Questions

Why is it so difficult to find a hepatologist in Eastern North Carolina?  Gastro's coming out the woodwork but no Hep Doc's. Two big training hospitals (Duke, Pitt) but they're all gastro's. Do I settle for that if thats all there is? They do have a study trial starting ( IMO2125 ) but I don't think I fall in to the catagory they're looking for.
For those that advocate waiting for treatment if you have minimal liver damage, what length of time are we talking about? Can I wait 2 years? 5?  If I'm stage 1 and in good health and don't drink, does the disease progress over time? Is there a study on the progressive nature of Hep C? Can I go from stage 1 to stage 4 and if I can, is there a time span and how can I avoid it or slow it down?
I've seen this asked before but I'm going to ask again. Is there a study on the long term side effects of Interferon/Riba combination? There are some concerns that are cropping up and I'd like to find out if they're related to treatment. Concentration is one of them. I can't seem to stay focused on any one thing. My mind wanders to something else and when I try to back to the orginal thought, I've forgotten it. An Arthritic condition is another. Before treatment I had no problems with arthritis but now I find it difficult to grip or squeeze anything with my hands.  Jeez, I've just went a full circle on this damn disease. For those doing it a second time or more, can I pretty much expect the same sx as the first time?  Is there anything you would do different?  Thanks for any info.

[PSP-n-Me]

Hepatology Team at Duke University Medical Center  
  Alastair Smith, M.B., ChB, FRCP  
  Wallace F Berman, M.D.  
  Carla Brady, M.D.  
  Anna Mae E Diehl, M.D.  
  Judith Gentile, R.N., A.N.P.  
  John McHutchinson, M.D.  
  Andrew Muir, M.D.  
  Keyur Patel, M.D., FRACP  
  Iliana Bouneva, MD  

[wyntre9]

[wyntre9]

I sent this a couple of days ago but you might have missed it.

http://www.liverfoundation.org/education/webcasts/

It's the Dr. Dietrich educational video.  Answers many of your questions and is well worth the 45 minute viewing time.  First 10 minutes IS a little slow.

wyntre

[Liv]

Dr. McHutchinson at Duke is coordinating the 950 trials for the country.  Busy guy for sure but you can get an app't for an initial consultation with him.  I live about an hour from Durham and see Dr. McHutchinson twice a year.  You could also try UNC at Chapel Hill.  Contact the Hepatology Dep't.  They were also involved with some clinical trials.  Best of luck to you.

[dointime]

These are all major questions that you are asking.  You could probably find the answers by just browsing through the archives here except that they are not indexed that well for searching.

HepC liver progression.  It can go very slowly for years, I mean it can take 30 years or more to get to stage 1, but you can't be certain of that.  It does seem that there is a tipping point somewhere along the road and then disease progression accelerates, like 2 stages in 5 years.  So you don't really know and can't be complacent.  I don't think we really know how to slow it down yet, but alcohol is known to speed it up.  I'm getting an annual liver screening on a Fibroscan machine to monitor disease progression.  It's non-invasive and easy to do if you can find a doc with a machine.  

There's a ton of anecdotal info on the long term side effects of the drugs.  Brain fog and arthritis are common.  

dointime

[Teufelhunden]

Thanks folks. My faith in humanity is restored. Or was that sanity? I forget but I appreciate the info. Liv, looks like you know your history.

[FlGuy]

About a year ago I asked my liverhead to name the best hepatologists he knew.  In his top three was one that PSP and Liv mentioned, McHutchison.  He's the lead for VX trials and is widely published.  Most hepatologists are gastros or internists first and specialize further.

[Proactive]

It's funny, I read these "top doc" posts, and always wonder what exactly top doc is based on..Is there a list somewhere that compares their success, ie. SVR rates? Or is it simply based on the number of papers they have published or perhaps the number of drug studys they have done, or which drug companies they are in bed with or how many patients are overseen by their depts...I wonder..
There is so little information released each year in regards specifically to hcv, one would think by keeping up on the info they could be considered a "top doc"..
I am speaking specifically about treating hepc....experience is one thing, but how far does that go in a changing environment.

[Proactive]

along those same lines, perhaps there should be a distinction here between top hepatologists and top hepc treaters...For example, my doc is a director and head of end stage liver disease, as well as an asst. professor at a top ranked ivy league medical school...But iIn reality, is he any more (or less) qualified than the next fella (or gal) to be successful in treating my hepc? Don't get me wrong, I'm very happy with his treatment protocols. But I think we have to keep in mind that the treatment of hepc is a very thin slice of the hepatology pie..

[FlGuy]

What prompted my question to him were the type of posts you mentioned. So, I decided to ask him and he rattled off several name.  I was a little surprised that he did.  Totally subjective on his part I think. But, a lot of the names he mentioned are referred to in posts and some are the names that we see associated with studies, trials and articles.  And, to the best of my knowledge, all are involved in direct patient care.  Personally, I would want advice from a high-volume doc who has experience in all slices of the hcv world.

[Proactive]

I guess the skeptic in me just wonders if "top doc" status isn't more a result of social and political prowess as it is medical prowess..
and of course what I've written about is strictly from a treatment aspect , as opposed to diagnosis etc.

[GrandmaA]

I slowed down the progression of my hep. C disease with Dr. Zhang's herbs for 3 years. If you stop the inflammation you stop the progression of the disease. My alt/ast became near normal and in 2 weeks all the exhaustion went away. They also help during tx to lessen the side effects but you can't take all the same ones for both before tx and while tx. (sinomedresearch dot org). I'm genotype 1A. My biopsy showed I was a stage 2-3. Good luck to you.

[wyntre9]

Just my take;

As a one-time professional in another area, I can say that most of my former colleagues would NEVER recommend someone who they didn't absolutely believe had an advanced level of expertise.

Word-of-mouth is, i think, often more accurate than actual formal rankings and it's human nature not to want to promote someone or something that may eventually come back and bite you - eg; if you give a favorable reference about someone you KNOW isn't qualified and the person comes back to you questionuing your knowledge.

If a professional rattled off several names of other professionals i would think in most cases they would be qualified.

wyntre

[NYCMark]

Re: Top Doc.

I'm being treated by a so-called TOP DOC. His designation as such I think is based on the numbers of patients he has treated; the complexity of the patients he treats; his involvement in clinical studies so as to be on the cutting edge of new modalities; his participation in lectures and advanced medical seminars to bring current knowledge to those docs outside the biggest centers; the number of patients he attracts from all over the greater metropolitan area. Whether his success rate at treatment is comparable, better, or worse than others, I don't think one can make that comparison because he treats so many difficult patients - previous non-responders, relapsers, those co-infected with HIV and or Hep B, those with borderline medical status because of liver disease.

There are so many variables; someone who's a top doc for one patient may be not at all right for another.

Just my thoughts.

Mark

[Proactive]

thanks all for your opinions
"There are so many variables; someone who's a top doc for one patient may be not at all right for another" thanks mark, makes sense

[Teufelhunden]

Thanks. Sometimes it helps to step out of the box once in awhile and get a different perspective. Since this is my first time as a relapser, I guess it's kinda premature to base my previous treatment on something that I haven't experienced yet (my second treatment). I guess I was naive going in the first time and hopefully I'll be a little smarter and ask more questions on the second go around. If I learned anything this past year from the forum it's Research! Research! Research! Thanks again.

[ladywhy]

When I began tx, i was seeing a reg. Gastro. Found him to be uninterested in me or Hepc. Took busses, trains and subways to go see Hepatologist, Director of Hep. Dept @ a Univ. Hosp....this was @ my 6 wk. of tx. During consult..asked him about switching to Pegintron...due to BMI (and reading/researching this forum). Nope...he says...though I had not gotten near a 2 vl drop. Now I go back at 25 wk. with a higher vl than my, say 20th wk. I ask about stopping tx. He says I don't recommend. He gives me the option of double dosing Pegasys or switching (now) to SOC Pegintron. I ask NP and Himself...what dya think I should do...they shrug??? Hep Dr. says, "If you had started txing with me, I would have prescribed PegIntron...so I say, let's order that then. Come home, get on forum...and after giving it some more thought (Foggy thought)..I call back office and say double dose pegasys.... Now with more time to ruminate on things...I'm sortin' things out and wondering why he didn't switch me at 12 weeks (high vl) or anytime when I brought up the fact of being a little over the BMI? Now I'm looking for a 2nd opinion. When I started with Hep Dr., I asked will I be seeing him each time I made this (nightmarish) trip to hosp. He assured me I would. Here comes along an ambitious NP who wants to add me to her roster of patients...i don't know what's happening and go along with this scenario. Looking back I see now, that this was to my detriment...ah well, live and learn. This is a crapshoot and the best thing we can do for ourselves it to be hypervigilent advocates reg. our healthcare. It stinks....but on a happier note, it's the best there is...yadayadayada. Just my foggy take.
Now I'm double dosing on Pegays and 1  1/2 x the regular SOC riba............it's nuts. Reality is...at this date...I don't even know what week I'm in......

[Proactive]

"Reality is...at this date...I don't even know what week I'm in...... " I can identify with that!! It sounds like a second opinion would be a very wise choice...
I guess I'm just to questioning at times.., did the top doc make the lecture circuit, or did the lecture circuit make the top doc...   I guess it shouldn't matter.....;^)

[ladywhy]

...besides not knowing what day it is...how are you handling everything? I have yet to catch up with the forum...I finally got to visit with my mom and stayed away from the internet and just relaxed for the week. It did me good to see her...I didn't wanna come home.

[gauf]

I can relate. I tried to talk to my doc about weight based riba 1/2 way through treatment. I was so sick and foggy I couldn't even get angry about her blaise attitude. It is so important to be prepared and educated before treatment. Next treatment will have contingency plans ahead of time with doc, so I won't have to worry so much.

[Proactive]

glad you got a chance to visit with your Mom and take a break for awhile. Not to mention a break from the internet, I think I'm do myself..(g)
Me?
...............I feel like I'm swimming through jello and my mind can't focus on the tiny marshmellows straight ahead....;^)

[nygirl7]

I refer to Dr. Ira Jacobson as a top doc.  Not only does he have many years experience treating people - he is the lead investigator on most of the big trials that are done.  He is not complacent with just the medication and information we have today.  He has spent his lifetime learning, examining, testing everything that has to do with this disease.  He has more knowledge and understanding about not only what is out there but what IS coming down the pike.

He's the doctors doctor.  Not only is he associated with one of the biggest hospitals in the world - he's the lead guy there ... if a HepDoc got Hep, he's the one he'd most likely go to in this area.

That's why he is considered a TOP DOC.  They have made it their lives passion to beat this disease - not just treat it.  They are the specialists specialists and if you want to have one of the doctors that knows more than 99.999% of the other doctors - you'd go to one of these four or five guys.

[nygirl7]

someone who's a top doc for one patient may be not at all right for another"


I don't really think this makes any sense at all.  If you want someone who is one of the top doctors in a field...you'd pretty much assume he is the leading person of knowledge and expertise - technically they would be able to treat anyone...with just a matter of personality, finances and location to be the deciding factors.  At that level - they should all be the 'best' there is.

[ladywhy]

gauf: Congrats on losing the excess. (read your profile). Contingency plans sounds good for the fall. Hey, we are in the fall...when dya start? I have an appt. in January?!!!!...hopefully sooner if there is a cancellation with a new Hep. I truly wish/pray the next time around for you will be the last!

Pro:...............I feel like I'm swimming through jello and my mind can't focus on the tiny marshmellows straight ahead....;^)  DITTO!

[dointime]

" I guess I was naive going in the first time and hopefully I'll be a little smarter and ask more questions on the second go around."

Weren't we all .....
dointime.

[Liv]

Can't take credit for knowing much history.  I stumbled across "your" name at the Marine Corps Museum in Quantico, Va.  We popped in on the way back from D.C. last May and while walking around the exhibit hall noticed YOUR name and thought, "hey that's the guy who posts on Medhelp", so I read what it meant.  Both my husband and brother are (ex) Marines.  Being the "Teufelhunden" that you are I'm sure you'll give this fight your all.   Never having treated I can't imagine how you feel but sounds like you're re-grouping already for the next battle.  You could e-mail Dr. Bennett Cecil with your questions.  He told me that if his patients don't respond to one type of Interferon then he tries another or changes the dosages etc.  Everyone responds differently to medications and if there was one type of Interferon and one dose that worked better than another we'd all be SVR.  Best of luck to you and in the words of Winston Churchill, "Never, never, never give up".  Semper Fi.

[NYCMark]

Sorry you disagree.

Alas, not everyone who has Hepatitis can get to see one of the top cats in the field. Some are unaffordable for many because they don't accept insurance. Some are geographically removed from where the patients might be. Some may just not connect with one patient or another emotionally, spiritually, whatever.

In a perfect world, everyone who was sick would see the greatest expert in that field. Too many people are sick, not enough have insurance or money, some cannot leave family behind to get opinions around the country.  

That is what I meant when I said a top doc for one may not be right for another.

[gauf]

Thank you! I have sorta plateaued at the 12 lb loss mark, so trying to up the exercise. Just hate the thought of toxing again cause I feel sooooo good!  Depends on how much I lose, to know when to start. No longer than the new year in any case. Waiting to hear back from romark on getting Alinia as well.  

[charm27]

Dr. Dietrich's 45 minute video is up and running.




See above link from Wyntre.