Liver Biopsy and Treatment Decision

Hello Friends!

This will be posted on both the Medical Community as well as the Social Support, as medical discussion and support is being sought.

A long break has been taken from here, and for that I apologize.  A lot has been on my mind, and well... I just needed to take some time to enjoy life before deciding on what to do... My stats are in  my profile.  My hepatologist typically treats a 2b WITHOUT a biopsy. (??!!) I said, "No".  Originally I considered waiting to have my biopsy taken at the end of this summer (as some of you may remember).  Because of my reluctance in starting treatment, and expressing my desire to wait a few years, he ordered a biopsy.  

The liver biopsy wasn’t as big of a deal as I anticipated.  It was ultrasound guided.  A light sedation was given.  (I don’t know what it was, I was totally awake but RELAXED!).  Actually the shot given to numb the area hurt more than the procedure itself.   Tiny slivers from three different areas of the liver were remove.  (Why?  I don't know.) That just felt like a dull pressure.

I asked that the results be faxed but instead the nurse practitioner emailed me with this:

NURSE PRACTITIONER: "Dr. **** advises your biopsy results will be discussed with you in detail during your March 28th appointment.  Briefly, I can state this:  Stage 0-1 minimal scarring (no significant fibrosis) w/Grade 1.  Feel free to call me after 3:30 on Monday.  And, in answer to your question, yes, he still would like to discuss treatment."  

Does this make sense?

I hope all my friends here are doing as well as can be expected.  Each of you have continued to be in my thoughts!  

~Anwaar

[CockSparrow]

Quote - Tiny slivers from three different areas of the liver were remove.  (Why?  I don't know.)

There could be two reasons for this.
1. The Dr performing the procedure had trouble getting a decent sample and it took 3 attempt before he got one he was happy with.
2. Biopsys are prone to sample error (the piece that is taken is either less or more damaged than the rest of the liver) It can also be mis read. Taking three samples minimzes the chances of this happening.

Grade 1 stage 0-1 means very little damage has occured.

Because of your genotype HCV - 2b, and really low VL 82,000 you have an excellent chance of SVR if you treat.

CS

[anwaar]

Yes, that makes better sense now regarding the three samples!

Thanks for your treatment suggestion. (From what I've studied thus far, SVR does look promising in my particular case.)  I want to read and contemplate more on the shorter treating time also, if I do make the decision to treat.

[jmjm530]

CS: There could be two reasons for this.
1. The Dr performing the procedure had trouble getting a decent sample and it took 3 attempt before he got one he was happy with.
2. Biopsys are prone to sample error (the piece that is taken is either less or more damaged than the rest of the liver) It can also be mis read. Taking three samples minimzes the chances of this happening.
--------------------------
The answer should be found in the actual biopsy report where sample sizes should be mentioned. My guess, given that it was guided, is that it was reason #2. I agree with "CS" that you have an excellent chance of success if you treat. I also think you have time to wait, at least until the geno 2 PI trials supply some data. Of course your biopsy is wonderful news, but in a sense it makes your decision more difficult. Had you had more liver damage then it would be easier to make a decision to treat.

All the best,

- Jim

[anwaar]

I appreciate the response.  The NP was clear that the results were good news.  Perhaps for the very reasons you and cocksparrow mentioned, he wants me to explore the idea of  treating it now while the viral load is low with no significant liver damage.  From what I've read thus far, I would have an excellent chance at successful treatment.  

I'm leaning toward waiting to see how the geno 2 trial data you mentioned comes out and even longer to see how things pan further down the road.  A three to five year waiting period doesn't appear to be that long of span when I'm looking at the whole picture.  This is a **consideration** also, IF I make a decision to treat now, I will ask the specialist to explore the possibility of shorter treatment.  I will also ask (even if I must pay out-of-pocket) to have a PCR  taken as early as after the 1st week of treatment. This is IF I choose to treat fairly soon     -- anyone have any thoughts on that.   If you were in my position, (29 yrs old; low VL; no 'significant' liver damage; contracting virus 9 yrs ago).

~Anwaar

[medicmommy]

Hello!
With my biopsy (done when I was having gallbladder surgery)  my surgeon went biopsy happy and took 5 samples! (He was able to cauterize after each sample so he wasn't worried about bleeding)...I'm pretty confident he got a good selection...LOL...
I am a 3a with grade 1, stage 1...I initially held off tx(treatment) and tried naturopathic meds...it sort of worked, but didn't suppress the virus to my satisfaction...
Because of multiple factors (financial stability, workman's comp covering insurance costs, daycare issues, personal health, mental stability, and the likelihood of SVR -80% in my case), I've decided to go ahead and tx...Before you do, read everything you can...be aware that some have long term effects from tx...be also aware that, if you have an underlying condition, tx can make it worse...You do have time on your side..

[anwaar]

Thanks for that!  And yes, indeed... not a doubt that he got a GREAT sample! lol!  (And sounds like our livers are twins!!)

I just wanted to pop in here with my best wishes on your starting treatment!  Now, if I understand it correctly, 24 weeks is standard treatment time for 3's also.  I'm I correct?  I noticed you mentioned the 80%, which was also quoted to me as a 2.  

When do you begin your treatment?  Take good care of yourself.

~Anwaar

[Deb_c430]

Sparrow got it right I think, when I was first GI was against  biopsys, because they only took one sample,  the liver is a big organ, and very often  one sample was not accurate, he could sample a piece that was healthy, and the rest be blown.   or visa versa.

I still have not had a bx,  scans, ultra sounds,  MRIs after this tx is done, I will most  prob have one. I would NOT suggest to anyone else, to follow my lead on this.  

Agrees with medic,  you are young, and i have read that the younger folks do respond much better.

Deb

[anwaar]

Wow, this is awesome to receive everyone perspective on this.  Although, I've taken a break, I've read some in the last couple of days and understand interferon can be an anti-fibrotic as well, so I'm hoping by the time your treatment is completed (and you've taken the well deserved rest to recuperate), that when you are biopsied that it will find your liver looking good!

~Anwaar

[CockSparrow]

While I agree that anwaar has time to wait, what cant be known is whether her VL will stay as low as it is now. If she waits her VL could be a lot higher by the time treatment is needed..

With such a low VL i would suggest treating earlier rather than later makes more sense.
CS

[jmjm530]

There are several studies out on shorter treatments for geno 2's. Some give identical odds to 24 weeks. A more recent one gave good odds but around 7-8% less. The conclusion of that study was that 24 weeks was recommended but that a shorter course was a viable option for those having difficulty with side effects. Of course, the conclusion is subjective, because one could also argue that the odds are still very good with the shorter course and the tx drug exposure is only half. The key to the shorter course is making the plan *in advance* and sticking to it. If UND at week 4 (via very sensitive testing) then go for 12 weeks (Peg Intron) or 16 weeks (Pegasys), or whatever study seems more current/complete.

The other part is what to do it detectible at week 4. One course of action is to continue on to 24 weeks, however, I believe studies suggest that your odds of SVR now drop below the 80%, as most geno 2's are UND by week 4. That then means less odds of SVR with 24 weeks or extending to 48 weeks. So another reasonable option – esp considering your low level of liver damage --  is simply to stop treatment at week 4 if still detectible by sensitive TMA (sensitivity 5-10 IU/ml or lower). That way you've limited your exposure to the tx drugs to only 4 weeks.

So, an early-stop rule strategy would limit treatment to somewhere between 4 and 12 or 16 weeks, depending on results from your week 4 test. The only downside I can see to stopping at week 4 may be disqualification for future PI trials, but that should be investigated trial by trial because stopping voluntarily at week 4 may not be considered a disqualification.

Assuming I had your stats, and assuming I decided to treat, I’d consider the above strategy. That said, it’s only one of a number of treatment strategies and probably is not embraced by the majority of doctors as I’ve seen few (if any) here stop at week 4. I would also do more research and order up all the full-text studies – as well as examine in detail the odds of SVR if not UND at week 4 with various tx lengths – before making a decision. Plus running it by your doctor and preferably an additional consult for clinical-experienced input. Alternatively, you can watch and wait. The geno 2 PI trial info hopefully out in a year or so should add more to the decision making plate.

CS makes a good point that your vl now is low and your healthy, willing (at least to consider) and able. No one knows what the future will bring. But that applies to your treatment as well. If any of us had a crystal ball, advice would be a lot easier. BTW viral load is not correlated with liver damage but only partly with tx outcome. It can also vary wildly, so your low viral load today doesn't mean it will be low at time of tx and vice versa. I was 16,000 IU/ml three months prior to tx and 1.5 million when I started. Three or four years prior to that I was 30 million IU/ml.

-- Jim

[Deb_c430]

It is a big decision,  when and how to treat.  Youth is in your favor.  agree with CS and Medic mommy, totally that  your chances of beating it now and putting it behind are awesome!

[CockSparrow]

What did you change between PCR tests
What ever you were doing to get your VL to Drop from 30mil to 16k I want some.
CS

[jmjm530]

I had a few numbers mixed up. It was around 150,000 IU/ml, but I'd have to check my records. The 16,000 was my week 1 vl, down from 1.5 million, not a bad response. In any event, 16,000 or 150,000, no clinical difference, they both are considered low.

As to what I did to cause this that would be highly speculative and it could just be the ebb and flow of the immune system and the virus.

But since you ask, I did embark on a very short course of Chinese Herbs that spiked my liver enzymes so high I decided to delay treatment for close to a year. Since I never checked my viral load at that time, it's possible that in spiking the enzymes it caused some sort of acute reaction which may have activated the immune system with a postiive end benefit. This is *highly* speculative, so take it as such.

I also was on the Pritkin diet for part of that time. Pritkin is a very low fat (under 10% of total calories) diet and it has always brought my liver enzymes down to normal range, although not as low as they are now which is an ALT of 9.

So maybe this, maybe that, or maybe just the mentioned dance of the virus and immune system.

You may or not be aware of a recent study that suggested that very high pre-tx viral load is no worse than high pre-tx viral load in terms of predicting SVR. So, while I might have benefited if I treated with a VL of 150,000 (definitely low viral load) -- at least according to the study mentioned, no difference had I treated at 1.5 million or 30 million, although I think I'd prefer the former given the choice :)

All the best,

-- Jim

[anwaar]

Jim;  Thank you for that information.  There is a lot to consider.  

All:  Although, I believe my mind is made up, I'm not one hundred percent sure.  I will take everyone's views and consider them between now and my March 28th appointment with the hepatologist, and of course, will take his suggestions/recommendations into consideration.  I'm feeling pretty calm and the anxiousness of diagnosis has subsided with the biopsy result.  I know there is no emergency and there will be time to make a decision that I can feel comfortable with.  It is a shame we have this virus and getting to know one another under these circumstances.  I will let you all know what my decision is and I have appreciated the comments and support.  Thank you.

~Anwaar