Poor results on 12 week PCR :(

Hello to all. I was told this morning that my 12 week pcr indicates that I am not responding well to treatment.  Initial viral load was 320,000 and it has reduced by less than a third.  I live in British Columbia and Pharmacare will no longer cover the Peg/Copeg.  My private plan will still cover 70% of costs.  My doctor said I now have a 3% chance of clearing.  She also said that I may be a slow responder. Should I continue to treat?  I am 56 year old female, 1b, low viral load, not overweight, no alcohol, drugs.  Any input would be very much appreciated.

[jmjm530]

Sorry to hear the news. You understand that none of us here are doctors but if you give us a little more information maybe we can throw some ideas at you that you can discuss with your doctor.

Do you know exactly what your pre-tx viral load was? Also, did you have a biopsy and do you know what stage liver damage you have? What drugs did you treat with and what doses? Did you stop taking the meds at all? Was this your first time treating? What kind of side effects have you had so far and were any drugs such as Procrit or Neupogen prescribed?

-- Jim

[suzieq2]

Hi, I am 52 yrs. female with start vl of 1 million. 12 week 475,000,week 24 175,000, week 36 75,000, week "42 375,000."I am 1b minimal fibrosis and inflamation (inflammation) at starting biopsy. I was so determined to beat this that I continued. In hind sight I would have stopped at 12 weeks.You have a 2% chance of svr.With minimal liver damage I think I am going to wait for a better drug.Keep close tabs on my lab work and try and stay healthy. Not sure what my next step is yet. I had myself convinced that if I did everything right, I would clear. I didn't work and won't on peg/intron/riba.I wish my doctor would have reccommended to stop at 12 weeks. wishing you the best.I know it's hard to admit defeat on this first round.I had to accept being a nonresponder and find the positive in that. My only regret is, going through this for to long.

[virtualsuzyq]

Thanks for your quick responses.  Unfortunatley I started tx without a bx.  My viral load was 320,000.  I have been taking Pegasys and copeg at the appropriate amount for my weight (137).  My alt results were always near normal.  I did not have side effects from treatment for the first month.  I now have fatigue, sinusitis, sore mouth, cough.  Nothing I can't handle.  My blood work has remained good.  I take ad zoloft for prexisting depression.

[virtualsuzyq]

Further to my previous entry, this is my first time to treat.  I have not missed any medications at this point.

[cuteus]

you have a lower chance of SVR with the current standard of 48 wks, thats what that 3% refers to. Some studies suggest that extending beyond that time might increase your chance for SVR. It is hard to tell what you should do without knowing what state your liver is in. In my case, I did not clear at wk 12, had a 1.82 log drop (from PCR of 3 months prior) and fought to go longer, 72 wks. At my last PCR, (10 mo post tx) I was still negative. I am not sure what log drop one third is in your case. Is your viral load aroung 100,000? for a two log drop you needed a 3,200 viral load. If you continue, you should do another PCR in about a month to see if it went down or not. Maybe an increase in copegus dosage could bring an improvement. SOmeone here increased his and got a negative test after that. How flexible is your dr?

[jmjm530]

If you had minimal liver damage like Suzie, I'd lean toward suggesting you think about stopping treatment and adopting a watch and wait approach.

However, since you didn't have a biopsy the extent of your liver damage is unclear and the decision is even more complex.

Did the doctor's do any other tests prior to treatment like a Fibrosure test? Did they discuss with your pre-tx platelet count, your INR. Do you know your exact pre-tx ALT and AST? Did you have a liver scan and what did it show? All these things can give a good clinician an indication of liver damage but it's not the same as a biopsy.

Anyway, based on the information at hand, it's really hard to say whether you should continue or not. But if do continue, you will need to either extend treatment beyond the 48 weeks and/or change the treatment drugs or doses in order to give yourself a decent chance at SVR.

Your next goal would be to get non-detectible as soon as possible (certainly by week 24)with with PCR's as frequent as your insurance allows. Once you're non-detectible, one formula is to add 36 weeks to your treatment.

So for example if you're non-detectible at week 20, you would treat for 46 weeks. But again, you're responding very slowly to the existing drugs so to further your progress consider upping the dosages and/or switching to whichever peg you're not currently using.

The kind of extended/agressive individualized tx described above is not practiced by most doctors. Therefore, you probably would want a consult with a hepatologist who treats agressively.

All the best luck and if you decide to stop treating, a biopsy probably would be in order to help guide you in the future.

-- Jim

[jmjm530]

Third paragraph from bottom should read:


So for example if you're non-detectible at week 20, you would treat for 56 weeks, although some doctors may want to go even longer based on your slow response.

[RobBetz]

Everyone and jmjm530,

you all know my story...178,000; type 1b, bio was 2/2, age 25, cleared at week 12 probably even 4.....I take my 24th shot friday night (50% done)..I want to extend tx for 3 extra months....can anyone provide articles and stats on this...thx all for your support these 6 months and continued support for my next 24 shots and beyond...

Robert

[jmjm530]

It was confusing the way I originally wrote it. Meant to say if he wanted a biopsy in the U.S.A. that Afdhal's team is a good one. Just question why come all the way here when I'm sure they're good doctors in Europe.

[virtualsuzyq]

Thanks for your response.  Did your viral load increase while you were still on treatment?  When did you finish tx? How are you feeling now and how is your alt, etc.  Many thanks

[LvdByGod]

okay i see, so you were suggesting a biopsy? yeah, i didn't see that. ok! so does anyone have any extra zanax they can send my way? LOL

[virtualsuzyq]

Thanks for all the info.  I have a lot to think about!

[jmjm530]

You're the guy with the nice lookin' eyes. :) Wondering when you'd show up again. LOL.
======================

Not sure what the question is. Are you saying you want to extend 3 months past 48 weeks, meaning total tx 60 weeks? Or, are you saying you want to extend another three months beyond your 24th shot which would mean a geno1 short-course tx of 36 weeks?

If it's the latter, you're probably referring to the European Directive which states similar SVR with 24 or 48 weeks for geno 1's with low pre-tx viral load and who are non-detectible at week 4. What are now being called "super responders."

You say you "probably" were non-detectible at week 4, but I don't think "probably" cuts it. So unless you're having major problems with tx, the prudent thing would be to continue the traditional course which would be 48  weeks based on being non-detect at week 12.

-- Jim

[scubadiver30]

Sorry to barge in.
Hi cuteus. I was wondering if I can have talk to you thru messenger or thru email???. I'm doing my best in trying to make the do a bx but is not working so far... Maybe I would like to travel to the states in a few months in order to get a fibrosure or a bx and maybe you can give me some info on how to do it if I have no referring doc in the US???.

Gracias por todo y disculpa la molestia :-)
El buzo...

[jmjm530]

You might want to consider Dr. Nezam H. Afdhal, MD at Havard/Beth Israel Hospital in Boston.
He's one of only three researchers in the States using Fibroscan, and as you've already had Fibroscan, it's possible he may take a personal interest in your case. What I'd suggest is to email him all your particulars starting with a brief overview and then including all bloodwork and test results. You can find his email and more about him here. He's one of the best in this county.

I'm sure Cuteus and others will have additional good suggestions. You may need more than one lead depending on logistics, costs, etc. Things can get pretty pricey w/o insurance and I don't think a Fibrosure test alone will add much to your knowledge.

http://www.gastroenterologyweb.com/board/afdhal.html


-- Jim

[LvdByGod]

if he came all the way to the states why on earth would he prefer a fibroscan to a biopsy???

[jmjm530]

Maybe I wasn't clear in my answer. I believe Scuba already had a Fibroscan in Europe, so yes, the only reason to come here would be for a biopsy. I only mentioned Fibroscan because Dr. Afdhal is doing a study comparing biopsies to Fibroscan and therefore may be interested in the case. I hope this clarifies. That said, I'm surprised Scuba can't find a doctor to biopsy him in Europe, if that's what he wants but I really don't know all the details.

-- Jim

[LvdByGod]

sorry jimbo, i'm getting way too upset about this biopsy thing...i guess cause i'm out of zanax ;o)...any way, you know what i think of fibroscans. i guess i'm just getting too worried about the folks here that will think they're safe but may find out later they are not, because of trusting in a fibroscan. from what i've read it doesn't sound like a good first choice for finding out what shape your liver is really in...i personally would never trust it for my treatment options...and i worry about folks who do. call me a worrywort...but i can't help it...

hey have a good night jimbo...

[Tyree2005]

Hi LvdByGod,

I am having my first biopsy on December 1, and starting by treatment soon after that Peginterfe/Copegus.  You answered one of my posts last week.  I was having trouble with my insurance but it has been all worked out with lots of phone calls.  I do not understand if my energy level is already low how I am going to make it through the treatment.  I am so tired now.  I have put in for Family Medical Leave with my job so if I must be off they can not say anything.  I have also put in to be off for the first two weeks of treatment to see how I do.  Is this a good idea?  Where I work in order to get a parking space you must get here by 6 am so I leave home at 5 am and get out of bed at 4 am.  Also I live alone and for my first shot I am staying at my sister house she is a nurse.  Its funny trying to prepare myself for this treatment and not knowing what I am preparing myself for.  I have lots of leave on my job and also short and long term disability. Can you think of anything I should do to prepare my self or just wait, and wait, and wait, and wait, wait, and wait, and wait, and wait, wait, and wait, and wait, and wait, wait, and wait, and wait, and wait, wait, and wait, and wait, and wait and wait, and wait, and wait, and wait?

[scubadiver30]

Hi again..
Thanks Jim for the response and the name of the Dr . I just was making some plans in order to do a bit of holiday travelling in addition to the biopsy. And another thing. If I have already seen 3 doctors (2 social sec, 1 private) and they have not insisted on bx I'm afraid visiting a fourth will get me the same response. I'm amazed one of them even did the Fibroscan (cause I didn't qualify for it in the beginning)..He just sees non responders & co-infected patients. I'm naive.
Spain is part of the first world, but still not top of the line, medicine wise, if u know what I mean ;-) Is like comparing HBO with PBS.lol
I've been trying to get a Fibrosure or Fibrotest over here, and there's no provider. They're all in the States..So If I'm going to go ahead with tx I would like to have different opinions and from the broadest range possible. I will write this doctor to see what he says.
Once again thank u very much for you answers...
saludos
scuba

[LvdByGod]

good for you scuba that's a great idea...hope you find the answers you need...

jm, i think perhaps you missunderstood me, i was trying to be apologetic in my last post for getting so freaked out about it and not understanding your original post...

i hope you understand...sorry if it sounded otherwise, that's not how i meant it.

[jmjm530]

Just to be clear, I'm not actually suggesting a biopsy or not having a biopsy. I'm just giving Scuba the name of a very good hepatologist in the States should he want to come here for a biopsy as he suggested in his original post. If I remember correctly he already saw 2 or 3 doctors in Europe who advised him otherwise but I really don't want to get into that debate. Hope this finds you well.

-- Jim

[landfill]

I don't think you'll need time off in the first month.  The fatigue and crankyness only come after a few weeks.  The only thing I felt after my first shot was that I woke up shivering, put a blanket over myself, and slept through the night.

A lot of people get through tx with annoying but not disabling sx.  You may have an easy time of it.  I got to my desk job every day without too much trouble.  I finished 48 weeks in 8/03 and I'm SVR.

[Snookmiester]

You and me both had about the same stats going into tx.. Young, low vl, fibrosis, etc.
I did 48 weeks, and as of one month post, CLEAR..

I know your in Central Florida, but take a drive down south and set up an appointment with Dr. Schiff. That is who I went to when thinking about tx extension, and he advised me AGAINST it. I'm sure he will say the same to you. Again, our stats are basically the same. He can also hook you up with a Fibroscan, to test liver stiffness.
It is VERY hard to get in, but there are ways!!
Lennox Jeffers is also very good and well respected in terms of hepatology, and in the same office.
Bring your biopsy results, labs, geno, etc. Write EVERYTHING down, and rack the minds of the best.

If you need numbers, hook up with me and I can give you contact info for both.

[cuteus]

GREAT news! on your way to finish your battle with hcv!
good luck!

[cuteus]

good luck on that biopsy, hopefully is mild damage results.

as mentioned before, you might not be hit with bad sides until anemia sets in a few wks into tx. I took my first Pegasys shot at the drs and then drove for about an hour to my bf's house. Made dinner and generally felt nothing out of the ordinary. Be ready for both reactions but hope for the zero reaction to the shot. Maybe you can let them know that you might not need the leave but would like to have that option open.

Things are falling into place nicely for you,

best wishes to you

[cuteus]

long time no hear from You! keep us posted of your adventures.
be well

[dancegirl54]

I have been traveling out of the country for work. I do read all the posts but still am a little shy about posting.  Thanks for noticing!!!!!

[jmjm530]

Scuba,

Well...what a great idea to combine a little bit of vacation with a little bit surgey...let's call it a vaopsy. LOL.

Seriously, another opinion can never hurt. BTW I'm not 100 per cent sure, but I believe Fibrosure is the American test. The European version is called Fibrotest and you might check out these providers. http://www.biopredictive.com/infos/general_public/where/
There's also something similar called Fibrespect but not sure if that is here or in Europe. Anyway, a recent study showed that Fibrotest (or one of the similar tests) when combined with Fibroscan was more accurate than either combined.

Sandi,

I understood what you meant and I do appreciate your nice words. I was just trying to clarify my position to Scuba that I'm not necessarily recommending a biopsy since his doctors have been so reluctant. However, he seems to be proceeding very methodically in looking for another opinion and I'm sure he'll end up doing the right thing for him.

-- Jim

[LvdByGod]

hi tyree, it's nice to see you again. there is certainly alot of waiting that's for sure!!! LOL! i'm so glad everything worked out with your insurance...and it really sounds like you have really prepared well for treatment...its a great idea to be with your sister cause you won't be feeling well at all durring the first few days...and its really nice to have prepared at work...i pray you won't need it though...

when you take your first shot remember to take a tylanol/advil or whatever your dr recommends for you to take for pain. that will help you sleep and feel better. it feels just like the flu. or at least it did for me...i tossed and turned with body aches from a fevor and couldn't sleep but the tylanol really helped me. i wish i would have taken it sooner than i did but i waited until i was suffering...that was no good.

remember to drink lots of water because these meds can dehydrate you...and some folks say it helps them with side effects (sx). i would also get your eyes checked and a dental check. those drs can suggest help with any issues that may arise and monitor you while on tx...

i am wondering why you feel so tired now?... do you know what stage and grade are you? the reason i ask is that liver damage can make you tired...what is your stage/grade of liver damage? hep c itself can also cause several conditions, including fatigue...so it would be really hard to say if you will feel more tired or not on tx...i really hope you will feel better after you clear the virus though...

if you haven't already, check out this sight below...you will get tons of great info...

http://janis7hepc.com/index.htm

i wish and pray you the best in your treatment...we're here for you...

sandi

[PasoPerson]

Do you take Procrit?  If so, I just found out - after eight Procrit shots - that I should be giving it on another day from my interferon.  One is a bone marrow surpressor and the other is a bone marrow enhancer.

I expect my 12 week report to be skewed as a result of my doing the first eight Procrit shots "wrong".  Grrr.

If this is your case, you have a strong argument to continue, doing your Procrit on another night.  I now do interferon on Thursday, Procrit on Sunday.

Best wishes to you - God bless,
Carolyn

[jmjm530]

As long as you're contemplating a Viopsy (vacation and biopsy combined :) ) in addition to visting historic Boston and Dr. Afdhal, another great Viopsy spot is sunny Miami where you can see another one of America's top hepatologist, Dr. Eugene Schiff. Snookmeister, who just posted a little above, is one of his patients.

-- Jim

[jmjm530]

While I sometimes due as I haven't currently been on a 7 day schedule, I was never told to take my Procrit shot on a different day from my Pegasys. But even if the Procrit does work a little better on an alternate day, I don't think it would at all effect your week 12 PCR if that was your inference. All the best.

-- Jim

[cuteus]

Hola Amigo! Yo estoy en Nueva York. There are numerous hep c centers here. You got the Hepatitis C center in Manhattan (http://www.hepccenter.org/adulthepcpatients.php), very prominent drs there and then you got Mt Sinai, with Dr Dieterich and others in that one. I had gone to Dr David Bernstein in the LOng Island Jewish North Shore Health Systems, he is also with NYU. Published and well known. He is the director of hepatology [phone]. My first hepatologist, Dr Palmer @ liverdisease.com, ordered my biopsy, no questions or ifs and buts. [phone]. You could probably skype them to save some money. Fibroscan+fibrosure seem to be pretty accurate combined, but for my baseline liver info. I would do a biopsy and use the other tests in the follow ups after that. The procedure(bx) was such a breeze for me, it was embarrassing the fear I felt prior to it.
There are tons of studies coming from Spain, maybe you can get into one of them? they do all those tests prior to the beginning of the trials. Check it out?
I am in yahoo. In IM with my MH name plus belleus.  Skype has that name Also. and my email with yahoo same name. Saves trying to remember too much.
It seems like a lot to go through to get an actual view of your liver tissue! My first GI would not even offer one, Dr. Palmer did not even ask if I wanted one, she is a hepatologist.
Feel free to ask anything else.
My bx was done in hospital setting by a radiologist using ultrasound guidance. Less than 5 minutes.
Good luck

[Tyree2005]

Thanks for all the info.  I will find out soon about the liver biopsy on 12/1.  Also my nerves are shot. All this waiting is not for me.  I am trying to keep busy to keep my mind of of things.  My grandchildren will come over and put my Christmas tree up this weekend.  Also I am having a sleep apena test on Sat. I love the holiday and pray that it is fine.  Anyway I will let you all know how the biopsy results are.  Also when I start the treatment. I just thank God for my new family.
Tyree

[Karay]

2 years ago I was on Peg/Rib & my 12 week test results came back high.  I am now on Infergen/Rib and I am very happy to report that my 12 week results were great - NO virus detected.  I'm staying on the meds & am looking forward to my 24 week results.  Its not an easy tx - daily shots are a pain but its worth it.  Good luck!!

[FlGuy]

Will they do both a fibroscan and biopsy when you go in?  Please post on the process when you are able.  I think a lot of folks here are interested in the process and the results.  Thanks.

[dancegirl54]

I had my biopsy already - I'm leaving now to go in - more tomorrow!!!

[FlGuy]

Good luck.  From what I've read it sounds like an easy process.  One of the things I'm interested in is the timing between biopsy and the scan and if they use other doc's biopsy results or if they do their own.  I'm guessing they do one and give it to blind pathologists for independent reviews.  Don't quite understand how a blind pathologist can analyze a core sample though.  I am assuming you are in a test group.

[Snookmiester]

Here is the link for info on the FIBROSCAN trial..
I know your in Florida, so if your interested, I can provide you with the nurse coordinator conducting these trials.

http://clinicaltrials.gov/ct/gui/show/NCT00125762;jsessionid=7B9A50BDD3B8D58EF774A9A51AE7FD7B?order=5

Procedure takes about 5-10 minutes, and is painless. All you feel is a slight tap, which is aimed between the ribs right over the liver.

[FlGuy]

Thanks. What I'm thinking of is to possibly hook up with Schiff et. al. in Miami to get a post-tx look at the health of my liver. 3 months post TX would be March 2006, coinciding with a PCR.  What I want to find out is if tx and virus elimination improved the liver, how much and what I can expect in the future.  I'd be willing to have another needle bx (had one pre TX)if its accompanied by a Fibroscan and of course, no charge to me (Insurance Co won't allow me to go to Univ of Miami).  I'm looking for closure in the HCV chapter in my life.

[Snookmiester]

They only do the Fibroscan, biopsy results must be provided beforehand. They are not going to do both.
Fibroscan cost me $53 as I did not qualify for trial, and visit was $500.

[NYgirl]

Hang in there!  The waiting is just about the hardest part it seemed to me!

I remember I was SO SO anxious to get started and the "old timers" would laugh...and I was like I wonder why?  Well..once you start you'll see too - all of a sudden it's oh boy here I was so anxious and yet this goes on for so LONG a few weeks didn't make a difference one way or the other!

Then you can put all your energy into tx and getting WELL for those grandkids!

I'm praying for good biopsy results for you - we all are!

Debby

[dancegirl54]

I'm having my Fibroscan tonight!!! I am in the study in Boston comparing biopsies and Fibroscans over time.  I'll get as much info as I can

[dancegirl54]

Had the Fibroscan done and also blood work - Proteomics and novel fibrosis markers, they measure protein patterns, etc and may be able to identify degree of scarring. And yes I am in a study, this one has 300 people, 150 from Bos, 150 from St Louis and Duke. You have to have had a recent biopsy, I dont know how recent.

[friole]

Carolyn.
I don't thing you have a problem doing the Procrit on the same day as the Interferon.  The interferon actually suppresses the WHITE blood cells, not the RED.  If you are on Neupogen for the low ANC you are not supposed to do that the same day as the interferon (I am sure, for the reason you stated)- my hemotologist said wait 48 hours. However the Procrit is used to build the red blood cells, and that is what the Ribavirin is suppressing.  Since we take that med everyday, it is impossible to take the procrit on an alternate day.  Hope that helps.

Hey my hemoglobin was at 12.1 Friday (just got the results today).  That is after 2 shots of Procrit, 11 days apart.
Kathy

[FlGuy]

Thanks for the info.  I hope you get valuable information to help you be healthy. Good luck.

[NYgirl]

I do my Epogen the same day as the PegIntron....I always figured since I have to do it twice a week and then also the Peg I would get too confused and perhaps forget one shot if I did not.

And they are both working FINE for me! :)

[PasoPerson]

Hi guys - Thanks for your responses.  Been feeling crummy, haven't been on here much.  I appreciate your responses SO MUCH, because sure enough I am getting mixed up.  I am going back to Thursday night for both shots.

Question:  Is it okay if I did the Procrit on Sunday night, then again on Thursday night?  Or should I ease back, first week do on Monday, 2nd week on Tuesday, etc?  OR WHAT?  

Thank you guys.

Carolyn

[tradwan]

I am having a combo treatment of Ribivirine 400 three times a day and a weekly shot of pegasys. When I started the PCR level was 670,000 and my liver enzymes where three time on average. After three months the virus was undetectable in my PCR tests and the liver enzymes were slightly high. After 6 months treatment, my PCR went up to 2011 and my enzymes to double but my WBC and platelets were very low and my doctor gave me Nupugen to boost it. I am still on medication and am following a very strict diet to stabilize my body status. I dont know what to do and am confused.

[HCA]

You should have started a new thread instead of tacking on to an ancient one.
Where are you-what country?
If you went to undectectable and back to detectable again your treatment is busted and doing more harm than good.
We need to know what kind of doctor in what kind of facility is treating you.