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Post Info TOPIC: To treat, or not to treat
LC


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RE: To treat, or not to treat
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I think my biopsy was between 1-2, my viral load was quite a bit lower than yours, and I have decided to wait on treatment;  but I would agree with those who say it's a personal decision best discussed with your Dr. 

I figure, I have had this disease for probably close to 30 years, so would my body (and level of suffering) be worsen by waiting until what is expected to be here in 2014 is available or by enduring the drugs currently available.  confuse 

Maybe I am being a wuss with this thought, but I really hate the idea that I would more than likely make myself sick by going through treatment when I'm not sick now. 

http://expertscolumn.hubpages.com/hub/Interferon-Free-Treatment-for-Hepatitis-C



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Genotype 1a, VL 1,151,923.  51 years old.  Started treatment on AbbVie TOPAZ II clinical trial Oct 10, 2014!  Undetected at weeks 2 and 4! 



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Hi theresmile i waited 2 years before starting treatment, and i wish id just started as soon as i found out i had the virus! living with it & worrying about starting was far harder mentally than the treatment its self. i thankfully did clear the virus.

good luck whatever you decideconfuse

xxx



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Lift the hearts of those around you, share the goal that's in your sight. Keep strong, if i can do it anyone can! tx finished virus free :))))



Guru

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Hi there Wendi, I`d just like to add a few words too...I can see the attraction of waiting for new drugs to be available but on the other hand from a psychological viewpoint there`s a lot to be said for getting on with tx as soon as you can.  Many of us have found that once we`ve taken that first shot we get a great sense of relief that at last we`re doing something positive to combat the virus rather than having the constant worry about how much damage it`s causing.   As Malcolm pointed out, the sx do vary in intensity from person to person and many people are able to carry on with their usual daily activities throughout their tx, taking more rest in the evenings and at weekends.

We all have our own opinions on this but at the end of the day you need to learn as much as you can and weigh up all aspects of your options, together with the advice from your doctor.

Best of luck, keep in touch!  smile  Jill xx

 



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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.

 

 



Guru

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Hi Wendi, Krowdog has summed it up nicely. You've obviously had a biopsy to have your inflammation Grade, and fibrosis Stage. There's not a lot of difference between Geno 1a and 1b. If anything, the 1b's are doing slightly better on the current triple Rx, and are doing much better with the newer DAA's. The SVR rate for a young female with F2 should be higher than 70%. (with current triple Rx). Depending on your early response, the rate could be as high as 90%. Deciding whether to have Rx can only be decided between you and your doctor. Get as much info as you can, and realize that side effects from current drugs is very variable. In general, young people like yourself have fewer side effects, so if I was you, I would have Rx now.



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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



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Hi Wendy, welcome to the forum.

I was asking the EXACT same question a year and a half ago.  I (was) geno 1a, which has about the same cure rate as your 1b.  Like you, I was also a 2/2 on my liver score.

I went ahead and treated.  I got lucky, and cleared the virus.  But I still have some residual interferon side effects, mostly sore joints even 8 months post tx..  This is improving slowly, and I expect it will resolve.  It is not debilitating, just a real pain, especially in the morning.

*However*, these newer drugs had not been developed, or at least weren't spoken of.  Had I known what I know now, I would probably have waited the two or so years for this new class of inhibitors to get approval. But I would have kept a very close eye on my liver.  I would have treated immediately if my liver was progressing into stage 3.  I would have had that checked often.

One possible reason to treat now would be the status of your medical insurance.  These drugs are VERY expensive, so if your future medical insurance is in question, that would be a big incentive to treat now.

Oh, and the stage after 2, stage 3, is not considered cirrhosis, that is stage 4.

Take your time and continue to study, as you have been.  Things are changing daily on the hep c front, and with enough knowledge, hopefully your  choice will become obvious.

Best of luck to you,

Brad



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(Geno 1a, Incivek Triple Tx, 6 month post TX - 9/20/2012 = SVR!!!)



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i agree i had almost no fibrosis but stil i went for treatment...i must say that i was very scared,and the first 12 weeks are hard duo to telepravir...but after those 12 weeks its going much better, less sx and stil UND to boost my motivation...in my case i had to do it i could not live with the tought of having this desease,and limitations and not having a beer at vriday night after work!! hahahahahahaha



-- Edited by bauhaus76 on Friday 14th of December 2012 12:14:48 PM

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hep c 1a on triple therapy with incivek UND at week 12 ,week 24...going for 48 weeks.



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Just to add  my

Triple TX with Incivek cure rate officially is 79 pct.

As Guru Malcolm said, -  young female with 1B, F2, would be probably even better ...

On one side you face likely 24 (maybe 48) weeks of toxic TX with SX, but a great chance of full eradication of the virus.

On the other, at least 2 more years (until new better meds may be available) of uncertainty, living with a daily concern of whats going on with your liver and whether there is more damage being done.  

 



-- Edited by Bouba on Friday 14th of December 2012 10:43:19 AM



-- Edited by Bouba on Friday 14th of December 2012 10:54:56 AM

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58 yo male, HCV since 1981. Gen 1B (IL28B, CT). Diagnosed 1999,  VL before tx 100'000. Biopsy A2, F3 fibrosis. Naive, SOT (with Incivek) Oct 26, 2012. UND @ week 4, 12, 18, 24, UND 12 and 24 weeks post-RX



Guru

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I say treat now. But that's just me. There is a lot to be said for waiting for new, less invasive drugs to come out. But I would want to get started right away. A month after my diagnosis I was already starting treatment. And it seems to have worked. If you are able to do this now, from a job and family standpoint, I think you should seriously consider starting now. Let's see what the members have to add. I have a feeling most will say wait till the new meds come out. 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!!

wkt


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Hi...I introduced myself a little over a month ago just after diagnosis. I have a lot more information now, and I'm looking for advice. I believe that I must've contracted Hep C 24 years ago when I had a blood transfusion at the age of 12. I have genotype 1b, stage 2/grade 2 biopsy, elevated liver enzymes, viral load of 2,114,750. 

I'm just wondering if it's really worth putting myself through treatment. It sounds awful and I'm completely terrified. From what I can tell, genotype 1b is the least likely to respond to treatment especially if I've had it for so long. I just hate to make myself sick with triple therapy for only a 70% of SVR. Advice???



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Guru

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No advice from me but I'll tell you what I did. I did triple tx w/Incivek last fall. I did 7977 this year starting in the spring. There is no comparison between the two tx. I had virtually no sx on 7977. On triple tx there were many. That's my exp. If it was me, being at Stage 2, I would wait for the 7977 if I was healthy besides the hep c. Good luck. ( I guess I did give advice, sorry )



-- Edited by JIme on Friday 14th of December 2012 03:32:51 AM

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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

 

 

 

 

 



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Stage 2,  is fibrosis, the next stage is cirrosis. I may be wrong( not too sure about g1b) you have to ask your Dr. I would treat ASAP.



-- Edited by joe oil on Friday 14th of December 2012 01:58:28 AM

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58yr m/G 1A/ VL 9,000,000 / F 3  / STARTED TRIPPLE TX (Incivek)7-14-12 / UND WK-4-8-12-16-20-24-36- 48- 12 weeks post tx UND. SVR 1-10-14

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