DR. Jacobson on Vertex, Geno 2 and 3, Drinking, Smoking and ME

[NYgirl]

I'll keep my personal stuff quick, I will be treating the additional 6 months. He did the TMA test yesterday down to 5 copies and if it comes back negative...all is a go.

He was wonderful and so was his PA, Tom. They really were so smart it was such a great feeling just to be in the presence of a man who is at the forefront of things.

He said Vertex won't be on the market for NON-tx naive until at least 2010 and it WILL be protocol with Riba and INF. Depending on the data that they compile and SVR will be how LONG tx will be.

They are discovering that they are NOT looking to week 12 to be UND any longer. They are NOT counting on two log drops. IF you are UND at week 4 pretty much your chances are very good for SVR but if you do NOT in general...your chances go way down.

HE said they are seeing a LOT of geno 3s relapsing (as Kalio knows) and Geno 2 as wel.  Much higher than the statistics and these days it's NOT "oh good I am geno 2!" at ALL because not only are people NOT getting SVR but...all of the new medications are being geared towards GENO 1s so the other geno's are not being studied and having meds working towards THEM so they are sort of totally screwed.

On one hand he says I really have to quit smoking cause it's NOT good for my liver = the study DID state that geno 1's dont have a harder time clearing if they smoke but the other genos do...but he feels that really makes no sense at all.

He said he does not know one single doctor that would say anyone higher than a stage 0/1 should drink alcohol.   (Continued below)

[NYgirl]

He said that over stage 2 should completely abstain from all alcohol and that he is one of the most liberal thinking when it comes to alcohol but if you have ANY degree of liver damage while obviously one drink once in a while won't kill you - you'd have to use stupid thinking to think it wasn't going to by chance hurt you.  He said he would NEVER advise anyone it was OK to drink and never ever more than one/two a week IF you were a stage 0. But someone like me at stage 3 should NEVER EVER DRINK AGAIN (one/two a year would certainly be ok and wouldn't kill you...but NOT daily or weekly drinking EVER).

If you drink DURING treatment the alcohol is completely permissive to viral growth, you cannot drink ANYTHING during treatment and if you are over stage 0 or 1...you should not drink at all even after.

So if you have a big event and have a margarita it would be alright but NOT on a regular basis and NOT if you had advanced liver disease.

Now I Know I wont spell this right but he said aside from the Berg study the Spanish study by Sanchez Tapias called the Teravik (sp???) study also states that with the new set of thinking (the 4 week PCR being the MOST important) that you should go for extended tx if you are not clear by week 4 and if you have liver damage. He said it hasn't been published yet but we could find data if we looked.

He said only 1 out of 400 people who come in to his office even heard of the Berg study. He told my reg. doctor that I was QUITE INSIGHTFUL and really cared about my treatment and was doing all the right things.

He dropped me to 800 Riba because he wants me off the Epo. He said being on Epo for a long period of time at 2x a week is bad because you can get an autoimmune disease from it so that it becomes completely ineffective.

Two people who came into his office yesterday were Geno 2s who had just relapsed. He seemed VERY concerned about the lack of anyone doing anything for people except geno 1s and he lead me to believe that the 80/20% SVR rate was not correct whatsoever and that somebody better do something about it.

He DID spend over 2 hours (between his PA and him) with me and was more than willing to talk about anything that I wanted.

I can't remember more right now but hope this was helpful to someone out here. I tried not to make it about myself but to give you guys the chance to learn from him too.

I would TOTALLY advise anyone to go to him. You walk away KNOWING you were cared about and that a REAL EXPERT is in your corner.

He said he could manage my care from afar so I could continue going to the doctor nearby my house and that they would work TOGETHER to make things work out for me. What a GREAT guy.

Here's hoping my TMA comes back negative so this wasn't for nothing! At least if it does I don't need a 48 week PCR LOL!

[NYgirl]

PS

The cure for the mouth bumps (sores) isn't using any expensive mouth wash...take Malox and children's liquid benedryl in equal parts and mix them together and use a q-tip to put on your bumps.....that will do it!

The expensive things you can by...that is what their active ingredients are!

[FlGuy]

Thanks for the report from the front lines.  A few questions/comments:
- I think you had to pay this out of pocket, did he charge for the TMA?
- Did he examine you or was this a chat?
- I'm not surprised about the smoking, that's something I have to deal with before tx too.  Even if it raises the chances by a slim margin - it's something that needs to be done.
- Did you bring bx slides? Did he look at them and did his evaluation of the slides match the original bx report?
- The big question.   What did you wear and did the outfit include the thigh-high, spiked-heel boots? (What am I thinking, it's not your former boss - just a rock star.
- Glad you got there to talk with him, sounds like you are.

[jmjm530]

Great post!!! Very interesting about the epo and 4 week PCR. However, I was non-detectible at week six, not four -- and the majority Jacobsen level hepatologists I consulted with did not recommend extended treatment, so maybe there's a little flex there if you do your PCR's more often. But in general, his comments regarding SVR echo my NP's which is that if you demonstrate very good early viral response, you chances of SVR are very good -- and not so good if you don't.

I'll only comment briefly on the alcohol thing because you brought it up in detail and won't post any more about it in this thread or at least I'll make best efforts. I know for a fact that Dr. J. *does* kmow (at least I assume he knows them) at least three hepatologists who allow moderate alcohol consumption after SVR and not just for stage 0's or even stage 1's or 2's. . One is Dr. D., a collegue of his in NYC who has posted such on a web site he was formerly affiliated with. The other is an esteemed doctor in Florida who also has said something similar at least from a couple of posts over at Janis and a post here by his patients.  And the third is a highly esteemed doctor in New England who I was told is also "open" on the drinking thing for SVR's to the tune of a couple of beers a week.  In all fairness to Dr. J, he may not be familiar with their positions -- because none have published a paper on this -- but in all probablity he knows these doctors as they are his collegues and equals.

Thanks again for the post, and we're all keeping our fingers crossed for you as you wait the TMA results. So will that make 72 weeks total for you if he gives you the green light? Did he gives you any odds for SVR based on a neg TMA and extended?

All the best.

-- Jim

[NYgirl]

will he charge you anything from the long distance consults with your dr?


No...he will just concur with my doctor (who he said has done everything exactly right and has taken excellend care of me). I was VERY happy to hear that.  He knew who my doctor was and had heard of him before and called him and offered his help in any way with my case.

So I am guessing they will just talk if my doc wants his opinion. If he took insurance I'd go to him if I could. He's just so awesome.

[Kalio1]

Thank you so much for sharing this Dr J info. How incredibly thoughful and sweet of you to take YOUR very expensive time with him and ask him about geno 2's and 3's I am very grateful for the info and awed at your generosity being a geno 1 yourself! If you are ever in Santa Barbara, dinner and virgin margaritas are on me! I am so glad you will now have Dr. J. onboard working with your doc, that must be a great feeling. We are trudging our way through the last 6 months or so now, maybe we will both manage to cut out cigs too! I know my doc advised to not try to quit on tx, but I am doing it anyway in the hopes it will help me clear. I have been UND since week 4 but I want every advantage I can get and ow is as good a time as any! I can see how they say smoking might be worse for geno 3 as geno 3 seem to tend towards fibrosis activity quicker than geno 1's from what I am told, so that makes sense. Doesn't mean its ok to smoke if you are geno 1 though!
I figured as much about 2 and 3's relapsing rates being higher than we are told, we have had our share of them here ad it seems studies of us are very limited, probably because there are fewer of us than geno 1 in the USA. I am not suprised at his comments about alcohol, I was told the exact same thing by my doc, the other Hep doc I consulted with and my Primary that NO ALCOHOL at all for anyone with liver damage over stage 0-1 no ifs ands or buts  even if you have never had HCV but especially if you have had HCV. The idea of alcohol is not appealing at all. The thrill is gone LOL
I am down to a couple cigs a day, some days NO CIGS and will continue to work towards none at all because as any smoker knows it isn't good, Hep C or not and smoking AND drinking are clearly risky behaviors in any case but especially with liver issues. I think anyone who finds excuses to continue to drink or smoke has an addiction issue that is driving their justification of that risky behavior, I certainly fully admit I have an addiction issue with smoking. Hopefully very soon I can say I HAD an issue and put it in the past. I figure a month not smoking at all puts me in the nonsmoker category.  I lost some weight because according to some charts I was 20lbs. over ideal, some charts I was ideal so who knows, at least I am 20 lbs. lighter. Hope your weight has stabilized lately, I know you had the opposite issue, trying to keep weight on! ( you lucky lady you)
I am so glad he is in the "extend" camp too, that makes me feel even more like you and I made the right choice to extend.
How wonderful he and his PA turned out to be such great guys, famous doctor or not! You know what they say, if you are a jerk before you are famous you will just be a famous jerk, but if you are a good guy before you will be a famous good guy!
Hope the job is't driving you too crazy lately!
Thanks again for sharing your visit info!

[prettydamscared]

That was a great update.  I can't believe how much you were able to remember and report back.  So, Dr. J thinks 2010 for v-950 for non treatment naive?  Really interesting.  And, it's so good to have a feel for the changing views about svr at 4 as opposed to 12 wks.  

Started treatment yesterday in the vertex trials.  Study nurse gave me 1st shot about 10:00 a.m. By like 5:00 I was in tears, all curled up in a ball in bed with curtains drawn.  What a baby I am.  I was going to be all positive about it, going to run errands and get some work done after I returned from study center.  That so did not happen.  I felt like I had a really bad flu with aches and chills and the whole thing.  Feel better today but definitely not back to normal.  So glad to have this board because it's just like you all say it is....a strange, lonely and very weird journey.

[anise]

Thanks for the info.  I am wondering if the pool of Hep C people is growing, including genotype 2, and that is why there are more relapsers.  Still the statistical analysis.

[NYgirl]

He did a thorough examination after his PA also did. Then we went in and talked for well over an hour in his office for the consultation.

I paid out of pocket and will send to insurance and do out of network.  The bloodwork they bill directly to the insurance company. It was $600 for the visit but I feel as it was worth every single penny. Since I should get back like 80% I don't mind at all and wish I could go back every month (that is how often they want a pcr done...just because they LIKE to watch it regularly). Wow. My kind of doctor - just as obsessed as me!

I didn't bring the bx slides and in fact the med group hadn't even sent him ANY Of my records! He said it happens all of the time!!! Fortunately I knew all of the answers (and you would too...it's easy for us, what was your 12 week PCR, your alt/ast that sort).

I didn't want to scare him so I dressed up like a mini-rockstar babe instead of Pam Anderson.  He really seemed to like it a LOT (of course I was in the beautiful hospital gown for most of the time and that, as you know is MUCH sexier anyway!)

I just loved him. Everyone who said I would was right. Just seeing books that were labeled VERTEX 950 trials and stuff like THAT made me feel like WOW someone REALLY caresa dn wants us to get better!

[jmjm530]

Regarding the biopsy slides -- same thing happened to me with one of my consults, i.e. I couldn't get hold of them in time for my visit. I asked the doctor if I could get them to him later and he said "sure" and he'd have his pathologist look at them. My suggestion is you follow-up with a call to his PA and ask if their pathologist will read your slides and if there would be an additional cost. You might be surprised to find out that there not be an additional cost, as there wasn't with mine. BTW the slides come in a set of around 4, so don't let them hand you just one slide as happened to me the first time. You want ALL of them, including the special stained slides.

-- Jim

[sfbaygirl]

Wow! That sounds great! It makes me want to go and see him in NY. Every month PCR's, what a concept. Will ins. pay though?

I bet you looked cute in your rockstar babe clothes...too bad you had to take them off!


Very interesting stuff. Keep posting info as you remember things. I can't believe he spent 2 hours with you.

[cuteus]

oh chucks! I was going to invite you for lunch or ice cream while in the city! next time!

great report of your visit with Dr Jacobson, it sounds like a rewarding consult.  I am glad to see he believes like me, that the two log drop is a thing of the past, it is either respond early with a negative PCR or be a slow responder. That is what I decided to call myself, when no one did and proceeded accordingly.  
I am so impressed by your attitude in spite of having lost your thyroid and suffering severe anemia.  You have extreme fortitude of body and mind and should succeed in this battle.

I agree with the drinking and always said the same, mild damage and SVR, should not tax the liver that much more than it does people without HCV. Of course, substance abuse background seals the abstinence.

will he charge you anything from the long distance consults with your dr?

[FlGuy]

On the riba subject. You must feel pretty good to get down to 800 and maybe get hgb relief without the procrit. Did he indicate that there was any risk to a vl rebound at the lower level, or was his overriding concern getting you off the procrit? And, did he just pick 800 out of the air or is it a weight-based calculation?  Did he give you any % chances if you go to the end of the intended externsion?  Did he discuss the concept of und, plus 36?
Sorry for all the Q's Deb, but I'm doing the same thing on Friday and want to be in tune.

[jmjm530]

My doctor does weekly PCR's until non-detectible and then monthly PCRs thereafter. It makes a lot of sense on lots of levels including identifying both RVR/EVRs and relapsers with more accuracy. I should add that I skipped some of the monthly PCRs because waiting for results was just too nerve racking but I probably averaged them every 3 months after being non-detectible at week six. BTW there were no insurance problems at all with this as long as the doctor issued a script.

-- Jim

[sfbaygirl]

Interesting. When i was going to take my 12 week PCR and had to take it at 101/2 weeks, but still wanted a 12 week, my doc said the ins. wouldn't cover it. I asked him for a 4 week PCR and he said the same thing.

I guess I need those rock star doctors!

[jmjm530]

Call the insurance company directly and/or the blood lab that does the test and ask them if you can have test such n' such once a month if your doctor writes you a script. You may be surprised to find out that your doctor is wrong. I'd start with the blood lab as they are pretty good with the insurance companies but you might try calling both.

[sfbaygirl]

Actually, I called the lab and they were happy to give me as many PCR's as I wanted with a script and the dr. gave me one. They said I would have to pay @ $400? for a PCR if the ins. co didn't pay. I didn't call the ins. co. I think that is what I needed to do. Next PCR is 24 weeks. Do you see any reason to have one before that?

[jmjm530]

Forgot what week you're on, but some doctor like mine (and apparently Dr. J) do monthly PCRs. The reason I suppose is to identify any potential relapses earlier. Makes sense. You then might want to call the insurance company and ask if monthlies are OK with your doctors rx. BTW I was told the same thing about PCRs from my first doctor but it wasn't true. And it has nothing to do with the reputation of the doctor. Either they will allow the tests with a script or they won't. It is possible, however, that the doctror may have to fill out xtra paperwork although I don't think that was required with me.

-- Jim

[NYgirl]

That is EXACTLY what Dr. Jacoboson told me regarding drinking.  
I wrote it all down so that I did NOT deviate. So he said he does not known one single doctor who.....

I thought we had agreed to listen to what HE had to say? Now his information is questionable?

He said ANYONE who is a stage 3 who thinks they can drink AT ALL is using stupid thinking and can justify ANYTHING in their own mind but that does not mean they are right. He said "there are a lot of know it alls on the internet and it's best if in question to ask a professional"


That in itself is what he told me personally as a stage 3.  
Seems pretty clear.

Dont want to get into the debate again but I was asked to ask Dr. Jacobson as the top NY guy and I did and reported back.  

Whether anyone listens to his advice or not...is not up to me.

[NYgirl]

Said:   it is either respond early with a negative PCR or be a slow responder.

The only thing that scared me is that if they use this new MUST be UND by week 4 as their predictor...a lot of people might give up and not opt to extend to 72 (btw according to Dr. J. it's 48 or 72 there really is NOTHING to support doing an extra 4 weeks or something would help at ALL and since there is no data to support it is of ANY use at all he can't see why anyone would ever advise it.  That the studies show the extra 6 months can help but there is no guarantee even at that. He would NOT subject me to for example 60 weeks because there is NOTHING to show that that might be useful...and these meds are VERY strong, so it would be looked at as a risk not worth taking since there is nothing to back it up).  He said no good physician would just arbitrary add a few weeks, it is senseless.

so you were right about THAT fact too.

And like you...I'm following along merrily...calling myself Cuteus, Jr. now.

[MissMiss]

Can you elaborate at all on getting off the epo and the sx's it can cause, ie autoimmune disorders?  How quickly did he think your hgb would go up lowering the Riba?  Thanks

Miss

[Kalio1]

Forgot to mention that I was glad you relayed that info about Epo from Dr J. My doc has consistently been against it saying it has its "own complications" and we should avoid it if at all possible so it is comforting to hear Dr. J be in the same camp. I have hovered at 10/11 hgb this entire time so QOL wise I have wanted it but had to agree with the doc it is better to struggle thru copig with the symptoms if it means avoiding the possibility of further complications and problems. Who knows, maybe that has more to do with your thyroid going than the tx drugs do? I guess it is impossible for us to tell in many cases WHAT precisely causes the problems we have during and after tx.

[donAlfonso]

Thanks for your post.  Not sure if you ever saw, many threads ago, that I briefly responded to you regarding Dr. J.  My experience with him, in a consult, was similar to yours, and I would probably switch to him except for the cost and the fact that I have, over the years, become so hooked into the NYU MC system, including transplant unit.

Did he discuss Infergen/Riba for non-responders, relapsers?  I know he was involved in a study, but when I saw him a few months ago he was reporting no successes so far.  We didn't discuss 950 much because I couldn't qualify for the study.  I didn't think to ask him when he thought it would be available and in what form tx would  be.  His answers to you are disappointing to read, but I'm glad you asked, as his opinion will affect my future decisions regarding transplant.

Thanks again, and wishing you a successful tx,

dA

[Myown]

Glad to hear you had the opportunity to talk to a doctor in his league. You really had your ears open and came back with alot of information for everyone. I myself, a geno 2, who originally felt a little lucky being told that 2 is the most treatable, now realizes the road might have a few bumps, but its better to know these things ahead. I still will try to keep a positive attitude and hope for the best. I will speak to my doc next time and find out how many relapsers of geno2 in their practice. She continues to test for 2 years after svr. From what I've read , doctors have different cut-off dates, so to speak, of when they feel comfortable that you are past the relapser point.

Thanks again for sharing with us all.

[NYgirl]

First off PDS I am so sorry you had it so rough.  As you know it'S different for everybody and the IFN is HARD, nobody ever said it wasn't that is the truth. BUT it should get easier and easier as your body acclimates to the poisons so hang in THERE!  Please! I just know it's hard at first but you have to, because I won't let you not!

Kal - you and I have such a strange road together now dont we? but honestly I really believe we are doing the RIGHT things and so we WILL be rewarded for it with SVR! At least if we aren't...we know a LOT now and will live much more liver friendly lives and THAT will help.

I so much DONT WANT to quit smoking but now I know I really have to (not that I didn't REALLY know all along LOL) it's just the HARDEST thing in the world (and this coming from the biggest addict under the sun ;)  It IS the most addictive of all substances it really is.

MISSY -
I am on Epo 2 x 40,000 a week and he doesn't like that.  Since I was on too MUCH Ribavirin for 46 weeks (I requested 1,000 instead of the 800 I should have taken (by the way he thought that was FANTASTIC) he put me back down to only 800 since I had NO MED REDUCTION - HE IS A FIRM BELIEVER IN ABSOLUTELY NO MED REDUCTION IF POSSIBLE FOR BEST CHANCE AT SVR and I am doing 72 weeks I dont NEED that much now (with the first 12 weeks of fulldose meds being most important).

He said the epo in the epo that your body produces itself.....can be killed off by taking it for too long in the shot - taking the 'fake' epogen can cause an autoimmune problem.  Like when my thyroid was killed by an autoimmune problem from the Interferon (which is VERY common).

I guess - with these poisons...if you take them too long or too much or something they CAN turn on you.

But I don't think someone treating or doing regular Epo would have to worry./  Because of my mega doses of Riba I've just gone down the tubes over and over with my hemo causing anemia.  Because I have always been VERy thin...taking too MUCH of the Riba gave me a problem.

You see?

PS KAL it was NO problem to ask about Geno 2 and 3s.  You guys are my friends. You know there is NO way I could go in and not try and find out something about WHY people like you are having to retreat. To me...it made no SENSE we had so many relapsers at that one time period that it could NOT possibly be an 80/20 thing...no WAY.  If I could have thought of more things to ask for you I would have.

[friole]

Whoa, Deb, your information is awesome -- already copied into my c.doc file!  No brain fog for you, lady -- you were focused, prepared and asked all the right questions.  Cool what he said about the Berg study -- so we are the 1/400 club, eh?

It must be hard anti-ing up to 72 weeks, but I am glad he reduced your Riba --- I know you fought for the 1000, but, given your weight, it sounds right.  I will be very anxious to see how the hgb rebounds -- and assume you will still be doing epo in the interim until it does.

Your visit was worth it, whatever the cost.  I am very interested in what he said about UND at 4 weeks being the primary predictor  and not paying attention to the 2-log drop at 12 weeks.  NY - what is the sensitivity of the tests he runs? Never mind -- it is 5 copies -- reread the thread.

Thanks again, deb
kathy

[lilmoma]

I am impressed!!!
Wow, how did you remember all that conversation!?
I am lucky to take my pills on correct days, even with my pill box, still sometimes I get confused what day it is!!! Ha Ha
Very interesting stuff though.
I need to quit smoking too!! Worst addiction in the world I think. I have a terrible case of bronchitis right now, it started out as the typical upper respiratoy that seems to come with riba, but I am sure the smoking (though I have really slowed down) has made things worse.
I am glad you are in such good spirits, your wonderfully optimistic attitude helps me (and others) more than you will ever know!!!

lilmoma

[can-do-man]

So now 12 weeks mean nothing, you must be clear at week 4? sense i wasn't clear at 4 or 12 and have Cirrhosis plus being diabetic i would say my odds just went to zero. So why keep pumping this into your system?

[Mister beagle bailey]

I'm very impressed and as a Geno 2b, if I relapse Dr J is where I will go.  

I have to say, when you said: " I'll keep my personal stuff quick". ;) LOL  I knew it was going to be a good book.

Thanks so much for the info and glad to hear that Dr J said no drinking.  That is what all my docs had said too.

Will he take over your treatment now?  When do you see him again?

Beagle :)

[Mister beagle bailey]

Hey can do, please don't think that way.  You know there have been many here like you who did clear and became SVR.  I'm a 2B as you know and this is not good news for me too.  Just hope for the best as I'm doing and with a little help from our friends we will clear this bug for good.

Beagle  :)

[jmjm530]

A lot of folks have reached SVR who were detectible beyond week 4, including myself.

I think the message Dr. J, and others here, have been stating per Bert, etc, is that if you don't get to non-detectible early, your odds of SVR are significantly diminished unless you extend your treatment beyond 48 weeks.

If your doctor hasn't suggested extended treatment, maybe a second consult is in order. But don't give up the hope.

Hope this finds you well fella! Missed your funny posts lately.

-- Jim

[can-do-man]

I think if your gonna use a doctors name then you should have the doc's ok and be able to back it up. To many number 1's out there. And since there can be only one no.1 everybody else must be second

[jmjm530]

I don't use doctor's names for that reason but don't fault others for doing so. Yes, there are lot's of "number 1's" out there. In my book at least six. Dr. J is certainly on that list. One thing I have found out though, is that all Number 1's don't necessarily agree with each other on every topic. I guess part of being number "1" is cutting your own path through the forest. But as we know, the hep c forest is a dense one and even the best have limited vision.

Around 1970, I saw the *acknowledged* number 1 of the day -- Dame Sheila Sherlock --  and I guess I can use her name since she has passed away. "Google" her if you're interested in Hep C history. She was pretty adamant that what I had would "burn out" in 5-7 years. And to be fair, using the best knowlege of that day she was giving me the best advice available.

Of course, it didn't "burn out" but we know a lot more today than in 1970. And I'm sure the number "1"'s ten years from now will know a lot more than the number 1's today. All of them. To state the obvious, Hep C is an ever evolving field of knowledge.

-- Jim

[jmjm530]

Shucks, here's a link to Dame Sheila Sherlock. A remarkable lady that all of us afflicted with liver disease owe a debt of gratitude to.

http://bmj.bmjjournals.com/cgi/content/full/324/7330/174

[way]

wow

[amommy]

Thanks Deb for sharing your experience.

Can Do Man, I have missed seeing you around here!  How are you doing?  I hope you are feeling ok!  You know what they say about opinions :)  You just keep up the good fight, you will win!  

As a geno 2 waiting on my 12 week post pcr results this wasn't exactly comforting news for me either.  I just think we need to keep in mind that Dr. J is reporting based on his own experience and findings.  I tend to believe more of the difficult to treat cases find their way to Dr. J and not necessarily your run of the mill "easy" cases.  At least I'm hoping so, and that is how I will keep myself sane over the next week while I wait.  HAHA.

[merlino]

I am getting ready to start tx in oct.  I am a little scared after reading your post. please correct me if I am wrong. if you do not achieve UND by week 4 you don't really don't have much of a chance of clearing and no point of extended treatment.I hope I am wrong!!!

[Mister beagle bailey]

Glad to see you post and I'm coming up on my 12 week post PCR too. How are you feeling?

Beagle

[sfbaygirl]

Obviously if Dr. J is putting Nygirl on 72 weeks when she was not UND at 12 weeks it does not mean tx will not work for you. He must feel there is a chance for her to achieve SVR if he is extending her tx, right? We all know there is a risk we won't SVR, but we do it anyway and hope to get there. Many of us don't get it the first time and then get it later.

I was really worried before my 12 week PCR. Now I am worried about 24 week PCR. I suppose it is the nature of the beast, since we don't have an even 80% of success. As many have said, even without SVR your liver is healing, so it is worth it. I haven't heard many say it wasn't.

[donAlfonso]

I saw Dame Edna once.

dA

[merlino]

Thank you for responding. My Dr. told me if I didn't achieve UND by 12 weeks he would extend. I  am not as knowledgable as others here and get scared pretty quick. There is just so much you need to know b4 tx and only so much I can take in at a time.Brian fog is going to have a party with me!!

[jmjm530]

LOL. I saw Notre Dame play once as well.

[sfbaygirl]

Yes, Brian Fog is a really fun guy! You may not even remember who we all are by then :)  

I was REALLY scared before tx, much more so than now. I tried to learn here first, but many things didn't make a whole lot of sense to me until I started and experienced what others were talking about. Of course many of the sx can be similar to what we had before starting tx.

Is there a reason you are waiting until Oct?

[FlGuy]

As you've already read here, tx is not without it's risks.  Looking at the other side of the coin, it also has it's rewards. As a geno 1 with your intent to beat this stuff you will be going in with your eyes open know that you are as likely to be successful as not.  It's a tough go but you have more reasons than most to make sure you do the best you can to come out on top.  After all that, I'm still worried about your closet txing.  Hang in there Merlino, once you get past some of the fear and apprehension things get a little better beacause they are clearer.

[sfbaygirl]

Whose closet is txing? I know mine sure is!

[mremeet]

Thanks for the great post nygirl. But I don’t see how your doctor could possibly state that VX950 without question will not be available to non-responders until 2010 (i.e. 4 years from now). How can he know that? There are trials currently underway for hundreds of naive patients and a 400 patient trial for non-responders is scheduled to start by the end of the year. And he knows for an absolute fact that these studies won't bear fruit for non-responders in no less time than four years? It may turn out that he could be right, but he could easily be wrong too. Fact is, he doesn’t know, and to pass off a statement like that as an irrefutable fact is misleading at best. Secondly, by saying that the treatment "WILL" come with riba is another assumption he cannot know at this point with any certainty. The VX950 PROVE II trial which will be starting soon in Europe includes a test group that is only being dosed with VX950 and peg IFN (sans riba). The reason this group is in there is to see if the ribavirin can be eliminated or maybe reduced. Right now no one knows if this strategy will work or not, so for him to definitively and preemptively declare that he knows for a fact that it “will” be dosed with riba for any and all patients is going too far. Point being again, he doesn’t know. No one does yet. Not vertex, not the FDA, not doctors supervising the trials. It's all speculation and anything can happen in the next two years, much less four years; including the possibility that VX will turn out to be a false hope. Although that seems unlikely at this point.

Anyway, not trying to quibble with you personally, just wanted to point out that doctors sometimes overextend themselves by expressing certain notions with absolute confidence; when in fact they're not in a position to do so.

[merlino]

I am taking my kids on vacation plus I want to wait till school starts and they are settled.

FLGuy, how are you? Appt is this Friday right? I will keep you in my prayers that all goes well. Its getting closer and I am getting nervous! I really think its best for me to keep it quiet especially with what my kids are dealing with right now. Emotionally they cannot deal with this. We are leaving for vac Sat. morning!!!!!! Good luck to you! Talk when I return.

[FlGuy]

Vacation sounds great.  Hope you get R&R and nice weather. Our kids are back to school next week and both are a little behind in summer reading.  I don't tell them, but the books they are assigned are pretty boring. Oh, one benefit of tx is reading.  If you are a reader you only need one book on tx.  It's easy to forget what you've read so if you read the same parts over and over it's still new every time.

[Mister beagle bailey]

Merlino- Good luck with you starting tx and don't worry there are many here that were 1's and cleared. I know it's scary but's it's doable and you'll have much support here on the forum.  Without the people here, I never would have made it through tx.

FlGuy- Wow, your appointment is Fri. already.  Can't wait to hear what the Doc has to say.  How are you doing?

Beagle

[FlGuy]

I'm doing great. Have put myself on ginger snap therapy.  When you do the pcr in the next couple of weeks do you do it here, or need to back to NY?  Anymore doc follow-up in NY?  Since you don't have a wedding to go to, you and Mrs. Beagle should get away for a vacation.

[NYgirl]

My friend,

There are NO guarantees with any information that is given at ALL. Their new thought process is just that UND at 4 weeks and no later pretty much makes the odds go way up - NOT THAT NOBODY WHO IS UND AT WEEK 12 IS NOT GOING TO HAVE SVR OR SOMETHING!

They are just throwing out the whole biblical 2 log drop thing it would appear.

But it DOESNT MEAN that those of us are NOT going to have SVR! Remember...until NOW they were saying that Geno 3s were LUCKY LUCKY LUCKY right? Now they're saying wow not SO lucky after all!

I was NOT UND at 4 or 12 either.  HE thinks I have a rough course because of the TWO geno's I have but that I will have gone from a 48% relapse rate to 32% when I do the additional weeks.

Of course NO Guarantees for anybody.  We stick in there because even if the odds are 99 to 1 - we ARE the ONE.

Please don't try to tell me that there is anyone anymore stubborn on here than YOU and YOU can't beat this thing?

You ARE the ONE and you know it! (Ask Mr. B I am right about these things)

Please don't take this negatively - think - what do they REALLY know about anyones ODDS? This medicine...it's all BEST GUESS and nothing more than that.

[slowsouthernstyle]

I have been seeing many many doctors through out North America and 3 in Europe for my hep for years i have treated 3 times and did not clear.none of them would say some of the things that were reported in here today.3 of the doctors I am seeing all agree that extending treatment is not something they are willing do because the odds of the side effacts versus the very low remission rates of extended tratments is to risky.I know the doctor that is being quoted and he must of changed his treatment methods allott to have said those things.and I am sure he would never offer medical opinions without viewing biopsy slides or reading a complete profile of the patient.I will say that most doctors that are worth there salt would say that drinking of any should not be allowed and people in here that keep arguing that fact probably have a drinking addiction.Please do not believe everything you hear and see on the internet find a doctor you trust and ask him the questions you have.I notice people in this forum say things like what i would advise you to do and always remember no one on this forum is a doctor some people like to think they are smarter than others.be carefull.I know alott about the new drugs and the trials that are coming out and I know for a fact that the Vertexx trial that will be starting in november or arounbd there is phaze 3 and there will be no ribavaran in it.this company will have the market on treatment if this phaze works out and I wish all people that have under a fibrosis level of 3 should wait to treat it won't be more than 2 more years until the drug is in the pharmacys
slow