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globetrotter


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RE: Another newbie
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Bills cheers mate..words of wisdom are great! This was a palm tree on Guam and it tickled me. The island was in YAP Micronesia living with subsistence fisherman and going back to basics...diving with sharks and manta rays!

 

Sally

 



__________________

51 year old Geno type 1A,  possibly 30 years HCV. HBV detected but currently dormant. viral load over 1,000,000. Started triple with Telaprevir Nov 2013 for 48 weeks.

VL week 4 -179,

VL week 12 -50. 

VL WEEK 24 -UND
Bills


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globetrotter wrote:

 

Bills when I look back I cant believe Im on week 10 but day to day its a long slog as you know...I think that I am nervous that I will be in the same boat as you ...irrational I understand as no one knows yet so I am trying not to go down that road yet!!!

 Everyone I am touched by all the support...

Sally

 Hi again Sally, Keep positive  I admired all the real warriors that had taken the hard way. You are one of us and Your in good company. By the way nice avatar Must be that island mentioned? I gotta change mine. I have positive feelings for you recovery It's worth going week by week as long as your UND and your doc feels good about your blood work and is honest about your oods.

I'm going to be looking out for you 

Bill S 

 

 

   

BS     



__________________

Bills

Harvoni started 12-12-14 for 24 wks PrevTX Geno 1 stage 3 cirrhosis - non resp Int/ ribv. Started Trial  in Aug 2011 -July 2012 into Incivek relapsed  Feb 2013 Had 72 weeks on interferon & Riba.

globetrotter


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Gracie I understand that feeling...when I feel slightly better one day I wonder if I ever felt ill and on bad days (mostly) I wonder if I ever felt well!! I get emotional and my husband has now spotted the signs when Im gonna cry and braces himself as he understands its the drugs...

 

Tig good luck on getting a life again and will keep my fingers crossed for you..exciting times.

Scruffy I will PM you today and maybe Tai chi would be a good place to start..I had been living with my husband on a remote island 9 degrees north of the equator for 6 months and discovered they did power yoga...on the beach with the ocean and sunshine...oh bliss...now in the grey rainy UK..

Bills when I look back I cant believe Im on week 10 but day to day its a long slog as you know...I think that I am nervous that I will be in the same boat as you ...irrational I understand as no one knows yet so I am trying not to go down that road yet!!!

 

Everyone I am touched by all the support...

Sally

 



__________________

51 year old Geno type 1A,  possibly 30 years HCV. HBV detected but currently dormant. viral load over 1,000,000. Started triple with Telaprevir Nov 2013 for 48 weeks.

VL week 4 -179,

VL week 12 -50. 

VL WEEK 24 -UND
Bills


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Hi Sally

Your story sounds so very familiar with many of us here. there were many here last year doing the triple for 48. bright side is 12 weeks and you drop the Inciveck and that will help a lot. Your already in it up to your neck like we were.  Some how with support prayers and luck we made the 12 week mark. Many of that group did get SVR in spite of the odds. As bad as I felt and blood levels etc  these people helped me along. Sorry to say I did relapse at 26 weeks. It hurt more than all the treatment I suffered though. I was so used to the treatment i felt lost not taking pills and shots Looking back i had Hep C and still have Hep C just a little more time and I be doing treatment again. Another thing you have going is your a nurse. As  Scruffy said " Listen to your Doc and let your body be your guide" and you won't be alone there's a lot of hope advice and support here

Good luck Sally we're cheering you on.

Bills

 

 

     



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Bills

Harvoni started 12-12-14 for 24 wks PrevTX Geno 1 stage 3 cirrhosis - non resp Int/ ribv. Started Trial  in Aug 2011 -July 2012 into Incivek relapsed  Feb 2013 Had 72 weeks on interferon & Riba.

Scruffy


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Hi Sally

I've had problems with my HB pretty much all through treatment but stayed active. After three transfusions and weekly shots of procrit its seems to have evened out. I stared to practice Tai Chi. In yoga you have to hold a posture in Tai Chi one posture flows into the next you never stop moving. Once I got "the hang of it" my energy level went up and it seems to have a calming effect. If you get the urge pm me and I'll give you the info on the dvd I use. I still have 16 out of 48 weeks left. Listen to your Doc and let your body be your guide as far as how active you want to be.

Best wishes!!!



__________________

Geno 1a null responder 2004 inter/riba   finished incivek,peg/riba 48 weeks May 17th 2014. undetect weeks 4-12-32.  EOT+7 undetect. EOT+24 SVR!!!!! EOT+!YEAR SVR!!!!
Gracie


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Ok, so today I feel like a piece of CRAP! nauseous, emotional, can't eat... This is a roller coaster. When I went to bed last night, I told my husband how good I felt. Now today... Blech! I am waiting until pill time, then going to BED!



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  1. Gracie

1A. Previously treated non responder Rebetron in 2000 And Incevik in 2014 with a breakthrough at week 12. Fibroscan 15.5. VL 6,000,000. Finished 24 weeks harvoni on Dec. 19, 2015. SVR. Latest Fibroscan 8.8.
Tig


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Sally,

I admire your desire to stay fit and Yoga might be a great thing to consider. Providing your instructor understands your limitations. It's important to try and keep muscle wasting to a minimum. I didn't do so well following my own advice however! Do try to take daily walks, even if it's around the neighborhood. It helps keep the blood flowing and the bones moving forward! Your Hb is getting down there and is likely the reason for your fatigue. While you're tired and weak, it's very important to not push yourself and get plenty of rest.

I just finished triple therapy with Victrelis on Dec. 4th. I wont have my EOT +12 viral load until Feb 27th. I'm in the process of gaining my strength back and enjoying not having to take all those pills! With Victrelis and Riba I was taking 18 pills per day for 24 weeks, 28 weeks overall! That is a regimen I'm thankful is behind me! While these treatments can be grueling, they are tolerable and doable. Hang in there!

Be well,  Tig



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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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globetrotter


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Hi Tig

yep you are right, my support network is still strong but no one can understand like those going through it. Hb 9.0 normally 15.0 so it is hard especially as the mind is urging me to exercise but the body aint having none of it. Riba rage (touch wood) is contained, more tearful than ragey..watch this space! 

Booked myself into a yoga class during a moment of lucidity or craziness, anyways it didn't happen, so hoping when Incivek finished I may get more than just an urge!!!!! wink

Where are you in the grand scheme of things?

 

cheers

Sally



__________________

51 year old Geno type 1A,  possibly 30 years HCV. HBV detected but currently dormant. viral load over 1,000,000. Started triple with Telaprevir Nov 2013 for 48 weeks.

VL week 4 -179,

VL week 12 -50. 

VL WEEK 24 -UND
Tig


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Hi Sally,

Thanks for the update. It must be tough to have your husband and son away at this time. But it sounds like you've got good support from your family and friends, which is a real blessing. Don't forget, we're always here for you as well! 24 hours a day I might add! If you just feel like chatting or venting, remember us. There are some very wise and caring people here. It made a great difference to me while on treatment.

You're wise to avoid any Ribavirin reduction if you can. Small reductions are generally tolerated well, but like you, I'd wait if possible. Do you have a recent Hb level? Mine dropped to 9, but no lower. The fatigue was powerful, but tolerable with limited activity and plenty of rest. It's good to have help when the fatigue is at it's worst. Remember to hydrate!

I agree with you about Netflix and the like! There's nothing like a good movie to get your mind off the side effects. A funny comedy is also perfect on those days when your mood needs a good laugh! 

Keep at it and once you're done with the Incivek, things will improve greatly. Best of luck and stay in touch!

Tig



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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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globetrotter


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oops re  Hb they dose reduce first here but are reluctant as they want me to have the best  chance of success....they will leave it up to me to tell them when I can't cope with it anymore.



__________________

51 year old Geno type 1A,  possibly 30 years HCV. HBV detected but currently dormant. viral load over 1,000,000. Started triple with Telaprevir Nov 2013 for 48 weeks.

VL week 4 -179,

VL week 12 -50. 

VL WEEK 24 -UND
globetrotter


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Thanks everyone for your support it feels good to talk....my baseline VL was 1.2 million and was initially told that 24 weeks on Incivek due to a healthy liver.  VL detected at 179 at week four hence 48 weeks. The anaemia is starting to take its toll (thank god for Netflix)  as is managing the 'ring of fire'!!!! Only 2 weeks of Incivek to go so a silver lining there doh (take twice a day )

 

Sense of humour has disappeared and it doesn't help that my husband has gone with our son back to uni in the states ( he didn't want to leave me but our son also needs some support) and wont be back till March! Friends and family are very supportive ...

 

Regards

 

 



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51 year old Geno type 1A,  possibly 30 years HCV. HBV detected but currently dormant. viral load over 1,000,000. Started triple with Telaprevir Nov 2013 for 48 weeks.

VL week 4 -179,

VL week 12 -50. 

VL WEEK 24 -UND
Matt Chris


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Hello Sally

Welcome to the forum, you have made a wise decision to join and start interacting with others. Having others to help you pass the time while on treatment can really help the daily grind of going the distance. There are others on the same treatment here to talk to learn and encourage to success. Its never easy but with the help of the forum and its caring members it can be done.

matt



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"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 
mallani


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Hi Sally,

Welcome from me as well. As Jill said, the stopping rules for Incivek are a VL of >1000 i.u./ml at week 4 or week 12. Any patient who is Detected at week 4 is in for the 48 week marathon. Do you know your 4 week VL?  The mental side of doing 48 weeks is very difficult, but at least you will be finished the Incivek after 12 weeks. On the bright side, if you were on Victrelis, you take all 3 drugs for 48 weeks, and the anaemia is more profound. I understand about the muscle wasting- mine was profound, as I did nothing for 48 weeks. Try to go for a walk if you can. Good luck for the 12 week VL. If this is Undet. and the Incivek is finished, your mental outlook is bound to improve. Cheers.



__________________

Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
Cinnamon Girl


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Hi Sally, welcome from me too! 

Sorry you weren`t UND at week 4 but you still have a good chance of clearing the virus, and as Tig said, you`ll most probably be UND by week 12.  Do you know what your viral load is exactly?

The usual rules for Incivek treatment are that if your viral load is > (more than) 1000 IU/ml at week 4 then you`ll have to do 48 weeks of treatment, as long as it`s not still > 1000 IU/ml at week 12, which would mean that the treatment wasn`t working and you`d have to stop at that point. 

You`re bound to be feeling tired with a low Hb level, and if it drops any lower than 10 then your doctor might decide to prescribe `Procrit` injections to stimulate the growth of more red blood cells.  I know how frustrating it is, but just go with it and rest, and in another 2 weeks you`ll be finished with the Incivek! 

Best of luck, and I`m glad you found us!  smile

 



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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.

 

 
Tig


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Hi Sally,

Welcome to the forum from me too! I'm glad you found your way to our pages. It can be quite disappointing when you hear something like that, but you still have the likelihood of being UND at week 12. Do your best to be positive and look forward to that. What duration of treatment (24 or 48 week) were you selected to complete initially? The 48 week regimen may be probable now, but that will depend on your test results and decisions made between you and your medical team. Regardless of that, you will be finished with the Incivek at week 12, yeah!! Put one foot in front of the other and keep your mind on the finish line. Since you're a triathlon athlete, you know very well what it's like to have a distant finish line. Just remember as you have before, that as long as you keep moving forward, you will reach that finish line, successfully I might add!

We're here for you and are so happy that you joined our group! Best of luck!!

Tig



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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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Gracie


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There are quite a few on here who were not und at week four and made it to the end with SRV. I'm sure you'll be hearing from them. Turkeys almost ready..thankful I still have my appetite as it smells delicious. How is your eating? Do you take the incevik twice a day or three times?



__________________
  1. Gracie

1A. Previously treated non responder Rebetron in 2000 And Incevik in 2014 with a breakthrough at week 12. Fibroscan 15.5. VL 6,000,000. Finished 24 weeks harvoni on Dec. 19, 2015. SVR. Latest Fibroscan 8.8.
rebeca


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Hello, and welcome to the forum.

Oh! I´m also 51 y.o.Female. Genotype 1a, 1.200.000 VL. I´m waiting to treat. I can understand your frustration at the news, but you have to be positive, really I´ve read some reports and, although you do not have good results in the fourth week, you have the chance to heal.

Anyway, in this forum, there are many people with good information and lots of experience.

I think it can be very frustrating when there are problems with your partner or friends while on treatment.
To me what scares me more is that I am quite alone, but you never know what will happen, people sometimes appears and you did not expect this at your side, or sometimes,what it seems negativebecame positive. We are all here for support.You´ll get it. 

Get a hug from me and a lot of strength.



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52 yo. Genotype 1a. 1.500.000 VL. Fibroscan : 8 . Probably I infected in 80s. I´ve never been treated. I've started Harvoni, 9/02/2015. 12 weeks. 
globetrotter


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Hi Gracie

thanks for the words of encouragement...my treatment team will decide at week 12 wether I will stop or carry on..apparently I am the first to be detected at 4 weeks so they are just as shocked..my baseline VL was the same as yours. I to will be devastated if I have to stop as me and the husband had just started travelling the world as part of our midlife crisis (son a freshman in the States) he went out front door we went out back door so don't understand why I am fighting it mentally..will have to have a word with myself!!!

Sally



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51 year old Geno type 1A,  possibly 30 years HCV. HBV detected but currently dormant. viral load over 1,000,000. Started triple with Telaprevir Nov 2013 for 48 weeks.

VL week 4 -179,

VL week 12 -50. 

VL WEEK 24 -UND
Gracie


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Hi Sally,

Welcome to the group. I was treated in the year 2000 and can remember feeling exactly the same way around the three month mark. Didn't want to do it, cried on shot night and just got fed up. Then my nurse in charge called and told me I was still positive after the three month mark and that I could stop treatment. It was sooooooo hard to stop. Way harder than continuing. I felt defeated and depressed more about stopping.

Keep the end game in mind. I too am a runner, not a triathlon runner, but love to run. I haven't been able to since starting treatment and find it sad to look at my running gear. I keep telling myself when this is over I can train up to where I was before and beyond. As a healthier version of myself the sky is the limit. You can do this. Your body and mind will thank you when you've completed this treatment. 

Gracie



__________________
  1. Gracie

1A. Previously treated non responder Rebetron in 2000 And Incevik in 2014 with a breakthrough at week 12. Fibroscan 15.5. VL 6,000,000. Finished 24 weeks harvoni on Dec. 19, 2015. SVR. Latest Fibroscan 8.8.
globetrotter


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Hi guys

 

I am wondering if anybody has any advice on getting through the mental weariness (not depressed just feel frustrated). Im at week 10 and am struggling to find a way to accept that I am now in this for the full 48 weeks due to being detected at 4 weeks. Im a former nurse so understand what is going on. My Hb dropped from 15 to 10 in the first 4 weeks which is a big drop in a short time..more bloods tomorrow as for the last 10 days have been bed bound except for the odd hour out ...this to is starting to get to me as I used to do triathlons etc and now do nothing...muscle wastage has been extreme!!!!

 

I have been watching this forum for a while and have taken the plunge!

 

Heres hoping

Sally

51 year old 1a on triple with telaprevir for 48 weeks started Nov 2013. Probably had HCV for over 30 years...diagnosed June 2012

 



__________________

51 year old Geno type 1A,  possibly 30 years HCV. HBV detected but currently dormant. viral load over 1,000,000. Started triple with Telaprevir Nov 2013 for 48 weeks.

VL week 4 -179,

VL week 12 -50. 

VL WEEK 24 -UND
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