I have an appointment at Duke and have a few questions

[kstar]

First, I would like to say "thanks" to everyone for the wonderful support and information.  I will be scheduling an appointment at Duke right before the end of the year.  I have made my mind up to offer myself to a clinical trail.  
My questions:
Is anyone treating at Duke?  
Do you live outside the area (I will be traveling from Michigan)?  
What is the process?  
Does anyone co-live (share in an apt etc.) while treating?  
Any other information in regard to trails, Duke, travel and treatment would be welcomed...Thanks again

[Liv]

Hi:

Most likely they will not due a bx. on your first visit with Dr. McHutchinson.  My first visit was an initial consultation.  He might suggest that you get a bx. elsewhere and just have the results faxed to him to discuss tx. options.  He might not even suggest a bx.  Don't know.  In my case he didn't think a bx. was necessary unless I was going to tx. or try to get into a clinical trial.  Hope this helps.

[FlGuy]

Sorry to hear about your cousin.  But I'm glad to hear that you are going to at least take a look at some options that might be out there in the future.  Hope you're feeling better.

[susan400]

I haven't been to Duke, but I do have an appt. at Mayo Clinic in Jacksonville on Oct. 31st.  I have super mixed feelings on getting into a study.  It's hard to be any kind of optimistic on my chances with any other treatments.  God is the only one who is our ultimate healer.  My cousin just went through hell on his chemo for leukemia and went to heaven last Wed.

Susan

[kstar]

Thanks again for all the info.  I am waiting for the office to e-mail me with appointment information.  It looks like I will be heading your way sometime after Thanksgiving, according to my last conversation w/the hep department.  I still need to find out from them what will be the plan for my first visit, then I can decide on flying or driving.  I sure hope they plan on doing some diagnostic testing when I am there.  It would be a very long ride for a office visit..

[Liv]

Not sure of the names of places you could stay but since it's a big college town you could do a google search on local hotel/motels near the hospital (Durham, N.C).  I live about an hour away.  Are you flying in?  If so you'd probably go to Raleigh airport (RDU).  Then it's about a 20 min. or so drive from the airport to the University (hospital).  Dr. McHutchinson was able to evaluate me based on years of labs, an abdominal ultra-sound, Fibrosure tests and physical exam.  Being a nurse, I was really hesitant about having a bx.  I've heard and have been reading that many Hepatologists are now preferring the fibrosis assays, (Fibrosure,Fibrospect) over bx. but for clinical trial purposes a bx. is needed.  Of course there is a margin of error for the Fibrosure and they say it's only accurate on either end of the spectrum.  It's not accurate for middle stages of fibrosis, then you'd need a bx. to get a clearer picture.  

Even if the conventional tx. isn't recommended for you at this time, you may be a candidate for a trial.  Do you have an app't. scheduled yet?

[FlGuy]

I start again in about 2 weeks.  Geno 3a. Did 24. Relapsed. Got my ticket punched for another ride.  Many years ago my wife and I were involved in a 'cutting-edge' IVF research thing at University of Iowa. She was in the univ hospital and I was visiting for the weekend (I had to commute to work and got there for the weekends). Iowa is big-time college football country. Some kind soul left some tickets at the hospital to be given away to patient or 'guest'. So, I got to go to the Michigan State game - stadium just next to the hospital.   It was great and I'll always remember the kindness of that stranger. It was way cool. Hope things go as well at Duke (BTW - 2 kids)

[kstar]

Where are you in regard to hep c?  Treating still? Clear of the virus?
Thanks for sending you wishes....

[FlGuy]

When I went to one of those 'top liverheads' I asked him to name some others.  Surprisingly, he named names.  One of the first few was McHuchison. No doubt, you'll be in good hands. And, that's a nice part of the world in NC.  Nothing better in world of hcv than to get the straight scoop from someone who knows.  Hope it all works out for you.

[kstar]

FlGuy...if you read Liv's posting that was the reason for Duke.  I need someone straight forward, not pushing treatment but also ready to treat if they feel it is the best option.
Liv do you mind sharing a little info in regard to what i should be prepared for since I am traveling a few miles to get there such as overnight stay, how did there determine not to treat you without a biopsy, and whatever else you feel helpful.  Do you know when you will start any kind of treatment?  Sounds like you may live close to Duke, any recommendations for places to stay around the hospital?  Thanks for sharing your experience, I think I will be in good hands..

[Liv]

Hi:

I also see Dr. McHutchinson at Duke Univ.  In fact I have a 6 month follow-up visit on Nov.1st.  He's an extrememly busy guy.  Travels all over the world and as I understand is in charge of coordinating the 950 trials through-out the country. Bring copies of all your labs, tests and scans.  Sometimes when you schedule an app't. they'll ask for you to fax everything ahead of time.  I actually made a list of all my questions and concerns so that I wouldn't forget anything.  He's very smart, has a great Australian accent and is very honest and upfront.  He doesn't push tx. If he thinks you can wait for better drugs, he'll tell you.  I also have never had a bx. but when I was being considered for the trial of course would have to have gotten one.  I was excluded however.  You're in great hands.  Someone else who posted on this board also went to him but I forget who.  Best of luck to you.  p.s.  I couldn't get tickets either and my son is an alumnus.

[FlGuy]

Just because you have hep-c doesn't mean you're not healthy. It's like saying if you're hungry, you must be thin.

[FlGuy]

If their success with hep-c is in proportion to their basketball record your success is a slam dunk (sorry, couldn't resist).  I can see the conflict, won't biopsy unless you plan to treat, can't make an informed decision to treat without a biopsy.  Truly an conundrum.  Just out of curiosity, why Duke?

[copyman]

get the basketball tickets and use to bribe your way into to seeing the doc of your choice :-) i do wish you the best with your visit there.

[FlGuy]

A few things to keep in mind at Duke:
1. Hook up with Dr. McHutchison if you can, he's the godfather of VX Trial and one of those hep-c grand poobahs
2. Bring copies of whatever medical records you have, including biopsy reports.  Ask in advance if they want you to bring the slides too.
3. Keep in mind that they might not be recruiting for vx trails right now, but there may be other trials you qualify for. If interested, get the upcoming schedule for next vx phase
4. Read today's thread that discusses the skin issues and the vx950 participants
5. Have a conversation with your insurance company about coverage
6. Try to find out if you can get your hands on basketball tickets.

[kstar]

Diagnosed in May, as I mentioned, only blood work..My only doc visit was at a teaching hospital and they recommended NO biopsy unless I was ready to treat.  I am conflicted in regard to treatment w/the standards available so that is why I am headed else where.  First, I am not impressed w/the % and the side affects.  Secondly, I have not taken an allopathic med in about ten years.  Been a vegetarian for about fifteen years, practiced yoga for the last thirty and would be amazingly healthy if it was not for hep c.  Such is life...Thanks for your help...I will check game schedule and call on off hours...In fact, I will make sure I only allow treatment when their team is winning..:)

[FlGuy]

I didn't treat at Duke, but someone here is - I forget who, it's not Jim.  It may be one of the 'dog' members, but not Beagle.  But I recently had an appointment with similar docs, in a similar setting (University, research, trial) kind of place.  It was a one-time event because Inusrance wouldn't cover it.  Paid cash for a consult and tx doc agreed to follow their instructions. Being involved in a trial (vx or otherwise) keeps you in close tabs with the trial folks for bloodwork, meds and other stuff so it may be kind of confining and a significant committement on your part.  Not sure what your hep c history is (never tx, relapse, non-respond) but any complete consult would probably require a bx for the 'full picture'.  Ask the Dukies when you call them.  Just don't call them during a game, no one will answer the phone.

[kstar]

Great advice...I will work on getting those game tickets asap...(laughed like crazy)...
I have never had a liver biopsy so the only documents I have to bring to the table are my blood tests.  So, that part is handled...The insurance company is going to be the biggie.  That was why I asked about shared housing..I could make a temporary move.  

Have either one of you had treatment at Duke?  What is the process?

[jmjm530]

I'll just add to start getting hold of your biopsy slides now, as the process can sometimes take awhile. You want the entire slide set including the special stain slides, not just the main slide. Also, before you committ to any trial, ask for the full-disclosure document on that particular trial -- then take it home, read it, and do some independent research. Lots of different trials going on now, and sometimes -- human nature what it is -- the trials that are offered first are the ones they may be having trouble filling up.

Good luck.

-- jim

[FlGuy]

Getting into see one of those docs is probably a pretty tough ticket to get, although probably easier to get than a Duke basketball game.  If you don't already have an appointment, it might be hard to get one by the end of the year.  And, they will probably ask you for some insurance company committment in advance.  Should start on this stuff right away.