Relapsed soon after 72 weeks on Pegasus

[nelson958]

Doctor  says wait a couple  years for new treatments to be approved. Any other ideas?  I'm really not the sit and wait type, and quite frankly this is a major heartbreak for me.
Thanks for any thoughts.

[comeagain]

I would like to ask you at what ponit( week ) did you reach UND and what tests( how sensetiv) were used?

ca

PS I´m with you in your sorrows I´m also a relapser.

[merryBe]

on man, I feel for you.....its so rare to even make it that far...and then to flop....grrr...life isn't fair sometimes.
the good news is at 2-3 you couuld treat again in 2010....and maybe with the new stuff you'll beat the odds as so many now are.  At least there's that.    Try to think of the year as a well earner rest from the toxins, do the liver lover stuff on Gaufs homepage, and just bide your time until the next war comes.  I hate to say that, but there are some warriors in here who have done 3-8 txs and finally made it...so there is still hope.

maryb

[zazza]

You were a perfect candidate for extended tx. So sorry it did not work for you. You sure did all you could.

[nelson958]

Thanks for your kind words. I cleared around week 16. My  vl at week 12 was around 900. I think my liver is in good shape so far. Biopsy before treatment was 2-3 I believe.

Thanks again frijole.

[frijole]

I too am sorry to read your news.  72 weeks is a long time.  Zazza said she sent you the Berg study so you were not clear at week 12, I assume. What was your vl at 12 and when did you clear?  Were you anemic?  What is the condition of your liver?  For some of us I fear no time is enough on current meds.  Hopefully our wait for the protease inhibitors will not be too long.

Try to heal and get back your strength.
All the best,
frijole

[nelson958]

Heartfelt thanks to all for your responses. It does help.  Thanks and
God bless, you all remain in my prayers.
Nelson

[Kristina538]

It was so brave of you to take the plunge and post the site with your incredibly gut wrenching news;  you have done everything to avoid such a result....

My doc was excited about new drugs, especially since the San Francisco conference and I hope you strengthen quickly to regather yourself and can look toward a shorter and easier tx with better statistical outcomes in the not too distant future.   International awareness of how many people have this illness is positive in that there is growing pressure on getting newer and better drugs through quickly as the HVC population grows.

These chemicals seem to be the only way to go to clear the virus,  but nutrition, supplements, exercise, mental and spiritual health, not to mention the myriad of alternative therapies all certainly have their place as an adjunct to tx, or as assistance to our liver and general well-being.   Sincere wishes for your voyage - I am praying for improvements in tx and outcomes, especially for those, like you, who have had the strength to do the long haul.

[evangelin]

Nelson,
I hated to hear this.  My husband gets his labs taken for his 24th week tomorrow.  This will decide whether or not he goes for 72 weeks.  This is his 3rd and so far most succesful attempt at tx. His viral load was 210 at week 20.  Would you mind telling me when you were first nondetectible?  By the way, Joe is taking Alinia along with Pegasys and Riba this time.  He never even had a 2 log drop by 12 weeks without the Alinia. It hasn't been a picnic though.

Dan's post encouraged me and I am printing a copy for my husband to read in case he isn't nondetectible at 24 weeks. Thanks for the pep talk Dan:>)

Don't give up. The better cure is coming.
Take care,
Ev

[danstewart1958]

Hey Nelson it aint over until the fat lady sings and I dont hear her singing yet.
What happens if someone knocks you down? You get back up. You did the right thing
you got in the ring and got knock down but you did not get knocked out. I am a non
responder. I have been on every inerferon treatment known to man since 1992 and it has not worked for me yet so what, tommorrow is another day this is just round 1. Have faith in GOD he has your back. No need to feel bad or sad rest up, lick your wounds and get your butt back out there and try again. I am about to go on treatment again for the 5th
time. Dont let this beat you....look the devil in the face and call him a LIAR! You will
have your day and it's coming soon. Praise GOD that you even made it through the treatment a lot of people drop out. I know you will prevail just keep your head up and keep trying. Now you are experienced enough to motivate the next person that fails.
Tell that person to keep trying and hold their headup....that is why these things happen
someone else will need you to help them when and if they fail...WE ALL ARE WITH YOU AND IN THIS TOGETHER!!!.......Dan

[PegOnPeg]

What everybody else said...*****, heartbreaking, wrong.

I wish you much luck in the future.
Peg**

[jankar]

I am sorry - but the new treatments look promising, I think there is hope always.  Science is really working hard on this disease and things have been getting better and better over the 10 years I have been watching the treatments. If the same thing happens to me, I will wait and go again when the treatments get better.  Such a big committment and a heartbreak.  Jankar

[CMcH]

Thats just wrong! To TX for so long and not be UND? Did your profile say you had some other autoimmune problems like RA or Lupus? Hopefully it gave your lover a break and perhaps the autoimmune sides will ease up off of TX.
There has to be something better coming up. This TX that kills everything in a scorch the earth policy seems so primitive and unreliable.
My heart goes out to you. Be good to yourself and give your body the break it needs.
Wishing you lots of love and strength,
Connie.

[zazza]

Oh no. This is terrible news. I remember you. I remember sending you the Berg study. I did not realize you decided to do the 72. I am so sorry and can only try to picture the heart ache you must be experiencing after all that time and effort. At least, to look on the bright side, as a relapser you have a good shot at success with telaprevir, but of course that does not take away the pain for now.

Hugs, Za

[smaug48]

That really, really stinks.  I agree with the others that you should wait for better drugs.

But that doesn't mean you can't try other things on your own - there's plenty of info on this forum about things you can do to possibly minimize fibrosis progression ("possibly" because much of it is not backed up with studies).

Best of luck to you

smaug

[Rockerforlife]

They are doing new trials all the time with Teleprevir and Boceperir...tell your doc you want in...BTW...what were yoyr stats?...like weight,,,did you take supplements while on tx...stuff like that

[charm27]

Sometimes we call hate the word Im sorry.
You gave it your best shot and hopefully better drugs will be here soon.
I pray for them everyday.
Be well.

Charm27

[meakea]

I am so sorry to hear this!  You gave it your all for 72 weeks and this just *****.  As others have said, give your body a much deserved rest from the TX and the new and better drugs will be here before you know it.  My best to you.

[Trinity4]

Meant that message Nelson.

[Trinity4]

My heart goes out to you.  I hate, hate, hate to hear that.  You gave it your all.  Let your body rest, and if you have time, wait for the new drugs.  
Best of luck
Trinity

[UK2008]

So sorry to hear that - it's tough to deal with. You've given it your best to get through 72 weeks of treatment.  As for 'other ideas' - I'm sure you'll know that Teleprevir looks very promising (and probably not too far off approval).  I've been in a 'non-responder' trial and was getting great results with it (unfortunately am in small minority who get allergic reaction and had to stop, but generally the stats look positive so far). My doctor recently came back from a HepC conference in San Francisco and, like yours, also told me there would be other good alternatives, possibly better targeted, within a few years - and unless level of liver damage was an issue, it would be ok to wait. Take good care of yourself.

[FlGuy]

That sux. Sorry to hear it. Be well.

[HCA]

I agree with your doctor.
There is not really anything else until protease inhibitors become availible.
You have done the most extreme protocol currently licensed.
You could possibly look at infergen which is a daily interferon that has been around for about nine years and has previously been a treatment of last resort, but it doesn't match up to the new tri-thrapy regimes.
You have almost certainly given your liver a valuable break by treating for so long.