Bad News - Relapse

[returntosender]

Got my 6 month PCR and virus is back - 66,000 strong.  I just dont get it, I was clear at 3 months post on Heptimax and then this. It is devastating because I really thought we had it beat.  Cleared it at 4 weeks, RVR, clear all the way through and at 3 months post.  

I just dont know what to do, I am so shocked by this - its worse than not responding at all because I actually started to think that I would have a life again.  I feel like I was hit by a truck.  Any ideas would be welcome.

[Myown]

So very,very sorry. Just don't know what to say, but I'm very sorry to hear this.

[dodger01]

I am sorry to hear the news. I have been in your situation and can say it is hard to understand. I decided to wait until something new came along instead of attempting the same therapy Riba/Interferon again. I am on Alinia and PegInteron UND at week 3 this time and am still clear today, week 16. My advise "get back on your feet and brush the shoes off and do some research and decide what's best for your at this point in the road". There are new studies being conducted with alot of different options becoming available. Best wishes...

[DoubleDose]

I also am very sad to hear your news.  I know it is devastating.  What Genotype are you, and how long did you do your tx?  As an RVR, did you do ultra-sensitive PCR's or TMA's at the 4 week point, and later during tx?

Have you considered a quick re-test PCR to reconfirm the positive test result, and to see if the VL quantity is staying at about the same level?  There have been a very few cases, reported on the forum over the years, of people going positive for a short period of time, after what appeared to be successful tx, and later going negative again, thus getting the SVR.  I really do not remember who the members were, but their experience in this regard really stuck with me.  It seemed pretty odd.  But now, in light of what we know about residual virus, and the immune system taking control, thus putting the virus into 'remission' maybe those cases were not entirely strange after all.

The next thought is, that if your VL stays low as it is now (66,000 to 100,000), might you be in a position to quickly treat again, get it to undetected, and run the tx out to an extended length (as compared to your previous tx)???  Would you be up to another tx, on the heels of this most recent one?

Just some additional thoughts.

DoubleDose

[dodger01]

Typo on my information, cleared the virus at week five this time...

[sindog]

Sorry to hear this. I may be in the same boat, my 6 month PCR comes in April. The only good news is that you gave your liver a good break from the virus and a chance to heal. A man with terminal cancer was asked how he kept a good attitude knowing he would die soon. He responded that today was a good day to be alive.

Yesterday several school children lost their lives on a school bus. In a moment, their life was over. All we have is right now. And so, hold on to today, tomorrow will come soon enough.

Remember that several people that have never seen you will be thinking about you.
Jim

[can-do-man]

Sorry to hear that. To much of this happening lately. Hang in there we'll get them.
Wishing you the best.

[returntosender]

1a, did 48 weeks with 5.9 million to start but cleared at 4 weeks.  Had the TMA 3 months post  - good to 5 copies -  so it seems strange that it popped up again at 6 months and after the ultra sensitive test showed clear.  I will certainly get another test to be sure.  I think your idea about jumping back might be a good one, perhaps maintenance to keep virus low while waiting for something new.  I like the Alinia idea that dodger is doing, that Riba is not something I would like to jump back on for sure. I will regroup, thanks for the kind words and suggestions.

[Hepatitis Researcher]

You previously wrote that you were solo three month on alinia prior to starting the Pegintron.
When you said " cleared the virus at week5" was that therefore solo on alinia?

What test was used?

Did you have weekly PCr tests or was week 5 your first test?

Please clarify. Alinia might, just might be a big hope for many patients here , what is needed is solid info, as much as possible , so that decisions can be made on an increasingly meaningful basis. Any Dr. can add Alinia off label to a regimen, no trial needed, but will only do so if enough info is around to warrant such a decision....

[Forseegood]

just wanted to say, so sorry to hear about this, bad day, as a good friend of mine found out she relapsed today...there are good things in the works, and time to fight another day...best of luck with this...

[amommy]

I am so very sorry to hear your news.  I too would go for a re-test ASAP.  You will be in my thoughts and prayers.  We are here for you on this forum when you are ready and when you need us.  You did a wonderful thing by giving your liver a break!  Now, give yourself some much deserved R&R.

[kittyface]

Hi, how long is the Alinia/pegintron tx?

Kittyface

[goldyn]

Im so sorry to hear this , it just makes me ill , you went clear to 3mths post undetectable, you did everything you could do, its just not fair and im sorry, at least you know youve given your liver time to heal, so you can be strong for the next fight......

[dodger01]

I am currently scheduled for 24 weeks of tx but I assume that could change and will probalbly find out soon enough.

[Morgaina]

Oh, ****. Everytime I'm checking lately, someone is getting bad news. So many good signs but your body still harbored the virus somewhere. If we could only find a way to direct our treatment to the virus rather than kill portions of our body trying to kill the virus. I guess that's what new research is aimed at. I wish you the best and the strength to keep up the good fight. Like I told Strator, you are making my worst nightmare a reality but no matter how perfect we are (and we all are) we can only do our best. My 6 mo. PCR is Dec.24, I cant believe even now that I'm clear. Nothing is as big as it seems, peace to you, remember, your liver is still pretty healthy so you're still ahead. You're still the winner.

[Kalio1]

What can I say besides I am so sorry tht happened,it's the worst feeling. To have that first 3 month UND and then have this happen is so horrible!

For me, I wanted to get right back to killing it before it had a good foothold and I restarted tx right away.

I know you will decide the best course of action for you. I'd retest to confirm first. Keep in mind all the good the tx did, you suppressed the virus, you feel good physically. The mental blow is tough, but you are tougher!

[sfbaygirl]

You are going for your PCR on Christmas Eve? At least you won't find the results out for another week. Of course, when it's UND you will be jumping for joy. It's hard not to want to know with so much invested in tx.

[honey11]

I am sorry to read this! I also would think after having 3 month clear,,,that the 6 month would also be clear.  Just very rare and I would get one more test just to be sure.  Best Wishes to You!

[sfbaygirl]

I am really sorry to hear this about your relapse. I hope you do have it re-checked to be sure. We invest so much into tx that even though we know the odds aren't great, it is hard to accept that it didnt' work. I was thinking about extending and think that I would retreat right away if it happened to me. Sometimes it seems to take more than once.

[dodger01]

No, I starting taking the Alinia for three months prior to starting the PagInteron per Romark Labs and was tested on a weekly basis. When I started the Alinia I had a viral load of 4 million. The viral load was initially went down and then stabilized. I was then ordered to start the combo Alinia/PegInterferon at 3 months into the trail, at week 5 of the combo therapy Alinia/PerInterferon my viral load was UND with my ATL at 56. Today is week 16 with with the results still the same and I am being tested weekly, every Friday. Not sure of the test they are using. I spoke to my Doc this morning and he was very optimistic by saying "everyone on the trial is running to the finish line and trying to stay ahead of the other to win the race". He said the results of the patients on the trial are very encouraging. :)

[Tater-ToT]

I am very sorry to hear this sad news, & as a former relapser myself know how devistated you must feel... sending thoughts & prayers your way! I am sooo soo very sorry you are having to go thru this!
:(

[Moniker]

I was undetectable at week 12, week 24, and at one week post tx. Just last Friday, Nov. 17, I gave my blood sample for my six month post tx PCR. I may have to wait longer than usual for my PCR results because of Thanksgiving holiday. If I'm still undetectable, I'll be thankful beyond words. If the virus is back, I'll wait for the new meds to come along in a few years.

Best of luck to all of us. It seems to be a cr@p shoot.

[Moniker]

God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.

[jmjm530]

Hardly know what to say except so very sorry. By all accounts the 3 month post tx test correlates very closely to the 6 month, especially with such a sensitive test like Heptimax. Like yourself, I took the post tx 3 month and based on the non-detect felt it was over as pretty much did my docs.

I do agree with the others that you should re-test right away although at 66,000 IU/ml, I doubt you got a false postive the first time. As to re-treating right away, I think an awful lot depends on how much liver damage you have. If you have little or no damage, maybe you should give your body a rest and take a look in a few months on how the newer trials are going.  VX-950 SVR data should be available in less than a year. Alinia sound promising but so little data so far, and the only promising data has it combined with interferon which IMO is worse than ribavirin.

All the best,

-- Jim

[northstar]

So sorry. It hurts my heart whenever I read that one of you relapses after giving soooo much of yourselves to do the tx.
But they are right,.....you did give your liver a break.
Give yourself a break too. You deserve it.

[DoubleDose]

Just one additional thing to bear in mind, in light of your priorcomment about Ribavirin:  Even though the ribavirin is just a component of tx, and not usually given a lot of credit, it IS very essential to preventing relapse, and should be used in the highest dosage allowable per body weight.  I had to cut the Riba dose in my first tx, and relapsed quickly after ending undetected.

I did full and maximum Riba in my second, 18 month tx, and used two shots of Procrit a week to keep from falling completely down the anemia 'pit'.  I still became fairly anemic, even with 60,000 IU of Procrit/wk, over the 18 months, but I think that the Ribavirin kept me from relapsing.  It really messes up the viral reproductive capabilities, and 'warps' its genetic profile, to use a layman's description.  Please do not underestimate the importance of the Riba, as noxious as it is.
Take advantage of Procrit, or the longer acting red cell boosters, and keep the Riba at full dosage when you do your next round.  

Best of luck!!!  Keep the faith!!  Many of us relapsers are now SVR.  You will be as well.  You ARE a responder, so you can get the SVR for almost certain.  Sorry you will have to do it over again, but at least you can be very optomistic about the projected outcome.  Stay well, and enjoy the holiday.

DoubleDose

DoubleDose

[mikesimon]

I'm sorry. Mike

[returntosender]

Thanks to all of you. I really appreciate your comments and concern.  I will take your suggestions to heart going forward - thanks so much.  YOu are a blessing.

[friole]

Oh no.  I thought you had it made this time. everything looked so good.  I can't believe you relapsed at 6 months. What were your liver enzymes right after tx, at 3 months and at 6 months?  We relapsers need to keep together. We need to start a relapse thread every few weeks to tough base. I am just so sorry.

I just made an appointment with a hepatologist in Dallas for April 23rd.  Quite far away, but that's okay - it will give me time to research and think
kathy

[Mister beagle bailey]

I am so sorry to hear tis.  I to relapsed on my 3 month post PCR.  It will take some time for it to sink in, it took me a few months to get over the news.  I know it's hard to accept but time does heal the mind.  My prayers are with you.

Beagle

[anise]

'Frickin A', I so hate to hear this news.  I was und at 3 months and am coming onto my 6 months mid January.  My feelings go out for you, and me!  I could easily become positive as you.  I so want to hear good news, but this is reality and I have to face it.  

My best to you and everyone on this forum.  We shall become SVR!!!!!!

[GoofyDad]

You know, this is so hard. What does one say in these situations? I mean it just plain sucks, right?

One positive is to note that you reponded, and responded well. Being a non-resonder would limit your options going forward.

I hope you find some comfort in knowing how much we feel for you. Best wishes.

[merlino]

So very sorry. Now that I am doing tx I truly understand just how hard this is and then not to work. Better meds will be coming soon. I will keep you in my prayers.

[strator]

I just don't know what to say. A day or so ago you gave me encouragement on my  relapse, but mine was expected. It has to be difficult to BE there, and receive one test that shakes everything up. You offered your thoughts and prayers.. 'as you look for that hand that will take yours and lead you to ultimate success over this illness'. That hand is very large and guides many, and we can all guide each other, as you have helped guide so many here. I guess it'a all a process, pretty baffling at times, and sometimes just plain hurts. Hurt is like grief, it just has to be gotten through before we put on those shoes and start putting one foot in front of the other. You've got a lot of people to walk with here.
Stay close, Be well,
Don

[Tallahassee]

Very, very, ... very sorry....
But don't get discouraged to fight this dragon ... just try to think positive and may be you at least reduced your fibrosis.
Stay strong

[pln]

So very sorry.

[Cindy10]

I am so sorry for you, I can't imagine how you must feel.
Keep the faith!

[Algernon]

It just seems wrong to hear good news at 3 months post and bad news at 6.  My heart goes out to you.

At times like these, I always think of the words of my drywall guy/local philosopher:  "Thngs are never as good as you hope for or as bad as they seem."

With warmth and wishes for good health to you, Algie

[susan400]

I'm so sorry, too.  I'm not a relapser, just a 7 time non-responder.  So, I certainly can understand your disappointing news.  Maybe on of the new things coming out will help you.  Also, do get retested.  Could be it's a mistake, fluke, or maybe, they even mixed up your sample with someone else's?  Stranger things have happened.  Take care.  Don't get too discouraged.

Susan

[cuteus]

I don't get it either! didn't your strain read the statistics?  that RVRs are supposed to be SVRs?  leave it to an illiterate virus to not get it!  I feel bad for you, this was your second shot at tx?

I just read somewhere about a high percentage of SVR rate when retreating within 6 months of stopping tx.  I got it at home and I am at work.  I hope I remember to look for it later...remind me?
take care

[GrandOak]

Sorry to hear the bad news.  I too know how hard it is to take it when tx fails us.

You may want to consider doing what I'm doing, which is to regroup and recover from tx battle while considering alternatives.  If nothing else, it's kind of nice to start feeling like a human again and clearing some of the fog helps in considering one's options.

[friole]

I agree with you -- how much better could you do since you were clear at week 12 (what was the sensitivity?)?  There must be some damn good hiding places for viruses in our bodies.  I just don't think they know what to do about this very virulent strains.
kathy

[returntosender]

Thanks for all of you comments and thoughts.  They are most welcome in this unbelievably hard time.  Saw doc today and got bloodwork.  True that virus is at 66,000 copies.  Should I test again?  No, only if it will help your peace of mind she said.  ALT and AST however are very low!  Asked doc if this was good sign.  She said not really as they will rise over next 6 months.  Also asked if it was relevant that virus was so low after 6 mos whether immune system was capable of bringing it down.  Doc said no it would get back into millions in a few months.  Asked her if biopsy would be helpful to assess condition of liver after 18 months without virus.  Doc said no, she is not concerned about condition but what is causing condition.  She said she was at Liver conference over the weekend and Vertex is three to five years away for non-responders.  She was not big on Alinia.  She wants me to lose weight and try 72 weeks.  Says that gives me a 25% chance of success if I get to ideal body weight.  I asked her how much better could I respond than I already have - 4 weeks RVR, undet all the way through 48 weeks and for 12 weeks post tx.  What was ideal body weight going to do with that equation.  She didnt know - "good question" she said.  At this point, I am quite stuck and very very shocked by the outcome and frankly by the negative response from the doc.  I guess she is upset as well because she pretty much said you are good after we got the three month test.  Anyway, thats the story, I am back in the game.  It will probably take some time to digest this one though. Thanks again for your kind words.

[Oreos]

Wow.  I'm so sorry to hear this.  Take some time to regroup and think about next steps.  You had the strength to get through tx, and you will get through this as well.  You have many friends here pulling for you!

[returntosender]

Great advice!  I was really looking forward to SVR for that precise reason, to finally stop letting the virus and docs run my life.  But your right, I dont need SVR to do that.  Thanks Scott, thanks for thinking about this and for giving me a fresh perspective.  Thanks.  I am a 2-3 - mild to moderate damage and perhaps I can take a breath here and to have a life for a whilte in spite of the virus.

[returntosender]

Kath - I cleared at week 4 from a pretx viral load of 5.8 million!  I remained clear at week 12, 24 and at 12 weeks post tx.  I have officially shot all the percentages to hel!.  According to what I read, I am curable but just not cured yet.  Somehow that would be encouraging if it didnt mean another 2 years of treatment in my future and the corresponding 6 months to 2 years of post tx recovery! I will be 60 something by then. I guess I would rather be 60 with SVR than without it but then SVR really seems to be a difficult thing to achieve.

[dyce]

So sorry for you, but you gave it yur best!!

[DoubleDose]

One more question about your tx round.  What was your daily ribavirin dosage, and what was your average weight during tx?

I do not agree that you would have a 25% chance of SVR, by the way, if you do 72 weeks!!!  That seems like an 'out of the hat' response by your doctor.  If you were to get another RVR, or close to it, and go the full 72 weeks, at full dosage of both Inf. and Riba, I will bet your odds of SVR would be closer to 80% or better.  Length of tx AFTER getting undetected seems to be a critical element for many type 1's out there, and it might just take you 14 to 16 months of being clear, and doing full doses, to fully achieve the SVR.

The Riba part of the equation is also very important.  I take it you are somewhat heavier than you should be.  If there was not enough Ribavirin getting into your system, and not enough of a heavy move into anemia, then you might have been seriously underdosing the Riba! Your system may not have been fully metabolizing all the Riba. This is the component that prevents relapse after ending tx undetected.

I think this is an issue to fully explore, in and of itself.  Procrit is there to help people through tx, and not sacrifice the Riba induced SVR capabilities which are only produced at full dosages.

Your doc should be more optomistic, and offering a solid alternative strategy, while pinpointing the factors that could be adjusted in the next go round to produce the desired result.

DoubleDose

[Kalio1]

you said


"Your doc should be more optomistic, and offering a solid alternative strategy, while pinpointing the factors that could be adjusted in the next go round to produce the desired result."


I think this is great advice you gave. We all need a doctor like that!