Roll call for Stage 4/cirrhotics

I've noticed more and more Stage 4/cirrhotics showing up on the forum, often anxious about what the future holds for them. We're kind of blazing a trail in a world of our own. Seems most information regarding treatment and SVR rates always has a disclaimer at the end - "except for Cirrhotics".

I'm curious to see how many stage 4's we have here, what genotype we each have, whether or not you have treated and the results. Also where are you now as far as symptoms...compare notes, so to speak.

Genotype 1a
DX 2004
infected 30+ years
Stage 4 Grade 3
compensated cirrhosis

Started tx 1/2/09, doubled dosed for 12 weeks
cEVR at 12 weeks
now on 270 peg and 1200 Riba
week 49/72
est. EOT May 14, 2009

Pam

[franke566]

at last!  Yes, Txd just over 4 years ago but liver closely mirrors yours-compensated-end stage, some edema but little ascites-varices, portal hypertension, ducts fibriotic and 80% occluded- not a candidate for transplant but I'm working on this-oh I'm also 1A tattoo and blood transfusion in 68 so I guess I've been positive since then.  SVR now -a little late.  Diagnosed in 99 waited to Tx too long I guess.  

[newleaf09]

Tall order.

Geno1b
DX 2008
Infected 38 yrs.
Grade 3 Stage 4 - compensated (was)

TX 28 wks in boceprevir trial finishing 6/1/09
URVR
SVR
Still with some IFN SX 6 mos. past EOT

[Bill1028]

Genotype 1a/b
DX 2004
Unknown
Compensated

48 weeks - relapsed between 1 and 3 months ETX
76 weeks followed by 4 weeks tapering down - relapsed between ETX and 1 month
13 weeks - was in placebo group in the BOC trial and didn’t clear at 12 weeks.  The good news is that I will be rolled over into the open label BOC trial.  I’m going through the screening this month and hopefully start in January.

No post tx sides

[yodennis]

Genotype 1A, compensated cirrhosis diagnosed this year, esophageal varices (discontinued prophylactic beta blocker secondary to fatigue, no generalized edema, no ascites. History of cramps, depression, erectile dysfunction, mild anemia, occasional insomnia mitigated by Xifaxan (I have a months supply remaining and it was prescribed for possible very mild encepholopathy) and thrombocytopenia and probable diminished  testosterone level. Probably contracted 30-35 years ago. Failed mono and dual therapies. I have a 30 year history of weight resistance training and play a wind instrument in a band (both elections could be injurious to the esophageal varices but they are my life). I also have 3 children, one teenager and two twin one year olds. I am unemployed with a recent loss of Cobra benefits.....Now that's a long-winded and complicated sentence.

[ejoli]

  Geno 1a
  DX  2006
  Probably infected 30 some years ( I'm 49 now)
  Stage 4 grade 3
   mild varices , mild hypentensive gasterphy
   Low platelets...but not too bad(about 90)
   Mild edema, no ascites

   Treated with pegassys and riba 48 weeks and relapsed 3 months EOT

       Bill1028 - I just started the boceprevir rollover trial. I was in the control arm and still detectable at week 12. I'm 3 weeks in the lead in again.
       We stage 4's have stick together.  :)                        -Libby

[franke566]

I take lactulose syrup by Rx and it has kept me clear of encephalapathy-I even got my license back.  I am an American Indian and play the flute at ceremonies thru-out my nation and I play from the diaphram (and the heart).  What wind instrument do you play?  I've had a couple of small bleeds singing so I stopped that.   I would imagine
playing a tuba or trombone and trumpet would put alot of force against your esophagus and the portal veins between the liver and the spleeen.  Maybe this should be discussed on the Social side-Frank

[Bill1028]

Hi Libby, we can be guinea pig buddies.  You must keep me informed of your progress, especially your 6 week blood test.  You are the only other person that I have heard of that is in this rollover.  What was the reason for your delay of restarting?  

yodennis, I also do circuit resistance training and the elliptical machine about 5 times a week for the last 4 months. I feel fantastic and miss it on my off days.  I lost my goal 15 pounds and I don’t want to loose anymore before treating.  I was concerned about pushing too much blood into my scarred liver.  My hepatologist said that exercise is very good as long as we don’t over do it.  What ever that means.  He did tell me to take it easier when I go back on treatment as I have a history of low HGB when treating.  

[sldb]

stage 4 compensated, geno1a,dx'd 2004, treated 96wks with SOC, SVR  going on 4 yrs. .......Leah

[yodennis]

You know: perhaps I am practicing some denial continuing to lift weights and play music (professional and hard hitting blues via harmonica played passionately) with cirrhosis and esophageal varices (without a history of bleeding yet) but there is so little pertinent "quality of life" information relative to my pathology and consequent co-morbities, e.g., portal htn, varices, cramps, depression, etc. Rather their is a gross response regarding mortality, the blind application of common sense, and living with a question-mark.                                   If I ask a clinician (from an R.N. to an Olympian hepatologist) about weight resistance training or the pressure I exert on stage I get a variety of subjective responses as though such quality of life elections (exercise and performance) are too specific and treated casually. I'm a good researcher, have worked for more than 2 decades as an R.N. focusing on pain management, Hospice care, and too often (scarily) end stage liver disease, and yet there is  a deficit of information regarding remaining muscular and vital while performing with passion  on NY stages.  Just a thought; perhaps best summarized by the question: How much of my life do I want to give up to stay alive?

[Joey_M]

Just a thought; perhaps best summarized by the question: How much of my life do I want to give up to stay alive?

I love this line and think it is something we all need to keep asking ourselves. If we are not enjoying life and solely focused on our medical issues at all costs, that is not healthy.

I think all the benefits you get on stage emotionally, mentally and physically far outweigh any risk to the liver. The brain plays such an important role in healing and staying healthy and is overlooked by traditional healthcare workers who tend to focus only on the clinical aspects. I also am a firm believer in weight training - I did it 5 days a week through the course of 2 treatments even with low red & white cell counts.

[newleaf09]

I think the weights are a good idea if you like doing it.  Exercise increases platelets and helps with bone density, both issues with severe liver damage.  With all the recent talk of trials have you considered checking into that?

[evangelin]

I'm adding my husband to the list.  We have tried all the combinations currently available including Alinia and no treatment has worked.  Joe has lost major amounts of muscle from the last 6 week attempt.(gave up  in Sept.)   He looks greyer and older but is getting around  and enjoying his family .  It is frankly hard to think about putting him through it again but maybe we will get our fight back for Teleprevir.  He is profoundly changed and pretty miserable on the stuff which makes his loved ones miserable too.  We have a senior in high school and a kindergartener .  We had two only children :>)  and won't have long to worry about an empty nest.  For right now, We are enjoying a happier  time and soaking up Joe's personality which pretty much goes missing while on Interferon/Riba.
I'm wondering if it would be better to keep on with HR's supplements and take whatever good times we are granted. Do you remember the game show 'Let's Make a Deal" ?  If they went too far, they could end up with nothing,or worse.  When does a person say,"enough" and just enjoy what they have for now.  If we try Teleprevir, I have to make sure it is Joe's choice to do so and not him wanting to make me happy.  Killing this virus has been my obsession for a long time but I am reading less and trying to spend more time with Joe right now.
Ev

[yodennis]

I appreciate the pertinent responses and the earnestness of this thread. Regarding trials I just lost my insurance this month when it jumped from 300+ to 895.00 a month for myself and one of my three daughters ( I'm unemployed and broke for now). My last and most recent hepatologist and Dr. Dietrich before were aware I was itchy to enroll in a study if it was optimistic but no connection to such was offered. While I  realize insurance per se may not be necessary relative to such studies the inclusion usually requires a hepatologist sharing info, history, preliminary labs, etc, etc. and these would necessitate insurance. Scary not being insured with cirrhosis/varices, etc...d

[GoofyDad]

Stage 4 - well compensated. GT 3a, treated 26 weeks with a strong dose of Riba. Bloodwork crashed on TX. RVR at 4 weeks got me a shortened sentence. SVR 3 years now, but TX took a toll. I went into it quite fit - 3 years later still working on stamina issues - although I'm far from couch ridden.  TX, short though it was, definitely aged me. That I had thyroid cancer after SVR probably hasn't helped.

Bloodwork all looks good except platelets. They are at about 120-130. Possibly showing an up-trend but it's hard to tell. At their lowest (off tx) 1 year ago, then at their highest 6 months ago. Throwing out the 1 year ago low - there's a modest upward trend since SVR. Hepo wants consistent > 150 to call it an improvement - that from 110 going into tx.  

All in all - doing quite well. I bike, kayak and hold down a demanding job, so I sure won't complain. As long as the stewardesses downstairs remember not to ask me to play Twister after 9 PM I'm OK... that and if I can keep from farting in line at the grocery checkout.