newly diagnosed/what to do

52 years old and just diagnosed. Initial infection probably 35 years ago. Very low viral load (11,500 in Sept and 66,000 in October). Genotype 1b; Fibrosure blood test found mild to moderate fibrosis and mild inflammation. Low platelets, but normal ALT/AST. Doctor recommending the 24 week therapy if 4 week viral load shows significant decrease. He also is optimistic for SVR considering the low viral load. Read so many horrow stories about the treatment. Should I: 1) bite the bullet and start treatment, OR, 2) get a biospy and factor that into the decision, or 3)wait for new less toxic treatment-read about albuferon just today, or 4) get a second medical opinion. THANKS

[GrandOak]

As treatment affects each of us differently, I don't think anyone can answer this question for you.  Unfortunately this is one of those decisions you must make for yourself based upon what you are most comfortable with.  

Some prefer to take a stab and clear the dragon from their body, others are satisfied to closely monitor their situation and wait for a kinder more effective treatment to come along.  I know of one advocate who co-leads our local support group that has opted to wait over the past 15 years and continues to wait as long as disease is not advancing.

One thing to consider is that most of the meds in the pipeline do not appear to replace existing treatment, but augment in an attempt to increase it's effectiveness.

While it's sad to hear you have the infection, it's good to hear that you have been blessed with the option of deciding whether to wait or not.

[Kalio1]

Welcome to the forum, sorry about the diagnosis, we all know the feeling. For me, the most helpful thing was to learn all I could about it. My advice is get the biopsy. It sounds like from your post you are a geno 2 or 3? What was your platelet reading? If you have decided to treat, that biopsy info. will help you determine what path you will take during treatment. It will help you decide how long to treat. It is very important that you inform yourself because approachs vary. Some docs don't biopsy 2 and 3 geno, if I had it to do again I'd have pushed for it. I was treating anyway, but it would have helped me to know how LONG to treat initially. As it ended up, I failed the 24 weeks and am doing a year now. If I'd have known through a biopsy I already had early stage cirrhosis I would have treated for a year the first time knowing my chances of clearing it in 24 weeks weren't so good, I would have done a year from the start. Might have saved me 6 months of meds too. I think the best step is finding a good doctor who has lots of Hep C experience, is aggressive in his approach to your battle, and is supportive during treatment with support medications should they become necessary rather from being from the school of thought that you should reduce your treatment medications if the need arises for "rescue" drugs to keep your white and or red cell counts and pain at acceptable limits. Speak to the doctor about this.
There is no rush, take all the time you need until you are comforable with your treatment choices and prepared to make the commtiment to seeing it through. It is a slow moving disease. Besides, waiting on appts. and tests can be a long process itself! It's overwhelming at first, I started with getting ALL my test results copied to me. Keep all bloodwork records and test results from any procedure. If you don't know now how to read them, soon you will know what it all means to you.
Stay positive. You can beat this thing. Having an on top of it doctor and as much info. about your condition you can get is ideal. If I had it to do again, I would have had a biopsy, a CT scan and a Fibroscan if I could get near the machine.



30% -50% of people have no side effects or minimal ones. Chances are you will have some lousy days, but other days won't be any worse than you can handle with some OTC medication.
Welcome to the forum, glad you joined us.

[Kalio1]

PS. I would definately get a second opinion from a good Heptologist if possible.

[slowsouthernstyle]

hey miss kalio.how are you doing today?.slow

[Kalio1]

I'm hanging in there, thank you for asking. I have until the end of February to go. How are you doing? Still performing? I hope you are feeling find and dandy.

[bobbyullc]

this is a decision you will have to make. if you had it 35 years and are only stage 1 or 2 it is very SLOW progressing. you have the option of waiting 2 years to see if the new drugs are ready or close. initialy they should be in combo with peg or riba or both but most likely will shorten the tx time drastically and raise the svr rate the same. most tx's have sides, some mild and some debilitating. a biopsy really is a good idea for all geno 1b's.  
my opinion only...if i could have waited longer i would never given tx a second thought.
if you do tx and are not und at week 4 you still can consider stopping instead of doing the full 48 weeks for 1b,s. you are in an enviable position so be grateful for small favors.
bobby

[sfbaygirl]

As a Geno 1b, you have one of the harder types to treat, that just means if you decide to treat it should be for 48 weeks, not 24 weeks. Having a low viral load means nothing. Some people have low VL and have lots of liver damage and vice versa. VL flucuates. Biopsy is the the gold standard to finding out how much damage you have. If you are stage 1 or 2, you could wait for the new drugs. If you are stage 3-4, you may want to begin tx now. Of course it is a very personal decision. I wish you the best.

If your dr. knows you are a 1b and still wants to treat you with 24 weeks, I would be leery. You need a specialist who deals with lots of Hep patients. A Hepatologist is the way to go.

[Kalio1]

Bobby, He didn't have a biopsy yet. He had a Fibrosure test so I am not positive he has a grade/stage measurment from that. Mild to moderate doesn't tell you enough.

"stage 2" damage is nothing to shake a stick at. You'd need more detailed info. on the specifics of that "stage 2"
if you are stage two but very close to a stage 3 is a lot different than just barely showing signs of stage 2, without a biopsy there is a lot of unknown data missing. Fibrosure doesn't replace a biopsy, although I think it is great to get both.

Stage two is half way to stage 4 which is cirrhosis, that's how I look at stage two. Particularly in someone who has had it 30+ years.

Links, are you having symptoms? Fatigue? Other issues? Any spider nevi? red palms?

[slowsouthernstyle]

you are the sweet one to ask how i am.i still get the headaches and other than that just the normal old age problems.when did i get old?.ha ha.doc says i should slow down dagnabbit i can't get much slower than slowsouthernstyle.sending you some loven.slow

[links1999]

No symptoms at all. Thats partially what makes the treatment decision difficult. Thanks for everyone's responses.

[jmjm530]

Links: Should I: 1) bite the bullet and start treatment, OR, 2) get a biospy and factor that into the decision, or 3)wait for new less toxic treatment-read about albuferon just today, or 4) get a second medical opinion.
-------------------------------------------------------------
All of the four options are reasonable ways to proceed.

1) Bite the Bullet -- Personally, if I had little or no liver damage with low pre-tx viral loads like yours -- if I were to treat -- I'd be tempted to take the short-course 24-week treatment as your doctor recommends. Just keep in mind you have to be non-detectible by very sensitive viral load test at week 4. Because of that, discuss with your doctor the possiblity of stopping treatment at week 4 if still detectible. That would minimize your exposure to the treatment drugs to either 4 or 24 weeks. Otherwise, you would b committing to at least 48 weeks of treatment in the scenario where you were still detectible at week 4.

Also, I believe the 24-week study was done with Peg Intron, not Pegasys, but you might ask your doctor about that.

2. Biopsy -- Biopsy is still considered gold standard, and usually recommendd for geno 1's. That said, some doctors rely on non-evasive tests like Fibrosure, especially when readings are at the ends of the spectrum, i.e. stage 0,1 or stage 4. This is where Fibrosure is most accurate. If you live near Boston or Miami, there's a new non-evasive device called Fibrosure that is in FDA trial. Translates liver stiffness into a Fibrosis score. Might be worthwhile hooking up with one of the doctors involved and getting scanned.  

3. Wait -- Also makes sense. Most promising drug is VX-950. SVR results will be available within the year. Ask your doctor about it and better still, do some additional independent research.

4. Second Opinion -- Always reasonable. I had three before I started to treat. Just be prepared to become intially more confused before some sort of clarity sinks in. The docs all don't agree with each other, to say the least :) Try for a hepatologist at a larger, teaching hospital if possible.

What would I do personally? Probably get another 1 or 2 medical opinions, and wait 6-12 months to take a look at VX-950 SVR data. During that time, maybe get a biopsy or minimally a Fibrosure device test. Then I'd revisit the four choices again. But that's me, it's your liver we're talking about :)

All the best in your decision.

-- Jim

[jmjm530]

#2 in previous post should read in part:

"If you live near Boston or Miami, there's a new non-evasive device called *Fibroscan* that is in FDA trial. "

[NYgirl]

Honestly I don't know how anyone could possibly make a well informed decision without a biopsy.  But - if you do have one biopsy and discover that you do NOT have too much liver damage...make sure you DO followup as it can change quickly.

If it took 20 years to get to stage 1 for example - it could only take 5 years to go to stage 3. It is not "linear" meaning it makes no sense.

I had absolutely no symptoms or idea I had HCV - and my biopsy showed I am stage 3 out of 4.  I was pretty shocked.

BEST of luck!

[links1999]

Thanks again to everyone who responded. At this moment I think I'll get the biopsy and evaluate again depending on results. I read up on the VX-950 treatment and that sounds very promising.

[ejoli]

I also had low platelets as my first symptom. It usually means that your liver and spleen are enlarged. My vl was not real high but I was grade 3 stage4. I wouldn't mess around. You need to get a biopsy.         -Libby

[returntosender]

I would love someone to try this approach: do 2 weeks and look for 1.25 log drop.  If so, go 4 and look for undetectable.  If you get these results continue to 24. If not, punt and wait for something better.  Nothing to lose but the virus.  Maybe your golf game will improve, mine did.  Thought I had a bad swing but really had a bad bug! Bug gone, no pain, swing back, drop trow, press ham, blow lunch - sorry thats not golf thats high school.  Last time I felt OK was high school - we used to say things like that - drop trow, press ham and all that.  Funny to think that you and I, in our fifties have had this virus our entire adult lives!  Something like that could drive a man to insanity - maybe play golf or something like that. Imagine that.  I sometimes imagine that without the virus (I am without it now and keeping fingers crossed for 6 mo SVR) I will revert to the same nut that I was in high school - obsessed with girls and sports and cars - in that order - wait a minute I am that way now, maybe I am CURED! Wait is that a pimple, I am CURED, a freaking pimple! Wheres my gold bond, I gotta kill that sucker!

Oh by the way, good luck and tx is not so bad after you finish it and look back at it.

[ladybug52]

Great decision. I agree with NYgirl. First find out the damage and then don't take the slow progression for granted. Good luck and please post your biopsy results and your decision  with regard to your results. I am genotype 2 biopsy stage 1 grade 2 have probably had this since the early 70's and I am waiting for the "right time" to treat. I'm not as brave as the others.
Nygirl: Meaning I still can't beleive your doing 72 weeks of treatment-you should be the poster girl for fighting hep-c!