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Hep C Discussion Forum -> On Treatment -> Entering week 29
Post Info TOPIC: Entering week 29
Fajah


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RE: Entering week 29
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JoAnneh,

Your symptom list matchs up with me perfect, same thing I am at week 17 now out of 48.  Dropping Incevik was good and all my 12 wk labs are und.  I am 59.

Just went on a trip to Hawaii to visit a Son stationed there and his older brother came out, what a drag to be in Hawaii and barely make it from a swim back to the car without acting and panting like I had just ran a 10k or something.

My Boys knew what I was was going through and were very understanding.

48 weeks, hell, call it a year.  I guess it does beat the alternative.

 

Fajah



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Fajah You know, the Father, Freaky Deaky Dutch

186,000 miles per second (299,792,458 meters/sec), not just a good idea, its the law.
iggle


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Malcolm - Incivek is a pain in the ass litterally, but I would definitely prefer the 12 weeks to 44. The large amount of pills and alarm clocks is definitely a major thing. One of the best things about finishing incivek was no more alarm clocks! Hang in there, you're one of the captains around here.

JoAnneh - I have a lot of the same side effects as you. I often feel out of breath just taking a short walk, I am paler than ever, I've had a lot of dizzy spells, my hair is falling out, and my brain is pretty foggy. I will say that for me the past 3 weeks or so I can tell that my anemia is slowly improving. Hopefully yours will improve as well. Finishing incivek was tremendous for me too, and things overall have been so much better since then.

Just 1 of these meds alone has enough bad side effects for us to deal with, but combining three of them at once is an ass kicker. I consider myself a fairly tough guy, but this tx has almost made me crack a few times.



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Shep


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Hey Malcolm--you are truly a trail blazer and completely amazing. You are a true treasure---29 weeks is truly something and I will be cheering for you the whole rest of the way!

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Diagnosed 1996 genotype 1b VL alot tx starting 12/23/11 Victrelis UND week 8!!! 28 weeks of tx

Completed tx 7/6/12--still UND!!!!
JoAnneh


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I am on Triple tx w Invicek. Yes we improve greatly after Invicek. Invicek causes rectal issues, sores on tongue and painful rash. I finished Invicek 2 months ago. And sx improved greatly but
Now after 2 months I am having dizzy spells and extreme anemic.
I can't do much walking before I am out of breath!
My hair is coming out and I have 48 weeks total!
I am pale pale pale and have gained 14 lbs. eating is only
Thing that helps the dizziness. I am 53 and always had an active life.
My memory is foggy. Maybe extra sleep will help!
I can't imagine 18 pills a day!!!! I am relieved that after Invicek finished,
I only have RIBA twice daily.
Michaele, Did u google interferon to find info on it
Or do u have site I could read?
No matter what I still have 23 weeks after Friday!:)
So glad for formun and sorry for whining too much
As one suggested..... Liver transplant or medicine!
No brainer! Love to all, JoAnne


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JoAnne

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

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


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mallani wrote:

Every day is different, and boredom is just a state of mind...

 Yep, just a state of mind...and soon a memory.

Your steps forward just HAVE to be a little easier, when you can look back on Und's at weeks 8, 12, 16, and 24.  You, of all people, know how huge THAT is.  It would seem that each additional week you go just adds a little more insurance.  That's a good place to be.

See you soon in the SVR club!

Brad 

 



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


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Hang in there Malcolm. At 29 weeks, I think you are definitely blazing a new trail.



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Geno 1A, VL 1.9 mm, SOT 12/2/11 - Pegintron/Ribavirin/Victrelis, UND since wk 8, EOT 6/15/12 (28 wks), SVR 11/30/12
mallani


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Hi Michaele, I'm OK. Every day is different, and boredom is just a state of mind. It's a struggle, but I don't have the option of going on a transplant list, so this is it. Cheers.



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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
Michaele


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Hi Mallani, all your info has been a blessing. We are similar in age and stage, but Im not a man. So I'll use the sex card to say Im so afraid of this Tx. I know we discussed some of the pros and cons of this and ,yeah do it or end up on a donor list. I can deal with side effects but the interferon is the scarriest thing Ive read and I just cant get the cardiac complications out of my head. I'll be living alone , and may live 6 mins from ED but what good is that if my heart gives out and Im alone? Im going to talk to the Dr about this as soon as they call me to come in. My Dr is  a  GI, do I really need to change to a hepatologist? She is the Dr I was referred to when I asked to be referred to one.  I do trust her, but........... Anyhow, how are you doing? From what you said it doesnt get easier, has it gotten worse for you, beside the boredom?  I am  cheering for you and your lady.     Michaele



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mallani


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Hi Murat, if you look up the Prescribing Information at the Victrelis website, you will see that the 48 week duration (with 44 weeks Vict.), is standard for cirrhosis. My doc. attended a Meeting in the USA two months ago, and it was thought that even F3's should be treated for 36 or 48 weeks. As liver fibrosis progresses, liver perfusion drops. It is thought this is why the F3's, F3-4's and F4's have progressively lower SVR rates. It's all about delivery of the drugs to hepatocytes via the hepatic artery and portal vein.

As I said in another post, worrying about SVR rates is not productive. I am happy to have the chance of cure, but just wanted patients to consider all the options, if they need long duration Rx. Cheers- thanks for the interest.



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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
cmerduran


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Hi Mallani,

Can you explain it with more detail? Did your doctor prefer you to use victrelis for 48week instead standart 36week? Is there any study about advantages of streching victrelis usage to 48 weeks?

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Murat
28.07.12: HCV-RNA +, VL:7.1m, 1b
02.08.12: incivo-riba-pegasys started
24.07.13: HCV-RNA: WEEK 3, 12, 24, 36, 50 UND(SVR!!)
*all men have fears but the brave, put down their fears and go forward... sometimes to death, but always to victory.
mallani


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From looking at previous posts, I appear to be the first to be doing 48 weeks of Victrelis triple (i.e. 44 weeks of Vict.). There are some others following so I'll blaze the trail. For those unlucky enough to be doing 48 weeks, I make the following suggestion.

As you are F4 (possibly F3-4), the Sx will be significantly worse. SVR rates for Victrelis and Incivek are similar. From reading posts, for Incivek patients, Sx improve after the Inciv. is finished ( i.e. after 12 weeks). The Sx of the Victrelis triple continue for the full duration and may actually worsen. The heavy pill burden of Vict. is also a factor. Sorting out the 18 caps/day into various containers becomes a headache producing chore, and the alarm clocks for the 4times/day pill taking continue for 44 weeks. These seem minor things, but patients get increasingly wornout by Rx.

Victrelis is still a relatively new drug, and the long term effects have only been studied for a few years. Incivek is similar. I would prefer to take the lowest possible dose.

If you have a choice, I would pick Incivek every time for long-term Rx. (my opinion only).





-- Edited by mallani on Wednesday 26th of September 2012 11:08:36 AM

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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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