Treatment stopped - options?

[Trish77]

They have stopped my treatment permanently.  I got the call at 4pm yesterday but haven't been able to do much but be a stun bunny since then.

My CD4 counts that monitor my immune system were too low and they lymphocyte counts never recovered enough so everyone on the trial in my position has had their treatment stopped permanently.  I found out yesterday around 4pm and I've just been in a bit too much shock and still am.  I wasn't expecting this at all.  

I just started Week 34 and I went UND at 6 weeks. My VL was 217 at 4 weeks. I've been on 75% of interferon for about most of 10 weeks now since about Week 25.    One week of ribavirin reduction at Week 15.  

I just started the neupogen last week.  I begin to wonder if there would have been a difference if they'd have let me start the neupogen earlier.

I guess the rumours that have been floating around are true and it's not looking good for R1626 going forward.  They did have someone die on the trial and someone has fallen quite ill and I guess that's as much risk as this trial incurs now and they've pulled us riskier people off.

I don't know what my options are really.  I'm processing and not coming up with much, can't say that I'm really able to think clearly.  My doctor won't let me flip over into SOC because he won't treat me with my immune system in this shape.  But....I'm checking.  I don't know at this point and if anyone has any suggestions, I'm open to it.

My CD4 counts have been 200, 160 and 180 and my lymphocytes have been at .3 and .4  I'm on antibiotics to keep me from getting an infection of any kind.  I've been trying to understand the implications of my CD4 counts other than my treatment team telling me how serious this is supposed to be and I'm just not grasping it yet.  I *feel* fine,  you know?

I confess it's all a little surreal at this point.  That's really all I've got right now.

Trish

[kickboxingmom]

Wow ! I just wanted to let you know I'm praying for you to find ALL the answers your looking for to be the Best for your Health.
God Bless,
Tammy

[Trish77]

I am sorely tempted to keep taking my riba, my neup and my eprex/procrit .. guess I'm having a hard time accepting this.  Just STOP?  Stop fighting??  Not sure what to do at this point.  I can't take the riba without the procrit, my numbers just keep dropping without it, they were at 10.1 and I figure they'll go lower without the procrit.  So I can't exactly do this on my own without being monitored between the thyroid, the rising enzyme levels and the various issues.  I'm not sure if I can get another doc at this point and I'm not sure I want to and I don't know if this is the point where I just have to stop and say I gave it a good kick and hope for the best, hope it was long enough.  Okay...I'm thinking out loud now and I just need to process again.

[charm27]

Im sorry. Dont you despise those words sometimes??  I hope whatevevr you decide with your doctors will find you free of this one day soon! Just keep telling yourself you have very mimimal damage. If your immmune system is in such a lousy shape right now, I imagine you would have to leave it alone for awhile? Unless there was a way you could get SOC , but you doc said no.

This disease is a spin of the roulette wheel for all of us.
I am truly sorry the trial didnt work for you..........
There will be other options....like the new drugs around the corner and you can certainly wait being you have minimal damage.

Wishing you all the luck in the world.
Give yourself a rest now...............

[Fl_Gator]

Don't kill yourself to fight...withdraw and get healthy then if the dragon rears it's ugly head again you will be ready to fight again. The point of fighting is to keep your health and live life.

You may not have to worry about it any more...it may be gone.

Prayers coming your way.
Gator.

[portann]

I've only read your opening line but need to tell you now how I'm devastated by your news. I can't fathom it. I will go back and read the rest of your post but I'm discombobulated by the turn of events.

I want to send you my best regards and will try to re-assemble my thoughts.

You are such a winner, however big a blow this is for now.

[desrt]

No telling with a trial drug in the mix but I'll say a prayer and hold a good thought  that you stay UND. (Lay off the riba.)

[FlGuy]

Doesn't make sense to take riba a week beyond the last Peg. What's the schedule for pcr's over the next several weeks?

[comeagain]

Sorry to hear what has happened to you, someone told me if a geno 3 isn´t RVR he should be considered to be treated as a geno 1, or at least extend 24w after UND.
And you maybe thx to trialdrugs responded  faster then you would with regular soc you were UND at week 6 if I remember correct.
So in a way you could be considered more like a geno 3 and have been doing 34weeks thats 4 weeks more then Dr D would have treated you if you were a geno 3 UND at week 6.
I think you have a fairly good chance of having cleared, any way your in my prayers.

ca

[cpclinic]

I agree with Fl_Gator,
You are in a better place then when you started.  Get strong, stay positive and keep fighting. The fact that you are such a strong and positive person will get you through this journey. Remember you are UND, you did respond!
cp

[meakea]

Trish, I am very sorry for your situation!  I am stunned so I can only imagine how you must feel.

I agree with FI_Gator also!  He took the words right out of my mouth.

My prayers are with you!

[sunshine585]

I'm so sorry to hear that, I'm in exactly the same boat. My last CD4 was 130, was told last week, that if I didn't get up to 200, I was off too. They thought they'd have the results by last Tues. Or Wed, but I haven't heard a thing yet. I was afraid to call them as I thought if I find out the news is bad, I'd have to quit immediately. So far no news is good news so I'll keep taking the meds. However, now that I know you've been pulled, I'm taking tomorrow's inj. today...just in case. Good thing is We're both und. I didn't go as early as you, before wk 18, and I've had many dose reductions in the beginning. Let's just cross our fingers, and hope for the best. I hope you've cleared.
     S

[zazza]

I am so sorry for you, Trish, you have been fighting so hard. It must be awful to be pulled off tx. I know I hated it when I thought I had to quit 3 weeks early out of 72. I just could not make myself stop taking those drugs. It had become such a habit to fight the virus.

I can't help thinking that you probably would have been better off treating with just SOC. This is a reminder to us all that these new drugs are not yet approved. Will there be any issue with resistance towards telaprevir for you now?

[nygirl7]

Oh my God I just saw this here and I can't believe what I am reading. I'm just absolutely shocked and haven't even had time to process this.

Well Trish - at this point you've been clear for almost 30 weeks.  There is a damn good chance that the virus is arleady long gone and not coming back. If that is the case, you've just saved your body all the wear and tear of doing all those extra weeks of interferon.

I think you should just calm down and say I AM still fighting this.  Let your immune system recover and take it from there, let IT keep fighting and doing what it is supposed to now. There is every chance here that you've won already and just don't know it yet.  THAT is what I am going to believe.

Go get your post tx PCR as if you have done all 48 weeks.  Don't fret about what might come in the future, as you know that can't be predicted anyway no matter what.  I think at this point you either have SVR or not and the extra weeks wouldn't have mattered.

It's time for you to recover now and move on with your life as a healthy adult.

This is one SVR I am going to be hoping for more than anything.

Love, Deb

PS Even when I had to stop at week 72 - I STILL wanted to keep taking the meds, that is a sort of a natural thing once we stop. So just try to put it aside...even if you went to the whole thing - chances are, you still wouldn't want to stop them anyway. We get too used to them and they become a crutch almost. I know for me.......I thought about just finishing all the meds I had and that would have put me at about week 74 or 75 LOL yeah when is enough enough?  I bet you $5 it was week 33. That's a good number.

[Trish77]

Thank you .. at work today and all I have time for is to read .. but I AM reading and digesting ... thank you.  PCR's at 4, 12 and 24.  Been reading up on CD4's and getting some insight into the risk for opportunistic infections at low CD4 counts, which mine and Sunshine's are (hang in there Sunshine) and just continuing to digest.

Trial is unblinded now .. was in Arm E of the trial... 1000mg of R1626 polymerase inhibitor, 90mcg of INF and 1200mg of riba for first 12 weeks.

Take care, all.  This means alot.

Trish

[Deb_c430]

I have no idea what even to say! I am shocked, these words are awful to read.  My dear friend, those are even more awful words to hear.  

Our trials your only  option?  You are a stubborn fighter Trish, take a step back and recover a bit, as was mentioned.  

Praying hard for you!  Had been thinking about lately.   we will find a way and maybe just maybe,  SVR was already achieved. I am so here for you!

Love ya

Deb

[jdwithhcv]

I'm shocked!  You are one of the strongest warriors in the battle - I have to believe that counts for something and you will get SVR.  Now its time to get your strength back and keep your fighting spirit.  You've been UND for so long - excellent chance that you beat this thing.  Just look at alagirl, she was taken off tx early and just recently posted her SVR news.

Wishing the best for you.
jd

[Andiamo1]

I am truly sorry to hear the news.  All is not lost though; you might be SVR and if not, you have at least let your liver heal to fight again another day.  I have been in your shoes 7 times, so I know how difficult it is, but you will live to fight another day.

You have certainly bought some time at the very least and you have been undetected long enough to have a good chance for SVR.  If not, you can afford to wait for Telaprevir approval or perhaps something even better.

Get some rest and in a week, you will feel so much better and clear thinking that you will make a great decision on how to proceed (as you have many times already).

Best of luck to you,
Eric

[Willy50]

I have been working an awful lot and haven't been posting much but I still do read, although less.

Here's my take on it;

First of all....I'm sorry.  As mentioned that may not count for much but people DO care about you and your treatment and ultimate status.  Now that I've said that.......

First of all...... it may be a GOOD thing.
     1) you cleared early on and have maintained that status.  It's quite possible that you have had more than enough treatment to eradicate the virus.  
     2) it's out of your hands.  You are are getting into the danger zone and have been hovering near it for a spell.  It has been judged by a large team of medical professionals about the correct course of action.  Any of us armchair critics don't have the medical background to tell you what to do.  We also particularly don't have the trial information to make any recommendations ....even if we were doctors.  First ......do no harm.
      I once met a guy on line that came down with a type of pneumonia (due to low whites during TX) that virtually only AIDS patients got (immuno suppressed; get it?)  He ended up with permanent lung damage.  There is a reason for these guidelines.  
    

Regarding cooking up some sort of below the radar continuing treatment...... I would say don't do it.  You have a team of doctors who are looking after you.  They need to know what you are doing to know HOW you are doing.  I would suggest that you ask them what sort of supplements or protocols that they approve of that would speed your recovery and help replenish your low blood scores.

You can ask them about your statistical chances at this point of an SVR.  I would think that they are quite good.  I rather doubt that continuing on with RBV would do much to increase any response rate at this stage of the game.

One can never know what to do.  This is a trial and much later the stats will become available.  My quick summation is that I doubt that you have much to gain but given your scores and that you may have much more to lose.  Give yourself permission to say that it's out of your hands at this point.

Good luck and know that we will all anxiously be awaiting your next PCR.  Crossing fingers until then......

best,
Willy

[fretboard]

"Trial is unblinded now .. was in Arm E of the trial... 1000mg of R1626 polymerase inhibitor, 90mcg of INF and 1200mg of riba for first 12 weeks".

I'm totally sorry for this difficult news and completely blown away.  You were UND at week 6, that was with half a dose of Peg, you did very well to reach a UND so soon with such a low dose and that just increases your chance that you may still reach SVR.  Again my heart and prayers go out to you in your time of need.  I suggest relaxation or whatever you do to de-stress even taking a week or two away from your current surroundings if you need to.  Time to pamper yourself, and by all means don't self medicate, you have plenty of time to think this over.  God Bless  

[mikesimon]

I will hope and pray for the best.
I'm terribly sorry about this.
Mike

[TeeVee36]

The most important thing here is your health and well being and that is why they stopped your tx.  My friend Libzo, suffered horribly for 48 wks(hgb 8.5, passing out at her house because of lack of oxygen) because she wasn't pulled out of her trial.  She did many a dose reduction which caused a relapse at her 3 mos post pcr lab.  You may have read her posts...

Anyway, you may be SVR as of right now and you don't have to go on any further!  Stay optimistic, I know it is hard right now.  Even when you finish the full 48 you feel strange not having to take pills and shots anymore because that is what you are used to.  

Look forward to seeing your UND posts at 4 wks, 12 wks and most of all, your 6 mos SVR!!!!!!!!!

TV

[jmjm530]

Very sorry about the news.

Since I'm sure you're unblinded now, def find out what drugs you were on and what doses. If you've been on full-dose Peg for 30 plus weeks (with your near RVR) then you probably have (this is a guess) around a 70% chance of SVR if it was just SOC. Maybe better with what they added in the trial.

So, one option is simply to accept this and look at the positive. You're done with all the poison and potentially still have a very good shot at SVR. Another option is to go outside the study (and study doctors) and get another opinion on whether or not you should continue under private medical care. If you go this route, don't tarry, because you don't want to miss a Peg injection (or at least two in a row).

But if you do stop, like others have suggested -- no point in taking riba any longer than a week after your last Peg shot. It simply will do no good and all you will have are the side effects. As to the epo, I was told to stop taking mine when I stopped treatment bu t some others continued until their hgb went up a bit. If you continue to take it, make sure you are monitored at least weekly because two high a hgb can also be dangerous.

-- Jim

[jmjm530]

Just noticed were in the half-peg arm. Do you know if there's been any published SVR data on that particular treatment protocol?  If so, you might want to try and get hold of it for analysis before making any decisions. If not, then hard to say what you're really working with. In any event, your week 6 UND has to be seen as positive as RVR (or near RVR) appears to trump other tx stats. A difficult decision to make but I'm sure you'll come up with the right answer for you.

-- Jim

[Myown]

So sorry to read this. I hope to hear that you are SVR even though you had to stop. I still think you have a good chance at clearing...I so hope to hear that the virus is UND when you have your next PCR..

Take good care of yourself, and truly sorry to see you go thru this.
MO

[Jacob43]

Trish,  I'm very sorry that you are going through this.  A positive, your liver has had a 35 week break and from your profile I see you were in good shape to begin with.  It is possible that you are currently SVR, I hope so. However, as Jim states above, if you want to continue without much interruption, get another specialist on board quickly.  Whatever you decide, whether it is to recuperate from this treatment and become strong for the next battle, you have everyone here supporting your decision.  You appear to be a strong individual, and I'm hoping the very best for you and, of course,  you will be in my prayers.. Jacob

[Trish77]

Okay.. one quick question.  Should I not be getting an immediate EOT PCR?

and thank you again to *everyone* ... I've been processing and figuring out what makes sense to me and almost there. So grateful for *all* of you.

Trish

[jmjm530]

Yes, definitely get an EOT.  The more data you have the better -- if not for now, for the future.  Have blood drawn six days after your last Peg injection. Also, try and get as sensitive a test as available. <50 would be the bottom line but if you can get down to <10 or <5, so much the better.

-- Jim

[Deb_c430]

agrees with Jim

[kickboxingmom]

I just wanted to share that even though Trish had just heard her sad news. Early this morning I got on here and she was posting and helping people when she had a thread no one had posted on or seen yet.
Posting and not knowing what was going on with herself.
Trish, that is so not selfish.
You'll be fine, I know you will.
Remember you thought how you may not be in such good health in a few years and decided to tx ?
Let's Hope for :The Earlier, The Better
Early Response,The More Better
Early Withdrawal, The Most Better
It's Time to think about You !
Take a minute, hour, a whole day and look at the big picture.
Docs pulled you off, Why ? Your health is at risk here.
You trusted the docs to go into this and I hope you trust they pulled you for a reason.
Listen to your intuition.Your body should know what is enough.
2nd. opinions are a good thing like jmjm said, or Andiamo said,you have a good chance you've SVR'D !
I'm saying this because you are an unselfish person and also take the time to think, think some more before you make THAT DECISION !
God Bless,
Tammy

[kitkat14]

I'm so sorry to hear your news.  Try to keep your chin up, it sounds quite possible that you will reach SVR anyway from the sound of your stats.

All the best
k

[geterdone]

Hey! in da boat, well row boat that is, here have an ore, now to get from point A to point B we need to row togedder, ok. We’ll start off slow and stay the course for due north. Ok, you start first… don’t look at me like dat, we have to get away form the dock, (eye brows up) looking side ways, go head pull da roe. Dare ya go you did great! Ok here we go… one and two, one and two, togedder now, so what’s been going on, how come they stopped the treatment? Yes, yes, slow down your going to fast… ooook, ok but slow down a bit, well ok that fine, its better to stop than continue treatment and cause all sorts of problems more so than what your experiencing now and there is always another day. Ease up a little… yeah I know its easer said than done but its going to get even harder if you don’t stop rowing. Big HUGS to you and am sorry to hear this. ;(

jasper

[Emilio44]

Once again Trish I'm sorry to hear this news.  We started on the same day, same trial and as it turns out the same tx arm.  I hope you soon get clarity around how to proceed from this point.  If tx is out of the question for you at this stage then maybe you could round off with therapeutic dosing of PPC.  I know there's no solid evidence but it may have an added benefit of helping you move to the next point while providing a little additional hope.

My calcaulation has you at 28 weeks clear and what weight can we give to 2000mg daily of R1626 for 12 weeks?  I think you have a realsonable at SVR.  R1626 is still a kick *** drug and in my opinion Roche's decision to put a half dose of peg in the mix was a fundamental error as well as the procrastination and uncertainty around resue drugs.  This drug should have been up there competing with telaprevir right now, however I suspect greed got in the way.

Stay in touch Trish and good luck with the decisions you need to make and subsequent path. Regards Emi oo

[pKinCA]

Oh my goodness... What a shocking turn of events!

After typing this, I'll do some sleuthing on internet and hopefully find some studies with good SVR odds for you!  

I have a quick question for you:  Do you know WHICH interferon you were taking? Was it peginterferon alpha-2a (Pegasys) or alpha-2b (Pegintron)?  I think it's important to know because 90 mcg of alpha 2b might actually be 100 percent correct dosage for your body weight!

Trish, I'm devastated for you, but if they have had one person die in the trial, then I think they are doing the absolute right thing by taking you off the meds...  That is very serious!

When I was in ER for the second time during my tx, I made the decision right there and then that I could not continue tx and I was devastated, crying...  The ER doctor told me "You never know, you could have beaten it permanently."  I was stunned!  "Huh, what??  No way, not with only 7 injections and 5 weeks of riba..."  I thought he was only saying it to get me to stop blubbering :-)  Well, guess what?  He was right!!  I found out last night that I did reach SVR... Studies showed 33 percent chance with my genotype and length of my tx.  I'd hands down give you MUCH better odds than that my friend!!!  Triple therapy, very early response and 34 weeks... You can't discount any of that!

Don't give up hope and try not to have regrets... You gave it your all and fought with all your might!  But, preventing serious injury to yourself is first and foremost!!!  Please don't lose sight of that...  

Will send you anything I find, okay?

Your pal, pK

[willing]

sorry - but really, what I mean is - this need not at all be bad news;  I think/hope you're going to be fine.

- r1626 has a very strong anti-viral profile; 1000mg should have been plenty
- your w6 UND indicates a clear response and you had the benefit of plenty of rbv
- your thyroid problems are at least circumstantial evidence that even at half dose you were responding strongly to the IFN (this is anecdotal, but I believe everyone who has experienced thyroid problems has SVRrd)

Pushing for more ifn given the CD4 and thyroid issues you're experiencing seems risky. I'd opt for taking  a deep breath, focusing on the rest of life  and waiting for the dust to settle.

There's a very good chance you paid your dues and got SVR. You'll know by Jan. If the fates turn out to not be  kindly disposed, the outlook is still not too bad:

- R1626  has no detectable escape mutations so you haven't eliminated ns5b follow ons like r7128
- you *know* you respond strongly to ifn/rbv
- the ns3 meds that  far away

[Trish77]

I took my riba yesterday ... I couldn't help it.  I wasn't done thinking yet and just when I thought I was ready to let go, down went three more riba...lol  :)  Today is another day and after reading through all the posts with the collective wisdom here that helps you think straight when your emotions are too involved to do so reliably for yourself, I've been able to "land".  Looked at my sharps box this morning and started to cry, realizing it's time to snap the lid shut.  Couldn't do it just yet...but give it a few days when it's time to clean up my kitchen (it hides behind a cookie jar on my counter, weird huh?) and I'll snap the lid shut and be done with it.  

I guess that pretty much clarifies my decision.  It's just time to stop.  I found this link dealing with HIV/AIDS and CD4 counts, treatment and opportunistic infections and after reading this and other things....well, it's just time to stop.

http://www.avert.org/antiretroviral.htm

I think to continue now would be reckless.  I did think about getting a second opinion....but it's just simply time to stop.  I need to get my immune system back into recovery and make sure I keep the same advice I've doled out .. you don't kill the patient while you're killing the virus.  

If I have to treat again, I would want the same doctor to treat me.  We've developed a good relationship and I respect him and even though I've been a pain in the a$$, we've developed a synergy that I've come to appreciate and I would want him to treat me next time.  The whole team there is developing into something I respect - the psychiatrist on staff who treats people specifically for the mental impact of HCV treatment and their ongoing efforts to treat the whole person with HCV and all their needs which is not easy to do in a universal health care system.  I don't want to alienate this team just to be a cowboy with limited returns that are potentially reckless.

There ARE alot of positives as so MANY of you have said.  I have UND at Week 6 in my favour and continuously.  That's what I am now.  UND.  That's what I'm going to stay until a PCR tells me otherwise and now it's EOT and I wait it out like everybody else.  Did call and request my EOT PCR though..

I've been in total shock the last 24 hours ... I had to go to work but had a hard time focusing on things.  This is not how I envisioned treatment ending .. it was supposed to end on my birthday, January 30th, when my last dosage of riba was scheduled, all symbolic-like, you know?  :)   Not with a thud and a bodyslam to the floor like *this*...lol  :)

What has kept me going the last 24 hours .. is coming in here and reading all the supportive and heartfelt comments from all of you.  I have only had time and mental energy to read...but I've BEEN reading .. and your comments and support have sustained me... each and EVERY comment .. and I mean EVERY comment...has given me a gift that has made me stronger the last 24 hours and helped me keep it together and helped me think.  I've gone back and RE-read the comments a number of times because it makes me stronger to have your wisdom, encouragement and support.  It's what we do best here and why this place is such an incredible treasure.  Thank you so much for being there to ALL of you.

So anyway....I'm not quite in "kay sirrah sirrah" mode (for all you people who remember Doris Day's little ditty) but I'm getting there.  The snow is flying out my window and I'm starting to realize...I'm done.  I'll get to lace up my running shoes sooner than I thought and head out for that winter run I've been aiming for since I started treatment.  My kids will have their mom back at full strength alot sooner and I'll be able to get my life back faster than I expected.  I start to get excited thinking about   all the things that are suddenly no longer "on hold" and I'm anxious to fly again.

If I have to fight another day, I will.  As of now, I am UND.  And that's what I'll be until I get definitive proof otherwise....and I'm holding out hope that the UND becomes SVR.

Willing...you summed it up very well.  And hey...I'll know by January.  Looks like I might be due for a birthday present after all, eh?  We shall see. :)

Love you all.

Trish

[Tallahassee]

Yes, Trish, you will have a nice B-day present -- SVR!!!

All the best to you all the way to SVR!!!

[frijole]

I am sorry that you have been pulled.  However, I did a little googling last night on the CD4 and yours is well below normal.  The fact that they actually have you on a preventative antibiotic is a pretty strong signal that they are worried.  CD4 is a type of T Cell very instrumental in immune issues.  You really need to get off the INF to build those back up.   I understand the "I feel fine, really" issue -- I think it is that way with most of us who have had ANC lows on treatment.  I believe, especially since we don't feel that bad when our white counts tank, that we need to rely on the medical professionals.

Our friend Willing does the heavy lifting on translating those pesky PI issues and he sounds pretty positive for your SVR.  I would feel pretty comfortable after reading his post.

Just relax and try to let your body rest.  I am sorry that you were pulled but amn optimistic about your progress.
frijole

[ladywhy]

Read your post yesterday..just before leaving for a dr.s appt. Initially, I couldn't or didn't know how to respond. Like so many others have said...you do have a fightin' chance for SVR. I can easily imagine the shock...and I am sorry. Thankfully, you are feeling ok. physically and with your inner strength..I know you will be ok emotionally as well. (Actually, you sound like you are already)
You know I wish you the best Trish.
Sincerely,
yvonne

[jmjm530]

The decision to stop makes a lot of sense given your total circumstance including both your confidence in your medical team along with your minimal liver damage. The whole idea of treatment is to do more good than harm and right now that line is starting to become blurry at best. As many have stated, you probably have a very good chance of already being SVR and just waiting to find out. The really good news is that it's ALL OVER. If it were me, I'd go out and celebrate. (Sensibly of course :) )

Be well,

-- Jim

[alagirl]

This is all so difficult.  I am with everyone here in being so hopeful that you already have SVR.

I can tell you that I also had a difficult time stopping tx earlier than my tx'ing physician wanted me to, such that I spent time tx'ing that I shouldn't have until I got a second opinion that said to stop (it took longer than usual for my second opinion due to my hospitalizations, and probably, my own ambivalence).  The point is, by that time my immune system was toast and I was in the hospital right after tx multiple times for various things, with many infections - one of them limb threatening.  You can drive your system into that and that wouldn't be good either - and hopefully in your case the additional tx time would be unnecessary as well.

My hematologist told me that the neupogen is extremely short-term per shot - that's why some people on chemo have to take so many of them, much different than procrit.  So I think whatever help you get you would see quickly - just so you aren't lamenting the what if about having started earlier.  Not certain that would have helped.  

If you are seriously troubled and can't get around it, then perhaps get a second opinion from another hepatologist just so you can tell yourself that you turned over every rock.  Then let it go and we'll all be praying (and crossing our fingers) for your SVR.  

[Texas714]

I'm sorry for you...
I know what disappointment taste like...I just had a big ol' dose if it myself.
Like others have said this may have been enough to do the trick.  And it sounds like you have the time to fight another day.
Good Luck to you.

  

[dointime]

Well color me a sceptic but I just don't trust the assumption that the trial doctors do what is best for the patient.  They are paid to do what is best for the drug company and the aims of the trial.  

You obviously do have health issues, but who doesn't on tx?  I'd try to find a doctor who would give you an independent 2nd opinion fast, and who would be confident and expert enough to take you through to 48 weeks if that were at all feasible.  

I know that by 34 weeks we all feel very drained and low and there is nothing more appealing than the idea of stopping the drugs.  But just make sure if you do stop that it's really unavoidable because of your health, and not just some line in the sand drawn arbitrarily by the drug company.

Good luck,
dointime              

[dointime]

On the Vertex Prove2 trial that I was on there was a guy who was sick all the way through.  He got dose reductions to 135mg peginf. and 600mg riba most of the way and also needed procrit and neupogen.  He did 39 weeks treatment before he threw in the towel.  He worked it out as 3 weeks to UND plus 36 weeks (Drusano study).  So for you it would be 6 weeks to UND plus 36 = 42 weeks.  He got his SVR.  Could you make it to 42 weeks with procrit and neupogen?

dointime    

[rita863]

Trish,

I just so this, I am so sorry!!!! I dont even know what to say.. I am sorry....

peace
rita

[frijole]

Are you saying that someone on a VErtex trial GOT Procrit and Neupogen, or just needed it.  I thought they didn't allow them in Telaprevir studies.
frijole

[nygirl7]

I'm busy proving that your thyroid problem means SVR so hang in there!  If I say it, it must be so as you know because I am so rarely rarely wrong! ;)

I too think it's time to just put the stuff away and just go go go get back to life my friend.  Too many people are rooting too hard for you for you not to already have SVR.

Like I told you - even if you finished it still is a chore to put the meds down - when you want something so bad it's just hard to stop.

You have shown us all what a warrior you are.  Some people whine and cry and make such a big scene for so little - but you, never ever did that and THAT is a true inspiration to others.  You gotta know how many people will now stand strong and have courage in the face of hard times - all because of YOU.

Continue to be strong.  You ARE the warrior - don't ever forget it for a minute.

deb

[dointime]

I PM'd you,
dointime

[Trish77]

Tallahassee and Elaine and Ladywhy and rita (hugs to all of you :)...thank you for the encouragement. :)  It's been a helluva rollercoaster the last few days and it always helps to come in here and read and get strengthened.

Jim....thanks for weighing in, your opinion is something I highly value and it helps me think....and calms me.  You have been part of my treatment team whether you knew it or not.  Lousy pay though, eh? :)  Gratitude doesn't pay the bills .. I just hope it matters to know how much of a positive difference it makes to have you onboard.  Words are so weak sometimes.

Frijole and alagirl.....thanks for the backup information and additional perspective.  That was the impression I was getting too from reading different things and that I was heading into this unknown risk zone and not something I wanted to play with. Thanks for being there with your own perspectives and information, it has helped.

dointime ... thanks for putting out an alternate perspective and daring to beat a different drum.  We need those people who question so that we can make sure we're on the right track and your questioning just cements that for me.  I didn't "throw in the towel" or get "treatment weary".  I was in full fighting mode and I was prepared to go the distance and had even been entertaining extending lately because of the dosage reductions.  As far as blindly accepting what the trial team is telling me .. well....lol ... I haven't really done that all along and I've fought to push the limits of the trial as much as I could to get my rescue drugs to keep me on track within trial parameters.  I've been a pain in the a$$.  :)  

I did my research on this, asked about being flipped over to SOC, considered going for the second opinion and after reading up on CD4's and the risks when they get low ..figured it's just time to accept this is it.  maybe you call that throwing in the towel.  I call it accepting my reality. This was not an easy place to come to and if I thought I should keep fighting it, I would.  I think I'd be crossing the line into reckless and I have three kids who deserve better than that.  So this is where I stop.

nygirl7....Deb.....what do I say to you.  You have become a cherished friend.  Thanks so much for your passion and compassion in building me up and making sure I'm okay.  So I just want to tell you that I AM okay.  You can relax.  :)  The only stats that matter at this point are my own so I'm going to wait out my PCR's and see how it goes.  I'm not going to worry about *anything* before it's time.  Not a thing.  It's ALL out of my hands now.  I'm UND at the moment and will take each PCR as it comes now.  As for warrior....well Deb ... I don't hold a candle to you, gong 72 weeks with all you endured both in public and in private.  But thanks anyway. :)

I'll post my PCR's as they come.  Thank you *all* for being there.  I would NOT have made it through the last few days without your support.  I treasure all of you.  

Alrighty then ... there are all of YOU who are considering treatment, starting treatment, enduring treatment, waiting for results, watching and waiting while you live with and manage your HCV and those who are just learning they have HCV ...lots to focus on here on the forum.  Lots to do.  

Hanging in there and hoping the very best for all of you.

Trish

[meNtoby]

Trish, here's hoping you stay UND and go on to SVR.  I'm pulling for you, but had no experience to relay on the matter.  You've got the right attitude, sometimes you just have to roll with it, and see what happens.  Live to fight another day if necessary.....

Best of luck as you move forward with your life for now!
cathy

[pKinCA]

I sleuthed and sleuthed and couldn't find a *perfect* comparison for SVR odds for you because your treatment was so specific and not like any studied yet... ( ...well, until your ex-study is complete, that is...)  But thought I'd paste this link here because I think it would give any RVR Geno 1 who did shortened tx some hope.  Even though you were UND *maybe* a few weeks later than "true" RVR I believe there is a lot to be said for your tx (especially because you eradicated not one but two genotypes, correct?)  

The article basically says tx for Geno 1's for total of 24 weeks SOC has pretty high SVR rates...  

Again, not an exact comparison... but to give you some perspective... I find this study very interesting and very exciting!

pK

http://hivandhepatitis.com/hep_c/news/2008/101408_b.html

[merryBe]

I hope you do really well sweetie...let's keep thinging positive. Half the people on the new drug treated half the time and did well...you went longer still. Pleanty to be hopeful for.

the CD$ could have been up from a cold or any number of viruses, but if you are HIV coinfected then they don't want you that low cause real scary other infections can creep in...so I think maybe it was the safe call for you.. The idea is not to kill the patient in the process of trying to cure them...so there will always be those judgments we may not understand or agree with.

anyway, I still think your glass looks way more than half full.
prayers and well wishes.

mb

[Trish77]

Thanks for the note, merryBe, appreciated.  I'm not co-infected.  I have HCV only. I only included that reference as the only place I really found CD4 information was in reference to HIV/AIDS.   I'm sure I'll do the woulda, coulda shoulda's from time to time but trying hard not to do that to myself and to stay focused on those positives while I wait out the PCR results.

Hope you are keeping your head above water on your tx, merryBe.  Take care.

Trish

[susan400]

Trish,

I am sorry that you have had this news about having to stop the trial earlier than expected.  I know how upsetting that can be.  And while, (NOT TO MINIMIZE) your concern, you do have the good news of having reached viral clearance before being pulled off, so that may at least be enough for you to keep going SVR.  Please hold on to that.  Your treatment team of Dr.'s seem to be very good.  I am impressed that they offer you counsel/psychiatrist, etc., in your despair over this disappointment.  I had no real comfort of that offered to me in all of my being booted out of treatment..., other than here on the message boards I mean.   Basically, my doctor would just say, "sorry you're not undetected you have to stop"; I was pulled from the trial and sent on my way.  About a month later; come back in for follow-up labs and basically, it's just like wam-bam, grab your blood work say the standard, "wait for better drugs, blah, blah, blah," and send me on my way.  So, I get left with this overwhelming depression and sense of failure.   It takes me several months to get past that and then, I regroup and start searching again for something else to try.  But, you have this great team to encourage you and also, viral clearance!  So, you do have alot to hang on to, right?   However, I do also know how disappointed you must feel.   Susan400

[Trish77]

Dear Susan.....thanks for the words of encouragement even though your own disappointments have been many and far beyond my understanding.  I definitely have much to be thankful and hopeful about and good reason to maintain a positive outlook.  

I'm really hoping things turn around for you ... both personally and healthwise.  You've had a very difficult time and I'm hoping that boceprevir or R1726 gives you some hope .. keep looking for the beauty in your own life and live to that. I'm wishing you many lemonade days ahead...lord knows you've had enough lemons to make quite a supply.  Holding out hope for your health and happiness, Susan.  

Hugs to you.

Trish

[Lady Lauri]

I can't read all the post right now (what wonderful responses tho! Here's that med help spirit!) but wanted to add I agree with Fl gator and others in don't kill yourself for the cure, you were pulled as it's getting dangerous for you. I was reduced twice and while it was upsetting, worriesome, it was what my body needed. I can't quote anyone right now...but I know many feel that triple therapy can be less time on tx, with great chances of SVR. You made it to 34 weeks and I truly feel that is a very good shot at SVR. You need to heal, get your immune and counts back up and know that you DID YOUR BEST in this. There simply comes a point in this tx, especially the trials, when the risk is too high to continue. Really Trish, you still have a very good chance of SVR. I'm sure the sides, brain fog/confusion is not helping at all in this. It's such a roller coaster as is.

The hope here is SVR and you will be one that had less exposure to these drugs to achieve it.

Hang in there, heal up and I hope to see continued UND, SVR from you.

[IAmTheWalrus]

Fingers crossed! Tusks crossed too!

CrossTuskedWalrus

[Mikkimoe]

Hey gal - so sorry about having to throw in the towel early - I sure know how it feels as I only made it to 13 weeks when my immune system went bizerk and I had to stop...still trying to recover from it but have been UND...holding my breath for my 6 month PCR in Jan.

The odds seem very good for you and it's so nice to get off those horrible meds.

Hang in there - I'm cheering you on!

Mikkimoe

[HARRYBEADS]

I agree with some of the others, regain your strength and try again. Western has a great clinic with Dr. Jenny Heathcote and TG has Dr. Morris Sherman both top players.
  

Harry