Aa
Aa
A
A
A
Close
280736 tn?1294198374

To treat or not to treat

I finally, 5 weeks later rec'd the results of my genotypes test. I am 1A. I have no symtoms, I am 54 next month and I figure I have had this for at least 30 years. My wbc are 3.8 but no other symtoms. I am scheduled for a liver biopsy in mid Nov. I am wondering do I really need to risk having this procedure? I am healthy! What are the chances that the doctor's will not put me through treatment? Do I have to have the treament?  What criteria do doctors look at? Do they ever conclude that treatment is not needed because there are no symptoms. Thanks if anyone can answer my questions. Sandy
28 Responses
Sort by: Helpful Oldest Newest
280736 tn?1294198374
bopsy report: Chronic Hep with mild inflamation and preserved Hepatic architecture, Knodell's score 3(1,1,1,0) Ishak fibrosis score 0 of 6  Focal macrovescular steatosis.An iron stain is negative. Also, my ast and alt are both 33 u/l
Helpful - 0
Avatar universal
Sorry, my last post was intended for another thread.

As to the trial, not sure why I'd want to be in any trial with little or no liver damage -- esp one that appears in the very beginning stage. You have to remember that trial doctors get their trials funded by filling them with people.
Helpful - 0
Avatar universal
As a foot note -- I'm convinced that just about anyone can be cured of HCV given enough drugs for a long enough period of time. The point is at what cost? Risks versus rewards again. There's probably a very good reason the longest trials appear to be 72 weeks. Why no trials for 2, 3 or 4 years on full dose meds? It's because of the risks of the treatment drugs. The trend, thankfully, is toward shorter tx drug exposure, not longer.
Helpful - 0
280736 tn?1294198374
RO5014583. Polymerase. inhibitor. you can google it. Trial tested on animals, people without HCV, people with HCV, this is second test on HCV patients. with pegasy and copegus some ro5014583 placebo. I really leaning toward passing on this one.
Helpful - 0
Avatar universal
First, congratulations on what seems like  a very good biopsy result. Guessing from Dr. Shiffman's letter, sounds like you're probably stage 1, which is minimal damage. That said, you should request your own copy of the biopsy report to confirm.

So why does Dr. Shiffman think a 54-year old asymptomatic, genotype A1, should treat? Probably because he feels you're better off   treating now while you have minimal liver damage, and are still relatively young. He's an excellent doctor btw from what I've heard.

That said, there are a couple of  caveats. First, he says " But it is mild and final decision is up to you" which is quite different from what he might have said if you for example had significant liver damage. And the second was " will have our study coordinator Kim Williams contact you about reating this in one of our studies utilizing an anti-viral agent (experimental) along with peginterferon and ribavirin

So in essence, what he appears to be recommending is for you to treat in a trial situation, with an "antiviral drug", perhaps Telaprevir, perhaps something else.

If it were me, in addition to getting hold of the biopsy report, I'd try and get as much information about the proposed trial as possible. Hopefully there is a written document that includes it all. Things to look for in a trial might include: (1) What is name of the experimental drug and the doses; (2) How many "Arms" in the trial and what protocol will each Arm follow. One thing to look for here are any placebo arms that might not include the drug. Another thing to look for are any Arms without ribavirin. Arms without ribavirin don't appear to do as well, and (3) do they allow helper drugs such as Procrit in the trial, and if so, at what point.

Cant really comment on a trial I haven't seen, but from the trials I've seen so far -- if I were a geno 1 with little or no liver damage, I'd wait out the trial phase and jump in when I felt comfortable that the trial results warranted the risks of the treatment drugs.

In any event, you need more information -- your biopsy report and trial specs. Then I think you can make a better informed decision.

Congratulations again on  a good biopsy report.

-- Jim
Helpful - 0
280736 tn?1294198374

jmjm, see email from Dr below, why do you think he says treat?  Also, I found info about the comment you made about women,slow HCV, it was women on HRT which I am on now for about 3 years, probably one reason why.

Reviewed your slide this afternoon.  You have mild HCV but there was a
small amount of fibrosis present.  Not very much, very slight.  My
recommendation is to treat.  But it is mild and final decision is up to
you.  I will have our study coordinator Kim Williams contact you about
treating this in one of our studies utilizing an anti-viral agent
(experimental) along with peginterferon and ribavirin.  She will not be
contacting you until late Jan or early Feb when next study will start. You
can think about what you would like to do until then.  Any questions -
e-mail me back.....  But I think we covered almost everything in
office....

MLS
Mitchell L Shiffman, MD
Chief, Hepatology Section
Medical Director, Liver Transplant Program
Virginia Commonwealth University Medical Center
Richmond, VA






Helpful - 0
280736 tn?1294198374

jmjm, see email from Dr below, why do you think he says treat?  Also, I found info about the comment you made about women,slow HCV, it was women on HRT which I am on now for about 3 years, probably one reason why.

Reviewed your slide this afternoon.  You have mild HCV but there was a
small amount of fibrosis present.  Not very much, very slight.  My
recommendation is to treat.  But it is mild and final decision is up to
you.  I will have our study coordinator Kim Williams contact you about
treating this in one of our studies utilizing an anti-viral agent
(experimental) along with peginterferon and ribavirin.  She will not be
contacting you until late Jan or early Feb when next study will start. You
can think about what you would like to do until then.  Any questions -
e-mail me back.....  But I think we covered almost everything in
office....

MLS
Mitchell L Shiffman, MD
Chief, Hepatology Section
Medical Director, Liver Transplant Program
Virginia Commonwealth University Medical Center
Richmond, VA






Helpful - 0
Avatar universal
I'm sure Shiffman will tell you that it's not necessary to treat at this point, although I'm sure he'd give you the option. Curious to what he has to say about the "focal steatosis", so let us know. Also, if they are available, try and pick up your entire biopsy slide set (the original slides) on Friday and bring them with you to your Schfff appointment. If not, Iwouldn't worry as I'm sure he will request them if he feels necessary.

Happy Thanksgiving and glad your family has this little bit of xtra to be thankful for this year. That really is wonderful news and I do remember reading that there is a minority -- usuallly women -- who can have hep c for many, many years with no fibrosis. If my memory serves me correctly, they tend not to progress very much at all, which leaves them the luxury of waiting.

-- Jim
Helpful - 0
280736 tn?1294198374
Thank you so much! I am so excited.. although it has been 30 years not 50 I just turned 54 :) We are so excited. My children have worried themselves sick. I had to tell them all so that they could be tested. All negative and husband too. I wish these results for more people too. This is just the grace of God. Happy Thanksgiving to you too. I go to Shiffman on Monday. I let you know. Sandy
Helpful - 0
Avatar universal
The key element is "stage 0", meaning no liver damage. You could not ask for a better result. Congratulations!

You also show very little activity (grade 1) which is also excellent, but less important. As to "focal steatosis identified" that would have to be quantified and explained to you by a liver specialist (hepatologist) in the context of your whole biopsy report -- but my guess is that it's nothing to be worried about since you are stage 0. That said, if the steatosis is significant enough (the report does not say) a doctor might suggest some measures such as diet or weight loss if pertinent.

Given your genotype (1A), your biopsy report, and the fact you've probably had this for over 50 years -- my personal opinion is not to treat, but to adopt a "watch n' wait" approach. Of course, discuss all this with a liver specialist (hepatologist).

Congratulations again. It's the kind of biopsy most of us would wish for.

Best wishes and a Happy Thanksgiving,

-- Jim

Helpful - 0
280736 tn?1294198374
I have my results of biopsy.. I think they are good. Chronic Hep, consistant with hep c with minimal necroinflamatory activity grade 1 and no increased portal fibrosis satge 0 with focal steatosis indentified. Can you enlighten me on this info? I can scan and email the full results if you can provide me with your email address? If not, can you ellaborate on this info? Thanks Sandy
Helpful - 0
280736 tn?1294198374
One more thing, I have been on antipiotcs for the last 10 days or so and this may have changed my blood test results and being off the wellbutrin. I keep trying to figure things out. Thanks again, Sandy
Helpful - 0
280736 tn?1294198374
What can I say.. I have no symptoms... I am on Prempo Hormones so night sweats stopped but blood test 2 years ago at 52 showed I was in menopause. Average American women are 52 for Menopause. Seemed normal. I work 40 hours a week outside of home. I am a couch potato and I could do more. Lately I have gained wait. I was dieting but after diagnosis of HCV I sorta said what the heck! I think I have gained about 8 lbs in the last 2 months. I feel bloated but I credit this to eating too much. I was on Wellbutrin. but I stopped taking it 2 weeks ago and my blood work has improved. Not sure about ALTS  I do not know my viral load. ? I hope to have biopsy results next week from the biopsy yesterday. Thanks for the message. I will try to take note of my fatique. As I think of it.. after work and after I clean up dishes.. Not much else gets done during the week. Thanks again Sandy
Helpful - 0
233616 tn?1312787196
it's hard to believe no symptoms, I think the biggest symptom was fatigue/sweats/sleep trouble.
almost everyone has one or more of these. with fatigue, it creeps up over years and you just think, it's age....suddenly you have to push to do anything..and realize every activity is cut short by the energy plug getting pulled..but it happens over many years, so many don't recognize it's not just normal fatigue.

like everyone said, get a biopsy to determine where you are at. I went from general abdominal fullness with some discomfort to severe pain and swelling all within a year so sometimes a drug they put you on can accelerate your fibrosis or you just get to the downhill stage of the game.
you need to know what stage of the game you are at before reaching conclusions as to whether to treat now or wait. there are reasons for each choice, but without proper tests the decision won't be a quality one.  stay in here and get the education of a lifetime, and welcome.
Helpful - 0
280736 tn?1294198374
Thank you for the quick response. Jmjm is correct I will have the lb from the first dr and then Shiffman emailed me to bring the slides with me. Thank you for the suggestion to tell them I need them and how to retrieve them. I hate being pushy but I am finding out with this first dr's nurse I have to be forceful. One other reason I do not want her dr to treat me. Thank you for telling me there are more than one slide. Although, I probably didn't really want to think about that the night b4 the biopsy. I am a little nervous. I am sure it will be fine. Thank you both for the reassurance with Shiffman. I need to have faith in a good dr. Your replys are much appreciated. I will keep you posted. Sandy  
Helpful - 0
Avatar universal
You're welcome :-)  Shiffman didn't biopsy me. He is the doc who cured my friend and I attended 2 of her biopsies. She had her results from him within days. I think you're right that Sandy is having her biopsy with the gastro.
Helpful - 0
Avatar universal
Thanks Susie. Didn't realize that Shiffman biopsied you. I think Sandy is being biopsied elsewhere and then will see Shiffman for the consult. Alternatvely, I suppose Sandy could get the biopsy from Shiffman, but not sure how that would work logistically or insurance wise.

-- Jim
Helpful - 0
Avatar universal
Jim did such a good job, I have nothing to add except the best thing you can do is see Dr Shiffman at MCV. I have been there twice at biopsies he has done and he makes it very easy. He is a wonderful doctor and you can't go wrong using him as your hepatologist.
Helpful - 0
Avatar universal
Glad you got such a timely appointment.

Why don't you contact the pathology department directly, and ask how long until your biopsy report will be ready, and probably more important, how soon you can pick up the slides. You might tell them your appointment date to get them moving a little faster. Also, if there is any paperwork to fill out, you might get that in advance. If they won't deal with you directly, then you'll have to do the same through your gastro's office, but I'd try direct first.

I say getting hold of the slides is probably more important because Schiff will probably have his own pathologist look at them anyway. So don't let the process get held up just because the original pathologist hasn't finished doing the report yet. They can always be returned if necessary. Lastly, make sure you get the entire slide set -- around 4-6 slides. The first time I asked, they handed me only one slide and that was inadequate to get a proper second evaluation.

Let us know how things work out with Shiffman.

All the best,

-- Jim
Helpful - 0
85135 tn?1227289772
It takes about 2-3 months from the first positive test to taking your first shot. Lots of time to wait and worry  ;>)
Helpful - 0
280736 tn?1294198374
I emailed Dr Shiffman a few weeks ago, late one night and he responded at 10:30pm. He had his scheduling dept contact me and worked me in for next week. Normally, it would have been Jan. I go this Thurs 11/15 for liver biopsy with gastro dr and then I will take my slides to Shiffman. I found several friends he has treated and I have heard nothing but good. Thank you for prompting me to contact him and not to settle. I am curious how long does it take to the results of the biopsy? Did I mention both of my parents had cancer of the liver and pancreas? Is there always going to be a time when I am waiting for test results?  Thanks agoin Jm Jm
Helpful - 0
Avatar universal
Substantial agreement with all Jim said.  There is nothing to decide until you get an evaluation.  Once you get one you'll get more tests.  In addition to the biopsy you might consider getting a Fibrosure II test or similar.  They'll be doing other LFT tests anyway and it may provide a more well rounded picure of the state of the liver.  It is a simple blood test and inexpensive enough that you can continue to monitor your condition perhaps even annually.  They are considered to be about 85% accuracy of a biopsy.  They cost about 300 dollars and mine was about 25 bucks after insurance; not bad.

I particularly echo Jims assessment that if you treat go with the best doctor you can get.  This is no place to scrimp on what is convenient or cheaper.  

Use this board to search for answers to questions.  You'll find that questions such as what you've asked get asked often and there are many different and valid ways making a decision.

Personally I am waiting for a bit.  There is risk in doing so but there may also be some rewards in doing so that make the risk tempting to me.  Due to the nature of HCV and the varied condition of us all in a group of 100 people that will be a good decision for some and it could be a potentially very poor decision for others.  How does one tell what group YOU are in?  Go see a great doctor, get your tests........and start reading.  : )

best,
Willy

Helpful - 0
276730 tn?1327962946
Most of us  have NO symptoms at all. The only way to know is have a biopsy done. You can feel great and have damage to your liver with NO symptoms.
JIM SAID IT ALL.

Thats why there are MILLIONS of people that have this with NO symptoms.
Please have a biopsy done-This way you can know for sure.




This is a silent killer like mostly every other disease out there.
Helpful - 0
Avatar universal
Hi, Biopsy is a must in order to assess your liver damage.  I have had this for 38 years and I never had a symptom.  My biopsy was a walk in the park and it showed my damage at grade 2, stage 2.  Not great, but not so bad.  I'm 59 so I decided to treat     before I get toomuch older and my situation deteriorates.  I'm 24 weeks into a 48 week treatment and I have cleared the virus at 8 weeks.  jmjm530 said it all accurately and eloquently and you can trust what he says to be true.
Helpful - 0
2
Have an Answer?

You are reading content posted in the Hepatitis C Community

Top Hepatitis Answerers
317787 tn?1473358451
DC
683231 tn?1467323017
Auburn, WA
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Answer a few simple questions about your Hep C treatment journey.

Those who qualify may receive up to $100 for their time.
Explore More In Our Hep C Learning Center
image description
Learn about this treatable virus.
image description
Getting tested for this viral infection.
image description
3 key steps to getting on treatment.
image description
4 steps to getting on therapy.
image description
What you need to know about Hep C drugs.
image description
How the drugs might affect you.
image description
These tips may up your chances of a cure.
Popular Resources
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.