should i change hepatologists

Ugh...so, i'm not feeling it from my current hepatologist because:

1) last time at appt he basically walked out before i was done with all of my questions

2) today, he told me to start my triple therapy (incivek) this friday (meds approved but not ordered yet) and he was like you have to eat some food when you take the incivek. I said yes, you have to take it with 20 grams of fat and he was like, oh ya thats right.

he has 5 patients currently on the triple therapy.

There is another hepatologist 70 miles away (scripps clinic in la jolla) that was involved with the clinical trials for incivek and i'm sure they are WAY more hands on and familiar with managing and dealing with side effects. But I can't get in to see him until october...

I was a non-responder in 2002 with the SOC and I pretty much know what to expect regarding side effects. If I switched hepatologists, it would be comforting to know that I was in better hands.

Should I get a second opinion or just stay with my current hepatologist and get started this Friday?

Any thoughts would be greatly appreciated!

peace

[Boobert]

Sounds like he has too many Patients and not enough time but your other option is 70 miles away,wow. Tough call, you really need your Doc on top of things. You need to be a little firmer on getting questions answered on treating, rescue drugs and so on. If not walk away.

[OC]

well he did say that he would be tracking the blood tests and would prescribe procrit and neupogen as needed.

[Boobert]

That's the important stuff, go with your gut but 70 miles away personally I would stick with the one you got. Once you start treating I'm sure he will be a lot more personal with you. Good Luck,

Bob.

[streamline569]

That's exactly what it is. When a doctor is do busy and doesn't have a PA  they don't seem to be into minor details like wanting to tell you how to take your pills and the simple things that would use a  nurse to do. They can mess you up if you don't stay informed, in my opinion, but as long as you keep yourself knowledgeable you should be OK. He's going to watch your blood work, make sure you get copies of everything so you can watch as well..Pegasys has a nurses hotline. use it to ask the questions about how to take the medications, store the medication, what food to eat . Tell her about your side effects and she'll let you know if they are normal. I think we can't expect a doctor who works alone to do it all and it sounds like the one you are using is working alone. Personally I wouldn't travel 70 miles just to see a doctor. It's your life and your decision. Good Luck. Just one thought, I think when you start with a doctor you may not be able to change, I could be wrong on that but that was what I was told because he is the prescribing doctor for the medications. So think carefully and make sure you know his track record.

[gonnabhepcfree]

I don't know about Scripps Clinic but my Dr Hassanein is world renowned.  He is in Corondado, San Diego..call him..he had another location.  Southern California Liver Center.  good Luck

[copyman]

stay with your current doc. if he wasn't a hepatologist I would say run away. how about if the next doc is worse? it don't sound that bad to me. if he is going to write you a script for triple therapy then that is half the battle. you will be fine

[OC]

he does have a nurse, but she is on maternity leave and the one that is taking her place is AWOL...he does have a fellow that comes in first and gets all of the small stuff out of the way before he comes in...it's a teaching hospital UCI Medical Center...

[OC]

Dr Tarek Hassanein, isn't in my network...He was one of the first that I looked up...

[copyman]

Most all good hep docs have fellows. All have the same routine, the fellow does the dirty work and then the big shot comes in, feels your liver for a few mins and rushes you out.  same old story. but I would rather have that then a GI that knows nothing about hep c but will sit with me for 1/2 hour pretending he knows about hep c.........

[OC]

he is the director of hepatology at UCI Medical Center...they also have another hepatologist that i know of John Hoefs.

[HectorSF]

Jut my 2 cents worh, It is hard to judge your true relationship with your current hepatologist. As putting into words the nature of the patient - doctor relationship is difficult. I guess you are saying at the very least his bedside manner could use some improvement.

What I would think about is what is likely to happen if you have serious side effects. Can you trust this doctor to help you or will she/he but rather hands off and have you stop treatment rather then battle through the side effects?

A lot would depend on how difficult it is to go 70 miles to the other doctor at Scripps.

There is no need to start treatment immediately you can easily wait a few months if it will help you to have the best chances of SVR. Being a non-responser, you already know that  treatment will be difficult.

I know it is hard to have to change plans and wait to start treatment. But I think the most important thing is that you have a successful treatment. That will make any extra effort well worth it.

It is a tough decision that only you can fully judge the pros and the cons.

Good luck!

Hector

[crossroadsec]

I drive almost 2 hours to see my liver specialist. It's worth it to get the expert and caring treatment you're gonna need. It's not always convenient. It takes all day and I have to take off work. But I have no doubt it's the best place for me.
Trust your instincts. It's hard when you mentally plan to treat and have it postponed. I was gonna start in April, then May and finally got labs in good enough shape just when the protease inhibitors were coming out.
Good luck, Karen :)

[OC]

let me ask you...would you drive 70 miles for peace of mind and the fact that the doctor has more hands on experience with side effects of triple therapy thru their clinical trials?

peace

[copyman]

Hector makes some good points.

Personally I would rather have a hepatologist that is close to my location then having to travel 70 miles as side effects arise. Actually I drove about that same distance to see a Hepatologist when I first found out. He was the head of a liver clinic at a teaching hospital. His office visits were an all day affair. At least 4 hours in the waiting room. That was when I realized this Hep C business is a waiting game. Always waiting for something, appointments, test results, etc etc.

As much as I tell people to see a Hepatologist I ended up doing a trial at a GI's office. This GI had the largest trial center on the east coast and made me an offer I couldn't refuse, a spot in a telaprevir trial where everyone got the real drug :)

[OC]

the one in la jolla (70 miles away) is Dr. Paul Pockros, he is bigtime in clinical trials with triple therapy and a ton of others.

[OC]

that is awesome...just thinking the guy down south may (going out on a limb here) prescribe something that is going on in, say, a phase II or phase III trial instead of the triple therapy (do you think that's possible)?

[crossroadsec]

i just want to add i get labs drawn, go eat, wait maybe 20 min total and spend the rest of the day w/ 3 of the staff taking turns discussing my current stats, SE, nutrition. We've develped close relationships. I used to take something to read, but never had time. One day they drew 2nd labs n put me in a room to nap. lol.
It'll feel great to get this decision made. Karen :)

[copyman]

I would rather do a proven drug then a phase II or III trial drug. There is a lot of data to back up the two new PI drugs. Plus I can tell you that telaprevir worked for me.

[meakea]

It's a toss-up.  Pick whichever route your gut tells you and you will do well.  

I do think that you are fortunate to have a Hepatologist so close to you.  The closest Hepatolgoist in my area was 2 hours away so I went with a GI.  The first GI I saw gave me the creeps and I didn't like his lack of information about treatment so I put off starting treatment for 3 months until I could get in with a different GI.  Glad I made that switch (even though I had to wait 3 more months) but it didn't make me have to drive 70 miles to make the switch.  Luckily my treatment (riba/interferon) went rather routinely so I didn't require any special rescue meds or any special interventions so the local doc did fine...or I should say his nurse practitioner did just fine since she was the only one I saw all through treatment.

[Bali05]

During my tx I found that the geographical vicinity of labs/pharmacy more important than the hepatologist.
Communication is very important with your Dr. and nurses but this
can be done via phone or email a lot quicker than physical appointments.
Getting all your questions answered in time and getting copies of your
labs when they are ready was most important to me.
No matter how good or close your hepatologist is you still ALWAYS
have to be your own advocate and learn as much as possible about
your tx especially when the the meds are brand new.
It is also a good idea to have a local GP onboard to keep track of
your general health during tx.

I would pick the hepatologist that is most responsive to you via
phone,fax and/or email and who will send you lab requisitions/results and call in prescriptions as needed in a timely fashion.

[streamline569]

dig this I just got a call to have my next delivery. They want to deliver more incivek. I just noticed that I've been approved for  6 months of incivek. Now if I didn't know better and Ikept taking  the incivek, no one would have noticed, Not incivek ,not my doctor , not my insurer. Still waiting for a call from my doctor just to confirm that 12 weeks is all I was suppose to be approved for. Wonder how many of these mistakes are made and this is why we have to know as much as we can, not just follow doctor orders.

[OC]

update:

i just found a GI, that is close, that did clinical trials with incivek...do you think this would be a good option even though he isn't a hepatologist, but has vast experience with the new triple therapy?

[OC]

here is his credentials:

http://www.agmg.com/drdemicco.html

let me know what you think...

peace

[pcds]

Only you can say what your lifestyle is and how 70 miles, with southern CA traffic will be like.  If you work it can be a real issue and when on treatment driving that distance can be a hardship, but only you can really say how it will effect your life.  I see my doc 1x month, have weekly labs and have staff to talk to easily at his office. So potentially I could treat with a doc 70 miles away.  Although if I get the dreaded rash they want to see me right away.  Having someone with experience with new drugs is a good thing. That's what made my decision.  But my new doc is very quick to dose reduce my old doc didn't do it as quickly, but that was old tx. This stuff is different from SOC.

[OC]

ok, so i saw the GI today and I have to tell you that i feel more comfortable with him, then with my hepatologist...i thought he did clinical trials with telaprevir, but i was mistaken. he has done clinical trials with other drugs...he gave me his email address (which is cool) and of course i could call him...i feel he would be with me every step of the way...plus, it seemed to me that he was WAY more informed about telaprevir than my hepatologist.

he told me that the hepatologist that i have an appointment with in la jolla is mr. telaprevir (dr paul pockros - teaching professor). so i'm not sure how much one on one time i could get with him.

he said that he's treated more people for hep c in socal, than anyone execept dr pockros.

i'm seriously leaning on going with this GI ASAP, than waiting 2 months to see the big dog regarding telaprevir.

thoughts?

[curiouslady1]

Not sure what you mean by WAY more informed.  It is up to you.  Any doctor you check out should be checked out independently of their bedside manner when you are dealing with something as serious as Hepc.  If you were going to a PCP I would say that it is great to go by impressions since 60 - 80 % of their business is related to anxiety issues.  However, treatment of serious illness shouldn't be based on whether the person is a nice guy or would make a great father figure.  Matter of fact, that is what a treatment team is for.  It is particularly important when searching for a good doctor for surgery and other serious interventions.  It is also important to check out the facility they are associated with.  Where do they have hospital privileges? Some hospitals can make you much sicker leaving than arriving.  An important question to ask is "how many people like me or with my disease have you treated?"  and "what is your success rate"?

[flcyclist]

At my recent appointment with my GI, he gave me almost an hour of his time. We had several things to discuss, including issues with his staff, which he knew he had to address.  He probably would have given me more time and I never felt rushed.  I'd be concerned that you might not get that time to discuss with the "mr. telaprevir", if you get to see him, since his patient load sounds way too large for him to handle.  You might only get to see the intern or the staff during visits.  One on one with the doc is important.    I think both a competent to guide you through trt, but you need to research both and choose wisely.  The 70 miles is a long drive, but considering you might only visit him 4-5 times during trt if no issue, not really a big deal breaker there for me.   Best luck in your choice.  

[OC]

ok, now this is really cool...i sent the GI an email an hour ago and i already got a reply from him, from his iphone, (he's 65)...:-)

[OC]

i've decided to go with the GI, meds ordered today, should get a call from the pharmacy monday or tuesday for shipment date...wanting to start next friday.

peace

[flcyclist]

Try to avoid a Friday delivery from the specialty pharmacy.  If something goes wrong with the delivery you might be without until Monday.  Also, discuss with your GI what if the meds come late, does he have any reserved at his office for patients?  

Good luck getting started.  

[cursed180]

id probly stick with him as he is prepared to prescribe rescue drugs and is less travel which you will not want to do when on tx aqnd just do your research and make sure he is on the ball and does what your happy with or then walk away imo

[OC]

great idea about the doctor having reserves, i will check...i would be trying to get a wednesday or thursday delivery as i want to start on friday AM.

peace

[OC]

yes, i feel he will do whatever i need him to do.

[OC]

got a setback today:

the GI called me and said, i thought you were naive, didn't realize you were a null responder...i won't be able to give you the attention that you would need if you have side effects, so he gave me a name of someone...bummed, but probably for the better!

peace

[streamline569]

That was nice of him to let you know he was not qualified to get you through. So your choice has been made. He does not have the experience and knowing when to give you rescue drugs and keep you on treatment is the road to curing hep c. Learn all you can on your own, even with the best they make mistake and you have to watch listen and be able to have a doctor who is willing to do the same. Good luck

[frijole]

OC
Apparently you did not give the GI all of your records when you consulted with him?  That is a significant oversight -- not knowing you are a null responder.  I think the relationship with a doctor is a two-way street and you have a burden to provide all prior documentation. You certainly are doctor shopping.  Your choice, but I really saw nothing wrong from what you said about your first hepatologist.  You could start treatment with him and still keep the October appointment and cancel it if you decide to stay where you are or change heppos during treatment.  Just because a doctor does not have a good bedside manner does not mean he is not a good doctor

I don't know what your liver damage is but mine is grade 3, stage 3-4 now and I have much more confidence treating with a hepatogist than a GI even though he is 350 miles away.  I have to fly in to appointments and it is an all day affair.  However, now being in the beginning stages of cirrhosis, I feel much more comfortable treating at a Liver Transplant institution (not that I think I will ever need a transplant) because they will be there for me through treatment and beyond.  I am pleased so far (week 3) with being able to talk to the medical assistant when necessary.

frijole

[OC]

yes, i'm glad he let me know, thanks!

[OC]

you couldn't be more wrong, i brought enough paperwork to choke a horse, i have copies of blood tests going back 25 years...i made it totally clear i was a null responder, he might just be getting a little old at 65...of course i'm doctor shopping!!!...as far as the original hepatologist, it was more than just bedside manner...i'm also going to see the chief of hepatology at cedars sinai in november (earlier if there is a cancellation)...btw, i'm stage 2-3, grade 2-3...

peace