Need advice about TX

[ann_h]

I have just had my 3rd liver biopsy.1st one- grade 2 stage 3,2nd one done 3 years later-grade 3 stage 2 and now that last one says grade 1 stage 1.My doctor is insisting I go on treatment.50 years female.I did rebetron many years ago in a study,responded very well,could not maintain TX after 12 weeks because side effects were so bad.As I told my doc then,the TX is far worse than the disease and Im not doing this aymore.How is it my liver stats have gone backward,my viral load is 5mil.It stays in the 1-5 mil range.Liver enzymes are normal all the time.And I am mad as hell because I dont want to fell like **** again w/Pegasys combo.I need to hear back from ya'll in making my decision.Hubby says I can quit my job. do not want to quit my job.I love my job!!BTW,My dad passed from Lung Cancer in July and I have been dealing w/that and my grieving 82 year old mother who is devastated.And fighting w/my greedy family over the will and care of my mom.Thanks ya'll,let me hear back please.Ann

[v eggie dip]

wow, sounds like you have a lot on your plate right now, sorry...I won't give you advice, and would not, for I am not a Doctor, but I can tell you this: I just had a biopsy done yeterday and if it comes back as grade 1 stage 1 I will NOT treat...I will hold off as long as I can while waiting for less toxic drugs to come along...

Best of luck to you with whatever you decide

Beth

[ann_h]

How is it my liver has seeming repaired itself.Going from a higher stage and grade to a lower one???? Have they changed the staging criteria in the last 10 years? I am so completely confused.

I am NOT asking for advice from a Doctor.I have plenty of those.

What I AM  asking for is ideas,thoughts,comments from you guys that are on Peg  and copeg for feedback on what you are experiencing and your thoughts on SX andhow to deal w/them.

My doctor is very cool and open to whatever I say,ask for,demand,etc.I have done research and studied for literally years.I did Daniels list for Years and decided a couple of years ago to stop the research.

I guess really my question is in additon to the liver grading and staging going backward is..Has the treatment gotten any better at  curing and sustaining the disease and have the ides gotten any better???

Thanks and God Bless us all! Ann

[jmjm530]

My advice is to keep doing whatever you've been doing as your liver seems to be healing itself. Viral load fluctuates so wouldn't pay much attention to that. Who knows if the healing provess is from past treatment or what, but it certainly should be reassuring.  

Unless there's something important not mentioned, there's absolutely no reason you have to treat as a stage 1 with better drugs hopefully around the corner. Especially given your prior tx history and quality of life concerns.

Above all, make sure you are very comfortable with whatever decision you make. It's not my liver or your doctor's -- it's yours.

-- Jim

[jmjm530]

Our messages crossed so just got your second message.

Generally, the new combo treatments cure about 50% of geno 1's with 48 wks tx and 80% of geno 2's and 3's with 24 wks tx. Side effects per individual are probably not as bad as the old days but they vary considerably per person.

Some here, seem to fly through treatment working full-time with only minor changes in their life. Others, cannot work, spend most of their time on the couch or sleeping and basically live like zombies. Most of us are inbetween. I'm entering my 32nd week and have been unable to work and probably fall toward the zombie category most of the time. :)

So what's new are higher cure rates, RELATIVELY fewer side effects, better drugs to handle anemia and Neuponia sp? (Procrit and Neupogen). What also is new are some exciting drugs in trials -- the protease inhibitors -- that give lots of us hope. Especially those like yourself with little or no liver damage who have the option of watching and waiting if they so choose.

-- Jim

[SJL]

This is my third week on Pegasys maintainence. We have responded to this forum in the past. ( 2 rounds of therapy-48 wks. of Peg-Intron/Riba--------52 weeks of Infergen/Riba. Cleared on both-but relapsed.) On the Infergen treatment, my last 5 mths. VL showed no virus. Three weeks later---12,300,000.

My ast(393) & alt(420)have risen drastically with the Pegasys Maintainence-My Hepatologist stated that either my body is fighting extremely hard or the Maintainence (.9) is not working and the ramifacatons of the drug can cause serious permanent side effects. We are doing this third week of Pegaysys now, another VL and a Hepatatic Panel. If this continues he advises to quit therapy of any kind. 1B,grade 3, stage 4 disease on biopsy,significant disease.
No evidence of hepatic decompensation.

Any comment?

[cuteus]

that is a significant difference! how long after the tx was the 2nd and third biopsy? There are some studies that have documented fibrosis reversal with treatment even if SVR is not achieved. It could also mean that the samples were taken from different sections and who knows what it would be if they took another sample from the exact same section as the first biopsy.  
SVR rates can vary from the 50% average, going up or down, depending on other factors, such as age, liver damage, etc. The older the person gets, the lower the chances at SVR with the current protocol. The new drugs are too new to offer much on SVR rates and damage reversal or if factors as age can affect their effectiveness. If you are comfortable living with hcv, and adjusted to it, and comfortable in the latest biopsy result plus having no significant hep c related conditions like arthritis, kidney problems, etc., then keep the status quo.
I could not be at peace knowing I was carrying an infectious agent in me, and getting older with each passing year thus reducing my chances of a cure. I chose to treat at stage 1.
Bye bye HCV.

[jmjm530]

Sorry maintenance may not be working out. As you may be aware, maintenance therapy is somewhat controversial anyway. Personally, I don't know all that much about the in's and out's, but what your hepatologist says makes sense. Why risk further damage?

If he does take you off maintenance, keep a sharp eye out out for upcoming protease trials for prev non-responders. I'm guessing your body could probably use a good rest from the drugs for awhile anyway.

Please keep us updated on what your doctor says and how you're doing.

-- Jim

[cuteus]

it angers me that this virus can be so unpredictable at times and yet that unpredictability is so predictable! I hate this virus, I am not sure what its purpose is in the big picture.

As a stage 4, how does one cope day after day, especially when the current meds, which is all that is available, are not helping?  How do you deal with the fear, the worry, the despair?

I hope this forum and the members bring some solace to your life, and hope that the new drugs ARE around the corner and effective on non responders.
be well

[jmjm530]

I think one just copes and looks at the bright side. Even though I think I'm a stage 2-3, for all I know I may be a stage 4 as well and am still far from SVR.

While stage 4 is cirrhosis, sjl has no signs of decompensation meaning he's probably in one of the beginning stages of cirhosis. People can go on functioning normally for quite some time with compensated cirrhosis even without treatment. Hopefully, the newer drugs will be the answer to folks like sjl. I think we have every reason to be optimistic.  


-- Jim

[Forseegood]

Although you've gotten some good advice here, I'd also look at the fact that different docs can give different readings on the same biopsy. If you do a search on biopsies you'll see various studies on this particular subject and some of these studies indicate that biopsy grades can be off as much 1 and even 2 points 20% of the time. They probably would be far more accurate if they were allowed to do a few more pokes into the ole liver at different angles, but I don't think many people could withstand that unless you were completely knocked out, etc. - at least I'm not volunteering for that anytime soon. Still, all and all, it's the most accurate diagnostic tool we have at the present time for this.

Just to give me more info, I'd try to do one of the various blood marker tests as well as the biopsy (they are working on Fibroscan as well, but I understand that they only have these devices in Los Angeles and only a few other cities.)

I'd be pretty happy if I were you, it's sure a lot nicer to hear it's gone down than up. If you read through all the threads, you'll read lots of varying opinions on the new drugs coming up, watching and waiting and/or vitamin and lifestyle regimens, retreating, the lot. Good luck to you.

[ann_h]

1st biopsy-1996
2nd biopsy-2002
3rd biopsy-2005

I have developed Rheumatoid Arthritis
I have diverticulitis and have had 2 trips 1 week each to the hospital to be treated IV 24/7 w/Flagyl and Cipro, demerol every 4 hours

Since my arthritis came to life about 3 years ago,I have gotten a depo-medrol shot everymonth to control the pain in my hands.When I began Thisdepo-medrol treatment,my liver enzymes leveled off to normal,they were never elevated much anyway.I also take plaquenil for my arthritis and that seems to keep my viral load at bay..sometimes under 1 mil,sometimes up to 5 mil.

I eat alot of fruit,drink wheatgrass juice and vegetable jiuce when I can,nothing white,upon digestion anything white turns to glue in my system.Eat some steamed veggies,alot of shrimp and artichokes,watermelon,SOME pasta,alot of oranges and any other fruit(high acid) that is in season.Right now pomegranites are in season and I am craving them.I drink alot of Smart water.It is  a water enhanced w/electrolytes.

Cuteus,what your post said hit home the most,can you tell me in detail just how different you feel and how you felt on treatment and the SX..did you work,do you have kids,what did you do during the day,schedule,exercise,diet and anthing eles you can think of please..Thanks guys,I really appreciate your input and time!!!

[ann_h]

Sorry guys,I realized that I was not clear.I have just gotten out of the hospital,that is 2 times this summer.One time last summer and he told me that next time,he was removing part of my colon.

Okay,thanks again for the info and input.Ann

[NYgirl]

Oh I missed that you had your biopsy somehow!  God I hope it has good info on it and you don't even need to treat right away or something.  Then maybe the doctor/insurance situation will work out and you won't have such a pain in the neck to deal with!

Best of luck Ann.  You know you are in the right place here. The guys have some much wisdom, I dont know what I would have done without them. I really dont.

[v eggie dip]

thanks for your kind words Debby, it's appreciated :)

Beth

[GoofyDad]

Man sjl, you're really having a rough time of it. My hat is off to you for what you've put into this so far. 2 Years of TX! Wow. You should wear it like a badge.

I have very limited knowledge, but FWIW, here's what I see. You've responded. Twice. Hopefully your liver got a chance to repair a bit. Possibly a good bit? Let's hope. It sounds like  maybe you were slow to clear? I think a reasonably accepted rule of thumb is to treat for 3x as long as it took to clear. If the maint doesn't work out, can you take a break and give another whack at SVR with standard treatment? The virus responded, but some were hiding somewhere.

[cuteus]

ok...I have a little synopsis of my stats at my home computer, ready for cutting and pasting, but I am not at home...so, I'll see what I can remember because blissfully, I can't remember how crummy I felt on tx. The feeling itself. I do remember not been a happy camper, but the tx was manageable, just too long for anybodys like.
I was dx in 2003 by a rheumatologist that was trying to find the reason for my arthritis like symptoms. I had bilateral carpal tunnel syndrome (don't know if hep c related but suspect so), herniated disc, and joint pains here and there.  I was 51, stage 1, low viral load at the time, normal enzymes always, loosing hair, teeth deterioration, nails not growing, etc. I mention the latter symptoms because at the time, I did not see a hep c connection. Now that I am negative, and my nails and hair have normalized, I suspect there was one. MY teeth continued to suffer unfortunately.
I did 72+ wks of meds, became anemic around month 2, got Procrit and Vicoprofen for pains. The two staples that got me through tx. I got some skin dryness and thinness(always had dry skin) and that was my most disturbing condition at the end of tx. Was tired and achy, but having a  desk job, I was absent maybe once during tx. I wanted to call in sick almost daily, but it was not bad enough to do so. I am a single mom. Have a now 16 yr girl at home. She has stated that she was only worried about me the day we went to Six Flags and I had to ask for a special pass to the  rides due to my anemia. Other than that, she said I gave no clue that it was bad for me. I had been taking a cardiokickboxing class at the Y two times a wk and I was able to continue that during the 18 mo of tx, with a short bump in the road due to the anemia. It felt as if my muscles were straining to death. After the Procrit, it was a less rough ride.
Treatment is not fun, it is manageable for the majority of folks with the help of knowledgeable drs that are willing to work with you. My PCP was a big help when the GI was not. You can not do it alone. You need the dr's cooperation and your family and coworkers tolerance(although I chose to tell only my supervisor and a couple of friends).  
After tx was over, my anemia resolved 3 mo post, my hair finally stopped falling to almost 0, my nails are growing, I did not get any colds or flu while on Tx, did not loose or gain wt, got nice long eyelashes. Compensation for the crummy feelings, I guess. The best part is all the negative PCR that show the bug is gone. Virological cure some call it. I will call it that when I get a biopsy and it shows no active hcv. Then I will declare myself cured.
You are having so many symptoms already, I don't see tx making you a lot worse. My aches are not as bad as during tx and maybe not as bad as before tx, now that I think about it. You really need a flexible dr, willing to monitor your existing conditions and intervening promptly with medications rather than with dosage reductions.
Read a lot, inform yourself well, decide what you want to live with (Hcv and extrahepatic manifestations or a relative short tx with a shot at a cure), and be  comfortable with the choice.
I wish you enlightment.

[ann_h]

Ya'll are such a fine group of people.Thanks for sharing and answering questions.

True,I have had a difficult summer.I have felt so bad for so many years whats one more thang? Lol

I am still on the fence about treatment but ummmmmmm still no decision.

God Bless us all!

[SJL]

I saw my hepatologist on Mon. My hepatatic panel looked worse than ever. AST(393), ALT(420), ALKALINE PHOSPHATASE(150). His first comment was it's time to quit maintainence. After we talked and I to;d him I had committed to 4 wks., just to see what happened with counts, he decided to do a VL and a hepatatic panel one more time. I did these today and will see him again next Mon.

I hate to throw in the towel after almost 2t yrs. of treatment. I have told myself from the beginning that I would conquer this disease. He feels that interferon can cause serious damage if it is not working on the virus.

As for a trial, I understand that it would be in cocktail form as HIV is. In other words it would be in combination with 2 other drugs. Do any of you know anything about this? By the way I am F, 62 yrs. Not that this should make any difference, other than I would like to be younger. I have alot of living to do!!

[jmjm530]

Sorry to hear about your viral loads. My own brain is a bit of mush at the moment and it's hard to make any definitive comments because I can't remember your complete tx history and stage of fibrosis.

That said, and assuming that the decision to go on mainteance was correct in the first place, your doctor seems to have a good point. The benefits of mainteance  is controversial anyway, so if it's not working, why continue? These drugs potentially are very toxic.

The trials he's talking about are the protease inhibitors that will  probably be offered initially in cocktail form with peg and/or ribavirin. Later, possibly as monotherapy.

To my knowledge, all current trials are for tx naive patients but this could (and most probably will) change any day. So if you take this route, do you research and keep your eyes open for these trials, especially the Vertex trials.

If you a "watch and wait for the trials" route, I  certainly wouldn't call this "throwing in the towel". It sounds like you've given it your best shot with the current drugs. So look at giving your body a rest to fight another day with hopefully better drugs
as a smart battle plan, not a white flag. All the great generals have used strategic retreat as a potent weapon before finally conquering.

-- Jim