different read

Went in a few days ago to meet my new hep doc he is at a teaching school and has much more experence with hep.They read my BX slides that I had from 2001 and said the original report of grade 1 stage 1 was wrong and that it was grade 2 stage 3 well that kind of cast's a different light on things for me.Going to go for another BX in a few weeks.He thinks 72 weeks at higher dose intron.He also talked about infergon but said only half the people make it to 48 weeks and it pretty much hammers the sh1t out of them. Thought I had more time but now I don't know.On vacation for the next 2 weeks in Cali.later

[GrandOak]

Sorry to hear about the mis-diag.  Praying for good findings from new BX and keep us posted.

[NYgirl]

Those are my bx results too. They suck but thankfully aren't the worst.

I don't understand how the results can differ that drastically from one doc to another since it's a pretty cut and dried type thing (don't they look for different things which predicates it being another stage???).

I would totally get another one ASAP before doing anything else.

I think infergen is the kind of medication that you should really only attempt if you have relapsed because the sides can be so completely disabilitating (even compared to Intron).  Treating longer on one med you pretty much know you can stay on...sounds like much better a chance to me than starting a med that is so hard you might not (probably can't) run the full course and have to stop early.

At least this doctor sounds sensible to me.

I'm going to treat for 72 weeks and wonder - why is he advising you longer than regular geno 1s?  I am a DUAL genotype and did not UND at 12 weeks (but did by 24 or I wouldn't be doing any tx) that is why I have to go longer.  Dual geno's have a much harder time getting SVR in the long run.

[Mister beagle bailey]

Sorry to hear that you were missed dx, but now your on the right track.  Don't worry things will work out.
So you in Ca for vacation, my son lives there, it's a great pleace.

Hope you feeling well

Beagle

[friole]

THat is an unbelievable difference in reading your bx slides -- perhaps that explains the relapse a little.  I am so glad you are getting another bx.  Also interesting , the take from your doctor on only 1/2 the people being able to complete the infergen treatment.  I am wondering if half the people who have started infergen and posted here have completed.  I am not sure that they have (no fact there).

Have much fun on your vacation before you settle back into reality
frijole

[mikesimon]

Debate: Are Noninvasive Tests Ready to Replace Liver Biopsy?
Source: Hepatitis Annual Update 2006
By: Nezam H. Afdhal, MD, FRCPI, Mitchell L. Shiffman, MD
see:http://clinicaloptions.com/Hepatitis/Annual%20Updates/2006%20Annual%20Update/Modules/Afdhal-Shiffman/Pages/Page%202.aspx

The major limitations of liver biopsy are sampling error and interobserver variability. A typical core biopsy sample represents between 1/25,000 and 1/50,000 of the entire 1500 g average adult liver and may fail to capture tissue with the most advanced fibrosis or cirrhosis. Smaller biopsy samples are associated with greater sampling error, and error can be reduced by increasing the sample size and the number of biopsies performed.[9] One recent study using computer-generated modeling estimated that a 25-mm biopsy sample yielded an error rate of 25% and that optimal results were obtained with specimens measuring 40 mm.[10] However, another study found that even when performed by an experienced practitioner, only 16% of biopsy samples are larger than 20 mm.[11] In addition to adequate size, a nonfragmented biopsy specimen is essential for optimal results.

Sampling error  may involve either the staging of liver fibrosis (usually inaccurate by a single stage) or the grading of inflammation (usually an underestimation). Autopsy and laparoscopic comparison studies indicate that a single percutaneous liver biopsy misses cirrhosis 10% to 30% of the time.[12-14] One recent study of laparoscopic-directed biopsy of both left and right liver lobes found a discrepancy between the 2 sides nearly one half of the time. In 14.5% of the cases, cirrhosis was reported in 1 lobe but not the other, whereas in 33.1% the 2 lobes differed by at least 1 stage.[15] The sampling error rate for liver diseases that produce less homogeneous fibrosis

[jmjm530]

Probably should add that Afdhal (author of the above) is probably the leading proponent in the United States for Fibroscan -- an non evasive device that which translates liver stiffness into a biopsy grade. Fibroscan is currently in trial in 3-4 centers in the U.S. for FDA approval. Hopefully it will be in doctor's offices within the next couple of years. If so, it would have a dramatic impact on treatment, both in terms of deciding when to treat and in determining how the liver is reacting to the drugs.

As Afdhal states in part -- as well as others -- the problems with needle biopsy are absolute sample size, relative sample size, and pathologist bias. Add them together and a two stage difference can happen. I had the SAME biopsy slide looked at by three different pathologist with a full to 3/4 stage difference. And that was just pathologist bias.

-- Jim

[jmjm530]

should be biopsy STAGE, not "grade" as written in first sentence above.

[Mimi4141]

Airborn's new doctor, Dr. Gish, said that his results weren't as bad as the previous doctor had stated.  

I too would think that it is pretty clear cut as too reading the films, but I guess not.  

While hubby is still stage 4 cirrhosis, Dr. Gish stated that he is at the beginning stage of cirhosis and that he is a great canidate for recovery.  The doctor before him stated he would have never started treatment because he was too high of a risk of complication, and wanted him to discontinue treatment.  My husband is a fighter and refused to give up.  Within a few weeks we had another doctor, Dr. Gish!  

From what I've learned, you need to stay on top of the game.  If a doctor doesn't do what he should be doing and starts to get negative we switch doctors.  Airborn has gone through 3 doctors in the last 7 months.  I hope doctor #4 will be the one we stay with!

Keep hope alive and amazing things will happen!

Airborn's Wife

[BJ1fish]

I am on week 64 of 72 of infergen. Daily infergen and 1400 MG of ribavirin. This is my 5th try at tx. Relasper.I have tried all the interferon tratments. For me the sides of infergen are pretty much the same as the other interferons. Just more pain and anemia is harder to control Stronger pain meds and Procrit are helping with that. Undectable at week 12.
Good Luck

[BJ1fish]

I have not missed any work. I feel worse on the weekends. On the weekends I find myself lying on the couch. This makes me feel more tired than the weekdays when I am working.The more I keep occupied the better I feel.

[BJ1fish]

I have not missed any work. I feel worse on the weekends. On the weekends I find myself lying on the couch. This makes me feel more tired than the weekdays when I am working.The more I keep occupied the better I feel.

[SnoWav]

thanks for the good thoughts oak looks like I'll be around for awhile keep you posted.NY girl you must be on week 40 something hope it's going good for you.yep the doc seemed like he knew his hep but on the aggressive side guess thats a good thing.hey Beagle several of my kids live here in Tahoe came out for the 1st one getting married.Friole yep my new doc said if he had treated me the first time I might not be back now because he would have tightned the screws a lot more. He asked if I needed procret before and I said no ,he said I sure will if he treats me,and I thought I was having fun the first time around sure not looking forward to another round on the nightmare coaster.Hey fish you must be a tough old bird to be on week 64 of infergon  the new doc said if I went that route it would only be 48 weeks for me.were you able to keep working?not many can from what i hear.later

[Pdilly]

How sad that they  misinterpeted the bx the first time.  With the new doctor I am sure they will want to treat.  I am 2-3 stage too.  I start next month.