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Post Info TOPIC: Epcluser's Corner
Tig


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Congratulations Jen!! That's a beautiful thing. It's a clear indication of the treatment's effectiveness. It should stay undetected from now on. It's very important to stay compliant and hydrated. How have you been feeling? When will you test again? Questions, questions, lol!

Thanks for the update! smile



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Tig

67yo 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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A Big congratulations to you Sanuk! Awesome news.  clap.gif   



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Start the happy dancing with me!  I am now UNDETECTED!  Yup that's right 4 weeks of Epclusa and I'm undetected.

Viral Load

9/21/2016 6.9 log IU/mL

12/7/2016  < 1.2 log IU/mL

All other blood tests have been normal!  Woohoooooo!

Jen

 



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GT 2b;

Oct 2016 F0/1; TX 12 week Epclusa; UND at SOT +4

 



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Sorry you are feeling yucky Razor. Do check with the doc! I don't have any VL's planned for another 11 1/2 weeks. They won't do one until 12 weeks EOT. That's ok, I know it's gone!

Never too cold for ice cream Tig! Yep, it's pretty cold here. At the start of a nice little snow storm. Expecting about 8 inches or so. Good day to stay inside tomorrow!



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Tig


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Hey RB,

Sorry to hear about the abdominal discomfort. It's not uncommon to have some discomfort as things start adjusting to SVR. If things get too uncomfortable, call your doctor. No need to feel badly.

I had some discomfort for months. It did improve but it seems like forever when you're the one waiting for something to happen! Don't get discouraged.

Enjoy your time in the mountains. Don't push it too hard though!



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Tig

67yo 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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Tig


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Our Sister, Canuck of the North, is really a gifted writer! We're fortunate to have her on our team and part of the family. I think it's time I sent her a gift card for Dairy Queen. It isn't too cold for ice cream is it? Looks mighty cold compared to my temps! Stay warm you cold weather people. smile



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Tig

67yo 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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Quick check in. Congrats Pheonix and Ruby upon completion, are u having VL's done ?

My discomfort has increased to quite severe at times, with sharp stabbing pains and now foggy headaches, i hope your right Pablito.

I am up in the mountains for a few weeks finishing off my retirement home,  but will head for the City when have time to do some simple LFT's.

Bye for now.



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Geno 3. TX fail 2010

7/9/16 generic Epclusa. vl 1,730,000. ast 93,alt 81.alp 43.

23/9 ast 37 alt 33. 

29/9 ast 35 alt 31.

10/10 vl undetected,ast 49 alt 48 ggt 72 wbc 3700 

22/10 ast 38 alt 22. VL undetected down to below 12 IU/ml.

15/11 AST 38 ALT 23 GGT 40

24/10 AST 31 ALT 26 GGT 44 

 

 



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Thanks Canuck! I do wish that I could of had more VL tests. It would of been nice to see a big fat zero next to my name. But I know its gone, so jut have to wait out the next 11 weeks or so. More waiting....  biggrin   That's ok though. I have been so busy that I haven't haven't had time to think about it.

I think my hep c doc is just planning on doing the VL at 12 weeks. I have an upcoming physical with my regular doctor, so I will ask her to run those other labs as well. Yes, those WERE my numbers. The VL was over 22 million. Crazy high!  omfg.gif   Not anymore though. Not sure about the fibroscan either. Will have to ask about that. 

Cracking me up about the past couple of weeks! Still cracks me up.

Yeah, 36 of my 56 years. Long time to feel the effects of hep c. I do feel sooo much better now. The brain fog is starting to improve and my body feels better too. It feels awesome to have this virus out !!!  The only thing is that the roof of my mouth is sore. I have had this before, so not sure if its related to anything or not. Gargling with hydrogen peroxide helps. 

36 is becoming my new favorite number!

Got to get going, have to fight with not only Christmas shoppers, but there is about 10 inches of snow heading our way. First one of the year. sprint.gif

Thanks for the support. You know how to make people fell better!



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Hey Phoenix,

So glad you are finished, and so glad you were one of the lucky ones to get epclusa. Really good! You have been a very brave trooper indeed. You deserved very molecule of this good cure.

My only lament for you has been the lack of feedback in the number of VL's that were offered to you, you did have the "telling" deadly "crash" of your VL at week 4, and that tells it all, spells it all - (that that dragon life was "over"/DONE, long ago", it never stood a chance), but, it would have been nice for you to see that ZERO (that probably happened the next day)!! Even tho we already know you are in the elite ZERO club, we will all get to revel in seeing your zero glory at EOT+12.

You don't have a sig. line, but you did say (your prior SOT numbers were) ... fibroscan kPa 10, that you had high VL, your LFT's were ALT 68, AST 48? Wonder why he did not even give you LFT's again with your 4 week VL draw! It's just nice to see them when they drop too! Oh, well, he, like all of us cured epclusians know it's a done deal now anyway, and we will likely get to know where your LFT's are at with your upcoming EOT+12 week draw.

Did your doc say you will get further LFT's, a EOT+24 week VL, and another future fibroscan?

You have taught many good lessons here, not only in bravery and patience and hope, but in the importance of always trying to have a water cop around (should you be so lucky to have one of those) as then, one will not be tempted to get to know the putrid taste of melting epclusa in your throat by trying to dry-swallow them. (hee hee - sorry, couldn't resist). And wasn't it you who also gave us hope that trying to open your house door with your car fob was just a temporary thing too? 

Hey, did you say (at one time) you thought you might have been packing the hepc for 36 years?? Or, did i read that wrong? Anywho, it just would have been a nice weird "number" coincidence if so, that your first draw also showed the number 36 (a mere 36 dying remnants), and, that 36 was also the number of seconds it probably took to vapourize those! 

I am really looking forward to seeing some of your symptoms improve now, and I am betting, strongly, THEY WILL! biggrin C.

 



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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)



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You got that right Ruby!

Thanks Pablo. It will be very interesting how my body reacts post treatment. If I do get pains, I won't worry. Well.... maybe a little.  biggrin



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Congrats on EOT.  Just one thing to watch for: some people (like me) get liver pains after treatment.  About 4 weeks after treatment I got real bad pains and I'd convinced myself I'd relapse, which of course I had't.  Not saying it is going to happen but if it does don't sweat it.

Pablo



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44 y.o. male, HCV G4 since 1996, F-scan score 9, F2, Failed prior I/R, finished sof/vel/vox 8 weeks 5/16, pre-treatment VL 2 million, EOT UND, EOT+4 UND, EOT+12 UND.



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Yeah!! You did it Girlhandshake.gif   The next 12 weeks will fly by just like the last 12 smile  We'll be claiming our SVR status at the same time WHOOHOO!!

 

flowerpot.gifRuby



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GT2 Diagnosed in 2007 vl 1.88E+1;

2010 vl 9.15E+5 Peg/Riba 2010 24wks: replicated

2014 vl 4.22E+6

2015-03-05 vl 1.53E+6

2016 Fibroscan F4 22.0

Waiting treatment/ On treatment: 14/09/16 Epclusa

10/06/16Fibroscan F4 22.0

Aug/16 ALT 72/ AST 50

On treatment; Epclusa: 4 week VL results: UNDETECTED  (ALT:26)

 



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My first day EOT! clap.gif  I am feeling pretty good. Both body and mind are feeling so much better. It will be interesting to see how I feel in a few weeks when the Epclusa leaves my system. My how time flies...... I won't have any blood work for another 12 weeks. The waiting game continues. 

The support of everyone here continues to be awesome. Thank you to all!   number1.gif



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Hey Razor,

Good goin'! 

All the labs, all the way they should be looking (right from the start!!). This will only be re-enforced with every lab you have, from now on.

I hear your trepidation, it is to be expected, but LISTEN to what you already know inside, what your head is telling and showing you.

Alt good, ast good, vl good, even that GGT good, and just about from day one too! You've waged the war and won!

YOU KNOW how ineffective that drug regime was 6 years ago and what it's running rate was for cure - no wonder this regime has worked SO stellar for you (AND will continue to do so)!

You got yourself the right stuff this time, and it has worked, and you got it beat now.

I have a feeling you are right, about influences of diet, (and anything else that your body may not quite be ready for) from copious meals to too spicy ones that can make your complete regain to health bumpy. I do hope you are still doing your very best to to coddle yourself with the greatest care and gentleness, on all fronts, that you know how to do. You have been through a VERY long stressful time, you still need time, after EOT to start your re-couping, in all ways. You will. 

I am so pleased for you, and proud of you, for making this epclusa cure happen. You are an inspiration for many others who deserve the best drug regimes available to them. 

Long live you and sof/vel!! biggrin C.

 



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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)



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Razor Congrats on your results!!!   I'm so very happy for you, just let the knowledge of being HepC free settle in  peace.gif  It must be such a relief after such a battle to obtain the cure!!

You'll see those sweet letters  SVR!!!

Ruby



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GT2 Diagnosed in 2007 vl 1.88E+1;

2010 vl 9.15E+5 Peg/Riba 2010 24wks: replicated

2014 vl 4.22E+6

2015-03-05 vl 1.53E+6

2016 Fibroscan F4 22.0

Waiting treatment/ On treatment: 14/09/16 Epclusa

10/06/16Fibroscan F4 22.0

Aug/16 ALT 72/ AST 50

On treatment; Epclusa: 4 week VL results: UNDETECTED  (ALT:26)

 



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It won't be long now Ruby! clap.gif

Congrats Razor on your und status! Sorry that you are not feeling that well." This to shall pass."  What my Mom says when things aren't  going well. I have found it to be true. Hang in there!



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Hi Ian,

Congratulations on the undetected!! BIG WOOT! I expected nothing less...

As you finish these treatments, your body begins to clear the medication and things start to recover. There have been changes taking place, reduction in inflammation and decimation of that virus. Give yourself some time to adjust to your new Hep free status and you'll begin to witness the positive changes that your SVR will deliver! 

Watch out for the Curry, lol!



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Tig

67yo 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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just had VL, undetected as far as the test goes <12 IU/ml. Been here before (dont want to sound negative), just hope this time i can achieve SVR. Maybe the discomfort i am experiencing is the copious amount of Indian food i have eaten this week biggrin.



__________________

Geno 3. TX fail 2010

7/9/16 generic Epclusa. vl 1,730,000. ast 93,alt 81.alp 43.

23/9 ast 37 alt 33. 

29/9 ast 35 alt 31.

10/10 vl undetected,ast 49 alt 48 ggt 72 wbc 3700 

22/10 ast 38 alt 22. VL undetected down to below 12 IU/ml.

15/11 AST 38 ALT 23 GGT 40

24/10 AST 31 ALT 26 GGT 44 

 

 



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Razor,

You have worry-itis!! It is a serious and uncomfortable inflammation (of the mind) that smites people at the most in-opportune times - a well-known malady, commonly befalling people just after they have emptied their last pills from their treatment bottles and are now "on their own", and while they are waiting for, and just before they get, their next und!

Take one undetected and call me in the morning!!

That will be the remedy!

I do NOT make light of how you are feeling (at all) I am just trying to use my warped humour to get your attention to the most likely thing that is happening that is undermining your confidence.

Those who have had disappointment before are doubly primed for apprehensions.

You have traveled a long road (and with all your "objective" experience under your belt) I think you already KNOW you have "made it" this time. Try not to let this brief wait shake you. You will feel better, in no time, as soon as you get the und!

Fatigue, or RQ discomfort may linger for some time yet, but the unds, your crashed alts/ast's tell all.

I'm sorry you have to be feeling RQ discomfort and fatigue right now - it is unfortunate timing.

Wait for it, (your und results) that will help make you feel better and cope with the things you are having to put up with, and we will all be celebrating with you, over your und, right shortly! 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)



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3 days without pills and now incredibly tired.....also increased pain from liver region!!!. Hope to get VL result today as see Doc.tomorrow.



__________________

Geno 3. TX fail 2010

7/9/16 generic Epclusa. vl 1,730,000. ast 93,alt 81.alp 43.

23/9 ast 37 alt 33. 

29/9 ast 35 alt 31.

10/10 vl undetected,ast 49 alt 48 ggt 72 wbc 3700 

22/10 ast 38 alt 22. VL undetected down to below 12 IU/ml.

15/11 AST 38 ALT 23 GGT 40

24/10 AST 31 ALT 26 GGT 44 

 

 



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Phoenix congrats...one more week.  Sorry to hear you haven't been feeling up to par.  Sinus infections can be nasty :(  Hope you're on the upswingflowerpot.gif

Congrats Razor you're finished!number1.gif   Phoenic that will be us next week, it amazes me how quick the time past.

It will be so exciting to be posting all our EOT results within days of each other nod.gif

Ruby

 



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GT2 Diagnosed in 2007 vl 1.88E+1;

2010 vl 9.15E+5 Peg/Riba 2010 24wks: replicated

2014 vl 4.22E+6

2015-03-05 vl 1.53E+6

2016 Fibroscan F4 22.0

Waiting treatment/ On treatment: 14/09/16 Epclusa

10/06/16Fibroscan F4 22.0

Aug/16 ALT 72/ AST 50

On treatment; Epclusa: 4 week VL results: UNDETECTED  (ALT:26)

 



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Oh yes Tig, a Florida vacations sounds like just what the dr ordered!  We do get a lot of fog this time of year, especially since we live very close to lake Michigan. Actually, the cold weather helps me to feel more alert. When it gets hot and muggy,that's when I get tired.Go figure. I have always wanted to live in a warm weather climate. Maybe I will be a snowbird. biggrin Live somewhere warm in the winter. Maybe someday..... By the way, my dancing shoes are ready to go!

Hi JimmyK!



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What an incredibly great thread. wink



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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."

Tig


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There's alot happening here! I'm so pleased, knowing you've one week left Liz. Doesn't seem like you could be this close yet. These shortened treatment times are the best! I'm sure you're excited to reach EOT and SVR12 soon after. I hope you bought polish for your dancing shoes!

I'm paying attention to the fact that both of you have mentioned brain fog. I think that is one thing all HCV patients are familiar with. I'm convinced I'm still affected by it. Could be age catching up to me too! I wanted to ask, since both of you live in the COLD North, could the fog you speak of actually be fog? Could be the cold has caused "sluggish brain syndrome". The cure for that is a Florida vacation! How's that for a prescription? Ha, ha!!smile

RB, thanks buddy! You stay in touch, too. We like to hear how things progress. Good luck...

 



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Tig

67yo 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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Canuck, The way you described brain fog as looking thru dull glass was perfect. That's exactly how it feels, or should I say felt. biggrin  "Feeling more" is right on too. I couldn't of said it better myself!

OK, Ok, I will blame everything on hvc!



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Thanks for all of your support, and good luck to those of you on the last lap......



__________________

Geno 3. TX fail 2010

7/9/16 generic Epclusa. vl 1,730,000. ast 93,alt 81.alp 43.

23/9 ast 37 alt 33. 

29/9 ast 35 alt 31.

10/10 vl undetected,ast 49 alt 48 ggt 72 wbc 3700 

22/10 ast 38 alt 22. VL undetected down to below 12 IU/ml.

15/11 AST 38 ALT 23 GGT 40

24/10 AST 31 ALT 26 GGT 44 

 

 



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Your daughter DOES sound perfect, lucky you, to have such a support, AND your very own good private water cop too! It does make SUCH a dif, to have a good supporter. We are grateful for the little and the BIG things that come to us. (But I'll take a leap here and suggest that you were already well enamoured of her since before she even came to you as that little bit of a thing! hee hee) Now ... if she could just drive, man, she'd be the hottest thing going on the market! But don't tell her that! - it goes straight to their heads!

MY water boy drives! Actually ... he wasn't so great at water, but everything else (and I mean everything else!) from being a human timepiece, calendar, my memory bank, chauffeur, psych nurse to chief consoler, he was really grand. 

Interesting, what you say, and how you say it, about "fog", your vision, your thinking, "clarity" and how we "see things". Important these things are, to notice and reflect on over time. Maybe harder to figure out and discern those, than noticing you are starting to loose nasty nasal symptoms or a irksome bothered gut, but I am glad to hear about those too!  

I feel, having and loosing, my HCV has created a bit of an awakening in me, I feel I am a changed person (in ways). I think I can relate to looking at life maybe a little too darkly/muddled or maybe better described as "through dull glass", hard to describe!!, but, I think I am "feeling more" now. Sound funny? 

I think your vision will keep improving!

And, I'm not buying it - we ARE "allowed" to blame EVERYTHING on HCV, if we want, I DO!, a lot!! smile C.



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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)



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I have one more week of treatment! Then the waiting begins all over again. biggrin The first 2 weeks went really fast and I am sure the next 12 will be the same. There are 2 things that i have noticed the most since starting Epclusa. I had pain in my lower stomach and it's gone now. The biggest thing is how much more aware i am of everything. My vision seems clearer, and the brain fog is starting to lift. So much so that I am thinking about my life the last 35 plus years and how out of it I sometimes was. Some decisions weren't the best as I let people take advantage of me, thinking I was doing the right thing. It was the right thing for them, not me. Mostly things about income, and employment. Ok... I can't blame it all on the hep c, they were my choices, but things are about to change. I can't help but wonder how different my life would have been. Sob story over! I am so grateful to my family and especially my daughter who has been awesome through everything. I don't know what i would do without her! She has been the water cop, making sure that i am drinking my water everyday! Having this forum to talk about things and hear what other people have to say has and will be a lifeline for me.It will be interesting to see how my body and mind feel after the drugs are out of my body. I am excited to see what the future holds!

Canuck - I am feeling better, but it's still hanging on a little. Thanks!



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Hey Razor,

One more sleep eh? 

That last lonely pill down the gullet, and then, the alarmingly weird silence of a no-longer rattling bottle!! A good day to have a mini-celebration I'd say!

Congrats on all your stellar work and finish! You did very, very well indeed.

Us 3's are killin' it!

I am so glad many of your other bloods have normalized again already - that is a very nice reassuring feeling isn't it. Give the platelets etc a wee bit more time.

Don't sweat the nodule, it probably just appeared to spoil your fun, momentarily, and will be found to be nothing but a rude unwanted irksome irritating distraction.

The weird pains on the side of your head?? No idea! - but .... once (years ago) I had something like that, it was quite painful, and a little worrisome, an off and on kind of thing, it actually made me go to emerg. (was a weekend, otherwise I would have just waited longer and gone to see my GP about it), turned out it was just the continuing/morphing aftermath of a cold (a recent cold, one that I had got over and forgotten all about), but the cold virus itself had decided to "pick on" and lodge in one of my cranial nerves for a bit - it soon resolved, all on it's own - it was just weird.

I think Phoenix and Tig are right, those pains will vapourize.

Sleep well - happy dreams Razor. smile C.

Hey Phoenix, Did that sinus infection give up the ghost?? Hope so! 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)



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4 more to go, Yay! I am a week behind you. It sure feels good to be just about done.

I am sure those pains will go away for you. 

Next stop.... SVR!!!



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Tig


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Hey Ian,

Wow, that went fast. For me anyway! I'm happy that you're doing well and haven't had any side effects to speak of. There has been some discussion of discomfort in the RUQ between others. It isn't uncommon and should diminish over time. If there had been some significant inflammation going on, the changes in that (reduction) can sometimes be felt in the supporting tissues and abdomen. There is also a loop of colon that transverses that region and it can also cause some discomfort. A lot of things involved and interconnected that are beginning to enjoy the death of a particularly nasty virus. Healing takes time and fortunately you have that going for you! If you have any questions be sure you ask the doc when you see him/her next, it may be the last time you see them for a while. As always, if we can assist you in any way, let us know. 

I expect you to remain undetected and then you'll be sitting there waiting for the next 12 weeks to finally put the last nail in your dragon's coffin. SVR12 is just around the corner. Congratulations on completing treatment, onward and upward Brother! Let us know what your results are, we always enjoy a good ending!

 



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Tig

67yo 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!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

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Hi all,

last 4 pills staring at me, had all the bloods and VL done yesterday in preparation for the Doc next Saturday. All bloods now normal apart from WBC and Platelets, which i put down to my enlarged spleen.

Been feeling normal, no real sides, except now and again in the last 2 weeks, aching in the Liver region and some short lived intense pains on the side of my head !!!! Whatever...Que sera sera.

Should have VL result next Thursday and will update. I suppose the next thing will be an Ultra sound, and then i have to check out the 5mm nodule on my lung that the MRI showed up....so boring....Still, i am more fortunate than a lot of others.

Onwards and upwards.

Up the Blades....14 unbeaten. COYRAWW!



__________________

Geno 3. TX fail 2010

7/9/16 generic Epclusa. vl 1,730,000. ast 93,alt 81.alp 43.

23/9 ast 37 alt 33. 

29/9 ast 35 alt 31.

10/10 vl undetected,ast 49 alt 48 ggt 72 wbc 3700 

22/10 ast 38 alt 22. VL undetected down to below 12 IU/ml.

15/11 AST 38 ALT 23 GGT 40

24/10 AST 31 ALT 26 GGT 44 

 

 



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Phoenix,

ug! Sinus infection. Wish you well FAST. SO not fair!

Razor,

Man, your numbers! Looky that ALT 23!, and I am pleased to see that GGT drop too. All good. I am glad you are feeling OK. 

Hang in there everybody, the end is in sight!! 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)



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Sanuk,

I used to have one something like that ... sorta went, "I can live anywhere" (under just about any kind of circumstance) for XX amount of time! But I think you are right about your similar "time-limit XX thing" for "anyone can do anything" (but I do think the XX part turns out important)!!

"Walls", from pain, to tolerating the sight of blood, duress/stress/worry/anger, desperate for hope, longing for normalcy (whatever that is!) - us being tested to the limits of our human endurance seem to have very weird gumby-type lengths attached to them. Just when you think you've run as long and hard and as far you can, stretched to your limit, something gives (or breaks), and sometimes just the smallest breather, gives us a chance to don our shoes again, or, to start over barefoot.

I just gave in to whatever HCV treatment threw at me, just did it dish-rag fashion! My big wall actually came before I started treatment, I was so stressed about whether I was going to succeed in getting into my HCV trial, or not, I was embarressed when I had an unplanned melt-down in some poor unsuspecting doc's office one day. Had to go there, at their persistent pushing, for some other "technically" unrelated issue. Whilst there, I lost it, started with one uncontrollable rebel tear escaping my control (the time-control for the waiting I had been enduring ran out). Cried all the way home, but managed to start re-booting next day. Many weeks later, I found out I was going to get into the trial. That helped, A LOT!

You shoulda seen the look on that surprized docs face. She couldn't figure out what she had done, what my problem was, all she wanted was a bit of tissue from me, what's the big deal, I just muttered something about waiting for HCV treatment, stress, etc and skidaddled for the door! 

You have already endured chapters and almost the whole book, then, to have this to take care of this too - you are entitled to feeling you are stretched to your limits. We could have done without sides. 

I think your sides will decrease, you will cure this HCV, and then you will get in your trial. I found coming here helped me. I hope it will for you too, anything to make it a wee bit easier. 

You are likely not cirrhotic (according to the history you showed), if your doc thinks your liver function is OK, then maybe he will let you take some limited form of analgesia for your body pain. That might take the edge off one part of it. 

Hang in there. Let us know what he says.

(More water). 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)



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Thank you all for your kind words and encouragement! In my younger days, I used to jokingly say, "anyone can do anything for XX days" focusing on the temporary nature of things and conditions.  I think I just hit a wall and became overwhelmed with everything.  It really doesn't take much nowadays. 

I decided to take the drug in the evening, after dinner at 7pm.  I usually take it with a large (16 oz) glass of water.  Yes, this means I have to get up in the middle of the night to pee, but that's not uncommon- even before the epclusa biggrin.

I've got a request in for an appointment to talk with the dr.  Maybe we can find a way to deal with the pain and weakness.  This is good advice.  Thanks!

Canuk- yea, it took about a month after all the blood work and imaging was done for me to get an Rx for Epclusa. There were multiple problems and confusions with the gastro-hep dr's office staff.  So much that I had to call my oncologist's office and ask them to see if they could fix the problem and light a fire to get things moving.  I'm waiting cancer treatment on hep c treatment (can't mix the systemic meds) so the wait is meaningful. Anyway, once the office staff got on it, everything went quickly and smoothly. It just took a long time.  

I'll remind myself to stay patient with the process and grateful for the cure. 

Thank you, friends!

Shalom,

Jen



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GT 2b;

Oct 2016 F0/1; TX 12 week Epclusa; UND at SOT +4

 



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Hey Razor, Phoenix, Ruby,

You're all getting down to the winner wires!! Oh, these are all going to be such exciting finishes! I can't wait to see them all! biggrin C.

Sunuk-Sunan,

So sorry for these troubles. Yes, increase the litres, despite all. Remember, you are in the initial starting period, the heaviest time people DO tend to have and report sides/complaints - I hope these pains are going to start decreasing for you soon. 

I agree with Cheddy, if you have a soon sheduled appointment with your doc, and even if you don't, then do consider seeing him soon, to discuss body pain and your options for relief. 

Some of what you are experiencing may be unavoidable, and will just naturally start decreasing as you progress through your course, and, the increased water intake should also help. It may be just be a matter of time, and a short time I hope.

You started at a disadvantage, what with your level of strength post Ca treatment, and with prior tendency for arthritic symptoms, so, with Murphy's Law applying I am not entirely surprized the sides you are experiencing, picked on you, especially in these two areas (musculo-skeletal and strength).

I don't think I read a post from you until now (10 days into the epclusa) , or maybe I missed one, but I was SO pleased to see you finally got it! If I recall rightly, they did not keep you waiting too long then? Also, what time of day did you end up deciding to take your dose, and do you take it with a meal?

Drink, drag yourself to the toilet, try to see the doc to discuss pain control options, wait, it may not be long before things let up. I agree with you, you did chemo, you will do this too. I think it will let up soon. 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)



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Jen,

This sounds really extreme.  So sorryno.  Perhaps you should get back to your doctor.  There may be another tactic.  I'm hoping another member will have more information or experience.   Hang in there.  You've got to beat this.  

COURAGE!

 



__________________

GT2a, VL 681,500, Less than F1, Treatment Naive

12 wks Sovaldi/Ribavirin, SOT 2/25/16, EOT 5/17/16

UND at 2,4,8 and 12 wks during treatment but ribavirin crazy.

ALT/AST normal EOT

SVR12 8/13/2016!!!!!!!!!  I WON!!

EOT 6 Months 11/12/2016  CURED

 



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Hi Phoenix

The only thing I have to say is WHOOHOO!!!

RRclap.gif



__________________

GT2 Diagnosed in 2007 vl 1.88E+1;

2010 vl 9.15E+5 Peg/Riba 2010 24wks: replicated

2014 vl 4.22E+6

2015-03-05 vl 1.53E+6

2016 Fibroscan F4 22.0

Waiting treatment/ On treatment: 14/09/16 Epclusa

10/06/16Fibroscan F4 22.0

Aug/16 ALT 72/ AST 50

On treatment; Epclusa: 4 week VL results: UNDETECTED  (ALT:26)

 



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Hi Jen

Hands down you can do this!  Keep your eyes on the prize, those 3 sweet letters SVR smile  We all react differently and we all manage differently. Be kind to yourself, try not to get discouraged!  I also experience leg and joint pain but I had it prior to treatment. I will say the days I experience it now are fewer and fewer and the fatigue it has lessened also.  My first week or so I knew there was a battle beginning but now with 9 weeks under my belt things are so much better!  The water lol yes it can be a daily marathon but it's well worth it!

Chin up, you've this!!



__________________

GT2 Diagnosed in 2007 vl 1.88E+1;

2010 vl 9.15E+5 Peg/Riba 2010 24wks: replicated

2014 vl 4.22E+6

2015-03-05 vl 1.53E+6

2016 Fibroscan F4 22.0

Waiting treatment/ On treatment: 14/09/16 Epclusa

10/06/16Fibroscan F4 22.0

Aug/16 ALT 72/ AST 50

On treatment; Epclusa: 4 week VL results: UNDETECTED  (ALT:26)

 



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Hello! I start week 10 tonight. 3 more weeks to go!  biggrin    The only side effect that I still have is fatigue. Working thru that and I hope that in a few weeks I will start getting some energy back.

Jen - I too have joint pain. Mine started before treatment and has not been any worse on Epclusa. I do drink a gallon of water a day, and YES I am really sick of having to go to the bathroom all the time! So are my bosses at work. Someone has to come in for me every time  I have to go. I work with kids and they can't be left alone, so...  toilet.gif    Small price to pay for feeling better!!

Sinus infection hit me a few days ago. As if I wasn't tired before, it's much worse now. Going to bed very early tonight. Good night! yawn

  



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Greetings.I would love to use the word "soon", but it is not in my ability to honestly do so.

 

I Am committed to being honest.

 

Soon / Later... that I can deal with and say yes it will get better.

I encourage you my friend. Get tougher than you have ever been. It will have a great pay back!

This is nothing compared to that which those before us faced.

It is nothing compared to that which those ahead of us will. Our children!

Stand up and be strong.

 

We are committed to do this...for ours.

 

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."



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UGH!! not  only do I have to pee all the time, but I can't get to the toilet very quickly.  I don't have the strength and it hurts to move. no

Tell me it will get better sooner rather than later!  I'm not sure I can manage 10 more weeks of debilitating joint and muscle pain. Ok maybe I can, but it won't be pretty.

I've gotten through cancer treatment's fatigue, nausea, bone pain, and the never ending "flu like symptoms", but this joint pain and muscle weakness is like none other. In cancer treatment I never felt disabled. Now if I don't use the handicapped toilet stall I won't be able to stand back up.  

Ok, I"ll stop whining and drain another liter of water.

Thanks,

Jen



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GT 2b;

Oct 2016 F0/1; TX 12 week Epclusa; UND at SOT +4

 



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If you are used to 3, make it 4 minimum while on treatment.

Pee, like you have never Peed before!

Begone with the beast!

wink

I know I have issues, but I also know I am right! wink

 

JimmyK Your Friend!



__________________

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."



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Hi Razor-Blade,

I thought I was drinking a lot of water already.  I easily drink 3 liters a day now.  More?

thanks,



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GT 2b;

Oct 2016 F0/1; TX 12 week Epclusa; UND at SOT +4

 



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Hi Sanuk,

Water, and lots of it. 3 ltrs a day min. It cured all my side effects. i am just finishing week ten and hardly any side effects now after a bumpy start.



__________________

Geno 3. TX fail 2010

7/9/16 generic Epclusa. vl 1,730,000. ast 93,alt 81.alp 43.

23/9 ast 37 alt 33. 

29/9 ast 35 alt 31.

10/10 vl undetected,ast 49 alt 48 ggt 72 wbc 3700 

22/10 ast 38 alt 22. VL undetected down to below 12 IU/ml.

15/11 AST 38 ALT 23 GGT 40

24/10 AST 31 ALT 26 GGT 44 

 

 



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Hey Friends!

I'm now about 10 days into my Epclulsa treatment.  The sides have mostly been strange nausea, heartburn, fatigue, and painful joints.  I can mostly deal with all of these except the painful joints.  It's just so painful to move - my ankles, knees, hips, back, and shoulders are almost always painful.  Is this an Epclusa thing? A hep c thing?  I have arthritis, but this doesn't get better with movement.  In fact it seems to get worse.  In the morning I can barely get out of bed it hurts so much to move.

Have any of you all had problems like this? n

Thanks!



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GT 2b;

Oct 2016 F0/1; TX 12 week Epclusa; UND at SOT +4

 

Tig


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Hey RB,

Your treatment is progressing well. The enzymes are coming down as expected, the ALT shows continued reduction, which is telling us inflammation is resolving nicely. Don't be concerned with the difference, having them within normal limits is golden. We frequently see fluctuations in many of these levels, especially during treatment. Your doctor can better explain that. One thing you have to consider, because of the cirrhosis, you will often see lower than normal platelets. I have seen platelets drop far lower than that. Your doctor will monitor all of that going forward. Right now, I wouldn't be concerned with it. 

You're almost there! smile



__________________

Tig

67yo 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!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

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Hi All, 

Glad to see everyone positive. Interesting article Tig, explains the importance of adherence. I forgot 1 once but remembered 4 hrs later....

Start week 11 tomorrow, so only 14 days left (not that i am counting lol).

Could not resist doing some bloods today. AST 38, ALT 23, so consistent with the last test, GGT 40, down from 72 smile.

WBC still low 3720 and Platelets 118,000, any ideas ?



__________________

Geno 3. TX fail 2010

7/9/16 generic Epclusa. vl 1,730,000. ast 93,alt 81.alp 43.

23/9 ast 37 alt 33. 

29/9 ast 35 alt 31.

10/10 vl undetected,ast 49 alt 48 ggt 72 wbc 3700 

22/10 ast 38 alt 22. VL undetected down to below 12 IU/ml.

15/11 AST 38 ALT 23 GGT 40

24/10 AST 31 ALT 26 GGT 44 

 

 



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Thank Tig and Canuck for all your support.  Yes time is flying by whoohoo!



__________________

GT2 Diagnosed in 2007 vl 1.88E+1;

2010 vl 9.15E+5 Peg/Riba 2010 24wks: replicated

2014 vl 4.22E+6

2015-03-05 vl 1.53E+6

2016 Fibroscan F4 22.0

Waiting treatment/ On treatment: 14/09/16 Epclusa

10/06/16Fibroscan F4 22.0

Aug/16 ALT 72/ AST 50

On treatment; Epclusa: 4 week VL results: UNDETECTED  (ALT:26)

 



Senior Member

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Thanks Tig! These drugs are quite amazing. I do know that this virus is out of my body. I am feeling better in lots of ways! Just waiting for the fatigue to pass as I know it will. yawn

Thanks for posting the fact sheet on Epclusa. It's good to learn everything we can about what the drugs are doing.

Congratulations again!



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