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