Relapsed

[Diane1186]

Finished triple therapy (Incevik ) on July 4th.  Received a call today that I have relapsed, viral load is 2 million.  What a let down.  My hair has jjust stopped falling out....my brain fog was lifting.....and I actually feel good.  My insurance runs out in October......

Anyone know any new treatments for Geno1a with better odds?

[cindyh113]

I am sorry. I know what it is like to be a relapser. Did 48 relapsed at 3mo. and now working on triple TX. Week 13. I would look forward to the new drugs and have wondered if I shouldn't have waited. The incivek was no fun.
Hang in there and do not give up. Vitamins are a good idea. They helped me.  

[working dog]

i don't know how i missed this....diane...there is so much work going into cures for hep c now...and some on this forum really say on top of it ...hopefully they'll stay around with the needed info and direction to move ahead.......hang in there.... sorry to hear this..... good luck....billy

[melissa216]

So sorry to hear that. Im newly diagnosed and Ive been reading and reading and reading some more. I know that you get to svr one day! Your positive attitude will help! Hugs melissa

[angel216]

im so sorry to hear your news....hang in there...new drugs are on the way

[frijole]

diane -- I know the gamble well. You stopped at 36 because others in your office stopped there and had SVR?  Plural?  How many people in your office have Hep C?  I took that gamble too the first time I treated.  I knew I had to extend because I was not und at week 12 but I chose to go by a study by Drusano, stating that 36 weeks und should be adequate.  Since I was und at week 20, I did 56 weeks.  I should have used the Berg study that suggests 72 weeks.  Oh well.......

It looks like you did not have a week 4 test.  Is that a doctor error?

idyllic -- you are right, protocol for INC is if not UND at week 4, you must do 48 weeks.  You can armchair quarterback me all you want.  It takes a lot of us to stay on this course, and to keep abreast of the facts.  (I forget).

[Naya888]

Dear Diane,I am so  very sorry .I  am glad you feel pretty good  though, I hope your liver  got some break while on tx and your liver histology improved, I believe new Tx's are comming soon for your.Meanwhile take care of yoursef I wish you all the best.Stay well!

[jerialice]

hi diane- i relapsed twice- it is tough. after the second time, i was worn out and then had deaths in the family, and much more.

now i am going back in. you too will regroup, recoup, and prepare for battle again. all the advice to take care of your liver is so true. build yourself up with good diet, fluids, rest and faith.
then when you go back you will have plenty to bring to bear on the enemy.
praying for us all and you for peace in trial.
jerialice

[jerialice]

dee can you summarize the "reasons for failure" so we can apply them as we move forward?
relapsed twice!!!

thx

[PJ1966]

As with everyone, I'm so very sorry.  I'm new to the forum and start treatment next Wednesday so I'm hopeful.  I'm a relapser from the treatment back in 2003.  Hoping this one works.  The odds are in our favor but it's certainly not certain.  I'm 1a also so I'm hoping the 1a isn't a serious stumbling block.  I hear it is the most difficult to treat.
Good luck on your recovery.  I'll be interested in hearing how you're doing and everyone for that matter.  I'm so glad I found this site.  It is so very helpful to hear from everyone.   We're not alone and that helps.

[crossroadsec]

I'm so sorry.  I think we all prepare ourselves to hear that news. I don't really know what you're feeling, but I can identify. We all hold our breath waiting to hear. Your tx was not in vain.... Like others have stated, there has got to be a new interferon free trial available soon And those liver enzymes should be looking better. You've given your liver a break. Good luck as you keep an eye on the new rx coming out. Keep taking care of yourself. Karen :)

[Revalation]

You gave it your all.

If you hadn't had problems you would have completed 48 weeks.

There will be something else that will be effective for you. Don't worry.

I will be praying for you.

Reva

[zako7]

Sorry to hear about your relapse. You did your best. You fought hard. From the look of things, in the next three years with new drugs, you don't really need to fight as hard as you fought and you will be cured because the odds look very much better for everyone.

[Advocate1955]

My husband is in a similar situation, but he experienced a viral breakthrough during triple tx with Incivek at about week 24.  So far as we understand, the options right now are to 1) try to get into an interferon free trial, or 2) wait until the new all oral meds are available.  My husband's hepatologist is referring him for trials that are coming up at the University of Washington Harborview Medical Center, but we haven't heard anything specific yet.  His hepatologist thinks that the new all oral meds will be available by about the end of 2014, but as willbb said and history would show there is no way to know and new meds always seem to take longer than anticipated to go through the process.
Best wishes, and so sorry to hear about your relapse.
Advocate1955

[Dee1956]

I can't tell you enough how sorry I am.  This is devastating news
I have been through it know what it feels like
Many people told me to regroup, take it easy, get my ducks in a row and try again in 6 months to a year
Dr Dietrich said pretty much the same, he was very kind.
After my tx failed the first time I learned alot on why I may have relapsed.

There are some all orals in trials right now, sorry I have not read any replies, just your question so am just responding to your post.

Again, so sorry, hang in there help is coming.
Take care
Dee

[JasmineT]

That just stinks.   Glad you are handling it so well.  What a disappointment after coming so far. Terrible what the virus can persist through.  Hoping for an easier way for you and others in the future.

[yodennis]

  Indeed this is truly an emphatic forum with so many of us previous failures, on the newer triples, waiting to see if we'll have an SVR, reading stats, watching others, etc. Trying to discriminate amongst this constellation of question marks this disease imposes is mega-stressful sometimes. There is no way around it: to have defeated the virus temporarily and then have a relapse is a scary betrayal. And to be under the shadow of insurance loss is scary too!        I am cirrhotic and waiting for my 6 month post triple viral load with no insurance at the moment: From the heart: I'm sorry for your loss! d

[libzo2]

Dear Diane, How horrible for this to take place.  I am a 1b and relapsed at 3 mo out the first turn.  I wanted to add my instrument to the orchestra of players in this song of empathy and acknowledgement of your great effort; no sad violins but maybe a deep chello or two.  My heart goes out to you and your family.    

[Diane1186]

Thanks everyone.  I haven't given up.  I truly believe that a positive attitude is important and that there will be a new treatment someday.  All the support and information I have received from all of you was so important.  Hugs to you all.  

[flcyclist]

Very sorry to hear your news.   Take time to regroup, stay healthy and consider other options.  Perhaps there's an interferon-free trial available at a later date or you have the option to wait until the new meds are approved.  Best to you moving forward.

[Diane1186]

I did have an HGB issue and on procrit in Dec.  My HGB came back up, but had issues with skin problems, and low platelets. This was not the reason i stopped at 36 weeks.  There were others in the office that have stopped at 36 weeks with SVR.  I took the gamble, and lost...

[Diane1186]

I was virus free at 6 weeks of Incevick, and theoretically should have done 48 weeks.  My side effects of skin issues, and low platelets was a reason to stop at 36.  

[belle19]

diane,
i am so sorry to read your news.  i know you're devastated.  please take a deep breath and try to keep yourself healthy with good nutrition.  in time there will be some treatment that will be perfect for you.  i'm sending you hugs and a prayer.  best wishes.  belle

[pooh55811]

I am very sorry to hear that you relapsed. I know it must be devastating. Hang in there. Recuperate. Something will come along for you in the future.

[Idyllic]

I noticed the Det at week 32 but there was a post following it saying that it was a lab error. I was just trying to piece things together so I could understand and I thought the Incivek treatment rules indicate to treat 48 weeks if Det at week 4? Please understand I am not trying to 'Monday Morning Quarterback" or anything (Or is that "Armchair Quarterback" I probably should use neither phrase since I loathe football!!)