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9662954 tn?1405606159

What's the definition of ignorance when it comes to testing post S&O?

Me!!!!!!!!!!  I got back my test results about 13 weeks post S&O and thought because I still had three more weeks before the complete 16 week test for a sustained viral response, I had another three weeks and that today's results were just a step closer.

OMG! Lynn kindly informed me I am an idiot! I am still non-detected which means (according to a lot of info Hector has posted), I am Hepatitis C FREE for the first time in over 30 years!!!  I am no longer Ms. hep C!  I was 19 when I got this disease. My entire adult life has been defined by a death sentence!  Now here I am, three weeks early, but hep c free!  I am in shock and realize I need to learn how to live! For so fling I planned my damn death! Now I can plan a life! I'm in shock and have Lynn to thank for enlightening me!

I was even complaining about the cirrhosis side effects and that I was going to have to cut back on my job. I only took a 12 hour weekly reduction! Good lord, there are so many of you all that because of this horrific disease are not able to do much at all!  I am lucky. I do not have it that bad, and I am incredibly grateful that I am hep c free!

I am scheduled for another blood test in three weeks, and then a chat mid October with my liver doc about the cirrhosis and portal hypertension stuff.  However, instead of discussing a decline, we are going to (for the first time ever) be discussing "living" with side effects and an actual future!  Wow! I've never had an appointment to plan my life without hep c! Guess what! I am NOT going to miss those discussions!

As I only just found out what non-detected means at 13 weeks post the end of treatment, I am in shock!  I was a "slow" responder to S&O!  It took six weeks for me to go to non-detected! I was so convinced I would fail treatment, even still after today's news.  I was actually waiting for another test in three weeks! Omg! I am in shock! Thank you again Lynn for setting me straight! Best wishes, dbz

It'll take a bit for this to really sink in! After so long being sick, 1 the worst A, I was actually conditioned for failure!  Now I have to change my view--life? Wow.  
19 Responses
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Avatar universal
I hope you are having a better time knowing your new status! Just a gentle suggestion: I forgot to tell you, find out what side of your head the crystals are messing with most, you can find that out by turning your head to the extreme each way, and see what ails you the most. Then sleep on the "other" side, if it's right side of your head (by your right ear)...then sleep on your left side and vicea versa. That really helps me. Helps even out the crystals. Found this out from a specialist in this because this was plaguing me so much. Happy Days for you!
Helpful - 0
Avatar universal
Happy for you!  Every one who posts SVR is another victory for everyone who has been fighting this monster for decades.
Congratulations!
Nan
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Avatar universal
Hallelujah...your "ignorance" had bought me to tears of joy.!
Helpful - 0
Avatar universal
What Hector said is true. No two people are alike in the way they manifest symptoms or how a disease plays out on a person, we all only have today and I try to make that day count. I know, easier said than done because I'm from a family of worriers. I had a bone-marrow transplant so I know I'll probably never be a jock again, as in past years, but I can make my life as great as I can make it. Now that I hope the Hep C is gone, it will be that much better. We'll see in a month, I was just still non-detected after two months out of EOT.

I really do love that all those creepy symptoms of Hep C gone, the flu like and foggy feelings, aches, pain in my liver, etc so I can hang on to that unless I relapse, then I'll deal with that as it comes along.  

My sister was diagnosed decompensated cirrhosis 11 years ago (she does not have hep c, or this would be a different story) and she just quit drinking alcohol and went on with her life. She still has decompensated cirrhosis disease but her meld score went for the better and the doc says she doesn't need a transplant,...for today anyway. 11 years later. She's taking her lactulose and eating well, etc. She will eventually need a transplant but it's weird that she's gone so long with such a bad liver, the liver is a tremendous organ and my sister is a walking miracle. She just lives her life and has the most fun she can, etc.

Please, I am not advocating that anyone wait when they need to get a transplant, this just happened to my sister and she doesn't have hep c. Just posted as an example that it's best to do what we can with what we have...Expectations always get me, they did the other day when I was convinced another disease was back (graft vs host, most of you guys wouldn't know about that, it's nothing to do with Hep C) because I broke out with some red spots! So much for me diagnosing myself, hah! I hope for the best and I hope for the best for all of you!
Helpful - 0
Avatar universal
Hey, I have inner ear crystal problems too, so did my dad. I had an episode today, this Epley exercise really helps. I do it every time and it works.

...https://www.youtube.com/watch?v=QikUTAmeE0M...
Helpful - 0
9662954 tn?1405606159
Thanks Hector for clarification and positive words of wisdom!  I've had hep c dice I was a teenager. The only other condition I developed b/c I really am a klutz, it piecing my ear membrane so badly I disturbed the crystals and now have chronic vertigo (every day). So I wonder if I'm not exhausted from the constant perceived motion of this disease! Other than these two, hep c (1979) and vertigo 2014), I'm free and clear and happy to be alive!

As usual I'm learning a lot!  When I was first diagnosed with hep c, the doc used to tell you you only had so many years to live.  I think this was while HIV AIDS was still a huge unknown-- I was tested 89 and first biopsy Jan/Feb 1991!

Maybe that's why hep c took a back burner to real health communication too! As to this day, besides us patients who are learning, not many people understand this disease! Like my job! Anyway, thank you!
Helpful - 0
9662954 tn?1405606159
Thanks so much! Knowing this helps so much! Best dbz
Helpful - 0
Avatar universal
Hi.    Well this is great news.   So glad you decided to test and treat as I know how concerned you were.  
Congragulations
Am hoping some of those cirrhosis issues resolve for you, and hope wellness is coming your way
Take care
Kim
Helpful - 0
Avatar universal
Sounds like something that I would do! I'm just so glad you SVR'd very, very happy for you!!!
Helpful - 0
317787 tn?1473358451
I am so happy for you!  What a nice surprise!
When I treated you had to have UND @ 6 months after tx to be considered cured so I can understand the confusion.
It is wonderful!!
Congrats!
Helpful - 0
7510956 tn?1411671417
When I was told I was F-4 bridging to Cirrhosis, I asked my Dr. 100 questions and how many years of life left for me. He said JUST LIVE!
Helpful - 0
Avatar universal
All cirrhotics will develop portal hypertension. That means increased pressure in the portal venous system. The severity varies widely. The main reason is narrowing of the portal vein branches by fibroblasts ( scar tissue). After SVR, the scar tissue is resorbed, the portal vein branches can dilate and the pressure decreases. This is why cirrhotics won't develop new varices after SVR, and existing varices may shrink. The early changes of portal venous gastropathy can be resolved. Scar tissue in the liver can resolve in many patients. It is still uncertain, but wide bands of scar tissue may not be completely resolved. In up to 80% of cirrhotics, liver cell regeneration occurs, and liver failure becomes unlikely. The risk of HCC remains but is significantly less. So overall, cirrhotics can reasonably expect a normal life span after SVR.
Helpful - 0
Avatar universal
Early cirrhosis, compensated, class A, cirrhosis is reversible in many people. That is why people with compensated cirrhosis on transplant waiting lists are now being safely treated for their hepatitis C in hopes that they will not go on to need liver transplants. Many papers (AASLD papers, Hepatology Magazine articles, etc.) have been written on this subject disproving the older theory that cirrhosis was irreversible.

Pol S, Carnot F, Nalpas B, et al. Reversibility of hepatitis C virus related cirrhosis. Hum Pathol 2004; 35: 107–12.

George SL, Bacon BR, Brunt EM, Mihindukulasuriya KL, Hoffmann J, Di Bisceglie AM. Clinical, virologic, histologic, and biochemical outcomes after successful HCV therapy: a 5- year follow-up of 150 patients. Hepatology 2009; 49: 729–38.

Shiratori Y, Imazeki F, Moriyama M, et al. Histologic improvement of fibrosis in patients with hepatitis C who have sustained response to interferon therapy. Ann Intern Med 2000; 132: 517–24.

Mallet V, Gilgenkrantz H, Serpaggi J, et al. Brief communication: the relationship of regression of cirrhosis to outcome in chronic hepatitis C. Ann Intern Med 2008; 149: 399–403.

Bruno S, Crosignani A, Facciotto C, et al. Sustained virologic response prevents the development of esophageal varices in compensated, Child-Pugh class A hepatitis C virus-induced cirrhosis. A 12-year prospective follow-up study. Hepatology 2010; 51: 2069–76.

Further studies are now being done by Gilead to see if decompensated, Class B and End-Stage Liver Disease patients, Class C patients, can be also be cured using Sovaldi treatments. Since these patients couldn't be treated before safely with previous treatment we will have to see how curing their hepatitis C (if possible) will affect their advanced liver disease and liver disease prognosis. While some cirrhosis is reversible the chance for reversibility declines as the liver goes through more advanced disease.

Review Article: The Reversibility of Cirrhosis
A. A. Sohrabpour, M. Mohamadnejad, R. Malekzadeh
Disclosures

Aliment Pharmacol Ther. 2012;36(9):824-832.

http://www.medscape.com/viewarticle/772507_1

Methods:  A PubMed search was performed and the evidence for histopathological regression of advanced fibrosis/cirrhosis following drug therapy was reviewed as of the end of February 2012.

Results: There is abundant clinical evidence in support of the idea of the reversibility of cirrhosis in patients with different aetiologies of advanced hepatic disease including viral, autoimmune and metabolic/infiltrative liver disease.

Conclusions: The concept of cirrhosis has changed from being a form of static and irreversible entity to a dynamic and reversible diseases stage. Novel therapeutic strategies are under investigation to target specific steps in the process of fibrogenesis with the aim of reversing advanced fibrosis/cirrhosis.
Helpful - 0
446474 tn?1446347682
For the record, the stats I posted were from the Sovaldi and peginterferon +  ribavirin or Sovaldi and ribavirin NOT from data from the COSMOS trials using Sovaldi when combined with Olysio or with the addition of ribavirin.
These are different treatments and have different treatment responses. The most obvious example being the different SRV rates for different patient populations.

"I got back my test results about 13 weeks post S&O"
Regardless, SVR is SVR12 with S&O also so you are cured.
In the end that is the only thing that really matters.

"Anybody out there do regular testing post S&O?  Were all your test no detected right up to SVR, or was there a change at the very end?"

Again from the clinical trials we know what happens on this S&O treatment and applies to all Sovaldi treatments. A some point, not necessarily by week 4, where only about half (57%) of people are indetectable, a person becomes undetectable. Week 2, 3, 4, 5, 6, 7, 8, it doesn't matter. Once they are undetectable they remain undetectable for as long as they remain treating. It is only after stopping treatment do we see if the treatment has cured us or if it was only temporarily keeping the viral load at an undetectable level and we see the viral load rising rapidly usually to a level higher than it was before starting treatment.  The virus typically returns within the first 4 weeks after stopping treatment but some have also relapsed after the 4 weeks.

The cirrhosis and any portal hypertension is a separate issue. That damage from the virus has already been done. Whether a person's liver can heal itself or whether a person develops liver cancer because of the cirrhosis is different for each of us as no two people ever have the same liver disease.

I think another lesson for all of us, is to not stop living because we are infected by hepatitis C, have cirrhosis or anything else that is supposed to be less than "normal" or "healthy". About one half of people that need liver transplants have hep C that leaves a lot of folks with conditions that sometimes can't be cured. Also many of us are older (55-65) and have other chronic medical issues as well as our liver issues. For us with cirrhosis unfortunately some of us will go on to develop End-Stage Liver Disease (ESLD) or Liver Cancer (HCC) and will need a liver transplant to survive. At that point you will never be 100% normal ever again and waiting around for it is to waste your life. Normal is way overrated. You don't have to be "normal" or "healthy" to have a good life. Today is all any of us has. Enjoy it while you can.

Be well.

Hector

Helpful - 0
9662954 tn?1405606159
Thank you, but unfortunately the cirrhosis monster hit hard so my biggest challenge will be to treat my portal hypertension and cirrhosis gently.  

Diet is so important! I stopped eating red meat when diagnosed with chronic nonA/nonB hepatitis.  To be honest, I don't think I'll ever go off my liver-friendly diet! Isn't it funny how you can get used to eating certain foods? Once I tasted a crisp and had to spit it out! It was as if I had had a teaspoon of salt! Yuck!
Helpful - 0
9662954 tn?1405606159
No you didn't! I did and am! I cannot count! I'm 9 and a bit weeks post EOT. 2 and a half weeks from the "big" test.  If only 1.7% relapse after making it non-detected 4 weeks, then you and Hector are right. I should be celebrating a SVR at 9 plus weeks!  Now if only I could count! I have it stuck in my head 16 weeks is the testing time for a SVR...I counted back from 16...did I mention weird fuzzy thinking and dyslexia as cirrhosis side effects?! Yeppers .I am forever more a ditz!  That's not so bad. If I were on steroids I'd be a raving #itch! So a bit dizzy and ditzey is okay!

Anybody out there do regular testing post S&O?  Were all your test no detected right up to SVR, or was there a change at the very end?  

Helpful - 0
Avatar universal
Congratulations!  I am so happy for you!  What an incredible feeling it must be!   Enjoy the future!!!!
Helpful - 0
Avatar universal
What a wonderful, exciting surprise!!!

Congratulations!!  This is where you get to do the Happy Dance!!!!

Further, if your liver was not decompensated, it might even get some better over time - stick to a liver friendly diet even now.

Now, go celebrate!!!  How wonderful, another successful warriorand another dead dragon.    Pat
Helpful - 0
683231 tn?1467323017
Hey I never said you are an idiot.

I just passed along what Hector posted about what 4 weeks SVR means that the likelyhood of failing treatment is 1.5% at that point.

You are anything but an idiot just someone who was scared for their life like we all are. You are an intelligent person who is a warrior and a winner!

You have won your battle with the dragon congrats!
Lynn
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