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Treatment Decision - Doctor's Suggestion - My Dilemma

Treatment Decision - Doctor's Suggestion - My Dilemma

I need a vote from every one of you please. As I'm ready to enter my 5th treatment in January, I got back from the Gastro's visit today and this is what my dilemma is.

The Hepatologist Dr. Gish wants to treat me with a double-dose of Pegasys along with 1200mg Ribavirin daily. My Gastro thinks this is a losing proposition because I'm a 4-time non-responder and he thinks the chances of responding to this are between 15-20 %. He feels I should take the chance that I will get the Telepravir and do the 12 visits to Cedar-Sinai hospital in L.A. (650 miles round trip each visit) with my gas guzzling Dodge Durango at 13 mpg, to get the VX-950.

Here is his reasoning. If I don't get the Teleprevir, he will THEN double-dose me with Pegasys. If I do get the Teleprevir, then he feels this is the way to go for a consistent, stubborn non-responder like me to clear. He agrees with Dr. Gish that I am at the beginning stages of Cirrhosis, judging by the numbers.

So there it is. I have a 66.6 % chance of getting the Teleprevir and a 33.3 %  chance of getting a placebo. I calculate the cost of gas alone to be $2000+, and the cost to my body to be yet discovered. Would you be so kind as to take time to let me know, each and every one of your opinions (votes) on this most important matter?

Thanks,

Magnum
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Avatar_f_tn
There is so much more to factor in ... what are your blood count numbers, your overall health, how long will the "double dose" treatments of Pegasys be?  How hard are the treatments on you?  And even if I knew all that I'm no doctor so I couldn't  advise you of something sensible anyway.

The only thing that stood out in your post and what came to mind to me was that $2200 , to me, is an insignificant price to pay for good health.  

Andromeda
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439539_tn?1233469415
Just wanted to tell you I'm sending my prayers your way.To make the RIGHT decisions.
Tammy
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9648_tn?1290094807
I've never treated and am trying to figure out things myself so I don't really feel qualified to vote.

But . . . couldn't you fly in and out of LAX for less (or the same?) and wouldn't that be easier on you overall? It seems like a lot to be doing all that driving. I think you could get a bus or shuttle from LAX to Cedars. (I bus around LA all the time.)
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Avatar_f_tn
http://www.thestreet.com/story/10420415/1/vertex-unveils-more-upbeat-hep-c-drug-data.html

I would do the telaprevir trial.  

You will know by 12 weeks how you are doing.  Then if you are not responding, DROP the trial and go to SOC at double-dosing INF and higher dosed riba right away and continue on as if starting over again.  Consider that 12 weeks as pre-dosing.  As much as I believe in being committed to a trial (I'm in one), there is a line and being borderline cirrhotic is it.  Dropping out of the trial because of non-response at 12 weeks is also a useful statistic.

From what I understand, treating while you have cirrhosis is a hit and miss proposition, sometimes you can treat and sometimes you can't.  (Someone please correct me if that is inaccurate??)

From the data in that article, you have a 41% cure rate to get the telaprevir - varied by what arm you get into, outside of the control arm.

12 weeks....anybody can tough anything out for 12 weeks.   Hitting UND by 12 weeks would make all that driving mighty sweet.  

Rent a car or use alternative transportation, IF that is more cost-effective.  In fact, be prepared to use it.  I'm a road warrior but my driving adventures are somewhat curtailed by treatment these days.  Mind you .. hitting the highway has also been great therapy.  Get tape books.

That's my vote.  If you decide otherwise...well, there's gauf for inspiration there.

Whatever you decide....I wish you well.

Trish
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I vote for the telaprevir, it makes more sense to me even if you have to pay and travel to get it.  Good luck with your decision.
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151263_tn?1243377877
You oughta learn about alinia, which might turn out to be a good option as well (still being researched, but so far looks promising). The thing about telaprevir is that it requires a reasonable response to SOC in order to reliably work as well. Did you ever achieve UND status on SOC? Or at least get a significant VL reduction? Also, if your BMI is high (i.e. you're overweight), getting your weight in order prior to treatment can help. Lastly, can't you just get a smaller car? I sold my F250 recently and was glad to see it go.
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476246_tn?1310999221
I find Trish's suggestion very reasonable....


I also agree with mremeet, there is the Alinia.... So you could even have a plan 3... check into it, it is very interesting. There are two ways of doing it, either predosing, or starting to take it once UND, I think. There has just been a discussion around this on a post addressed to HR. I'll bump it back up for you.

Marcia


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There is another aspect to consider.  That is if all arms that receive TVR get BOTH Peg and riba.  Susan 400 was in a TVR trial, got TVR and Peg, but not Riba and was not successful.  I really think TVR (with other stuff maybe) is the way to go but it probably needs to have the side cars of SOC.
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Avatar_f_tn
FlGuy:  Good point.  I assumed that, at this point in time, they wouldn't be considering going without either Peg or Riba.  Personally, I would not take the risk at your stage of doing an arm where either of these were missing.  

Magnum:   Do you know the dosages in the three arms and can you post them?
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Avatar_m_tn
I'm not a big fan of the protease inhibitors, but if this choce is an 'either/or' I'd go with the trial. My weekly round trip (to the nearest gastro that would even take my case in 2002) was 450 miles. I quickly stopped driving my Dodge van and bought a 20 year old Honda 'beater'.
There's a bias on this board toward following the advice of big name hepatologists, but I feel the opinion of an experienced gastro who has treated hundreds or thousands of cases carries equal weight.
Best of luck.
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Avatar_m_tn
I was in a similar position to you at the beginning of the year.  SOC or the Roche RO1626 trial and I chose the trial with 7 tx arms, 3 having only 1/2 dose (90ug) of PegINF.  I live 4 hours from clinic so it is/was a 8 hour round trip for me, in total 88 hours of travel and 6,600kms (not sure miles) before I was taken off trial and switched to SOC at 15 weeks.  I believe I was on one of the 90ug PegINF arms and struggled from 4,480,000 at baseline then back and forth to 59,000 at week 12.  I was 1.9 log drop at week 12.  At week 12 all my Red indicators remained solid and still do.  At week 12 my whites were WBC 4.7,  ANC 3.00 (pretty bloody good all round).  Now at shot 18 my WBC 2.0, and ANC .6, these results all but confirm my theory of 1/2 dose peg.  Anyway long story I know but, if I had my time again I guess I would go with SOC, because 90ug PegINF is soul destroying stuff, particularly on trial when you are getting tested weekly and you see the battle up close.  How is your health? Those trips can get really lonely and at times scarey, particularly if they turn out to be on shot day.  I however do understand your dilemma as time is of the essence and telaprevir for all is still 2 years away.  What were your blood results like throughout your tx's, double PegINF can strip away your WBC, Neuts, ANC, Lymph pretty fast.  Have your considered Alinia with SOC? Regards Emi
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Avatar_m_tn
Are they offering free SOC tx if you fail on reduced dose of PegINF, that's assuming they have 90ug tx arms. If so then if trial drugs are successful for you then that's fantastic, however if unsuccesful on a reduced dosage arm and they are offering a free go (48weeks)so to speak, then you could end up doing around 60 weeks for free.  This alone may save your liver to fight another day 2010 when telaprevir is available for all to play with.  Hard decision my friend but get on tx asap whatever you decide. Regards Emi
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Avatar_f_tn
I'd go for the trail...then if that doesn't work out, you are set for Plan B with the double dose.
Good Luck to you whatever you decide.
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Buy a motorcycle and do the trial is my vote.
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29837_tn?1314410659
Just got off the phone with Cedar-Sanai and found out I'm on the trial waiting list. Here is something interesting. I had my last biopsy done December 13, 2005. they will not accept me on the trial unless I get another biopsy. The waiting time for the trial entry he said, is approximately 3 months.

I wanted to wait until January because of work, but he said the list will be filled by then. This is yet another dilemma and pressure because I WILL have to stop working and no income. Decisions, decisions, decisions....

I will try to answer all questions posed to me regarding my thread as soon as the doctor gives me numbers, dates, etc..

Thanks,

Magnum
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388154_tn?1306365291
Your 61yars old probebly stage 4 you have treated 4times relapsed, you say you are a non responder what does that mean have you never reached UND?, what is your previosly tx history.
Have you fullfiled any tx, been taken of  early every time or what?

Can you give some more specific info.

I have relapsed once I wanna give it the optimal go this second time if not succesful I leave the soc idea and go for something else.

I dont like trials when you dont no what your getting, i dont think theres a risk not getting riba anymore but you can still get to weak doses I think, man this is tuff you need to do this soon but you also dont wanna have to do it again.

If I were you I would investigate further talk to more then one doc, excatly when is deadline, cant you get some extra deal with vertex optimal doses.

If so I would go for the telaprevir if not if possible wait for meds to come out.

You got my prayers

ca
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303646_tn?1214951327
  maybe you should think about infergen, the sxs are easier and in might work for you.
I vote against the double dose,
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Avatar_f_tn
Then, GEE WHIZ, what if you get real lucky and get the Arm that DOES use the Telaprevir, but has NO RIBA?    That's what happened to me and I had rebound, did not clear and now, they will not allow me to retreat w/Telaprevir.  I think, IMHO, since you did ask us to vote, did you not?,....I'd say go w/either A) Wait until the real deal of Telaprevir gets FDA approved and you can definitely treat with ALL 3 drugs, or B) Go with the double dosing of Pegasys and 1200mg idea.     I do not recommend that anybody go into a Telaprevir trial unless they realize that they MAY end up w/the NO RIBA group.   Please read over any of the Telaprevir trials and closely examine the various groups - if there are any groups that use just Telaprevir and Pegasys then, there is a chance under normal 'randomized trials' that you could be placed into that group!  Please understand that if you are exposed to the Telaprevir and don't get all 3 drugs, then they will not allow you to retreat w/all 3 drugs and you'd have to wait until it's FDA approved anyway!    

Magnum, I say this for anybody else that's contemplating a Telaprevir trial because in good conscience I have to make you and others aware of this.  I would hate for anybody else to get the no Riba group and to get a 'relapse' in the 1st 4 weeks like I did.

Travelmom's daughter Amanda was also placed into Group C of the Prove trials and she ended up having breakthrough as well, after having initially cleared.

Susan400
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29837_tn?1314410659
I posted a thread a couple of days ago with numbers and lab results. This is the catalyst for telling Dr. Gish I have the beginning of Cirrhosis. The Gastro told me yesterday that my MELD is 7. He said that MELD of 20 or higher will put someone on a transplant list.

I'm optimistic although cautious about retreating many times. In spite of pharmaceutical companies claims of safety and doctor's claims of efficacy of these drugs, they have taken a toll on my body for sure.

Knowing my nature of being a fighter and not wanting to be beaten in a battle, I will most likely go with the Telepravir trials. If you think of the alternatives, then you know where I'm coming from...

Magnum
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Avatar_f_tn
AND, another thing to consider, NO RESCUE DRUGS allowed.  AND, another thing to consider, use have to be clear by 4 weeks, not the 12 that's mentioned above.

Susan400
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29837_tn?1314410659
Thanks my friend. I will discuss your view on all this with my Gastro. He is a very approachable doctor and very determined to help me. Who knows, I may still be able to get the Ribavirin in spite of the trial’s mandated protocols. In his own words, he told me in his office yesterday "tell me what you want me to do and I will write a prescription now". Not sure what that means, but he is also the doctor that wrote the Medical Marijuana script for me.

He is very progressive and may shed some light on what you said. The one thing I'm very thankful for in this wonderful country (who many people bad mouth), is that I can get any treatment paid for by my insurance because of my physical disability. This disability is multiple dual hip replacements due to Childhood Rheumatoid Arthritis.

So as you can see, I'm battle hardened and I think physiologically and mentally, I've prepared my body for battle many times (13 surgeries) and I’m still here to tell the tale. I think there is definitely something to be said about "mind over matter", since through four brutal treatments, I never developed anemia or thyroid problems. Maybe it's because a higher authority is not yet ready to take me. Stay tunes...

Magnum
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Avatar_m_tn
susan, very, very good point on the rescue drugs, sense the pi's seem to be a one shot only, thats one of my concerns with a vertex trial. I'm also a relapser with soc. And looks like my best shot will be Telaprevir with soc. But i needed procrit early on so if i risk a trial and get lucky and get all three drugs but get the boot early due to low HGB then i'm sol with the pi's.

mag, what susan says about rescue drugs needs to be dissused with your doc.

Beat to both of you

can
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388154_tn?1306365291
Now they know that the inhibitators do not work without soc so its no risk you not gonna get all three anymore but will you get enough?


ca
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388154_tn?1306365291
At least thats what I´ve have heard most sinceraly hope thats the case, better double check with trial responsibles though, of course you can only get 2, peg and riba and the tela stuff could be placebo.
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Avatar_m_tn
One of the new trials i'm looking at does have one arm in it that doe's not include the  Telaprevir just soc.
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Avatar_m_tn
If I understand correctly you haven't developed cirrosis (cirrhosis) yet? How do you feel on a day to day basis?  From what I understand if all goes well Telepavir will be approved by 2009 or 2010 which is not that far away. Can you wait.? Personally I don't like those trials that have placebos. We already know standard tx is not going to work for you. Save your energy.
     Red
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I don't feel qualified to give you adivce as I am biased.
However, I will tell you my experience.
I am a previous non-responder who did not have a 2 log drop on SOC.
I enrolled in the Prove 3 trial and cleared early on.  Currently I am 12 weeks post treatment and still undetected.  
Susan mentioned a good point about the rescue drugs.  They were not allowed in the Prove 3 trial.  I became anemic very early and was only on full dose Riba for a few weeks of the the 48.  Most of the time I was on a reduced dose.  I had to discontinue the Riba completely for several weeks of my treatment so I was very frightened.
I didn't think they were having any more non-Riba arms in future Telaprevir trials but I could be wrong.
Good luck in your decision making!
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Avatar_f_tn
I am biased as well.  I already have telaprevir resistance from a no-riba arm of a trial so my usual advice would be to wait for telaprevir to be approved and treat under optimal conditions.

However in your case I would change my mind because you have to treat now, not later.  So I think you should treat with whatever has the most chance of success, which I think is the telaprevir trial.  If you don't get the drug you can always drop out and fall back on your other plan.  Either option will at the very least buy you time.

Getting telaprevir resistance is a bummer but it is not the end of the world.  There are so many new drugs in development that it is only a matter of time before one comes along that can be used in combo with telaprevir and will kill those pesky resistant  mutants.  Your job is to stave off liver disease progression till those drugs arrive, anyway who knows but you could get yourself SVR with telaprevir first time around.  

The logistics of the thing, travelling, cost, etc may seem like a big mountain to climb but in relation to your future health they are just temporary discomforts.  You can work them out.  My trials centre was 450 miles away so my round trip was 900 miles.  It wasn't easy, especially when I felt tired and nauseous, but it can be done.  

Good luck,
dointime        
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Avatar_m_tn
I agree with the buying a cheap bike and go for it,maybe you could even find a place close to the TX centre...ya cant epend on trials...kill the  Little bastards while you can.
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Susan - You mention that the latest trials are still including riba-less groups? Are you certain of that? I can't imagine they're still including a riba-less group, although I haven't looked into it specifically. Still, I'm pretty sure they've done away with that arm.

magnum - I agree with what dointime said. I had to travel ~300 miles round trip to my trial center (through city traffic at parts). What's gotta be done is what's gotta be done. In the grand scheme of things, it's a minor annoyance and expense (yes even with $4.50 gas). I would look into finding a cheap hotel near the trial center, like a motel 6 or something. Or maybe even a cheap rental room that you can get weekly rates on (especially for the first few days of the trial). You don't want to drive 325 miles back home after your first shot (at least I sure wouldn't want to). And there will be other days where staying overnight and going home in the morning will be infinitely more tolerable. Since you've already treated, you know what these drugs can do to you. Six-hundred and fifty miles is a long way to drive with an HGB of ~9 (or worse). Throw in some sleep deprivation, brain fog, riba-fueled road rage and antihistimines for itch/anxiety - and it could get deadly real fast. Is there anyone that could take the road trip with you each time, especially as you start to deteriorate? That'd probably be best, someone to share the driving with you.
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Avatar_n_tn
when gambling,  a good general rule is not to risk more than you can afford to lose.  Your most valuable 'asset' here, IMHO, is access to effective use of an  NS3 PI to halt further progression towards cirrhosis. As long as the conditions of the trial don't put that asset too much at risk, it seems fine to bet.

Pulling placebo, for example, would be a bummer, but you'd walk away from it having given your liver a break and still have the option to use VX in the future. On the other hand, if the trial puts you at 'significant' risk of walking away with ns3 resistance and no svr (and the amount of  risk will depend on the details of how the trial is set up ) - it may be better to stall a bit longer and treat after fda approval.
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29837_tn?1314410659
In response to questions floating in many people's minds as to the protocols of the CURRENT testing for non-responders. I ppasted this earlier and the rules still apply, as I spoke to the tech today.


First, they want to do a biopsy, even though I've had three already, the last one in 2005. I am a 4-time non-responder to treatment. Interferon-Ribavirin, Interferon-Pegasys, Interferon-Ribavirin, Infergen-Ribavirin-Amantadine...

I would have a 66.6% chance of getting the VX-950. The way it's structured is like this:

If I get into Clinical Trial A, I would be given VX-950 (along with Ribavirin & Interferon) for 12 weeks. Then, 4 weeks of the placebo.

If I get into Clinical Trial B, I would be given the placebo for the first 4 weeks, then the VX-950 for 12 weeks.

If I get into Clinical Trial C, I would be given the placebo.

Unfortunately, the tech I spoke to mentioned that the feeling so far in the final release of the VX-950 to the public won't be until 2012. Let's hope he's wrong. I'm still torn in making my final decision..,

Magnum
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446474_tn?1334111688
How about an easy question?! Wow this is tough! Lots of pros and cons on both sides. Only you will know what's right for you. There is the logic of it yes, but also a very important emotional side too.

Personally I would go for the trial. Mostly because all the previous treatments with interferon and ribaviron didn't work. I think you need to add something new to the mix. And hopefully you'll get it. If not UND, you can always do Dr. Gish's protocol afterwards.

You still have time. But I think it is very important to try what you can now. When the cirrhosis combines with portal hypertension odds of SVR with SOC treatment drops to about 10%. Liver fibrosis is one of the most decisive factors limiting SVR. So do whatever you can, while you can. Go for it!

...Here is presentation discussing best practices for persons retreating based on their previous experinces as non responders. At Clinical Care Options,

http://clinicaloptions.com/Hepatitis/Treatment%20Updates/Treatment-Experienced%20HCV/Virtual%20Presentations/Virtual%20Presentation%201.aspx

New Options for HCV Nonresponders:
"Navigating Emerging Data and Best Practices for Treatment-Experienced Patients"
This new Treatment Update provides a comprehensive review of the latest data and best practices on management approaches for patients previously treated unsuccessfully for chronic HCV infection.

Best of luck whatever you decide!!!
Hector
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151263_tn?1243377877
As a shining example of what's possible, check out Andiamo's profile. He was infected for 40+ years,  he's in his late 60's, failed combo multiple times over the years, and was knocking on cirrhosis' door. He enrolled in the Vertex trial and received the telaprevir and SOC. He concluded treatment about 3-4 months ago and got his 12 week post tx PCR back a little while ago: he's still UND. This means with about 97% certainty he's SVR now. As you can see things can work out. I also successfully treated in the telaprevir trial too - SVR now, thank you very much. It can happen. In fact, if you manage to get into the trial, odds are probably in favor that you will SVR.
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Avatar_m_tn
First of all.....forget about the "no riba" arm.  There will NOT be a arm with no ribaviren.

Secondly don't confuse the trial for naives now enrolling with the trial that is scheduled for past treatment failures this fall/winter.  UNTIL that trial design is read in clinical trials or the shape of it is released to the public you really can't say what it will look like.  I'm pretty sure that ALL trial participants will get riba however.
-------my assumptions about the trial are this; This is a 3rd phase registration trial; 1) there will be a SOC control arm.  2) there will be a "12&12" arm with a contingency for SOC expanding to and increased 24 weeks based on response. 3) There may be an arm with a 4 week SOC lead in followed by the triple therapy "12 &12" with the same post 24 week SOC therapy for slower responders during the 12&12 phase.
-------This a phase 3 registration trial and they want to see just how many people can be cured.  I wouldn't rule out the potential use of a rescue drug.
-------As mentioned until this is seen in print at clinical trials there will be speculation about what the trial will look like.

Susan and Dointime certainly have a point about making sure that you treat with the best means possible.  It's possible that the drug will be out soon; can you wait?  I don't expect that you'll have a resistance issue however.  IF you pull a SOC control arm you won't be exposed to telaprevir and thus will have no resistance issues.

Personally I wouldn't do double dosing over triple therapy.  You don't yet know what the trial will look like but if you get in line you could have a 2/3 chance of getting triple therapy.  I agree that if you are a past nonresponder (rather than a relapser) your chances are less.  If you ore overweight or insulin resistant your chances will also likely drop.  What are you out to "get in line" while you decide and see what the upcoming trial looks like?

best,
willy
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Avatar_f_tn
Willy, I'm just basing it on what I know from my experience.  I do know that all of the previous Vertex trials allowed NO RESCUE DRUGS.   If you had a drop of your RBC or WBC then, it was a dose reduction and that was all that was the choice, they absolutely allowed no rescue drugs.   I have no way of knowing whether or not they will change that in their future trials.  I do know that in that short time I was on it, I had the horrible rash, my white cells dropped and I had rebound in the 2nd week due to the fact that I had no Riba.  So for me, Telaprevir is out of the picture and I can't even be considering it as an option when it becomes FDA approved because it was just too much for me to deal with even w/o the Riba.

Susan400
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412873_tn?1329178055
My vote is go for it.  Triple therapy seems like the way to go.  Willy does have a good point-not to get the treatment naive trial confused with the nonresponder trial.  I am more familiar with the protocol for the naive tx.

In the naive trial-all arms get SOC - so for people like me it is a good risk.  They seem to be very aware of developing resistance, so you will be taken off the telepravir if you do not reach the typical milestones( i can never remember them)  So my research coordinator told me that even tho they will not give you lab results, you would know where you stood based on that.  So if your trial runs the same way-couldn't you opt out at that point and double dose????

A good friend in a prior post said it quite well-(Trish is awesome!)-- so I will post it again for emphasis....

"You will know by 12 weeks how you are doing.  Then if you are not responding, DROP the trial and go to SOC at double-dosing INF and higher dosed riba right away and continue on as if starting over again.  Consider that 12 weeks as pre-dosing.  As much as I believe in being committed to a trial (I'm in one), there is a line and being borderline cirrhotic is it.  Dropping out of the trial because of non-response at 12 weeks is also a useful statistic."

Best to you with this difficult decision.

Isobella
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151263_tn?1243377877
Susan you said they have never allowed rescue drugs during any of the telaprevir trials. That's not correct, in Prove 1 they allowed us to use rescue drugs after we stopped taking telaprevir. Rescue drugs were only prohibited during the telaprevir dosing period, but they were allowed after we were on SOC alone. I was prescibed procrit and so was PDS and perhaps others. Also, I was on reduced riba (1200mg down to 800mg daily) for most of my treatment, stopped the telaprevir very early (by week 7), took tons of immunosuppressants (to control rash), and I concluded treatment early (week 41 instead of week 48). And even then I still SVR-ed. So clearly dose reductions are not necessarily the end of the world, especially if they only occur after achieving UND (which is typically what happens when telaprevir is involved). Dose reductions do not necessarily carry the same ominous consequences while telaprevir is included in the mix when compared to straight SOC alone.
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Avatar_f_tn
In my trial, they allow rescue drugs but are reluctant to give them.  And I'm not sure that it's trial protocol that dictates their reluctance, perhaps more of an individual trial centre thing.  Therefore, I would clarify under what circumstances they will give rescue drugs and if that's trial protocol or trial centre preference.  You just want to know that upfront if you know to ask the question.

mremeet, can you clarify at what point you got your dosage reduction, when you say you had your riba reduced to 800mg for most of your treatment?  Thanks.  

Your situation turned out very well for you in light of all your interruptions so to speak.    Wonder how that turned out for others?  Was there alot of that and still achieved SVR?  Thanks.

Trish
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151263_tn?1243377877
"mremeet, can you clarify at what point you got your dosage reduction, when you say you had your riba reduced to 800mg for most of your treatment?"

My dose reduction ebbed and flowed throughout treatment. And my riba reduction was never really because of excessive anemia, it was for skin itching/rash. My skin had been so tramautized and sensitized from the telaprevir rash battle I went through, the ribavirin simply literally made me want to crawl out of my skin (even many months after I stopped taking the telaprevir). My doctor never ordered a riba reduction, my HGB was about 9.5 on full dose - which ain't good, but plenty of people have tolerated 9 or even lower. I ordered my own reduction mostly for the rash and itching the riba caused. But to be sure I was dragging a$$ due to the anemia as well. I could actually feel the effect of the ribavirin pills a few hours after taking them. For me I would feel it mostly on my scalp and back, a tingly pin pricking sensation. I scratched my hair away and clawed my eyebrows clean off. I simply couldn't take it, so I lowered my dose to whatever I thought I could tolerate. Some days I missed my riba all together, I went several days without riba during the worst part of my rash episode. As I recovered, I went to 600, then inched my way to 800. Even up to 1000 for a day or two, but then always had to fall back to 800 - that's pretty much all I could take.

Now, I came close to an IFN dose reduction, but it never did happen. My neutrophils had fallen and stayed low throughout most of my tx. At one point under 500, and they almost cut my IFN when that happened. But I was retested with the local lab (instead of shipping the samples to another state), and I was found to be just over the magic threshold. Plus I ran up and down the stairs prior ot blood sampling to help increase my measured neutrophil count (using the term "run" figuratively here ;-)

And you ask how well it turned out for the others. Most of the people I know who got all three drugs came out ok and SVR-ed. All of the drugs are nasty and do awful things to you, but I have to say that together they're a potent force against HCV. I can see on the horizon that HCV's days are becoming numbered (at least in the developed world). All these new drugs and supplements, with more and more being developed/discovered all the time. We're living in a time where HCV is a fading plague. In another 10-20 years I think HCV will have gone the way of polio, and good riddens to the f**king thing.
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476246_tn?1310999221
The Danish insert of the Copegus says that one should NEVER halve or crush the pills. If a pill has accidentally been crushed and touches any part of you skin, you should wash it immediately with soap and water.

Marcia
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HUH?
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Thank you for that.  Makes things crystal clear for me.  More than you realize.  Thanks for your answer.

Trish
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They must have a different insert over there because I've read the Roche insert front and back and doesn't say anything like that.  Maybe someone pregnant wouldn't want to touch a broken pill but we ingest it daily and I've touched and taken two halves that were broken, didn't hurt me.  If it's crushed and touches any part of your body?  Wow, that's just weird to me, especially when I'm eating the stuff everyday!!  Can't see how absorption from skin contact would cause any problems except for those that are not taking it.  
Trinity
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If what you said is true, that is odd. Never heard that before. Like trinity has said, there are the usual strong precautions against pregnant women touching or handling the pills (who are not undergoing treatment, obviously). Is that what you're refrring to? Otherwise, yeah I don't see how handling the pills (broken or otherwise) is any worse than actually ingesting it. The only thing I can think of is absorption rate - some pills are coated so they are absorbed at a certain rate. Is that what you're referring to?
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i have a problem in my health like my blood.  i think my white blood bigger than my red blood?..
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you should start a new thread. this one is from 2008.

interesting question. perhaps you could elaborate a tad on your question.

do you have HCV?
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I would go for the triple therapy the odds are better.  As for transportation check and see if you can strike a deal with the airlines for the multiple trips you will need for medical reasons.  There is also an Amtrak train pass.  Worth a try.  Good luck with what ever you decide you've been through a lot of tx. You definitly deserve a break.
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sorry I didn't realize this is really an old post
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179856_tn?1333550962
Thats ok pirate our friend magnum is still waiting for that telapravir so his being cured is still relevent and it was nice of you to answer.
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