



__________________

64 y/o female, no idea how HEP C contracted

diag. 6/2017, GT 1a, VL 7.64 mil

Fibrotest-.41 (F1-F2) ; Actitest/Metavir 0.18; Apri: 0.266

Mutations detected: Q30H/Y, H58Q

Alt-33;  Ast-28

4 week:  VL<15; ALT-7 AST-11: 8 week: VL-UND, ALT-9, AST- 9

 Epclusa SOT 8-31-17; EOT 11-22-17

Lindsay
Canuck


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Image result for omg balloon

o   o

 

 

0

 

 

It's that magic Polaris stardust! 

You're doing it!!! Hoo-ray, hoo-ray, hoo-ray!

It's workin', workin' workin'!!!

Image result for magic stardust



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)
robertsamx


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Hi all-  I just got the HCV RNA QT.     2580.  Two thousand five hundred eighty

My load went from over one hundred million to 2580 in 14 days, that's just 14 VOSEVI down the hatch! And 10 weeks to go.. Should have new LFT's results from today's blood draw tomorrow or Friday. Will post them when I get them. It's working folks,It'sworking!

I'm killing the Dragon this time. This VOSEVI Triple DAA is getting it done!   WOW!!!!    RC



__________________

 M-68, 3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017)   SVR-12. 3-13-18   
bbomb


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How bout "Optimus Prime"? Who doesn't love the ultimate transformer that can kick a$$??? And your new transformed liver is doing just that! and winning!!! High Five RC!



__________________

55 yo GT1A F1 minimal fibrosis HCV dd 1996 

3/16/17  HCV VIRAL LOG 6.529

6/21/17 started Viekira Pak and Riba 800 mg per day for 12 weeks 

as of 7/19/17 NOT DETECTED....Slaying mode!!! YEESSS!!!!

Miss Brenda
Canuck


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They are beauties RC.  :)



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)
robertsamx


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Hi all. Blame the LFT number mix up on Dyslexia or Pain pills.Take your pick!!

AST-16  ALT-31        RC



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 M-68, 3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017)   SVR-12. 3-13-18   
Canuck


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RC, I love your numbers (anywhichway!!!), but yesterday you posted ... 

 

... Hi all. Had clinic today (Tuesday) and things went real good. I had my Zipper removed (staples) all 68 of them! Ahhhhhhhh now That feels good.Had them in for 30 days, I asked them last week to please-leave them in for 1 more week, I diden't want to split or tear the incision.But there out now and it feels good!Its healing up fine, just 1/2 inch area that is oozing a little,its clean no infection- all is good!! They adjusted my meds a little.And last but not least my LFT's results after just 14 days on VOSEVI ...     

 

AST--16

ALT--31                                                         RC

 

Then, today you wrote (about those same tests), and posted this as well ...

 

... Thanks everyone! It feels good to have the staples out. One little spot is fighting back but its exposed and looking better this morning.  Wasent it nice to hear from TIG- Glade he's ok. More blood work tomorrow.I can call in tomorrow afternoon and get the results.I want to see the AST drop even more!!   The VOSEVI train is turning out to be quite a nice ride, with all the RX's I'm on I thought I wouldent be spending much time in the dining car- Definitely not the case, They know me by my first name in there because of all the time I'm spending eating.The chef is the best!!My sleeping bunk is in the sleeping car, I'm the first on the right- Sleep number bed- Turns out my sleep number is 45!!I got to get me one of these.I'm hunkered down for a 12 week ride,and the first two weeks have been smooth trainin. LFT's alt-16 AST-31. It's a smooth ride so far!! There is plenty of room on this train,and we most likely will make a few stops along the way to pick up more travelers!  Glade to see that TIG is ok. Tig mentioned I name my new liver, he suggested Harvey or Irma ?I'm thinking about mixing the two up and seeing what comes out of it!  Something like HARVIRMA ??  Sounds like a DAA treatment drug??  You all chime in on your thoughts about a name.   RC ...

 

Soooo, which is it?? I am confused, but VERY happy for these kind of numbers for you, no matter which is the ALT and which is the AST!!

Couldn't help but smile that you said you wished for a lower AST! If indeed the AST was previously 19 and the most recent decrease was now down to 16 (!) .... uh, how much lower would you like to see that AST go! Looks mighty dang fine to me. You have already broken so many records RC, I expect we will keep seeing you doing so, I hope I am still on this earth to relish in celebrating your 10, 20, 30 and 40 year SVR's!

We are all looking forward to seeing some of those mind-numbing, tongue-tying, heart-thumping, soul-riveting, hope-renewing, tear and joy-evoking, so-deserved drastic VL drops soon! We are going to need some mighty drum-rolling here, for each of your upcoming VL announcements! 

So happy for you RC, like magic, it's working C.

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)
wendyo


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Big bro always the voice of reason. (wasn't always that way)



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Wendy 53 y/o, DX 1994, geno 1A F1

1999 TX 1 - Inter -non responder 2001 TX 2 - Peg + Riba - viral load tripled and taken off

T3:  Harvoni 12 weeks Sept. 19, 2015 ALT 41 AST 30 VL 541800 UND at EOT and SVR 24 ALT 18 AST 26 platelets 223

 
JimmyK


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A name for the liver.

Well the storms were destructive so in that this liver is actually giving life instead of taking it no storm names would be proper.

If I were to choose, ...... "God Send" has a good ring to it. wink

 

JimmyK



__________________

Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."
Lindsmatt52


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Way to go RC!  You are doing a bang-up job with that new liver!  I like HARVIRMA! It does sound like a new drug.  Maybe you should add a personal touch to it too since it's your new liver!biggrin



__________________

64 y/o female, no idea how HEP C contracted

diag. 6/2017, GT 1a, VL 7.64 mil

Fibrotest-.41 (F1-F2) ; Actitest/Metavir 0.18; Apri: 0.266

Mutations detected: Q30H/Y, H58Q

Alt-33;  Ast-28

4 week:  VL<15; ALT-7 AST-11: 8 week: VL-UND, ALT-9, AST- 9

 Epclusa SOT 8-31-17; EOT 11-22-17

Lindsay
polosilver


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Stellar results RC!! You are an amazing healer!! Keep on kickin' that dragons A$$!



__________________

 

New: Hepatomegaly 07/30/2019, AST 29 & ALT 15

Female,1a,F2 mod fibrosis,HCV 06/2017,SOT 08/04/2017, Harvoni

HCV VL 414,000, AST 54, ALT 74.  4 weeks AST 34 and ALT 31, SVR, Jan 2018. 

12 week EOT, AST 20 & ALT 23 and still VL UND.

Club Zero Member.

 
wendyo


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A sleep number bed and a chef! Who'd a thunk?

You are right RC, Harvirma sounds like a new DAA. What about Irmvy? I bet Jimmy come sup with a doosie. 



__________________

Wendy 53 y/o, DX 1994, geno 1A F1

1999 TX 1 - Inter -non responder 2001 TX 2 - Peg + Riba - viral load tripled and taken off

T3:  Harvoni 12 weeks Sept. 19, 2015 ALT 41 AST 30 VL 541800 UND at EOT and SVR 24 ALT 18 AST 26 platelets 223

 
robertsamx


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Thanks everyone! It feels good to have the staples out. One little spot is fighting back but its exposed and looking better this morning.  Wasent it nice to hear from TIG- Glade he's ok. More blood work tomorrow.I can call in tomorrow afternoon and get the results.I want to see the AST drop even more!!   The VOSEVI train is turning out to be quite a nice ride, with all the RX's I'm on I thought I wouldent be spending much time in the dining car- Definitely not the case, They know me by my first name in there because of all the time I'm spending eating.The chef is the best!!My sleeping bunk is in the sleeping car, I'm the first on the right- Sleep number bed- Turns out my sleep number is 45!!I got to get me one of these.I'm hunkered down for a 12 week ride,and the first two weeks have been smooth trainin. LFT's alt-16 AST-31. It's a smooth ride so far!! There is plenty of room on this train,and we most likely will make a few stops along the way to pick up more travelers!  Glade to see that TIG is ok. Tig mentioned I name my new liver, he suggested Harvey or Irma ?I'm thinking about mixing the two up and seeing what comes out of it!  Something like HARVIRMA ??  Sounds like a DAA treatment drug??  You all chime in on your thoughts about a name.   RC



__________________

 M-68, 3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017)   SVR-12. 3-13-18   
Lindsmatt52


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HURRAY RC!!  Wonderful news to wake up to!  Congrats!!!



__________________

64 y/o female, no idea how HEP C contracted

diag. 6/2017, GT 1a, VL 7.64 mil

Fibrotest-.41 (F1-F2) ; Actitest/Metavir 0.18; Apri: 0.266

Mutations detected: Q30H/Y, H58Q

Alt-33;  Ast-28

4 week:  VL<15; ALT-7 AST-11: 8 week: VL-UND, ALT-9, AST- 9

 Epclusa SOT 8-31-17; EOT 11-22-17

Lindsay
wendyo


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Holy cow RC that is amazing! And zipperless So happy for this news. 



__________________

Wendy 53 y/o, DX 1994, geno 1A F1

1999 TX 1 - Inter -non responder 2001 TX 2 - Peg + Riba - viral load tripled and taken off

T3:  Harvoni 12 weeks Sept. 19, 2015 ALT 41 AST 30 VL 541800 UND at EOT and SVR 24 ALT 18 AST 26 platelets 223

 
Cinnamon Girl


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Wow, RC!!! 

Look at those beautiful LFTs after just 2 weeks, that`s what we like to see!

Sounds like you`re doing great and healing up nicely, keep up the good work!!  smile



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
Observer


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EXCELLENT news RC.  68 staples? man oh man I hope you got photos of that.

And very very wonderful looking LFT's. Yay

 

Alison



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61 y/o, Infected via transfusion Oct'83, GT-1a, F-4 cirrhotic,
tx Holkira pak/moderiba 12 weeks

4 years.... successful dragon slayer 
Canuck


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WOW, WOW, WOW RC!!!!!!!!

Talk about going 0 to 60, in reverse!

Man oh man, beauty ALT's keep happening, so fast too, just what we like  biggrin ... from last 160 down to 31! HO-LI-COW! And a lovely little AST to go right along with it, AST 19 to 16 now! What a far cry from where you started. Im-press-ive!

Man THAT has to feel very, very good! - as well as those staples out - good grief, 68 staples, you'd think NO one could bust out of that! 

I agree "ahhhhh that's better" (for the ALT) and another "ahhhhh that's better!" (for the staple freedom).

Yer rollin', rollin', rollin' RC. Oh how I love Gilead. C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)
robertsamx


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Hi all. Had clinic today (Tuesday) and things went real good. I had my Zipper removed (staples) all 68 of them! Ahhhhhhhh now That feels good.Had them in for 30 days, I asked them last week to please-leave them in for 1 more week, I diden't want to split or tear the incision.But there out now and it feels good!Its healing up fine, just 1/2 inch area that is oozing a little,its clean no infection- all is good!! They adjusted my meds a little.And last but not least my LFT's results after just 14 days on VOSEVI     

 

AST--16

ALT--31                                                         RC



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 M-68, 3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017)   SVR-12. 3-13-18   
robertsamx


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Yesterday was day 14 0n VOSEVI.    This afternoon I have a blood draw to get a VL done.

I also have clinic- so i will get the LFT's from yesterdays blood draw. Yesterday was day 14,I want to be UND. I will post the numbers tonite.  RC



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 M-68, 3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017)   SVR-12. 3-13-18   
robertsamx


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As I'm just sitting around recovering from my L/T (30) days ago now, I have had plenty of time to surf this forum,Look back on some of the early Dragon Slayer's and there battles. You early dragon slayer's fought so hard, went through so much- The drugs used just  a few years ago were harsh,and the S/X were worst than the virus sometimes. We get knocked down and we get back up again with even more determination to kill the beast! We fight fight fight to the end.We won't let go,its not in our nature,we are warriors,we don't quit,we will be victorious. We truley are the champions . I'm proud to be amounst warriors like you!  RC

 

https://youtu.be/04854XqcfCY



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 M-68, 3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017)   SVR-12. 3-13-18   
Canuck


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Oh my RC! THAT is quite a suitcase of pills you have there in that photo! Unreal. But very real. I can't help but think of the "village" that helped to pack that suitcase, and our one brave guy who is "unpacking it". From the scientists/researchers and docs on your team (for years, no for decades!) who helped you well-pack it with most brilliant life saving things they could dream of, to the rest of us who can only wish from the sidelines to make your journey easier, all of us are the well meaning village who wants to support you to the best of our abilities. 

Man, isn't modern medicine and science grand!

Never, EVER did I think they could bottle "hope", but they have! Gilead, in the OR, and that donor and family - all miracles. 

Brother, the pill count is astounding, I bet your laxatives or other OTC things aren't even in those Mon thru Sun boxes! So, "is it tinnitus ... or just your phone alarm" that you keep hearing. Memorex moments.

Hey - here I was, thinking it was my lowly suggestion for a benign glycerine sup that finally helped (in the end) when you were so bunged up, I see you had some other "I'm not foolin around" therapy to get ya sorted. Hope things are naturally regular now?

How's the diuretic/water retention thing going now?

Sure glad to hear you got a couple more z's the other night, I wish I could give you mine, I would if I could.  Ever tried a miniscule dose of SL Ativan in an emergency like, once in a blue moon, when you have hit the sleep-deprivation wall?

Really appreciate it, that you keep us so well posted, and impressed no end with your performance (on every level)!, and that you insist on taking care of us as well!

You are number one at the moment. Hope you (both of you) are having a good-sleep kind of night tonight. C.

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)
Tig


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I'm anxious to hear the next results, too. I expect good news, I feel it! The LFT's are improving, that's an excellent sign! Keep it up but keep it nice and slow!  



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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robertsamx


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I did a long walk today. .6 miles or four long blocks. I'm taking it easy today-not rushing anything. Last night I slept pretty good- about 6.5 hours a little broken up. Felt more refreshed today.  I got a message from my Hep Dr.-They want to do a two wheek viral load. (14 days) into treatment. Im Having it Wednesday. Can't wait to get those results. I'm waiting for results from a blood draw on Sunday I want to see how the LFT's are doing.That test will show how its going just 6 days into treatment. I'm hoping they are both really low- That would be a awesome sign.   We will see.RC

 Edit: Below are last Sunday's LFT's     These are the latest results. That 19 looks good!!

Edit:   ast 19.    Alt 160.  



-- Edited by robertsamx on Friday 8th of September 2017 07:40:37 PM



-- Edited by robertsamx on Friday 8th of September 2017 09:20:02 PM

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 M-68, 3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017)   SVR-12. 3-13-18   
robertsamx


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I'm 10 days into my Polaris 5 trial.  I can't beleave is already been ten days. I'm on so many drugs I coulden't tell you if I were having any S/X from the VOSEVI   My phone alarm is going off all day long Reminding me to medicate . Not sleeping very well.Each day As the incision heals and the abdomen muscles heal and grow back together things get/feel bette. I can't roll on my side yet, way too painful. Try sleeping in one position all night!  I'm not complaining.You just would have thought this Vosevi train would have had a sleeping car!!

Check out the daily pill box   Check out the bottle of VOSEVI        RC

 



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Observer


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Yay yay yay! I'm so happy for you RC.  Those numbers are pretty darn awesome five days in. Wonder drug that Vosevi! You are kicking that dragon butt and protecting your new treasure. Cant wait to see that 4 week draw.

 

Alison 



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61 y/o, Infected via transfusion Oct'83, GT-1a, F-4 cirrhotic,
tx Holkira pak/moderiba 12 weeks

4 years.... successful dragon slayer 
boxers


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So happy for you RC...know it is a rough road but just so you know, you are giving everyone hope in this struggle. Happy to hear about your progress.

 



__________________

65 yo female

dx. 1996

TX with interferon/riba 2001..failed

Uncompromised 2015

TX with Harvoni  2015..virus undet.

Meld 14 7/2017  TIPS 1/2017

 

TP 5/12/18 
polosilver


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Congratulations RC!!  You are kicking that dragon in the a$$ and sending it home, awesome! WTG!



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New: Hepatomegaly 07/30/2019, AST 29 & ALT 15

Female,1a,F2 mod fibrosis,HCV 06/2017,SOT 08/04/2017, Harvoni

HCV VL 414,000, AST 54, ALT 74.  4 weeks AST 34 and ALT 31, SVR, Jan 2018. 

12 week EOT, AST 20 & ALT 23 and still VL UND.

Club Zero Member.

 
Canuck


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Yay RC!

More than halved!!! your ALT, and the bottom just dropped out of that AST, in one fell swoop? In just 5 days, wow, just imagine! I agree with Tig they should put sparkles on those drab coloured pills! Their Kent Clarke beige-i-ness belies their magical powers.

So your SOT Aug 29, makes your your week 4 on Sept 26? So, no PCR's until next week? (the end of week 2 maybe)? Oh we can't wait to see the demise of this foul virus which has wreaked such havoc for you - it is happening as we speak thank goodness! All of us are spellbound with your good fortune RC.

What an incredible endeavour you have been going through, none of us could begin to imagine all that you are and have been subjected to, nor the new opportunities you have gained. Tough as nails you and your lady are.

How is the new "housey" set-up going, I hope the excertions are only slow and steady, on purpose.

Good some staples are out, ya on insurance steri-strips! Good your evil tasting liq drug has now morphed to a pill. Big and small blessings, we cherish everyone of them that makes anything easier for you RC. So, the phenomenal daily pill count, being what ... 24 doses of this and that, must be a daunting timetable task to swallow! I am estactic to hear they are dropping your prednisone dose, as that is one of the drugs you indicated you could "feel". Amidst all the accoutrements and mixed "bag" of pills you must take, can you even discern what dif the vosevi feels like - very well could be hard to tell!

So, how have you been handling your required water consumption and how's the bowel regularity now. Are you nice and regular now? You mentioned some pedal edema, and some abd. distention, are those things and regularity becoming more copasetic now? And I wonder how you have been fairing with your blood sugars, all in all, being that you were having some troubles with your food intake and fluctuating appetite.

So, little miss-but-in-ski, worries a lot about healing/restorative sleep. This "half and half" up and down sleep thing you have tended to do for so long ... have you (or would you and your docs) EVER consider adding yet another "occasional" (rare-like) pill. Maybe strictly on a "I can't function on one more night like this of insufficient sleep", maybe just one "odd" dose , just an emergency ration, on something teeny-tiny, like .5 mg of Ativan SL to coax you back to sleep during one of these mid-night awakenings?

Here you are, with your very brave and gutsy demeanor, making us feel better about all you have had to go through - a real bro and hero to us. 

You're doing it!, you are finally getting better! C.

 

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)
Tig


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Absolutely the best news I've had all day, RC! Yes Sir, that's fantastic stuff! I'm doing a happy dance for you Brother, YEEHAAAA!!!!!!!!!

109.jpg



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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wendyo


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AST 19 that is amazing! Very happy to read the latest RC. 



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Wendy 53 y/o, DX 1994, geno 1A F1

1999 TX 1 - Inter -non responder 2001 TX 2 - Peg + Riba - viral load tripled and taken off

T3:  Harvoni 12 weeks Sept. 19, 2015 ALT 41 AST 30 VL 541800 UND at EOT and SVR 24 ALT 18 AST 26 platelets 223

 
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