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Post Info TOPIC: new
perry


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RE: new
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sounds like fun mate. At the moment I,m managing to keep up 200 kms per week - although some days its a real struggle to just get out the door. I plan on keeping it up as long as poss. Just have to manage how the body is feeling from day to day. Now I,m more aware of symptoms I,m finding I may be reading to much into them at times. Still planning on running more ultras where possible



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Genotype 3a ; VL 4 million; ALT 168 ; AST 185. recently diagnosed but had it 25 plus years.

02/05/2015 - EOT - 24 weeks of Peg/Riba. VL - und at week 8 . ALT - 26.

Fibroscan - F3

16/05/2015 ; EOT VL Undetected. ALT - 20 ; AST - 35
britlitkaren


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Welcome. Glad to see a fellow runner! Being in top shape will help you during the tx and in recovery also. I've ran three 5Ks since ending tx and have another one coming up in a few weeks. You can do this..
Karen:)

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Diag 8-10. 1st VL 600,000. Gen 1a. Grade 4 Stage 4 cirrhosis w/ Esophogeal varices level 2. Viral load 1,750,000 7/12/10. Triple Therapy w/ Telaprevir began 7-15-11
perry


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Thanks Kellie - yes prob had it at least over 25 years and now looking back prob had sx on and off for a few years but put it down to other things. Never mind!!! now I know its dealing with it. waiting on specialist apptmt now which will hoipefully happen in next couple of weeks. Cheers



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Genotype 3a ; VL 4 million; ALT 168 ; AST 185. recently diagnosed but had it 25 plus years.

02/05/2015 - EOT - 24 weeks of Peg/Riba. VL - und at week 8 . ALT - 26.

Fibroscan - F3

16/05/2015 ; EOT VL Undetected. ALT - 20 ; AST - 35
Kellie


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Hi and welcome Perry, I was going through some sx when you joined. You've had this virus a long time! Me too! I've got it 34 years ago when I was 16. I'm looking forward to SVR and lots more energy. Take care, Kel



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HCV 1A 1980. Dual tx 2003 -UND at wk 11-discontinued due to severe depression

Started Triple 4/16/13 for 24 weeks

UND wk 4,6,8,12,17 & 24

E.O.T. 9/29/13

EOT + 12 weeks=SVR, and EOT +26 weeks=Cured!
Bills


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Lots NJ's Here Me too in Bellville You will find a lot of useful info and supportive people here

I also go to Weil Cornell I'm in limbo right now waiting on the new stuff 2014

Good luck and welcome

Bill S



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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.

Bloomster


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Hi there and welcome - the forum is an excellent support and a fountain of information.  Caroline



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My husband had genotype 1a, 46yo, started triple therapy (peg/rib/vic) 23rd July 2012, VL prior to treatment 14 million, UNDET 12, 24 weeks, EOT 24th June 2013, EOT +1.5 weeks UNDET, EOT +12 weeks & EOT +27 weeks UNDET; SVR January 2014
ucbgal


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RE: new/hudson county
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jimle,

     thanks for the info on your doc,will put it in my file. also dr.oh,glen ridge,nj is one of nj's top hep-c drs. as well

     interestingly i taught for 29 years in the town you grew up in. thus we must know so many people in common. have left a whiteboard message for you. also i left my teaching career w/ very few people aware of my disease. looking forward to hearing from you.

     have a great day.

sandy,ucbgal



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perry


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thanks all - I will keep you up to date as things happen and will ask questions as they arise. Cheers all and keep enjoying life



__________________

Genotype 3a ; VL 4 million; ALT 168 ; AST 185. recently diagnosed but had it 25 plus years.

02/05/2015 - EOT - 24 weeks of Peg/Riba. VL - und at week 8 . ALT - 26.

Fibroscan - F3

16/05/2015 ; EOT VL Undetected. ALT - 20 ; AST - 35
tonib


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Hi Perry, Thanks for your info, your story is similar to mine. I also live in Jersey, Middlesex County, and formerly from North Jersey. I contracted the virus pretty much the same way you did, however I was fortunate not to be an addict, I was too much of a "garbage head" back in those days and 1 thing never attracted me enough to stick with it. (Thanks God)
I too am positive wit antibodies and my VL is about 5.5 mil. I was told I am geno type 1.
I start my treatment in 6 days.....and yes I'm scared. Im gonna be on the peg/rib/vic treatment. Best of luck with you and keep posting everyone is so terrific here.

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 geno 1, started peg and riba 7/5/13, now 29th day is vicrellis ***tonib VL started 6 million, after 5 weeks 374,000, after 8 weeks 150,000....the big test for VL is 9/27 at 12 weeks  TAKEN OFF THERAPY JUST NOT WORKING FOR ME...12 WEEKS STILL HAVE 9000 VL
Loopy Lisa


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Good luck Perry, it is great that you have found it now so you can treat it. Being fit as one massive bonus, it appears the body can tolerate with less side effects the fitter you are. Good luck with everything! x



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Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 
JIme


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Hi Sandy,

Sorry, I don't know how I missed you. Being from north Jersey myself I usually pick up on where people are from.  Anyway, my Dr. is Jacobson from Weil Cornell in NYC. I was on a trial last year. There are many good places in NYC to get the latest tx if you need it but I see you started last week. That's great and I think you'll do fine. Keep drinking water and try to move around some to keep those sx at bay.

( It's easier to hit a moving target )

Good luck and if you need nay more info don't hesitate to ask.

I'm from Kearny btw. A Hudson county boy......



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jim

GT1a, St2 Lv2 last biopsy 2002, VL  11.4m,  start triple tx 9/30/11

VL 470 @4wks.....VL 22,000 @8wks  stopped tx

Round 2-  Started 3/16/12   PSI-7977, BMS-790052, Riba Undetectable day 14

Did 24 weeks Still UND 12 weeks post tx, SVR24!!!!!!! 2/14/13

 

 

 

 

 
ucbgal


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RE: new,dr's. in n.j.
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jmle,

     i know you've never responded to me ,yet i feel compelled to know who is your dr. i

live in north west nj and am seeing dr.schuman,one of n.j's #1 hep -c drs. can you kindly forward your info on your dr? it would be greatly appreciated. at this point in my life, i would be willing to move anywhere,even out of state.     in addition i contacted gillean in princeton but was declined for the case study. furthermore i signed up for the elliot study in chicago and was declined as well. look at my bio and i guess you'll see why.  i look forward to hearing from you.

sandy,ucbgal



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JoAnneh


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RE: new
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Welcome Perry and Roughrider!
I just completed treatment.
The forum is a great source of
Encouragement, information
And experience.
Best to you both!

__________________

JoAnne

Genotype 1a, Triple therapy w/Invicek started May 19, 2012

DET 4 wk. UND 2,6,12,24 48 treatment. Achieved SVR 2013!
perry


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cheers mate - will do



__________________

Genotype 3a ; VL 4 million; ALT 168 ; AST 185. recently diagnosed but had it 25 plus years.

02/05/2015 - EOT - 24 weeks of Peg/Riba. VL - und at week 8 . ALT - 26.

Fibroscan - F3

16/05/2015 ; EOT VL Undetected. ALT - 20 ; AST - 35
Roughrider55


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Thanks Biggy, I need all the support I can get.  My support circle is rather small so this site I'm sure will become a go-to for me.  I appreciate the welcome for sure.  I see you are on 3rd treatment.  Me too.  I had a reduced but not sustained on 1st and had to stop 2nd.  I'm really anxious this 3rd time.



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Genotype 1A
Biggyb


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Welcome perry & roughrider55, keep us informed with your progress, lots of help and info here. Good Luck



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58 yo..Relapsed in 99 and again in 2004. Started triple therapy with Victrelis July 22,2012.  genotype 1a. week 8,12,16,24 VL Undetectable..E.O.T -- 6-22-2013,,,EOT + 24., UND. 

SVR !!!

 

~Bob~
Roughrider55


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Hello Everyone,

 

I am new to the forum as of this evening.  I started treatment yesterday with INC/RIb/Peg.  I already am experiencing some slight side affects from the medicine.  I am looking forward to reading posts, developing dialogue and learning ways to cope while on treatment.  I am 1A and stage 4.



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Genotype 1A
edmed


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Welcome Perry, keep on posting  and sharing on the forum. I found all the answer i need here on the forum. best of luck with treatment.



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perry


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Hi mate - I,m reasonably sure it will be type 1 ( my brother had treatment a few years back and looking back properly he may well have got it through me with sharing needles - didn't think twice at that stage that I should get tested again). Time will tell. Just have to keep up the running.



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Genotype 3a ; VL 4 million; ALT 168 ; AST 185. recently diagnosed but had it 25 plus years.

02/05/2015 - EOT - 24 weeks of Peg/Riba. VL - und at week 8 . ALT - 26.

Fibroscan - F3

16/05/2015 ; EOT VL Undetected. ALT - 20 ; AST - 35
mallani


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Hi and welcome Perry,

As others have said, keeping fit sure helps with the side effects when and if you start treatment.

You're obviously a Kiwi, so welcome from an Aussie ( although I'm in London at present).

When you know your Genotype, it will be interesting to see what Rx options are in NZ.  There was an Abbott Trial in Auckland, and if you are Geno 1, I think Incivek and Victrelis are now available in NZ.  Have you had a liver biopsy or Fibroscan to assess your liver damage? Fibroscan is available in Auckland, Wellington and Christchurch. Best wishes and keep us posted. Cheers mate.



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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
perry


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thanks mate



__________________

Genotype 3a ; VL 4 million; ALT 168 ; AST 185. recently diagnosed but had it 25 plus years.

02/05/2015 - EOT - 24 weeks of Peg/Riba. VL - und at week 8 . ALT - 26.

Fibroscan - F3

16/05/2015 ; EOT VL Undetected. ALT - 20 ; AST - 35
JIme


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Wow, very cool. I'm sure all that running has kept you from really feeling all the sx of hep c. And it will help you when you go on tx.

I found that when I was on tx I couldn't do very much training. Just short bike rides and a little swimming. Running was tough due to the riba. Many tx today do not use riba. I hope you can avoid it when it's your turn.

Take care!



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jim

GT1a, St2 Lv2 last biopsy 2002, VL  11.4m,  start triple tx 9/30/11

VL 470 @4wks.....VL 22,000 @8wks  stopped tx

Round 2-  Started 3/16/12   PSI-7977, BMS-790052, Riba Undetectable day 14

Did 24 weeks Still UND 12 weeks post tx, SVR24!!!!!!! 2/14/13

 

 

 

 

 
perry


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in the last 12 months I,ve done a 5000km run around NZ in 70 days, a double around Lake Taupo in NZ ( a distance of 310 kms ) in 46 hrs 50 mins, and a 72 hr run around a 4.5 km circuit without sleep reaching 486 kms. I have a 6 day run planned where I hope to reach 950 kms. Done 4 100 mile solo plus other ultras. As sai9d though the body is on kick back at the mo and finding I,m sleeping a lot more plus quite nauseous in the morns. Still I do force myself out the door some mornings but do read how the body is. Loving pushing the message on how exercise has a positive effect on mental wellness - just have to remember it myself



__________________

Genotype 3a ; VL 4 million; ALT 168 ; AST 185. recently diagnosed but had it 25 plus years.

02/05/2015 - EOT - 24 weeks of Peg/Riba. VL - und at week 8 . ALT - 26.

Fibroscan - F3

16/05/2015 ; EOT VL Undetected. ALT - 20 ; AST - 35
JIme


Guru

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Hi Perry, staying fit can do wonders for coping with hep c. I had it for over 35 years and I probably got it the same way you did. I found myself getting more tired the last 2-3 years and I was lucky enough to get cleared last year. I now have tremendous energy and I am back training almost to a normal level.

I've done a few IM's, a 50k, and a 100 mile relay with 2 other people but my goal is a 100 mile solo. Which ones have you done? I love being out in the woods by myself just running along. That's freedom to me.

Stay as healthy as you can and be ready in case you can get on tx. Good luck!

__________________

jim

GT1a, St2 Lv2 last biopsy 2002, VL  11.4m,  start triple tx 9/30/11

VL 470 @4wks.....VL 22,000 @8wks  stopped tx

Round 2-  Started 3/16/12   PSI-7977, BMS-790052, Riba Undetectable day 14

Did 24 weeks Still UND 12 weeks post tx, SVR24!!!!!!! 2/14/13

 

 

 

 

 
news


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Keep us posted, perry. And try to remain cool, calm and collected. There is a chance you have one of the easy genotypes. But no matter what, somebody around here will have some experience to share with you.

Alan



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Geno 1A  Started Pegasys/Ribavirin/Incivek Nov. 20, 2011 .  Completed July 28, 2012 (36 weeks). For a treatment history, see:  https://jshare.johnshopkins.edu/xythoswfs/webview/_xy-9921874_1

SVR on January 14, 2013!!
perry


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not sure of the genotype yet. Dr did further tests when I told him about abdominal pain and my alt and ast  came back reasonably raisedMy viral load came back just over 4 million and the HCV RNA came back at 6.60 log IU/mL Not sure what the last one means? Hope to have an apptmt with the specialist in the near future so hopefully will know a lot more then? Will check out the clinical trial section as well Cheers



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Genotype 3a ; VL 4 million; ALT 168 ; AST 185. recently diagnosed but had it 25 plus years.

02/05/2015 - EOT - 24 weeks of Peg/Riba. VL - und at week 8 . ALT - 26.

Fibroscan - F3

16/05/2015 ; EOT VL Undetected. ALT - 20 ; AST - 35
Zlikster


Guru

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Posts: 791
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Hi Perry, abd welcome. You will find a lot of good folks here willing to help and give tips n hints

what hcv genotype you have? what condition your liver is (inflamation and fibrosis stage?)

new meds are arriving soon (next 1-2 years) with some extraordinary viral replication inhibiting properties. Just check clinical trial section and you will see a lot of people with some amazing results (undetectable viral load in just 8 days! no sidefx! 12 week therapy lenght etc)

future is indeed bright regarding meds for hcv treatment.

all the best


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GT 3 dg. 08-2012 / FibroScan: 5 kPa F1 / FibroTest: F0-1 A1 / SoC TX: PegInt 120mcg+Riba 1000mg UND from w8 relapse EOT+4w
01-2016 Sof+Dac+Riba UND from w8, SVR24!
Huffy


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Hi Perry! Welcome! I'm pretty new here and to HCV. In fact I'm anxiously awaiting my lab results from my HCV rna quantitive test. I was told I could know by tomorrow. I joined this forum for support and to answer my questions and it's great!



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24/f. I don't know anything on my condition. Rock Chalk Jayhawk.
perry


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Hi all. I have just been newly diagnosed with Hep C - positive for antibodies and Viral load just over 4 mill. I know I would have got this about 23 - 36 years ago when battling Heroin addiction and the symptoms have just been picked up througha routine checkup with the Dr. I am 58 years but have kept really fit over past 15 years running now approx. 200 km per week although there is a bit of tiredness creeping in. Don't know the type yet but have been referred to specialist so that should happen in near future. I,m sure I will get plenty of great information here - have to deal with it and get on with life - still have a few more ultrmarathons to run!!



__________________

Genotype 3a ; VL 4 million; ALT 168 ; AST 185. recently diagnosed but had it 25 plus years.

02/05/2015 - EOT - 24 weeks of Peg/Riba. VL - und at week 8 . ALT - 26.

Fibroscan - F3

16/05/2015 ; EOT VL Undetected. ALT - 20 ; AST - 35
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