Hep C Discussion Forum

Judy S · Senior Member

RE: Real hepatologist

mallani · Guru

Hi Judy,

I'm happy to give an opinion but I'm not a Pathologist or Hepatologist. I did hundreds (if not thousands) of biopsies as an Interventional Radiologist and was always keen to read the reports. Also I have had 3 biopsies of my own, and have gone over the slides with the reporting Pathologist. So this is just an opinion!

Your biochemistry does not suggest cirrhosis. However, it is possible for cirrhotics to have fairly normal labs.

I'm a bit concerned about the size of your biopsy sample. It's only 5 portal tracts so the specimen must have been 1-1.5 cm. long. Pathologists like to have at least 10 portal tracts, and I always tried to get 20. The specimen would then be 3cm long, and this is not always possible. I always did at least 2 passes through the R liver lobe to cover a wider area. It is well accepted that liver changes are not uniform and that small sample size may make interpretation difficult.

Your results equate to A2 F1. As no portal tract-portal tract bridging was seen, this is why you're F1. The moderate portal inflammation is A2, but this is subjective.

Despite the small sample size, you are probably F1 but to be on the safe side, I would call myself F2 ( at worse).

Remember, this is just my opinion and is NOT medical advice. Relax, and wait for the easy drugs.

Judy S · Senior Member

Thank you Michaele. You're really doing all you can; very dedicated. I'm not as good as you are about everything. I've never smoked and no drugs, but I have had a drink twice since last Nov. I love my Coco perfume and Really missed wearing it while on Victrelis (couldn't tolerate any smells on that med) and I burn incense, oils, and use scented candles. It's a daily thing with me and I missed it all while on tx very much. Prob not great for my liver though, lol. I've never been much of a red meat eater; hard to digest. I do 3 - 5 miles workout w/ weights daily but hiking accident on Dec 28 left me with a completely torn calcaneofibular ligament (ankle), so doing other exercises now, still with weights. That's always helped with everything. I try to stay away from junk foods and currently doing low-carb, so no sugar. I try to keep my diet more alkaline too; I was hospitalized with 3 ulcers in 2004, and have had a few, since. So I try to avoid acid foods. Don't worry...we'll have our time for SVR when it was meant to be. Shouldn't be too long.

Michaele · Guru

Hi Judy. I remember when you were getting so sick, really scarey when your alone with your child. Your liver seems to be in better shape than mine but I cant make a Dx, just looking at the numbers. What are you doing while you wait? I do not eat high frutose corn syrup, eat low sodium , low fat , low sugar, purified bottled water, no scented inhalants/perfume, air fresheners; anything that is breathed in/ bug sprays. Avoid alot of cosmetics. I dont take drugs or smoke. No drinking . I just avoid any and everything that has to pass through the liver; ingested/inhaled/applied. Eat alot of fruit and veggies. Try to do organic as much as possible, rarely eat meat. Doing eggs. eat lots of fiber, I need to exercise but Im lazy. Eating almonds, but almond milk lacks protien. Good luck to you and your beautiful child. Michaele

Mary Jane · Guru

Judy S wrote:
Michaele, I'm with you in treating my liver as if it were cirrhotic. I was happy to find this post. My protocol was also 48 weeks but I had to stop after 23 weeks due to intolerance of interferon; it twice hospitalized me. You & I can wait for better txs. Several drs have always been uncertain if I am cirrhotic or not...I have Always wondered.
Malcolm, I wonder if I may pick your brain on that subject. I was reading what you wrote about cirrhosis, and am now tending to think that I am not, but uncertain. You've seen my biopsy reports before, but I'll post below what my results were in everything you mentioned:
Albumin (only had 1, pre-tx in Sept 2011) - 5.2 (3.3 - 4.8 norm range)
Total bilirubin - 0.6 as of 2 days ago. (<1.1 norm range) Previous results since May 2012 have been: 0.5, 0.6, 0.5, 0.6, 0.4, 0.5, 0.6, 0.7, 0.6.
Platelets - 215.
ALT & AST - always normal or very slightly high pre-tx.
INR - 0.97 (0.8 - 1.2 norm).
APTT - 29 (23 - 38 norm).
Last biopsy 12-4-12:
Grade 2; Stage 1. There are about 5 portal tracts. There is moderate portal inflammation, mostly lymphocytes with a few eosinophiles. No lymphoid follicle nor interface hepatitis/piecemeal necrosis noted. There are focal minimal parenchymal necroinflammatory spots. The Trichrome and Rectic stains highlight mild periportal fibrosis. There is no steatosis, no cholestasis, no bile duct damage, no ductopenia and no granuloma present. The Iron stain shows no iron deposition. The PAS stain W&W/O diastase show normal glycogen content. The special stains controls show appropriate staining.

Hey Judy I know Malcom will respond ... the new drugs are coming.. take good care of yourself ...MJ

Mary Jane · Guru

Michaele wrote:
Hi MJ, I have a Rx for Nexium, I rarely take it. I know I am suppose to take it QD for gastritis, but actually the stuff isnt good for you. Im trying to preserve my liver so I dont take all the Rx Im written. I do the HBP Rx and the Thyroid Rx. I dont take the daily 81mg of of asprin anymore. I think popping asprin and raw garlic was how I got the gastritis. Thanks your asking . Michaele and Thanks to everyone for taking the time to care !!!

Your welcome... I understand about the pills... less is better, maybe something holistic or easier on the ole liver... Dang see I forgot about your thyroid too... Geez gf ... There are good folks on here that care.. hopefully you take good care of yourself, monitor yourself and the new drugs will be here before ya know it... stay warm and take care ... all the best MJ

Judy S · Senior Member

Michaele, I'm with you in treating my liver as if it were cirrhotic. I was happy to find this post. My protocol was also 48 weeks but I had to stop after 23 weeks due to intolerance of interferon; it twice hospitalized me. You & I can wait for better txs. Several drs have always been uncertain if I am cirrhotic or not...I have Always wondered.

Malcolm, I wonder if I may pick your brain on that subject. I was reading what you wrote about cirrhosis, and am now tending to think that I am not, but uncertain. You've seen my biopsy reports before, but I'll post below what my results were in everything you mentioned:

Albumin (only had 1, pre-tx in Sept 2011) - 5.2 (3.3 - 4.8 norm range)

Total bilirubin - 0.6 as of 2 days ago. (<1.1 norm range) Previous results since May 2012 have been: 0.5, 0.6, 0.5, 0.6, 0.4, 0.5, 0.6, 0.7, 0.6.

Platelets - 215.

ALT & AST - always normal or very slightly high pre-tx.

INR - 0.97 (0.8 - 1.2 norm).

APTT - 29 (23 - 38 norm).

Last biopsy 12-4-12:

Grade 2; Stage 1. There are about 5 portal tracts. There is moderate portal inflammation, mostly lymphocytes with a few eosinophiles. No lymphoid follicle nor interface hepatitis/piecemeal necrosis noted. There are focal minimal parenchymal necroinflammatory spots. The Trichrome and Rectic stains highlight mild periportal fibrosis. There is no steatosis, no cholestasis, no bile duct damage, no ductopenia and no granuloma present. The Iron stain shows no iron deposition. The PAS stain W&W/O diastase show normal glycogen content. The special stains controls show appropriate staining.

Michaele · Guru

Hi MJ, I have a Rx for Nexium, I rarely take it. I know I am suppose to take it QD for gastritis, but actually the stuff isnt good for you. Im trying to preserve my liver so I dont take all the Rx Im written. I do the HBP Rx and the Thyroid Rx. I dont take the daily 81mg of of asprin anymore. I think popping asprin and raw garlic was how I got the gastritis. Thanks your asking . Michaele and Thanks to everyone for taking the time to care !!!

Michaele · Guru

Hi Mallani, and thanks again. Im going to wait it out, but treat my liver as if it were cirrhotic; my thinking is; I'll take better care of it. Good luck and you explain things better than the Dr. I know you worked in the medical field, but did you ever teach as part of the career? Im sure you trained alot of people during thier rotations . Michaele

mallani · Guru

Hi Michaele,

It's a pleasure to read a well-written biopsy report. The features described are consistent with A2, F2-3. The important features are normal hepatic plate thickness and the lack of central vein fibrosis. The slight nodularity and bridging fibrosis (between portal tracts) takes you into F3 part of F2-3.

You do not have cirrhosis. Your albumin and total bilirubin are normal, and as you say, you would need a normal bleeding profile before your liver Bx.

Your platelets are marginally low at 132 ( normal range 140- 450) and your liver enzymes are slightly raised.

If you had triple Rx, it would be RGT so Rx length would depend on your VL response. It may be only 24 or 28 weeks.

As I said in the last post, given your medical history and circumstances, you can afford to wait for easier treatments, even though they may take over 2 years. Good luck

-- Edited by mallani on Friday 25th of January 2013 11:51:25 AM

Mary Jane · Guru

Oh Mizz M aka Michaele, wow I remember back in the fall you were concerened about the GB see brain fog did not make the connection you couldn't do the " fat".. So I see now they don't wanna remove.. ok so you watch your diet and hope for the best.. But you mentioned a burning, can you take anything for that?

All the females on my side of the family have gallbstone history, Grandmother, my mom ,me and my two sisters all had to have our's removed.. Yikes it made me so sick it sent me to the ER back in 94...

I'm on the same page with Malcom about the doc's % on side effects with given age.. and triple therapy.

Looking at your labs? wondering about the platlets? I vaugly understand the biopsy histo stuff my gf at work does this line of wk.

I know you used to be a nurse you are smart cookie, you are dealing with alot of health issues and differnt opionins form several different doctors... so my advice to you again is YOU know your body and YOU know what you can handle... take a deep breath .... the new drugs are commin... all the best hugs MJ

Michaele · Guru

MJ, I do have gallstones, and the drs kept saying have it removed, now that I say maybe we better get it out, they say to risky. I think Im losing my mind . The stones were the reason for victrelis/no fat. My GI said at this time anything could set my GB off. So who knows, my gastritis is burning a whole in my gut as we type. As I said, I feel like Im losing my mind. its worse than pulling teeth. Michaele

Mary Jane · Guru

Michaele wrote:
Hi MJ, I was suppose to do the victrelis, was approved but chickened out due to all the contraindication of interferon.. Not afraid of the needles only the side effects. Today Dr said my heart was not the problem , bipolar, lack of support , and being borderline for glaucoma were road blocks. he said They would need written approval from other doctors. Im confused and well, I will have to take my chances and wait. Maybe I 'll get on a trial for the non-interferon tx. When I asked doctor, he said nada. Michaele

Hey Mizz M.. Oh I see the Vic ok.. well I understand about the sides... WE all understand.. it's some strong stuff and it can leave life long sides.. Glad your ticker is in good shape. Still need to have them take a look at your GB again, ya know my sis kept complaing for 2 years they kept saying we dont 'see stones, in the end she had ONE big stone pluggin up the works.. just the way my family rolls.. Yes, you have alot of things on your plate, ONLY you know what YOU can handle... stay in touch with the forum they are always posting updates on the drugs and trialls, and you know everyone is very helpful.. Yeah doctors what can I say some are good and some are pain in the ponytail... P & L MJ

Mary Jane · Guru

Ditto Tim,

No broken record...I saw that was a topic the other nite on the forum long term effects from the drugs.. I may have to return to work before tx is over, like next week, booooooooo? My job is very demanding and detailed oritinted, physical at times too, so I don't think at this point I can work at 100% up to my potential or the demands. With some of the weird sides I'm having I am sure I will remain " Abbey Normal" for the rest of my life...

all the best MJ still puffin along, 4 more darts to go after this Saturady....

hrsetrdr · Guru

I'm not sure exactly which side effects to attribute to the Victrelis, but I do consider the Interferon(and to a lessor degree, the Ribavirin) to be just outright scarey-potentially-dangerous stuff. Yes, I do sound like a "broken record" with my never-ending criticism of interferon, but in my heart 0f hearts I believe that I'll have lasting effects from this tx.

Michaele · Guru

Hi MJ, I was suppose to do the victrelis, was approved but chickened out due to all the contraindication of interferon.. Not afraid of the needles only the side effects. Today Dr said my heart was not the problem , bipolar, lack of support , and being borderline for glaucoma were road blocks. he said They would need written approval from other doctors. Im confused and well, I will have to take my chances and wait. Maybe I 'll get on a trial for the non-interferon tx. When I asked doctor, he said nada. Michaele

Mary Jane · Guru

Hey Michaele, aka Mizz M..

Same old song and dance..

Sorry, I'm shaking my head just like you... As I /we have shared back and forth for the past several months, your mental health agenda and other health issues, IMO I would not recommend the Incevick.

Let's see if I have this correct, Stage 2/3, possible cirrhous, liver slightly enlarged, and platelets and WBC are low? And you've had Hep C for awhile. You aren't on any anti-depresents if I remember correctly because it was making you manic? Any other meds? You are disability retired right..? oh the brain fog

bottom line is you have other health issues and are sensitive to medications..

Just maybe you could do the Victrellis?

Hopefully some of the others will jump in here, and give their thoughts. I just know for folks like you and me, WE usually get hit hard with drug side effects. And that's interesting he said 48 weeks trx was OLD school now for cirrhotics ???

I also understand about family members is there anyone in your Church or neighborhood whom you are close with that you feel comfortable in sharing and letting them "help" you..??

It is important to have someone you can count on for help, even though I was here by myself my sister did show up every few days , go for groceries or pick up meds or drive me to the Doctor which is a 100 mile round trip...

I think you have the right as a patient to wait if you wish, just keep monitoring your health.. Studies are in phases so it depends on the region where you live as to what's going on.. Your doc is probably right for the timeline on the NEW meds oh they look so promising.. Fingers crossed it's sooner... Keep taking care of yourself , you are right until you've worn " those shoes" NO one has any idea... all the best peace and love MJ

DJ · Senior Member

I would not want to wait. My doctor was telling me to wait, so I switched doctors to find one who would treat me. To me.....we don't really know what medicines are coming out soon or when they will be available. But I am glad something new is coming along because if my current treatment fails I need 'hope' for something else in the near future. But so many are clearing the virus on the current treatments, and I would not want to wait. But that is just me. Now I am only on the two meds (pagatron and ribaviran) because I am Genotype 3. But if I were genotype 1, I wanted to try the Incevek, however my doctor said she usually recommends the Vicrelis because it has less side effects (but you have to treat longer). But everyone has to make decisions based on what is right for them.

Michaele · Guru

Hi Mallani and thanks, your opinion counts. My stage is 2-3, grade 1-2 . The only odd blood work platelets 132, WBC 3.80 , absolute segs 1.6, SGOT 56, SGPT 53, chloride 110. my albumin is great @ 4.0, Total bili 0.6. I dont have the INR/PT , but it had to be ok for the biopsy and endo to be done. Biopsy said soft tan tissue, portal area shows mild chronic inflamation including occasional plasma cells. In some areas limiting plates appear irregular.Portal ducts and vessels unremarkable. NO Mallory's hyline ID'd . Rare apoptotic bodies noted. A trichrome stain shows increased portal and periportal fibrosis with focal bridging and in one area architecture that show some nodularity. No central vein fibrosis is ID'd. Reticulin stain shows no collaspe. Hepatic plates show normal thickness. PAS stain with diastase shows no large positive globules. Ceroid pigment in Kupffer cells is ID'd. Hope your doing well. I did mention how cirrhotics need longer TX and why/ as if he didnt know, and he stuck with no need for 48 wks, and besides you'll know in 4 wks if it's going to work . Michaele

-- Edited by Michaele on Friday 25th of January 2013 12:30:09 AM

-- Edited by Michaele on Friday 25th of January 2013 12:30:57 AM

mallani · Guru

Hi Michaele,

Wow, you poor thing. There are some interesting comments from your Hepatologist.

I agree that it will be at least 2 years before Inter.-free Rx are available. Sofosbuvir will probably get FDA approval in late 2013 or early 2014. However, for Geno 1's, this will only be used with Peg and Riba. Although Sx 'may' be fewer, the SVR rates may not be as high as for Inciv. or Vict.

I agree that you wouldn't be accepted for a trial with low platelets and your bipolar history.

I disagree about his Sx percentages. No 62 yo will go through 48 weeks of triple Rx without Sx. Probably 50 % will have fairly severe Sx and the other 50 % will have moderate but manageable Sx ( I'm only talking about F3's and F4's).

The dropout rate would be 35-40%. This is from a recent large French survey.

I think you mean 48 weeks for cirrhotics is the 'gold' standard, rather than the old standard.

After your biopsy in September, you posted that the results showed Stage 3-4. You're now saying 2-3. Do you have a copy of the report as it's an important difference.

A firm palpable liver is common in cirrhotics. It is possible to get an enlarged liver during an acute inflammatory episode- the liver may be tender then and patients may feel discomfort from stretching of the liver capsule. Low platelets are common in cirrhosis. Other important blood tests for cirrhosis are serum albumin, INR (prothrombin time) and total bilirubin. If the platelets and albumin are decreased and the INR and bilirubin are increased, cirrhosis is probable. If only 2 are abnormal, it's 50/50.

You may have cirrhosis. I had cirrhosis for at least 5 years before starting triple Rx. Given your history and circumstances, you would have a very difficult time with triple Rx whether it be Inciv or Vict. Just my opinion, but I would wait until less toxic treatments are available. Best of luck.

PS: just saw your post about gallstones. These are common if not universal in cirrhotics! Don't worry about them.

-- Edited by mallani on Thursday 24th of January 2013 11:49:22 PM

Michaele · Guru

Tim and everyone

Thanks for response, Im going to wait as long as I can and hope for non-interferon, I know down deep inside I wont finish the triple with interferon . MIchaele

-- Edited by Michaele on Friday 25th of January 2013 12:39:46 AM

hrsetrdr · Guru

Hi Michael, ~~welcome to the forums~~.sorry, I must have brain-fog today. If you can possibly wait another maybe 1 to 2 years without jeopardizing your health, you might be better off with one of the non-interferon treatments coming available. The is just my opinion, I wish you the best.

-- Edited by hrsetrdr on Thursday 24th of January 2013 09:09:09 PM

Michaele · Guru

It's me again, so Im sitting here scratching my head and all the other areas that itch, wondering. The Dr said I was right to be concerned about the triple tx , and admits that if I truely feel I woulnt be able to finish tx, I was right not to start. In the next second he was pushing for TX. He goes over the 1/3 quit on their own, 1/3 stop on dr orders, 1/3 complete tx. He also tells me I need to work on having a good relationship with one of the three children I have in this town; for a support system. He has never met my kids; All of whom suffer from clinical depression. Well, now you can think what you want about all this, but odds are you'll not think about it to avoid the confusion. michaele

-- Edited by Michaele on Thursday 24th of January 2013 05:04:59 PM

Michaele · Guru

Hi all, just saw the real hepatologist; a consult. not my usual GI. Im more confused in some ways. He said that the biopsy stages stage 2-3 but Im probaly cirrhotic . He stated my liver felt slightly enlarged, my platelets and WBC are low but not low enough to do anything about; platelets point to cirrhosis and tx would be best started, but because of the bipolar and borderline glaucoma , Id need clearance from those treating. I keep repeating ,"I want to wait for noninterferon ." , he tells me all the reasons I should have good results ; a woman, good weight, just at border for cirrhosis , good habits, nondrinker/smoker, at this point SVR rate is 70%. He tells me only about 1/3 get sever side effects. 1/3 mild, and 1/3 none. He hasnt been to this site to read the truths out of the mouths of those suffering. He also tells me that 48wks is the old standard for cirrhotics. I tell him Im not afraid to die, but I want diginity and no pain, and that I should be able to hang in there compensated for some time. He looks like he wants to cry.He keeps telling me that Im well read on this .Im now confused as heck, but know I should get more excersize. But now I think he is as confuse as I am. He doesnt think noninterferon tx will be out in this county for at least 2 years, I ask about studies; get no answer. He tells me my GI was doing a good job, and to call for another appt if I decide to treat with him, get my ultrasounds every 6 monthes. Michaele

-- Edited by Michaele on Thursday 24th of January 2013 04:15:57 PM

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