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Avatar universal

My husband got result from biopsy

He has type 1 which, I understand, it more difficult to treat.

His grad of inflammation is 2. Mild. Interface hepatitis involving some or all portal tracts; little hepatocellular damage.

His stage of fibrosis is 3. Septal fibrosis. Fibrous septa with architectural distortion.

Steatosis is Present, Mild and Macrovesicular.

His Iron Deposition is 2 (graded from 0-4)

I posted several weeks ago and got some really helpful replies.  I am hoping that someone can tell me what this all means.

His doctor said he needed to be on treatment sooner than later.  He has just gotten a new job and will not qualify for insurance with them for about 3 months. He is on COBRA now and that will run out in October.  Any advice would be appreciated.
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Avatar universal
JP: Interesting but for now I'd settle for a competency test that any doc has to pass before treating an HCV patient. What really scares me is how little some of my other docs may know in areas that I have not personally researched.

Willing: but ultimately, it seems to come back to  where does one put the chips.
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Sure, but again you've done a bit of heavy lifting. Who do you want a patient to get advice from who doesn't have the time or inclination to do independent research. A top hepatologist of a GI who gets his tx info from the package inserts.

-- Jim
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Avatar universal
thanks, but more useful than seeing another hepatologist would be a referral for a good organic/pharma chemist. Has anyone else started wondering whether rather than waiting five more years it might be worth risking synthesizing a couple of grams of brand X?

I think Magnum's recent threads provide a good data on this subject. He's gotten very good advice, and one of his Drs has a world-class reputation, but ultimately, it seems to come back to  where does one put the chips.
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Avatar universal
I think you and I are fairly close on this one just perhaps that I more aggressively advocate seeing a hepatologist which means I might more strongly advocate people traveling some distance for at least an initial consult. That's what planes are for right :)

My issue is more with others here who seem to negate the benefit of a hepatologist over GI (all things equal with travel, insurance) because they might have found a GI they like. Unfortunately that does not negate the fact that as a whole GI's simply know less in this field.
............................

I think you are right. You are more aggressive about the hep doc. I guess I've seen too many people over the years who do not have the same opportunities that those of us who live near big cities have. Ande I've seen lots of people have great luck with good Gastros.

Have you seen the article that Dr Bacon wrote about whether or not to make hepatologists as a specialty all it's own? In other words, one can go straight from med school into that field and skip being a gastro first? I thought it was quite interesting and apparently the GI's and hep docs have been discussing the pros and cons for a few years now.
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Avatar universal
JP: We have no way of knowing if the doctors who have attended the CME's are "hooked" up with a hep doc or not. We didn't ask those questions but I think it is important enough to add those to the next research that is done if we get a chance to participate again.
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Just want to make it clear that my comments do not mean I don't support the work your organization is doing. Regardless of who is "right" in this thread, the reality remains that for one reason or another thousands of people will be seeing non-hepatoloigsts this year for advice. Your organization should be applauded in making that advice better advice.

-- Jim
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Avatar universal
JP: Over all I believe we are saying the same thing, just ion different ways.
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I think you and I are fairly close on this one just perhaps that I more aggressively advocate seeing a hepatologist which means I might more strongly advocate people traveling some distance for at least an initial consult. That's what planes are for right :)

My issue is more with others here who seem to negate the benefit of a hepatologist over GI (all things equal with travel, insurance) because they might have found a GI they like. Unfortunately that does not negate the fact that as a whole GI's simply know less in this field.
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Avatar universal
Jim: "Those here who recommend hepatologists do so not to criticize anyone's medical care but to offer what I believe is a better option in many cases. I think putting out these opinions is important and then people can draw their own conclusions whether or not they want optimum care or not."
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JP: Tthe above is what I have a problem with. There is no "disclaimer" let's call it that, that says, if there is no hepatologist available, find a GI doc and ask these important questions.
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I guess I have the same problem that often no "disclaimer" on the other side of the discussion when someone simply says "see a hepatologist or GI" (without regard to geography) as if there are no shades of grey per the discussion here. For a long time I've advocated getting a local doc to work in conjunction with a hepatologist as a reasonable choice. Just wish others who recommend both hepatoloigsts and GI's equally might add something similar.
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Willing: ut from my experience that ends up being a  relatively unimportant part of treatment. It's much more important to find an accessible physician with whom you can communicate well than a specialist.
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That's more like it, it's been boring all these agreements recently :)
In your case it might not make much of a differfence because you've put in a lot research. Others who haven't would benefit more from seeing a hepatologist and frankly I'd love you to see one as well -- or more than one if you haven't already. We both agree on the pathology slide reads but who is going to quarterback the whole thing -- a hepatoloigst of course! Yes, communication is important but who said hepatologists can;t communicate better than GI's? For me the really important thing are the core tx decisions coming out of an initial one or two consults. Again, that's where the hepatologists lays out possible strategies. The rest can be largely mechanical. Yup, I think we're on about opposite sides on this one, just like the old days :)

-- Jim
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Avatar universal
to echo JPs comments, if you can find a local specialist it's certainly a good idea to see one, but from my experience that ends up being a  relatively unimportant part of treatment. It's much more important to find an accessible physician with whom you can communicate well than a specialist.

As you research this area you'll find that many/most hcv treatment decisions turn on informed guesses rather than the application of specialized skills or knowledge - once you understand  the available choices and their odds your guess is as likely to be right as that of a specialis (in a **** game between you, your current Dr. and a  hepatologist,  there's no ringer)

Some suggestions:

- get an additional pathologist to look at the biopsy slides. Disagreement is not uncommon, it's interesting the report, while mentioning 'architectural disortion', doesn't identify portal-portal bridging

- if your husband needs motivation to lose weight, read up on the diabetes/steatosis/hcv connection. There's an unfortunate vicious cycle there. Though it's difficult to sort out specific cause and effect available data indicates that
(1) HCV in the presence of pre-diabetic indicators is associated with more rapid progression to diabetes
(2) high BMI and IR are associated with lower likelihood of SVR
(3) high BMI and IR are associated with  significantly faster fibrosis progression
A recent, free-access, review covering some of the studies in this area is
http://www.ncbi.nlm.nih.gov/pubmed/19340895

- If your husband has never treated, he may be eligible for the currently recruiting  Phase II study of R7128 (look on clinicaltrials.gov for trial NCT00869661). This is a better drug, as measured by viral drug resistance, adverse effects, and SVR odds than either telaprevir or boceprevir but is not as far along  in the FDA approval process.
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Avatar universal
There are only 350 hepatologists in the United States with 8 States not having even one. They are all called transplant hepatologists, BTW. They can be found, by state, here:

http://www.healthgrades.com/local-doctors-directory/by-specialty/transplant-hepatology
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Avatar universal
great {debate} or conversation  which ever you choose  .what a double edge sword the GI versus  more . I enjoyed this one . good points from all .      good luck Jennypenny you  can never say people here dont give you a ton of options     again hoping things turn  out okay for your hubby .   bob  
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Avatar universal
I said I agreed with you. What I was trying to say to others is that if they can't find a doctor with the credentials they would prefer, the best thing to do is find a gastro who has a large practice of hep C patients and is willing to speak with a hep doc if need be. All a patient has to do is ask during the first appointment if the doctor has a problem with confering with a hepatologist if there is a problem.

"Those here who recommend hepatologists do so not to criticize anyone's medical care but to offer what I believe is a better option in many cases. I think putting out these opinions is important and then people can draw their own conclusions whether or not they want optimum care or not."

Jim, the above is what I have a problem with. There is no "disclaimer" let's call it that, that says, if there is no hepatologist available, find a GI doc and ask these important questions. And then give the patient a list of questions to ask the GI so they can ascertain if they will or will not get good care.

Over all I believe we are saying the same thing, just ion different ways.

P.S. We have no way of knowing if the doctors who have attended the CME's are "hooked" up with a hep doc or not. We didn't ask those questions but I think it is important enough to add those to the next research that is done if we get a chance to participate again.
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Avatar universal
Thank you all for the information and we will take everything into consideration. We have a lot to learn.  The trials that they are referring to would be at Kennestone Hopsital in Georgia. I don't know if that is a teaching hospital or not. He was told by the doctor that he would be treated for a year though I guess that could change with the trial.  

I plan to read everything on this site as well as another site that was mentioned on another post I made.

My prayers are for everyone here.
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Avatar universal
I sought out a highly regarded hepatologist because I was not getting the level of care or consideration from my local gastro/hepatologist.  Best 5 hour round trip I ever decided to make.  I was 6 months into treatment and felt horrible but I had to do it.  I had done enough research on this disease and was informed enough to know I needed to extend treatment for the best chance at SVR.  My beliefs regarding extension were confirmed and many other issues were discussed as well.  That one visit changed the whole course of my treatment.  My local hepa was behind the curve regarding the latest protocols for treating hepc and is IMO is the ultimate poster boy for arrogant doctors.  I challenged him and he didn't like it because I knew more about treatment than he did.  It turned out local hepa finally did agree to extend tx but to this day I have the back-up of a leading hepatolgist if I need it.  
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179856 tn?1333547362
Yes stage 3 means time to get moving, fast.  However, if he lives the healthiest liver lifestyle he can while losing weight that might be a good move but it would have to be really serious attempt.

Fibrosis is one thing - it can be reversed and heal however once you are at stage 4 it's cirrhosis well that cannot be undone.

None of us truly can tell you which is the best move here - only you and your husband can work together with your doctor to figure this out. I'm not sure why he needs to wait to get into a trial though..........although it might improve his odds if he could get into a vertex telepravir trial or something - often times in a trial you don't get to use the 'rescue drugs' of procrit and neupogen that can sometimes literally save your treatment course.

You do need a good GI at least one who is up to date on the current studies. I'd say since they are talking about trials they might be.  If your options are limited you have to do what you can do but do yourself a favor - continue to ask questions in here and learn all you can. MANY of us have learned more than our doctors knew and thus really changed our course of history by filling the doctors in.  Believe it or not some of them haven't read anything except the old text books and they have NO Idea all the current advances that have been made that give us much better odds of success!~

GOOD LUCK!
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Avatar universal
Should also add that some of those here who feel comfortable working with a gastro have done an ENORMOUS amount of research of their own so in effect are very much partnered with their gastros in the evaluation/treatment process.  This is not the case however for the majority of people who rely on their doctors recommendations almost entirely.
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Avatar universal
I think in a perfect world, Jim's advice is perfect. However, we do not live in a perfect world.
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I acknowledge that, but in many cases people here do have access to the services of a liver specialist (hepatologist) and simply do not know the difference. In other cases here, people have made a point to do some traveling for at least an initial consult and almost all have reported back they were glad they did. Follow-ups were then by phone/email and sometimes coordination was done by a local doctor working with the specialist.

I have no doubt that there are some well qualified GI's out there, but who is to say which ones are and which ones aren't. If this discussion group is any sampling, then one has to include that there are many, many grossly unqualified GI's treating Hep C patients.

Where I still come out is that anyone diagnosed with Hep C should try and seek out the services of a liver specialist (hepatologist) if at all possible. Second best would be a one-time consult for evaluation and to open up future communication channels with a more local doctor. I feel this is a prudent recommendation any anyone but especially someone belonging to a hard to treat (or specialized) population, such as an acute, a relapser, advanced fibrosis/cirrhosis, etc, etc.  

You say, "our outcomes research, their rate of patients who clear is running the same as patients who use an academic center with hepatologists overseeing their care."  I applaud your efforts but the doctors you talk about are part of a program where they apparently do interact with liver specialists (hepatologists) as per what my recommendation is. In many cases there is no interraction and the GP or GI simply treats according to what knowledge (or lack of knowledge) they have. In fact a European study showed a direct connection between SVR rates and hepatologists versus non-hepatologists where the SVR rates were higher with those treating with a hepatologist.

Those here who recommend hepatologists do so not to criticize anyone's medical care but to offer what I believe is a better option in many cases. I think putting out these opinions is important and then people can draw their own conclusions whether or not they want optimum care or not. You yourself seem to suggest that seeing a hepatologist is optium care when you say "

I think in a perfect world, Jim's advice is perfect....I would urge people to see a hepatologist but not feel they are being short-changed if there are non available."

So let's get the word out that there is a difference in standard of care between hepatologists and non-hepatologists and again let people decide for themself.

-- Jim

-- Jim
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Avatar universal
I think in a perfect world, Jim's advice is perfect. However, we do not live in a perfect world. The majority of patients in the USA do not live anywhere near a hepatologist and they must use gastroenterologists. Many gastros have large numbers of hepatitis patients and they do quite well. In fact, a very close friend of mine who is obese (over 200 pounds) with type 2 diabetes, cirrhosis, geno 1a,  and other medical issues, cleared on  plain interferon and ribavirin. And she is not the only one to do so. She had an excellent gastro who had her do the interferon daily. This was before the peg was available. I would urge people to see a hepatologist but not feel they are being short-changed if there are non available. Our organization has done many CME programs for PCP's because of a lack of hep docs (as well as gastros) in more rural areas of the country. They are treating their patients and use the hep docs as telephone specialists if they need help. In our outcomes research, their rate of patients who clear is running the same as patients who use an academic center with hepatologists overseeing their care.
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Avatar universal
He has recently lost about 60 pounds but could easily stand to lose 100 more though the doctor said that even 10 would help.  She suggested a very low fat diet.  
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Look, we're not doctors here but my guess is that if he doesn't lose close to that 100 pounds (not 10) his chance of being cured will be signficantly lower. Also  a low fat diet is not necessarily the best way to lose weight according to some studies.

The two best things you could do for your husband would be to:

(1) Unless you're already seeing one, seek out a good liver specialist (hepatologist) at a large, teaching hospital. Gastroenterologists simply arent up to the task especially with a difficult to treat patient like your husband with stage 3 damage.

(2) Seek advice from a professional nutritionist(s) or some other kind of diet expert and not rely simply on "go on a low fat diet".

Just hate to see your husband start treatment and fail when their are steps he can take.

All the best,

-- Jim
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Avatar universal
He is very overweight as am I.  He has recently lost about 60 pounds but could easily stand to lose 100 more though the doctor said that even 10 would help.  She suggested a very low fat diet.  

She has submitted his name for a clinical trial but says that it could take some time to hear from them.  

His new job is 12 hours a day for 5 days a week and I am concerned that the treatment will prove too hard for him.  Is the standard treatment shots or pills and how often do you have to take the treatment?  He will be 64 this weekend.

I am very afraid.

Thanks for all the kind words and advice.  I will re-read everything carefully and try to understand.  I don't know what his viral load is.

Thanks to everyone.
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717272 tn?1277590780
He needs to treat, but he may be able to wait a little while since he is 3 (that's bad) and not 4 (that's dangerous).  The iron deposition and steatosis are not good either.  I believe that diet can improve the steatosis if he is overweight, but not much help if he is not.

It is occassionally hard to trust the research reports on the web.  There are ALWAYS exceptions and other factors can play in, like Viral load.  One report said that if you are genotype 1b and have low viral load, you are an easy cure.  That is proving to be the case for me and I have cirrhosis and steatosis but had very low Viral Load and am 1b and cleared the virus from my blood immediately on peginterferon and ribavirin, the standard treatment.  Read all the research reports but try not to put too much weight on what happens statistically to everyone else.  They may not really apply to your case because everyone's responce to the drugs is so very different.  
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Avatar universal
The presence of Steatosis means a poorer chance of being cured (SVR). For that reason you want to address the steatosis prior to treatment. Is your husband overweight? Has he been tested for Insulin Resistance? All these factors may be related and should be addressed prior to treatment. The best person to address these issues would be a liver specialist (hepatologist) who works at a large teaching hospital. They can help determine what the appropriate response to the steatosis is and what your best treatment strategy should be. They will also probably want to take their own look at the biopsy slides to better determine staging. I would not leave these decisions up to a gastroenterologist who has less expereince and may not be up on the latest studies.

-- Jim
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Avatar universal
personally I would take the 3 months to get into fighting shape then treat. Loose weight, exercise, etc. best of luck
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Avatar universal
It is wise for him to treat as soon as possible. Stage 3 means it's time to make a move. As info, as longs as he has been covered under a major medical health insurance policy for 1 year with no interuption in coverage or premiums, his new job's group heathcare insurance can't deny him or coverage or exclude his hepc care or treatment as pre-existing which is usually a six month wait for coverage to begin on that illness.
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