Really need Info

Let me recap real quick, my study dose not alowe rescuse meds untill we stop vx at the end of week 12, Sunday is the end for me. Monday I go to study nurse for blood and more meds, I know I am not in group D which stops all meds at week 12, so I either have 12 more weeks of meds or 24 more weeks. My riba started at 1200mg cut in half at week 3 for low hbg, so I think I should start procrit so I can go back up on my riba for my remaining time. Who knows I may be on placebo!! and vx has no track record let! I need to do what is best for me and my health. Now my problem my DR will not give me procrit, told me I do not need it my hbg is 9.5, but I feel o.k. I showed Jim a paper (study) my DR wrote that said after you become und lowering riba will not hurt chances for svr, I hope you remember that paper Jim. Shoud I demaned procrit?? or should I just keep going like I am?? I KNOW vertex and all of our study nurse's read this site , My nurse, PDS nurse and MRE, Dr all got a letter about this site and the vx lab rats that post, I have been a good patinet, But should I put my foot down now?? I tried to get a pcr at week 4, was told no, so I had one done at week 11, I know that will not tell me placebo or soc BUT I did not want to go to week 20 and not know,sorry jen,  I will find out my pcr today. What would you do. Thanks Pam

[Mister beagle bailey]

Sorry hear that they won't allow procrit but I think you really have no choice as you probably signed a paper agreeing to the trial on their terms.  I know how you feel as I needed procrit durning tx too but I was not in a trial so I was able to get it.  This trial your in probably which is funded by the drug companies probably said no procrit on this trial and if the DRs give it they would probably lose funding on future trials.  It's like a catch 22, but I know how you are feeling and maybe someone else know's of a way around this for you.  Let us know how you make out.

Beagle

[NYgirl]

Part of being in a study is following very stringent guidelines so that everyones treatment is the same so they can get the result data.  I don't think it will do anything for you to "insist" as you are not on a regular treatment with a regular doctor.

As for this statement:  showed Jim a paper (study) my DR wrote that said after you become und lowering riba will not hurt chances for svr


It is patently UNTRUE.  The biggest doctors in the world (study docs)have determined that lowering the riba DOES indeed lower the chance of SVR.  Of course you surely CAN but it greatly DOES hurt your chance.

If your doctor is one of the like Big 3 then I would be interested to read it and see why they are contradicting what they have already posted data on.

PS MOst of us don't get Procrit until we are under 10 - that is a common thing anyway so if you are higher than that you wouldn't probably get it anyway.  

I hope you feel better PLN.

[prettydamscared]

Hi there,

She finishes the study officially on Sunday the 22nd.  She's not trying to get Procrit early.  The study absolutely allows rescue drugs after 12 weeks.  The problem is her study doctor DOESN'T BELIEVE IN PROCRIT AT ALL.  So, even after the study, he will not prescribe it for her, even thogh it's being paid for by her OWN insurance company and she is continuing on SOC for at least another 12 to 36 weeks.

Has anybody else experienced this?  I'm encouraging her to see another doc if her doctor absolutely refuses to prescribe even though her hemoglobin is at 9.5.  This makes no sense to me.  What do you all think?

[FlGuy]

You

[NYgirl]

OH h3LL yeah I would go to another doctor - right away.  Get a hemo or a hept or GI or anybody.  What kind of doctor would make somebody suffer when their hemo is that low - it's NOT tolerable...and maybe because he's never had it happen to him he doesn't understand that.

To him...it's JUST a number.

RUN PLN RUN as soon as you can get another doctor and don't give up until you DO get the meds!!!!!!!!!!!!!!!!!!

We completely misunderstood what you meant! I am so glad PDS posted!

[jmjm530]

Hi Pam,

Sorry you have to go through all this in addition to the normal rigors of treatment. And gosh, you're in a picklish situation so excuse any ramblings on this as nothing is clear cut.

I vaguely remember you mentioning or posting about something similar, but I thought the gist was that full-dose riba was less important after week 12 -- possibly after being non-dectectible -- not I don't remember saying that lowering riba wouldn't hurt your chances of SVR.  Why don't you post the link to the paper again, or if you don't have it, insist that your doctor and nurse provide it to you since they are the ones using it to make treatment decisions. Also, what date were you non-detectible and when did they reduce the riba, as those two factors seem germane to the paper.

Paper aside, my understanding has always been that full-dose riba is important for SVR especially during the first 12 weeks of treatment. There's also something called the 80-80-80 rule, but since you're on half-dose riba that doesn't seem to apply.

The way I look at it is that you have lived up to your end of the bargain. You followed their "no rescue drug" protocol for 12 weeks. Instead of giving you Procrit, they lowered your riba by one half. Now they're telling you that the lowered dose isn't going to hurt because of some paper that perhaps you haven't seen and none here seem to be aware of. So...if it were me -- yes, I'd want to see the "paper" right away but would also probably start doctor shopping today as a backup. Like I said, you lived up to your end and now it appears they are letting you down. At the same time, you could as others suggest 'insist' on Procrit now since you're at the 12 week mark and see what happens.

So cover your bases, get the Procrit now and start adding riba in whatever dose the protocol is. Then, once you become unblinded, when you became non-detecible, know what drugs you're really on and the duration, etc. -- you and whatever doctor you have at that point can make some more intelligent decisions on how to proceed. Keep in mind that in Europe they are trialing VX without riba. Do you want in a sense to put yourself in that trial? That's a toughie question and premature to answer at this point since you don't even know you're on Vx-950.

Good luck and let's cross our fingers that it all works out.

-- Jim

[jmjm530]

Just another thought. Now that you're approaching week 12, is it possible to remain in the trial but switch trial doctors? If so, this might be the quickest and least expensive route but I'd definitely "quiz" the new doc regrarding his philosophy on Procrit administration prior to making the move.

-- Jim

[Kalio1]

pln

After the 22nd he won't administer Procrit? At 9.5? You do have to think of your own health, I'd push for it with him, show him some of the info/studies that show it is necessary below 10.0 and if he still refuses, and it was me, I'd get my doctor or some doctor to help me get some. I've read a zillion studies and people DO get Procrit on studies all the time. He sounds like he is just bull headed and has a need to be in control rather than to help you when you need it! You are courageous to still be hanging in there with Hgb at 9.5. Mine is usually around 10 or 11 and it just about does me in some days! I hope you get Procrit soon.



PDS

I hope the rash has subsided and you are feeling ok. You are very strong to have gone through all of that and still hang in there in the study. I hope it is smooth sailing from here on out.

[prettydamscared]

Pam just had to run and go do her "meals on wheels" that she does every Fri.  I completely agree with you about this though.  I frankly think it's a little unheard of for a doctor to unequivocally state that he doesn't believe in procrit and won't prescribe it.  

By the way, her doc, as you probably know, is Dr. Shiffman.  We actually just left a message for him on his recorder and by we, I mean I did.  It's kinda scary to do that on someone else's behalf but she's so easy going that her study doc and nurse seem to discount her questions and opinions.  She doesn't get listened to.  Anyway, I said I was Pam and that I very much wanted to be prescribed procrit at the completion of the study and that I understood my insurance was paying for it.  I asked him, with all due respect, would he absolutely not prescribe this kind of rescue drug and if that were the case, we need to have a conversation about it because unless there's some medical reason that I'm (she's) unaware of, I'm going to insist on being prescribed a rescue drug and raising ribavirin accordingly.  

Damn, I hope I did the right thing.  I guess we'll see what he says when he returns the call.  Probably just really ticked him off but I was respectful and professional, just very firm.  Almost can't believe I did it but it's what she wanted to say - she's just too nice and maybe a little in awe of Dr Shiffman.

[Kalio1]

Just wanted to add that my doctor also is very hesitant to use Procrit, he feels it "brings it's own problems" with it.
However, in spite of that, he WILL prescribe it if the patient's Hgb falls below 10 and the patient is feeling awful.

Sounds like she meets tht criteria with Hgb at 9.5 and having trouble walking up an down stairs.
It was very supportive and kind of you to call for her and advocate for her! How nice to have a friend like that when she is feeling so tired and weak. I think you did the right thing.


PLN
I coordinated a meals on wheels program for many years and people like you, the people that take the time to deliver the meals each day/week are some of the best, most generous loving people in the world. Thank you so much for doing that, I know how very important tat is to the recipients.
A study was done about this and it showed that the people lived longer and had a better QOL due to the person delivering the meals bringing that slice of joy into their lives each day. The impact of the volunteer bringing the meal was even more valuable than the meal itself. And to be doing that in spite of your low Hgb, you are a true hero.

[jmjm530]

You're a good friend with good intentions. I doubt the doctor listens to his own messages anyway. You certainly were clear to the point and hopefully that will prompt a direct response.

I personally know nothing about Shiffman other than he appears to have a good reputation. Based on the paper below, I doubt if he is against Procrit per say, so maybe there is something else going on. Has PLN talked directly to Shiffman or is everything coming through the study nurse?

Anyway, here's something on Shiffman and dose reduction.


"Data presented by Mitch Shiffman from the HALT-C study, which Afdhal referred to in this oral talk at DDW, showed dose reductions in ribavirin had a more negative effect than a dose reduction in Pegasys on end-of-treatment response and sustained viral response in the HALT-C study. Shiffman reported that sustained viral response was 23% (n=118, no dose reductions) and when there was a dose reduction only in Pegasys the SVR was still 23% (n=70). But when only ribavirin dose was reduced (n=36) the sustained viral response (SVR) was 11% (23% vs 11%, p<0.008). When there were dose reductions for both Pegasys and ribavirin the SVR was 8%."
http://www.natap.org/2003/DDW/day18.htm

And here's another:

"...he use of epoetin (EPO) [Procrit] has been proven to reduce anemia and the need for RBV dose reductions. Study results presented at the 56th AASLD by Shiffman and colleagues show that the use of EPO also increases sustained virological..."

http://www.hivandhepatitis.com/2005icr/aasld/docs/112305_a.html

[FlGuy]

I didn't realize that it was Shiffman and now really surprised at the procrit psoition.  I'm glad Jim cam up with those excerpts because that's what I thought Shiffman's (and most other to hep docs was) to use rescue drugs judiciously to avoid dose reductions.  Maybe it is interference being run by another doc or nurse.  It's much easier to say no than to explore possibilities and remedies.  It's nice that you intervend and hopefully the Doc will respond accordingly.

[prettydamscared]

Thanks for that.  Pam is going to be delighted that you found those references.  She actually has met directly with him about this and, according to her, he flat out told her that he doesn't believe it's necessary to raise the ribavirin once a person has become undedected.  According to protocol of the study, that makes no sense because he shouldn't know if she is undedected.  Only the third party administrator, Dr. Andrew Muir, at Duke University should be privy to that information.

Dr. Shiffman, as well as her study nurse have been telling Pam all along that she would be unblinded at 12 weeks, which is incorrect information.  The study only unblinds one group at 12 weeks, the 12 week group.  The rest of us have to wait until 20 weeks.   They were so insistant about that point that I speculated that perhaps Dr. Shiffman knew which group she was in.  I thought perhaps he had requested an early unblinding before he dropped her riba at week 3.  I thought the reason he was dead set against procrit is that he knew perhaps she was in the 12 week group and was coming off of all study drugs at week 12, therefore he didn't want to bother with all of the pre-authorization business that goes on to get Procrit through private insurance.  None of this makes much sense and as it turns out, none of the speculations are true.  They were just giving her misinformation as to the unblinding period and I have no idea why Dr. Shiffman won't prescribe Procrit.  Pam puts me on the phone quite often when she calls her study nurse and I frankly am a little appalled by the unprofessionalism and misinformation that is being dispensed.  And, I do know the correct info because I'm in the study, as well as others throughout the country.  The whole thing is very odd, imo.

[jmjm530]

Found the paper from the link PLN posted on 10/2.

http://www.ccjm.org/PDFFILES/hepadshiffman.pdf

Page 3, reads in part:

DOSE REDUCTION: Reducing the dose of ribavirn especially during the first 12 to 24 weeks of tx impairs the abiity of patients with HCV genotype 1 to achieve SVR...In contrast, patients in whom the dowe of either of these meds was reduced after week 12 had a smaller decline in SVR rates.....In contrast, reducing the dose of ribavirin after HCV RNA levels already have become undetectible appears to have little effect on SVR rates.
--------------------------------------
So there it is, the last sentence. Assuming he's still referring to the first 12 weeks of treatment, I'd have a couple of questions. First, how does he know that PLN was non-detectible when the riba was reduced since this is a blinded study? And second, what exacttly is "appears" based on. Unlike many of his other statements, I could find no footnotes for this. Personally, I'd like to see study data supporting the statement and then see how the study data profile pares up to the PLN's profile.

It's quite obvious at this point that Shiffman is no neophyte in terms of riba/epo/SVR, etc, but for me more answers/explanations would be needed. Also, consider a quick second consult with someone else at his level like a Dieterich, Afdhal or Jacbosen.

Wish I could be more helpful.

-- Jim

[friole]

Of course the doctors are right that Procrit carries its own risks.  All drugs do.  The most important thing (to me) if Procrit is prescribed is weekly CBCs (I posted mine below on the thread started by pds, I think, a few below this one).  

They don't want the hemoglobin to rise more than 2 points in a week.  It could endanger the heart.  Thickens the blood.  I would have to read the insert with the rx to really discuss this intelligently and I don't have it here.

Still, under the proper care, it is the best thing round to allow us on full dose medications to increase our chance at SVR.

[jmjm530]

Yes, it does get odder and odder. Like you say, how do we know she is non-detected or even in the VX-950 group? The other thing, Shiffman's point of view -- which we haven't seen the source -- wasn't based on being non-detectible with VX-950 -- so this could cloud the picture as well.

If it were me, I'd first try and find out how Shiffman knows that I was non-detectible as the study is supposedly blinded-- second, ask for the study that backs up his position (plus querry him on the VX950 angle above)-- and, third, get on a plane or train and bounce the whole thing off someone else in his league like the doctors previously mentioned. Alternatively, she could do what most folks do and that is simply listen to their doctors and cross their fingers. A lot easier, but not a path chosen by all here :)

-- Jim

[mremeet]

Wow what a headache. I mean as if all this hoo ha we've all had to go through isn't enough, you gotta put up with this nonsense. The criteria as spelled out to me prior to enrolling in the trial is simply that (1) rescue drugs are precluded for the first 12 weeks only and (2) they ARE available after that as needed - PERIOD! They are definitely NOT absolutely precluded in the trial protocol guidelines. And there's no way they have a "moving standard" from study group to study group either. The standard and rules are the same for all groups, obviously. I'm sure Dr Schiffman, as all of the study doctors, have their own powers of discretion concerning the individualized management of the care of their patients based on each paitent's specific criteria. And of course that's appropriate and even necessary. But I absolutely do NOT believe he can flatly dictate to you that you cannot have procrit which effectively enforces an ongoing half dosing of riba. The only way he could do that is if there was some outstanding condition that indicated the procrit would be a danger to your health or was in some way contraindicated. But that's not the case, right?? You don't have any special health concerns that preclude the use of procrit, right? He hasn't stated that right? If not, then I would simply sit down with Dr Schiffman, tell him you are going to get the procrit outside of the study and that you wish to increase your riba once the hemo elevates. You want him to work with you on your decision and ensure he's onboard with it and that he isn't going to attempt to have you dropped from the study for doing so. Legally and ethically he cannot drop you from the study for doing so. That would be in violation of the agreed upon contract, so I'm sure he'll understand and concede to your wishes if push comes to shove. Just because we are enrolled in this study we are not precluded from seeking medical care elsewhere, that's just a simple fact. And you receiving the procrit after the initial 12 weeks is NOT in violation of the study protocol. Therefore, he cannot terminate you from the study for doing so, end of story.

Pam, be assertive and firm. Communicate to him what you want to do, and get his assurance he will work with you on your decision. Get him to openly commit to you that he will not attempt to discontinue you for doing so. If he refuses and/or implies he will attempt to discontinue...well, that's when the next level has to be taken. No need to discuss that option unless it comes to that, which I seriously doubt it would. Good luck, hang in there it'll all work out.

[jmjm530]

I think adding "Shiffman" changes the equation somewhat. The problem doesn't seem to be the protocol's but Shiffman's own take on Epo intervention as discussed earlier. It sounds like PLN will either have have to get Shiffman to re-evaluate his opinion based on things previously discussed; accede to patients wishes regardless of his opinion; or switch doctors. What Shiffman appears to be saying is that full-dose riba isn't necessary after someone is non-detectible and for some reason he's assuming that PLN is/was non-detectible even though the study is blinded.

[l-horn]

" If your doctor is one of the like Big 3 then I would be interested to read it and see why they are contradicting what they have already posted data on. "

And just who is 'the big three' and who designated them that ?

[prettydamscared]

Thanks for all your input.  Pam's going to have a lot to digest when she returns from Meals on Wheels today.  lol

Kalio, I just wanted to thank you for all of your continued support and well wishes.  I don't really feel like I deserve it though.  Like someone said yesterday, the real heroes are the people that treat 54, 72 weeks and time and time again without giving up and continue to come to this and other boards and share their experience and knowledge.  In spite of differences of opinion, I admire so much the fact that many here continue to help each other even after they're finished with tx.  This thread is a perfect example.  I didn't know where to find those references and really appreciate that Jim and others did.

[MissMiss]

http://www.procrit.com/

Here you can get the full prescribing booklet.  Maybe this will help.

I gotta add that without Procrit I could not have finished tx.

Also, I am left with some heart problems I never had before.  They may have been there and tx just brought them out, from hgb being so low for so long, from tx itself or other drugs I had to take.  I just don't know yet.  Only that I have heart issues I have to deal with now.  I will post more after I have a better picture of what's happening.

Being in a trial may complicate things but living with hgb too low MAY complicate things later.  Your health is most important here, there are others in the trial who can make up the statistics.  Please let us all know how it works out.

miss

[prettydamscared]

Thanks for your input and the link.  I'm going to read through it very carefully and you're right, my health is important too.  I don't want to end up with ongoing problems from hg being too low for too long and it is different for everyone so I'm definitely taking that into consideration.

Char

[mremeet]

Re Shiffman's "knowledge" that pam was undetecable: Pam started with a low VL (~200,000) and her LFT's plummeted very rapidly after starting treatment. She went from like 118 to 23 within 2 weeks and even showed a significant drop within 4 days. It may be that he's simply inferring from that information that she's very likely to be on the VX and consequently went undetectable early on. Not that he's justified in concluding that with any certainty, but it might explain where he's coming up with that notion. Obviously only he knows for sure though. The question should be posed directly to him to see where he's coming up with that most definitive and consequential assertion.

[strator]

Hey you got the same list I got ..." do miss drankin' though. I do. So many things go well with it. Football, strippers, smokin', unprotected sex, drivin' fast...."
Course in my case I'd have to add handcuffs..they say it's the accesories that make the outfit.

On your doc that couldn't see past the 'drinkin'. I had the opposite before I got the one I got now. The old one had no clue, nice guy though...saw me on the detox list at the hospital after we parted ways, sat on my bed lookin at my chart and says words an alkie can only dream of...'hey Don, this isn't bad, your liver doesn't seem as bad as the last time you quit.'
'Thanks doc." he left. I smiled and got off the bed, made sure my johhny coat was coverin my tail and signed myself out AMA...hell I still had drinkin room on the liver..within hrs I was at the packie.
He by the way had never mentioned or checked hep c, I'd never heard of it. That was about 5 years ago. It was in the next detox or so that someone happened to test me.
Sounds like the cat shoulda just gone to a meeting too.
Be well,
Don

[Mister beagle bailey]

If she was allowed procrit after 12 in the trial, then i would go to a hemo (blood) dr and get the procrit from there.  There are many docs that don't believe in recue drugs, why I have no idea as it helped me and others here on the forum.

Beagle

[jmjm530]

After reflecting some, the fact that someone at Dr. Shiffman's level is involved has to be factored in. He's well respected and authored numerous articles on riba, SVR and epo intervention.

Maybe a good first step is simply to sit down with him and go over everything slowly. Ask him about why he thinks you're non-detectible. Ask about what study data he's basing his position on. Ask him about what harm he sees in giving your Procrit, i.e., the risks and the rewards. See what he has to say.

You might also ask him when he will have your 12-week VL load data. If it's not very soon, maybe you can be tested outside of the trial if allowed. I believe one member said it was allowed, not sure.

Part of the problem as I see it is what is done is done. Your riba was reduced early per study protocol and nothing can be done to change that. How much that will impact SVR is really unknown, especially because you don't know for sure when you were non-detecitble, you don't know if you're taking VX-950 or not, and you're not sure how relevant the data Shiffman is using to make his decisions on. Indeed, he may be correct and you will be just fine. Let's hope for that.

A second opinion can always be useful, but personally I'd think twice about leaving Shiffman unless I hooked up with someone at his level first. Assuming of course, that other than this issue, you've been satisfied how he and his staff have managed your treatment.

Hopefully, everything's going to work out just fine. Take whatever steps you feel necessary but try not to stress to much over it. For all we know, you are non-detectible, are taking VX-950 and don't need any riba.

Be well,

-- Jim

[cuteus]

I hope you find the resolution you are seeking and the one that is best for YOU.  although we don't know how vx factors into the equation, and maybe because of that, the proven dose of riba should be continued through tx. We have a member here who became undetect early, before wk 12, continued on full doses until wk 52, at that time switch to half peg and no riba till the end of wk 88.  he relapsed.  Being negative early does not necessarily mean that you will not relapse, especially if the doses are lowered, even late in tx.  I asked my hepatologist, Dr Bernstein, if I could just take the peg and not the riba after the 48 wks, up to the 72 wks planned and he said NO, full dose for the whole 72 wks or nothing.  That should tell you something.  We don't know how vx helped, you got to make sure, everything possible has been done to try and get that SVR.
good luck

[NYgirl]

It's not necessarily JUST the three but saying that I mean Jacobson, Afdahl and the few others who are "the" world reknown experts.  THE hep guys.

Because the paper contradicted exactly what the big guys have to say (and face it - they are "the" guys when it comes to the LATEST Most UPTODATE information) I wouldn't take it with much credibility, especially since Jacobson is involved in SO MANY of the "studies" done as lead investigator.

I'd take their word for it as I know that when they say things they are proof positive FACTUAL and have been investigated and documented thoroughly in MAJOR studies (ie: Berg, HALT-C for example) - compared to Dr. JimmyJo Flatbush of Johnson Creek if you know what I mean.

It's just that I've never heard ANY doctor who believed that dose reducing (especially in the first 12 weeks when it's been proved we need to hit it hard and fast (double espcially the first FOUR) was anything but to be avoided at all cost and last resort.

Hope that helps explain what I meant.

[NYgirl]

PS One of the first and most important Dr. Jacobson (who I went to for a second opinion but it NOT my primary hep doc (I can't afford him truthfully) questions was "did you dose reduce at all during treatment" to which I told him no in fact I took too MUCH of the meds it turned out.  He said GOOD that is crucial.

I did not dose reduce until week 46 when HE reduced my Riba by 200 (i was taking extra during the entire course up until then my a stupid choice and it REALLY caused me serious problems with my hemo - but once I had started it I was worried to reduce so i just suffered through).  So even when I did finally reduce, I was still OVER where I should have been taking the riba in weight based by a good deal.

[rochammer]

This is a study for 950 so I would guess that they are checking the blood levels of the 950 , riba & peg. The old rule of SOC may not apply no one knows that is what a study is for. Theses are top doc

[Kalio1]

If they told the participants that they could not have rescue meds for the first 12 weeks but after that they could use them if needed, I think it's pretty rotten that now, after the 12 weeks is up try to say something different to her.

9.5 Hgb can't be good for you, and Im sure her QOL is in the dirt.

The participants comply with the rules, the doctors should comply with their promises after the 12 week time frame.



I feel for her, it's so hard to try to fight something like this when you feel so tired and weak.

[rochammer]

Kalio

Yes absolutely!
The 950 people held up their end & so should the docs
If epo is needed then they should have it -QOL is very important
The 12 weeks are up new rules apply
Rock

[l-horn]

I would think it is common sense that reducing dose would reduce chances otherwise, why would they even HAVE the dose set there in the FIRST place ?


All the studies and info makes me head swim. Info overload.

I asked my doc about the Tapias study, which I think I read about in a post of yours, because I was not undetectable at 4 weeks. I had nearly a 4 log drop, but VL was still 77. He 'waived it off', so to speak, told me it was a good test result, and that I'd test again @ 12 weeks. ( I just did shot 8 on Wed ) Being that I don't really WANT to treat to 72 weeks, I didn't press it or walk out thinking about getting another doc. I'm just not at the point that I want to 'shop docs' since my sx have been tolerable, my blood work has held up, and my results have been good.

Plus, I don't think I'm really up on the info enough to be questioning or challenging my doc, who is a Clinical Professor of Medicine at the University of Texas . I had brought in some printouts but thought better of pulling them out. Just didn't feel like making an ass of myself.  I don't think he's real interested in talking about clinical studies with me, if you know what I mean. He's just not a real 'chatty' kinda guy. My guess is since this is my first treatment, and it's going well, everything is gonna be 'by the book'.

I'm always surprised when people here describe visits/convo's with their doctors. Sounds like they have long conversations about studies and side effects and this or that. My doc takes a look at me, says 'good' or 'bad' on test results, gives me another appointment and sends me on my way.  Of course, were I on my 2nd or 3rd ...etc attempt at treatment, I'm sure the conversations would be quite different. I really feel for people that are having difficulty treating. It must be really discouraging at times. I feel very fortunate at this time.

Enjoy reading your posts and jmjm's even though you guys appear to butt heads at times, you both seem pretty knowledgable on the subject. Perhaps we should devise a game of 'hepatitis jeopardy'. I'll take THE BERG STUDY for a thousand, Alex.'

Lot's of good info here from the 'oldtimers'. I hope never to fall into that category.

God bless and good luck !

[FlGuy]

'hepatitis jeopardy' and sometimes like 'The Gong Show'

[Kalio1]

I pretty much followed my doctor's thinking first round and our visits were short and sweet. I was UND, and things went along fine. I wasn't clear until week 10 or 11 and he didn't think anything of it, he thought I was doing great. My doctor too has sort of a laisse faire attitude to studies. Not that he doesn't keep up on them, but so many factors are involved it's mind boggling. His words "there is one to refute and one to confirm anything, studies are only one piece of the puzzle"
that was the last time I brought in my printed off studies. He's been doing this a long time and is a good guy, your doctor seems even more experienced and heck, that's what we pay them for. Studies are useful to SOME degree, but too many other variables to consider in how the studies were done first of all and so many other factors are at play to let them dictate treatment for us wouldn't be prudent as Daddy Bush used to say, its a whole lot of puzzle pieces that make up the picture.

I was a very compliant patient, but then I relapsed. You describe it so well, after round one and deferring to his expertise because it seemed to be working so well, this round I was much more aggressive in wanting him to talk to me, explain why he arrived at his conclusions and decisions and plot out his strategy for my tx and talk to me about it. He talks to me much more now because I pose questions that I have worked hard to make concise and dont take lots of his time to answer and explain and because I relapsed, he wasn't expecting that one. Relapse does change how you view the whole thing that's for sure. He has been very forthcoming and works with me, allowed me to increase Riba and extend. He wanted to go the Infergen route but I posed my reasons for wanting to stay on PegIntron and he agreed and said we can move on to Infergen down the road should that become a necessity.
I know you won't have to even think about "round two" because you WILL SVR this time, but if it happens to turn out the way my situation did, I bet your doctor will be much more talkative and willing to explore your concerns in more detail with you.
It's sort of a "if it ain't broke don't fix it" thing I think.
Your major log drops signal to him things are going fine. Sure, it's ideal to clear by week 4 but that doesnt mean people wo do not clear by week 4 won't SVR. Plenty of people dont clear by week 4 who are walking around today HCV free.
I enjoy your posts and your sense of humor, I've gotten some great laughs out of some of your comments. I'm glad you joined the board. I hope you are feeling good and tx isn't too hard on you.

[l-horn]

Exactly. The thing about 'studies' is they are still a 'sub-group' and yeah, human beings tend to be pretty similar 'parts wise', but the variables in behaviour are *HUGE*.

And yeah, I don't care who your doctor is ( not YOU specifically, but patients in general ) , I just don't think many of 'em are interested in chatting with patients as 'peers'.

It's out of our control, Kalia, all we can do is what they say, sit back, take the ride and be as positive as we can.  

God Bless and Good Luck !!!

[jmjm530]

It is difficult getting as much of your doctor's time as you'd like, and the method that works best for me is to do as much homework as possible beforehand and have in mind the exact issues you want resolved at any particular visit.

For example, early-on in treatment I was obsessed with riba dosing and made that the focus of our meetings after going over the usual labs, etc. I brought in studies, we chatted, and ended up "negotiating" an approach that we were both comfortable with.

Later in treatment, the issue on my mind was how long to continue treating, i.e. stay with 48 weeks or extend, and if extend for how long? So again, that became the focus of our meetings-- I mentioned my studies, he gave his input, and again, we negotiated an end date we both ended up being comfortable with. I'll also add that I consulted with three other doctors on the end-date as well during the two-week period prior to week 48 but ended up going with my doctor's suggestion to extend to 54 weeks.

Lastly, I was able to commuicate with my doctor via email. I found this very useful both to resolve issues between appointments as well as to discuss issues perhaps not covered during the visits.

I found involving myself in my treatment very useful, but I also had the time to put into the process and it really does involve an awful lot of time. The only downside is to avoid getting involved to the point where you're treating yourself almost without your doctor's input. Some doctors will pretty much allow this once they have confidence in you.  The problem here is that you may no longer get all the critical advice out of your doctor as you would want.

Personally, I found it a fine line to play. Directing my own tx on one hand, but on the other getting the best out of my doctor who was extremely knowledgable.

All the best,

-- Jim

[l-horn]

I didn't press the issue because I figured that was a bridge that didn't need to be crossed at this time.  IF I clear at 12 weeks AND I continue to have minimal sx AND my blood work holds up I may bring it up when I'm at week 40 or so. A lot can happen between now and then. The thing is, if he won't write the Rx and I do want to extend, then I'm 'on the clock' to find one who will. I'm not opposed to changing docs if there is good reason. A reason like THIS:

My first GP I had when I moved here was arrogant beyond the pale. When my ALT's were high he asked me how much I drank, which was A LOT and I told him that. He told me to quit drinking and come back in 3 months. So I quit for 90 days and got retested and the AST/ALT's were even higher. Then, he started going on about AA and 'treatment' and told me to continue abstinance for another 90 days and retest. Come back in 90 days, AST/ALT even HIGHER.

NOW he's talking about admitting me to some 'chemical dependency' program. That was the only 'reality' he would accept for the cause of my high AST/ALT's, like he didn't believe me when I told him I had not drank, and I hadn't. I refused the treatment 'plan' and he tells me 'If you can't stop drinking you will need to find another doctor.' I was just stunned at this guy. His nurse comes in and writes down a meeting place for AA and tells me 'That's where I go'. It just didn't sit well with me AT ALL. I may be a drunk but I'm not a liar, damnit !! LOL !! So I changed docs, got my records sent over, and was diagnosed with HCV within about a month. So THAT turned out to be the right move.

I do miss drankin' though. I do. So many things go well with it. Football, strippers, smokin', unprotected sex, drivin' fast ....Hell, they just lowered my car insurance I'm so boring. And stupid me, I married my first wife for the sole purpose OF getting cheap car insurance. At least, that's what I told her when she kicked me out.

God bless, and good luck !!

[jmjm530]

LOL. Yeah lots of things go better with strippers :) I think you've got a good plan going. While you don't want to do things at the 11th hour, I found the time at my doc's better spent dealing with more here and now issues than something 30 weeks ahead. Can't believe your old doc BTW, sounds like a real loser.

[Kalio1]

LOL  That doc subscribes to the "once a drunk always a drunk" thinking to the point of being a rotten doctor. That tells me that he is dumb as a post because his thinking seems to be that since your enzymes continued to rise, the sole cause had to be drinking. What a dopey head. I guess it didn't dawn on him there actually are other reasons for raised enzymes!
Good thing you got out of there, bad enough he didn't believe you but he was compromising your health too!

Talk about thinking with blinders on!


Congrats on giving up drinking.

[Kalio1]

LOL  That doc subscribes to the "once a drunk always a drunk" thinking to the point of being a rotten doctor. That tells me that he is dumb as a post because his thinking seems to be that since your enzymes continued to rise, the sole cause had to be drinking. What a dopey head. I guess it didn't dawn on him there actually are other reasons for raised enzymes!
Good thing you got out of there, bad enough he didn't believe you but he was compromising your health too!

Talk about thinking with blinders on!


Congrats on giving up drinking.

[Morgaina]

Jeez, you guys, this is a complete nights entertainment. Extreme knowlege, humor, little sexual stuff and much contreversy (sp?). This place has always given me a place to think but some days you all outdo yourselves. I went into treatment with 15 yr. old information but my doc gave me new news that I was geno 3. So I just did it. Many surprises after that!! Flu-like symptoms didn't seem to cover it. Wish I would have found this place before I started, would have been able to plan a little better. Done and still SVR but still can't believe it! Really, can't believe it. This is the place to come for info and good discussion. Remember, you scientists, there is a human factor in everything than can scew any study, even just an ego! Love this place!

[l-horn]

Yeah just think, I could be sitting in an AA meeting RIGHT NOW, slowly dying of HCV. I think the dude was an addict himself because he would sometimes slur his speech. I gave him the benefit of the doubt. When I went to get my records his clinic was shut down. There was a letter on the door of where to mail requests for records. He had some kind of 'issues'. I don't know what they were but he had 'em. So did his nurse. The whole thing just didn't have a professional 'feel' to it. Now that I look back, he did share his building with a vet. Kid you not. They were seperate offices of course, but still that should have been my first clue. I'd probably been better off going to see him. It's like Kramer said when he went to the vet for his cough, 'Vets are better than doctors, they have to cure a dog, a chicken and a pig, all in the same day.'

Oddly enough,I did have that vet neuter my cat and he damn near killed him. Accidentally cut his urethra. No joke. He was in the animal hospital for like a week. I did an internet search on the guy and this woman had built a site SPECICALLY about this vet, and that he had killed her precious kitty. Her website is called, 'Suki's Story'. True story.

[jmjm530]

Probably that's it but like you say, the question must be asked. Also, as well respected and knowledgeable Shiffman is, others equally respected docs may disagree with his theory that you don't need full-dose riba after being non-detectible. I know my NP felt similar at one point in my tx, while my doctor (at Shiffman's level) disagreed with the NP.

Add to that the fact that in Europe they're testing VX-950 without ribavirin -- cause they think it may not be needed -- add all things together and you have anything but a neat little package to make a decision on. For some reason always seems that way with Hep C treatment :)

Be well.

-- Jim

[l-horn]

U-sed: " Course in my case I'd have to add handcuffs..they say it's the accesories that make the outfit. "

Been there, done that, and then some. I didn't quit dope till they sent me to the pen-uhh-tenchury. That was a defining moment in my life. Never did dope again, never went back. Got one DUI 15 years later. But yeah, addiction is a rough life, for sure. I guess I shouldn't joke about it as being 'fun'.

[strator]

Aww heck, I think the laughter keeps us from not takin ourselves too seriously. Here in hep world too, like your brain fog thread above, laughter kinda seperates us from the events and labels, reminds us we be humans too... or at least close to it.
don

[pln]

THANK'S EVERYONE SO MUCH.