Finally Saw my GI Doc today!

[BronxRican007]

Fellow Warriors

Finlly saw the GI doc today for the 1st time and got my viral load. My VL is 359K which is low compared to some folks. Because I'm overweight the doc wants me to lose 25 lbs to give me a better shot at SVR. I've lost 15 lbs in the last 30 days thru diet and exercise. So I think I can get down 25 lbs more in less than 60 days.  I have a gallstone that he wants removed prior to tx. I'll have my biopsy done during the gallstone operation. As soon as I'm done with those two preliminaries, I'll go right into tx with Peg Intron-2b and Ribvarin. He also laid out a back-up plan if I don't acheive a 2-log response at 12 weeks. More good news--my ALT/AST are  down (about 50 points).

I'm pretty psyched about the VL info and the fact that I was real comfortable talking to my doc. He answered all my questions and seemed willing to work with me to give me the best shot at SVR. The fact that he told me the backup plan early on (another type of Interferon/more intervals/higher doses) made me feel more comfortable.

Well fellow warriors, in your experience what do you make of the info presented? Appreciate yout thoughts and comments!

Thanks
Bronx

[nyhepc]

rearfang, thx for the the offer, will let you know. i have to check into procedure...with ins coverage and all. so glad to hear things are going well for you, i check often to see if you've posted. coffee still sounds great

dutch_boy, how right you are. once a redneck, always a redneck. i lived in new jersey for several years,tried to pass as a yuppie, LOL.  is good to be home.

having a bit of a hard time assimulating all this. more so as tx time gets closer. the thought of finding a new doc is intimidating, i usually handle things better than this. but...one step at a time

[dutch_boy]

nyhepc,  I am concerned that your doctor would pull you off the tx if you are still detectable at 12 weeks. Lots of people are still detectable at week 12.....and continue treatment. I was lucky several weeks ago as I recieved "undetectable" results at week 12. In my opinion your doctor should be looking for a 2 log drop minimum and even then if you didn't achieve that look for other options for you to consider...potentially the Infergen or the option to continue on present treatment but for a longer period as others have done.  I would look for another more "agressive" doctor if I were in your shoes. In willing's post above he states that most doctors follow the "standard of care" path which is very true....but there are doctors who will step just a little outside that box if needed.  As for living in the boonies in upstate N.Y. I appreciated your feelings.  I grew up there and miss it dearly....boonies and all. Now I live in a mid size town in Georgia but my family still lives upstate N.Y. in very small villages around Johnstown, Gloversville, Saratoga area (west of Albany, east of Utica). If rearfang's kind suggestion of Dr.Polito in Albany doesn't work for you I would be happy to ask my brother ( GI doctor in Saratoga area) who he would suggest in the capital distric. I do believe the Albany Gastroenterology has a good reputation. I'm sure there are good doctors there who may be more agressive than your present one.  If rearfang/Lauren has had a positive experience with her doctor it sounds promising.  Also read the earlier thread by niki12 "what to ask the doctor" which has excellent suggestions for those "interviewing" for a doctor that suits you. I would use this as a guide to help you. I hope this helps and let me know if you need me to do some homework for you in the capital district. Nice to know another "upstater" which I consider WHO I am...no matter where I live!
Best to you,
Scott

[nyhepc]

morning, think i'm confused. on previous posts, i've read about people who are still detectable at 12 weeks and who go on for an extended time. have also read about interfergon. are we talking one in the same? i guess my question is , would someone extend the original peg, or automatically switch to interfergon.
i also saw dr yesterday. he says if still detectable after 12 weeks, he will pull me off treatment, period. mentioned consensus peg (interfergon) in passing, wouldn't commit to the procrit or neupogen...don't think i like this guy!!!!
a disadvantage to living in upstate NY boonies is that the GI docs are few and far between. i will start some research into albany docs.
have a great day

[BronxRican007]

Again, thank you all. My doc is a gastro guy and although he's active duty military, he seems very enlightened to the latest studies. He considers a 2-log drop or an undetectable test result as indication of EVR. However, from reading these posts and the studies, I'm aware that low VL doesn't mean much as a prognostic indicator of actual liver damage or the probability of SVR. But my brothers/sisters, I'll take what I can get...and if all I got is meaningless "happy" numbers then I'm content to be "happy". It's better than information I had when they dropped the HCV bomb on me.

Cheers,
Bronx

[willing]

the discussions on this board of variations in treatment length, dosage, etc. can be  confusing. It's worth keeping in mind that treating physicians can be grouped into roughly three classes: those who follow the prevailing "standard of care", specialists who  are comfortable modifying the standard treatment, and researchers investigating new treatment (which requires explicit release forms). Following the "standard of care" is the path most Drs take; it ensures you're not likely to do damage to your patient and get sued and it's also the level of care that ins. cos. can't get out of paying for. The "standard of care" is built by consensus and constantly evolves, but does so slowly - specialists who track recent developments can offer their patients the benefit of alternatives that may take 1-2 years to be incorporated into standard treatment. Web sites devoted to Continuing Medical Education (CME) are usually the best place to track changes in the "standard of care" (medscape is a very good one). A typical statement of the current standard of care regarding tx duration  is :

"The standard anti-HCV treatment algorithm in treatment-naive patients calls for a quantitative HCV RNA assay at baseline, followed by another at week 12.33 A ≥2-log drop in HCV RNA or undetectable HCV RNA at week 12 indicates EVR and is predictive of SVR.25,34 Up to this time point, the algorithm is the same for all patients, regardless of genotype. The duration of treatment after this point for patients who achieve EVR, however, is different depending on genotype. Patients infected with genotypes 2 and 3 are typically treated for an additional 12 weeks (a total of 24 weeks). In contrast, patients infected with genotypes 1, 4, 5, and 6 are typically treated for an additional 36 weeks (a total of 48 weeks). Irrespective of genotype, treatment is typically discontinued in patients who do not achieve EVR unless it is continued for histologic benefit alone"

(from a CME site.). Kicking patients off tx because they are still detectable at 12, even though they have had a 2-log drop, is definitely outside the current standard of care. You should have your Dr. explain why he's recommending this path and be prepared to switch if you're not satisified with the answer.

[LvdByGod]

hey bronx, what a great thing that your dr is moving on this and sounds like he's on top of things...he's probably talking about infergen if you don't clear by 12 weeks on your EVR TEST= early viral responce. i agree to make sure he is on target about "not lowering peg" if you get too anemic or sick on treatment but to rather find other ways and meds to deal with the side effects.

he sounds very thourough in his approach to have you loose some to raise your odds of clearing before starting tx...and thourough that he will do the gallbladder stone first...it certainly, at least for now, sounds like your dr is a keeper. is he a gastrointerologist or a hepatologists? also make sure he gives you a full dose of pegasys/pegintron for your weight and a correct dosage of ribaviron for your weight at the time of beginning treatment...i'm thinking you should be on either 1200 or 1400mg for your weight. staying on the right dose of this stuff is really important esp in the first several months of treatment.

good luck my freind, you're doin so great!!! i pray that you have great news on the biopsy report too!...that would be the sweetest news. i also pray for your saftey and the drs wisdom and skill in the gallbladder opperation too...let us know when you go in for that...they should be able to get a good look at your liver durring that opperation... i wonder if they would take a picture of it for you? that would be cool to have.

go bronx! your on your way to killing that creepy dragon!!! and joining the forces of the dragon killers...got sword in hand now!!!

sandi

[Bill1954]

Hi all;

I thought this might be of interest, especially to those that are patients within the VA system. (BronxRican?)

WASHINGTON

[LvdByGod]

yea, were sort of in a period now where drs are inbetween on what the best approach for a slow responder or non responder would be. some would continue the the same tx but for longer times and some would just discontinue the one like pagasys and begin the other like infergen...and some will take you off treatment with out offering anything else...these last ones are uninformed as to the latest ideas....if this happens to you, you should just read as much as you can about both aproaches ahead of time and pick your poison...so to speak :O) and if you must pick a new dr have that all lined up ahead of time so you don't miss any days of some form of treatment and shots. fight to stay on meds for the whole time prescribed or extended. if your dr isn't working for you but against you...dump him like a hot potato! God will provide another dr for you...

with these drs, we need to have the info, and make sure they are on board with our research and prefrences or else we will only get thier research and prefrences and we won't know if they know their heads from a bump on a log. this is why you should read all you can on these things and come to dr appointments prepared and able to watch out for yourself...

hope this helps, you sound like you are on the right track so keep up the great research...and then you will have the info you need to make sure they are doing right by you...one can always switch drs if they are not cooperating with your treatment desires or if they are not "up on things" as they should be...

nice to talk to you,

sandi

[snook_man]

Low VL does not account for lower liver damage, but it does give you better chance at SVR. Alomost all the studies and Drs that conduct them favor a patient with a lower VL..

[cuteus]

don't count on the low vl advantage too much, since at least 3 or 4 of us  on this board did not clear the virus by wk 12,then you get the vl in the millions that clear way before the 12 wk mark. don't give those numbers too much wt.

[rearfang]

Hi Lorrie,
I go to Dr. Polito in Albany (Albany Gastroenterology) on Washington Ave. I have already asked about the Procrit/Neupogen and was told it would be prescribed if necessary before any lowering of dosage is considered. I did not ask about the 12 week pcr, but I will not consider stopping tx and am confident that I will be allowed to continue, as the PA who I see seems willing to work with me. Let me know if you want the phone number/directions. They have several GIs there, but you might have a better shot at finding someone you can work with. Let me know.
Lauren
P.S. We still need to get together for that cup of coffee.

[LvdByGod]

layla is right. i forgot to mention the 2 log drop. if you are not clear they will also let you continue treatment if you have at least a 2 log drop in viral numbers...but if not you will want to concider the stronger treatment plan "infergen" or extended tx. let's pray it never comes to this though and you clear or at least get your 2 log drop.

[layla]

I did not clear at 12 weeks although I did have a 2 log drop. I extended to 18 months on the same tx. Pegasys and riba. Others have done this also. I believe it is only if you don't have a 2 log drop docs stop tx or consider infergen. Some wait for the 24 week test to decide to stop. You should be clear on what your doc is actually saying. LL

[GreatBird]

Actually a low VL is a good sign for clearance, so it does count for something. :)

[BronxRican007]

No bx yet, that'll be done when they yank the damn gallbladder. The doc and I hit it off well. the appt was a true exchange of dialogue.

I'm a type 1b and my doc says about a 3rd clear but that # takes into account the folks who continue drinking, the overweight folks, the people who dont stick to the program, etc, etc. If everyone did what they had to do all the time, the avg SRV rate would closer to 50% in clinical practice...that's my doc's opinion anyway.

You guys are right about the numbers...but Good numbers that don't mean diddily are better than bad numbers than don't mean diddily...gives me a sense of hope.

Thanks for the advice on the eye doctor...I'll make that appt in the morning. My GI told me he'd have me on procrit etc before he lowers my dosage. HE talks like an aggressive therapy Dr.

Thanks for your inputs
Bronx

[dutch_boy]

Bronx, Sounds like your doctor is a KEEPER!  Just the fact that the doctor is looking out for you in many ways already is so promising. Very impressed he wanted you to loose some weight to have a higher chance at SVR and congratulations on rising to that challenge! I'm most impressed your doctor talked about a plan "B" with you right up front. This tells me he is in this WITH you and will help you achieve your goal of SVR and not take shortcuts!  Be sure to ask him WHAT he would do if your RED or WHITE cells drop too low.  This is important as you don't want to reduce your dosage if at all possible as some doctors opt for. My hope is that the doctor would prescribe Procrit (red) or Neupogen (white)as needed in those situations as some doctors are reluctant....I was lucky as mine also immeadiately Prescibed Prorit at week 4 for the duration of my treatment..I'm 18/48 now and struggling to keep the numbers up. I refuse as the doctor does to lower my dose. Has your doctor advised you to see an eye doctor BEFORE treatment so they can determine what the back of your eyes look like before treatment?  You should be checked every so often during treatment to see if all is in order with the optic nerves.  Congratulations on what appears to be a good doctor who is looking out for you! Just ask those couple questions more.  Others have not been so lucky with thier doctors and lots of folks have limited options.  I found a good one where I live (Gastroenterologist) but I have to probe for informaion on my own Alot and recognize that I often have to be a "squeeky wheel needing the oil" to get answers to my questions. This group has been so informative...wonderful.....so good luck to you....you sound like you are on your way and have a good attitude which in my opinion is 3/4 of this battle with this virus! Best to you and hope your biopsy shows little damage
Scott

[rifleman]

I heard that viral load doesn't mean much when it comes to liver damage, but my VL is 3 times what yours is.  I'd rather have the lower number.
As for the ALT/AST, I hear that isn't much of an indicator either.  That is a shame, as my ALT (last March) was only 56 and my AST was in the normal range at 36.
Are you a type 1?  I thought I saw a post where you said that.
Well, in any event, you don't seem to be sitting on the fence about getting treated and have decided to eliminate the virus.  Me too.  Getting a gallstone removed shouldn't set you back to many weeks.
DJL

[Moeymitt]

With an attitude like that you can't loose! Sounds like everything is on scheldue, how about a bx, have that done yet?? Would be a good idea. Glad you can talk with your GI. I fired mine today and am looking for #3. Good luck down the road and keep coming back and letting us know how you are.