Misery level

[Ziffel]

Tonight is the end of week 7 of triple therapy with Incevik.  The misery level is far worse than I imagined.  I cleared the virus on day 20 and this is my 3rd round of treatment since '96.  Question for those having completed week 12.  Does it get any easier after the Incevik is finished?  41 more weeks of this ...... I just don't know...

[banarep]

did three rounds myself and the third one was on telaprevir and yes it does get better once that is done.  not a great deal, but better. 

[Cali]

Hate to see you give up Ziffel...whatever it takes do it, it doesn't get better.

Cali

[greyrocker]

One day at a time, don't look at how much longer there is to go. It just drives you crazy if you fixate on the end; just get through the day. Get up, do it again.

Time to get as tough as you can. It's so worth it when it's all over.

greyrocker

[relay]

Undetectable! since day 20! you are already getting better... that virus is no longer hurting you, your liver is already starting to heal. The misery is very real and gets redefined as the treatment progresses. But we must also redefine our spirit and our strength. We must collect ourselves and know that today will pass and tomorrow will come and the pain reminds us we are alive.
I was doing just dandy with my treatment (SOC) till week 9 when I met this new misery and needed to evaluate the whole situation... It's been rough, as rough as I've known. It's changed my life and It's changed me... It's made me questioned me!
I can honestly say that without the help of some very dear people I would not be taking my 12th shot tonight.
So, I propose to you that on my good days you lean on me, and on my bad days you're there for me but let's kill this virus.

 
gabe

[greyrocker]

Undetectable! since day 20! you are already getting better... that virus is no longer hurting you, your liver is already starting to heal. The misery is very real and gets redefined as the treatment progresses. But we must also redefine our spirit and our strength. We must collect ourselves and know that today will pass and tomorrow will come and the pain reminds us we are alive.
I was doing just dandy with my treatment (SOC) till week 9 when I met this new misery and needed to evaluate the whole situation... It's been rough, as rough as I've known. It's changed my life and It's changed me... It's made me questioned me!
I can honestly say that without the help of some very dear people I would not be taking my 12th shot tonight.
So, I propose to you that on my good days you lean on me, and on my bad days you're there for me but let's kill this virus.

 
gabe

This is exactly what I'm talking about, Ziffel. Try to follow Gabe's lead.

Well said, bro! 

GR

[Ziffel]

I am so lucky.  I can't imagine what it must be like to go through this alone. My wonderful wife carries me but she can't help my fear.  I think the hep C was a gift from the Army from the air gun with the Swine flu vaccine.  For the next 20 years I tried to find out why I was so tired.  Found out in '96 and the interferon didn't work.  So, I ignored it.  In 2002 we tried interferon and Riba, didn't work.  So, i ignored it.  Two years ago found out I was stage 3.  Now I'm doing the triple therapy and it is working.  So many thoughts.  I am so lucky, not alone, only stage 3, I'm alive.  My life long best friend died in August, heart.  I'm alive! 
This treatment has two (or more) components, physical and mental.  I can take anthing physical you can dish out.  But mental, a lot of people depend on me and pay me well to be a very smart person.  I am a senior engineer.  Almost rocket science.  It took me 40 years of continuous work and school.  Yes, I am so lucky.  I am so so lucky.  I am so blessed.  The problem, I can't think right now.  Simple math is almost impossible and my world is far beyond that.  What to do?  No one has the answer. 
So, i am fearful, thankful, miserable, thankful, depressed, hopeful, thankful, worried, thankful.

Funny, on the mental assessment form I fill out each Dr. visit I circled 4 under thoughts of suicide and then erased it and circled 0.  They didn't think it was funny.   :-)

[Feb4]

Hi Z.
I think I got mine from the pneumatic vaccine guns in the army as well back in the 70's.
I'm currently in week 7 of the triple treat with the big"I". I too have a stressful job that requires me to speak in round table conferences and I know just what you mean when you try to focus or do math. It seems like when I put pressure on myself to perform like I did before treatment it just makes my mind worse. I keep thinking everyone around me knows somethings wrong and are staring at me because I mis-spoke. I've found that if I relax and don't put that internal pressure on myself it is much easier to concentrate and speak. It may take an extra second or two sometimes for my mind to catch up but that's to be expected. As long as I speak slowly and don't let my mouth outrun my thought string everything comes out OK. I understand what your going through but it is normal for us and it will pass with the treatment and things will return to normal. I think trying to be the same as we were before we started treatment is futile. We just have to relax and take the ride the best we can. Good luck to you on yours. Your not alone.
F4

[greyrocker]

I liken it to trying to accommodate your temporary disability. Your mind is not on par with you as you were previously, not is it on par with your expectations. You have to develop strategies, adaptations...ways to minimize the negative impact of that deficiency, if you will.

Ultimately, and beautifully, this too shall pass. If you reach SVR, it is so worth it. Words don't do it justice, but again, it is so worth it.

  be with you

greyrocker

[Judith]

I finished taking the purple poison 2 weeks ago and my rash/itch are finally better!!!  Honestly it was worse than any other pain I've ever had, even childbirth or a herniated disc. It was a form of torture to be constantly itchy and nothing helped (tried EVERYTHING) except taking enough meds to make me sleep. It had an impact on my mental state as well. I was not myself at all! I bought things that I have no memory buying or talking to someone and forgetting that we spoke. 

I'm on the triple therapy (+procrit + neupogean) and now that I'm off the incevik it is much better....not perfect but for me manageable. I would have gone insane if I didn't have the wonderful people supporting me here. We are all here for one another! 

[alice]

Ziffel,

thinking was the worst for me. I had a highly tehcnical job and I got paid to think, too. How much longer do you have left? Can you tough it out for the remaining weeks/months or would it be in your best interest to do some project reallocation? It was obvious to all that I was physically sick so I did not meet resistance when I asked to have some projects reassigned temporarily. I also asked a trusted coworker for some moral support during a couple of nasty meetings. One of the last things I did at my job was lead a 4 hour panel discussion/training session and give one of the sessions at a technical conference. Even tho my brain wasn't functionally optimally, i don't think anyone in the audience knew I had been struggling and things went quite well, actually. Like me, I suspect that you still know all that stuff you spent all those years learning... don't sell yourself short. Seriously, you might notice it but others might not notice it as much as you think because people have their expectations and, to them, you're still "that smart guy". Plus, it is temporary and it will come back.

On the other hand... I wouldn't joke with my doctors about suicide. They're likely to take that seriously, particularly if they are familiar with the depression that often accompanies interferon. As the others have said, things do improve after the Incivek. Hang in there.

alice

[banarep]

Wow,  I too feel that I got my hep c from the air guns used when I went into the service back in 71.  (that or the meth I did later - but think I will claim the airguns). 

Like you, I did the same rounds of treatment - old, SOC and finally a clinical trial with telaprevir - that worked.

I am a teacher, so I had to be on top of things every day while on treatment.  I work at a upper level private school that would not allow me to give the students busy work, etc, so I had to be on my game every day.  And it was, at times, very difficult to do that.  And I earned a second masters degree while on my last treatment.

What helped me was getting as much rest as I could get, drinking lots of water and continuing to exercise when I felt up to it.

You just have to slow down a bit, and realize that you are going to have to be a bit more methodical then you once were.  But it can be done.

[Nookster]

Hey Guys,

Me too on the airguns.  !970 in the Marine Corp those long lines of inoculations where if you moved just slightly it ripped your skin and blood was shared all the way down the line.  I can't put my finger on blood to blood anywhere else in my life.  I think its something the VA really doesn't want to acknowledge.

[Nookster]

Ziffel,

That magic word "undetectable" is what I think of when the going gets extra rough.  Hang in there Brother, you've got this.

[3timerlapser]

Ziffel, I'm doing the triple this is day 2 of my 7th week (4th round of TX)  like you I'm und at week 4 it is a tough road but you have traveled it 2 times before and you will make it to the end of this one too. your story sounds allot like mine i relapsed 3 times I am stage 3/4 on the bubble of stage 4 I will keep up this battle and promise my friend that I will battle the  right beside you
Sgt Nick Corso US Army 62 E30  555th Eng Bn