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Post Info TOPIC: Update - five plus years UND and going strong.


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Update - five plus years UND and going strong.
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My cirrhotic liver was transplanted at the age of 69.75 with a cadaver liver. My transplant center - Pitt - says they do not have an age limit, but fitness rules out most people in their 70's. Myself, I ride a Schwinn Airdyne. ( Hee-hee. Sounds like we're aging bikers, arguing Harley vs everybody else.) Keep riding and stay off the list.

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70 YO M, Dx 1999, 1a, cirrhosis; Pegasys/Riba Neupogen Aranesp in 2001, partial responder; PegIntron Riba 2002, partial; Phase 2 Clinical Trial Pegasys/Valopocitabine 2004, relapse at EOT; Sovaldi/Olysio 2014, SVR; HCC 2015, TACE 2016, Transplant 2016

Tig


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Hi Karen,

It’s nice to hear your good news! Seems like our treatments were like yesterday, yet they were several years now and are considered archaic and torturous. They’re absolutely right, too! If you’re compensating well and are keeping your health in good order, then I agree with Canuck, your need for transplantation, isn‘t likely. We all have to stay on top of our health and continue to celebrate our SVR! We worked hard for that...

So nice to have you back for a visit! Don’t be a stranger wink



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Tig

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

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great news miller



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Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=L.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0



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Good to meet you, Millercolab.  I'm with Canuck, if you have not further cause for liver damage, this one will probably carry on.  What a good thing you get your exercise.  That, and a healthy diet are your friends.. It is hard for most people to keep that discipline going, so give yourself an extra pat on the back.

I, too, counted on this gang to get me through my diagnosis and treatment.  What a great help it was.  

Thank for checking in.  We really like to know what happens to people over time.

All the best to you.

Cheddy

 



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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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Hey Hi Millercolab!

Nice to hear from you again, it's been a while. : ) 

You have done a lot of research on transplant rules (what and where they live) - these are very interesting things to know - but I am still of the mind that your virus-free liver is going to hold you just fine for the rest of your days.

In your prior thread you mentioned things like ... doc said you were compensating well, that labs looked good, you were treating yourself healthy, as you should, and that you were being followed well with continuing U/S's every 6 months.

You thought you had NOT had any softening or lessening of your liver firmness, but, you had only ever had one fibroscan (in 2017?) to use as a guide? Have you not had any further fibroscans to compare against?? What kind of cirrhosis measurements DO you have to look at over the years (likely you have had many blood-based methods of Fscore-testing such as "fibrotests" and similar)? Imaging (and labs) can show you some changes, but too bad if you are not also getting fibroscans every 6 months or so - it would be nice to see if they can detect ANY lessening of liver firmness/stiffness by fibroscan as well.

Well (in my book), as long as the fibrosis has stopped, has stopped increasing, and you are virus-free and all feels and appears well, this is success! I wonder what your actual Fscore numbers are by labs, and what your Fscores/kPa numbers are by fibroscans, and how cirrhotic they describe your liver looking like on imaging - perhaps there HAS been some subtle changes "to the good" via your imagings over all this time since cure?

Without having many old and newly-repeated tests to compare back to and analyze, how can we know if might have gained a titch more liver elasticity/hardness regression?

I would find it comforting and reassuring to know there has been no change (no further firmness increases) over time (by ALL these test methods, including repeat fibroscans), and bonus if perhaps some improvement happened in Fscore.

Sigh, I wish i could be as dedicated to my health exercise as you are! Good to hear from you. If you do have any ongoing lab or test results for Fscores to share, i would be interested to see how they compare to the old. : )  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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Hi everyone, its nice to see the forum still thriving.  It certainly was a source of strength for me, and even though a cure for Hep C is now everywhere, I think anyone going through treatment and its aftermath could use the loving support here.  I am doing well.  I still get a screening every six months, and have changed my treatment provider from Dartmouth to the Mayo Clinic to Mass General - a combination of doctors leaving and convenience.  I have also been concerned about the availability of transplants, although (knock on wood) I haven't needed one.  Dartmouth didn't have a liver transplant program, and Mayo did, so I went there.  Unfortunately, I have now pretty much aged out of transplant eligibility, at least for cadaver livers.  This is an area that really ticks me off!  Most transplant centers have a cut-off age of 70; Mayo goes to 75.  Once you are over 75, its my understanding that most, if not all, centers will not list you for transplant.  

At any rate, my poor cirrhotic liver has so far kept plugging along.  I don't drink and restrict salt, exercise vigorously almost every day (I enthusiastically recommend Peloton bikes) and keep my fingers crossed.  Hope you are all doing well!  



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GT 1b, VL5Mil+ when diagnosed in 2012, acquired HCV 1970; BMS 3 drug clinical trial 2/13, und 12 weeks post treatment, UND 24 weeks post treatment; UND at 18 months, UND at eot + 2 years. Still UND at +5!

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