Virus is back! SOOO depressed...

[Krisosterous]

Hi everybody,

Just got the results from my first viral load test post Tx.  I'm genotype 1a -  I did 66 weeks, but had to stop due to bleeding in the eye and peripheral blindness.  Had a 2 long drop the first 12 weeks, so I felt hopeful.  Now I feel lost...  all that time, and all the awfulness that went along with the drugs...  I have no idea what's next.  Can anyone direct me to any promising new treatments or clinical trials?  I'll do the research if you can give me the links.  

Thanks for any help or insight.

[fretboard]

Sorry to hear that you've relapsed.  Since you've experienced eye problems, I'm thinking that was related to the interferon.  I know there are new interferons on the horizen, the one that comes to mind is Lambda.  I've read that clinical trials for this drug have started in the U.S., I'm not sure of where they're at or anything.  Also, you may want to wait for the two new PI's to be released, telaprevir and boceprevir.  good luck to you

http://www.drugs.com/clinical_trials/zymogenetics-presents-positive-interim-phase-1b-results-hepatitis-c-6075.html

[alijee]

very very sorry to hear that you have relapse after so long struggle

[CMcH]

My heart goes out to you, how devastating that must be. Totally unfair and cruel after going through this TX for so long. I have read about many others that have relapsed and tried again successfully. Hang in there and I am sure you will hear from others.
Hopefully it gave your liver a reprieve by slowing down the progression so that TX wasn't in vain.
Wishing you lots of love and strength
Connie

[Krisosterous]

Thanks for the info on the new interferon and the PI's.  I have been very afraid I could never go back on Interferon again. And Connie, you're right - I hope I at least slowed the progression.  It's just very frustrating to feel SO much worse than I did before I started, and for what?

Anyway, I've been reading about telaprevir, and have a lot more studying to do, I know.  In the meantime, thanks for letting me vent.  It's different here, because I know that you all know a LOT more about how this process is than friends and family do.  I just get so tired of listening to myself complain!  I guess  need a few more days to digest his news.  Hearing from you all helps a lot.

Thanks much,
Kris

[Libzo]

I'm so sorry you drew a short straw.  I can say that because I did too.  I was in the Albumininterferon + Riba trial for 48 weeks hoping for the miracle of SVR.  The critical 12 weeks after EOT is when my viral load was no longer UND.  

Just completing the regiment was such a relief.  Feeling the drugs slowly leaving my system was wonderful but Wow, I got depresssed.  Very tough.  My support was flakey and my resolved flattened.  I had this recurring dream of getting on a bus that would never reach its destination.  

I found out I am one tough *****.  Yeah.  I like to think that.  But now after making an appt. with another doctor to restart treatment in a couple weeks, I feel anxious.  I am scared.  

Kris, I know you know you are not alone.  There are so many SVR's that keep the light on for those of us on the other side of the 50/50 chance we took.

I'm proud of you.  You're a tough lady too - I mean that super positive - stronger and fiercer than any dragon.  

Next time - I want rescue drugs with no dosage reductions and would like to find a doctor that would work with alinia in tandom with SOC since it is already FDA approved.  What do you think?  After all was said and done, I got SSI and medicaid - am bound to get better treatment I hope.

[skersj]

I don't even know what to write; my heart is so sad for you. But don't forget, at least we have hope of new drugs that are more effective and of shorter duration. Those who went before us did not have this hope. Take time and heal. You did 66 weeks! You are tough just as Libzo said.

[smaug48]

I am so sorry to hear that you relapsed.  This stupid virus can be one tough bugger, but you are tougher - you will get SVR some day, it will just take a little longer than some other people.

Did your eye problems completely resolve after you stopped tx?  What explanation did you get from your doctor about why the eye problems occurred?  I just took shot #66 myself...

smaug

[jacksonblue]

sorry for your relapse i hope your eye problems clear up i have relapsed from 72 weeks i just finished march 23 24 weeks teleprivir and been neg since week 2 hopefully it lasts i will post results as i get them this was 4 th time treating great drugs coming do not give up best of luck steve

[meakea]

I am so very sorry for your relapse.  It's especially cruel news after having done 66 weeks of TX!

Now is the time to heal, regroup and eventually form another plan of attack!  I wish you the best.

[Krisosterous]

Thanks to you all for your words of encouragement.  Makes me feel better to know that there are others out there who know what I'm feeling.  DOn't even get me started on my doctor.  There has been so little followup during the Tx, and shoddy care.  I tried to switch halfway through, but couldn't get anyone to take me on.  Both said they would see me after I completed, so I'm looking for someone new.

The vision has not improved, but at least the bleeding has stopped.  I need to rebuild my strength and attitude before I consider retreating.    Any recommendations to help me accomplish that?  So many have gone before me with all of this,,, I'm sure you know what worked well for you.  

Thanks again for everything.  I will continue to check in here to follow all of your progress and learn of new developments.  Keep healing!

Kris

[JennyPenny]

I'm so sorry to her your news. I am a total non-responder so I can't even imagine the feeling of relapse. It must be just horrible. Did your docs tell you whether the eye problems were from interferon? I am wondering if they will allow you to retreat with interferon based treatments? Interferon knocks my neutrophils down to 0 and I am told that unless there are new drugs that have almost a 100% cure rate, my docs will not let me take a chance on interferon based treatment ever again.  

[Teufelhunden]

Bummer.  I relapsed 3 months after my 48 week journey but, life went on. I went to Duke for another opinion and the specialist told me I'd probably kick the bucket from old age before the Hep gets me, He told me the past 48 weeks might have lessened the virus but not enough to make a difference so he told me to go out and enjoy my long life...and thats what I'm doing.  Did I waste 48 weeks? I don't think so. I learned alot about myself, I learned not to take things to seriously, I learned to enjoy what God gave us in the way of flowers, nature, grandchildren,..and time.   I'm sorry to hear about your relapse and I'm sure your 66 weeks were hard but summer is almost here and before you know it it'll be time to make lemonade. So enjoy life, take it easy, build up your strength. There will be another time to slay the dragon.  Geno 1a also.
Teuf  

[jmjm530]

Sorry Kris.

As to next steps, first get yourself a liver specialist (hepatologist) at a different hospital from your treatment doctor so your entire case can be more objectively analyzed including what may have gone wrong with your treatment. It's important you see a hepatologist rather than a gastroenterologist. If your last biopsy isn't recent they might want another which is a good idea. Based on all that, they will probably tell you if you have time to wait or not. If you do there should be some very exciting drugs out of trial in 2011 such as Telaprevir. If you don't have time, they might be able to place you in a trial or treat you with some variation of the current drugs.

-- Jim

[merryBe]

I'm sorry also to hear of your relaspse...what an evil little bug this HCV is.

Jenny may have a point, the threat of blindness will cause most doctors to steer clear of the same drug for you.

Magnum is working on getting approved for "the compassionate use of teleprevir"
His recent thread in here expalins that process through the FDA and Vertex he may get approved to treat before it's release.

http://www.medhelp.org/posts/Hepatitis-C/Just-Spoke-To-Vertex/show/784679

Yet even there, you are still talking about needing some INF in the mix.




The most promising thing I've come across that might be doable is the new Inovio vaccine.

http://www.genetronics.com/products/chronvac-chepatitiscvirus.htm

They use a special electrolic process to infuse the vaccine, and claim that it knocks out 99% of the virus...
2 things though...one, it is still in phase 2 trials so won't be available for a while.
ywo, one would still have to treat after such a vaccine for a while to make sure and mop up that 1% of remaining virus, although that should allow for a greatly reduced amount of time and some dosage cutbacks as well
.
I have written to the doc in sweden running the  Inovio trials to find out where phase 3's will be held. It's rumored they will be at some Veteran hospitals and done through Merck stateside...
however I still have not heard back from them as to where these will be held.

again, sad for you...it's such a heart breaker....wish I could help more.

mb

[copyman]

Hi, sorry that you relapsed after hanging in there 66 weeks. That really takes a special person to endure these drugs that long. Anyone that can do that is a true hero in my eyes. Like the others have said you gave your liver a much needed break during treatment and there are new drugs coming. Regroup, get strong and live to fight another day.

Just curious about something, you said you had a 2 log drop at 12 weeks, were you tested after that? especially 24 weeks? You should have been tested at least every 12 weeks during TX and stopped if still detectable or break through. If this was not done then you can blame your doctor for your eye problems. theyt could have most likely been avoided. If he did not test after 12 weeks he should be sued for malpractice !!!!

Wishing you the best

[powerbuilt]

Very nicely said Teufelhunden, hang in there Chris, I give all the credit in the world for going that long ,you are one though hombre , life is precious , never look back like they say in golf if you shot a real bad hole, try and forget as soon as possible because it will affect all the other holes if you dont.....
keep looking ahead ,something will show up  

[Krisosterous]

thanks for all of the great advice.  Jim, I'm right with you on the hepatologist.  Still looking to see how far I have to drive to find one.  And copyman, I was tested through most of my Tx, and the virus remained undetectable throughout.  I cleared before 24 weeks, and remained UND through the rest of my tests, up through about 48 weeks.  I don't think I had a VL test after that.

And Teuf, I agree - it's time now  to enjoy the summer, get strong again, and keep my eyes and ears open.  At stage 3 grade 3, I don't have nearly the leeway you have, but I WILL take some time while I continue my research.  MerryBe, I shall start with your two ideas.  They both sound very interesting.

Thanks so much to all of you for taking the time, and giving your support and knowledge.  It means more than I can say.

Kris

[Magnum]

Obviously sorry for your predicament. I know the feeling all too well. There are several drugs being tested right now beside the current Protease Inhibitors, that will hopefully not require Interferon and Ribavirin...

Magnum,

[IMstacie]

This is so sad!  This entire post is sad! I'm so sorry you fought so hard with only a little gain.  I will pray that you are sucessful the next time.