Well it doesn't work for me...bummer

Question

Oh well, it was just a lost year of suffering for nothing. I relapsed at 1 month post treatment with a level of 310,000. I am now a lot more interested in the new drug therapies. The nurse said that we will repeat the pcr test to check for false positive. It is what it is and life goes on. I have done everything that I have control over, including 4 years and for months of treatment and I cannot worry about that which is out if my control. Maybe I'll go for the treatment endurance record and leave it as my legacy. Thanks to all, I'll certainly be around to tell everyone about how well the new drugs work...Mark

belle19 · Answer

mark...so sorry to hear that you relapsed.  maybe in the future you'll have a better outcome.  best wishes.  belle

uncledudeness · Answer

good for you that's the spirit...we live on to fight another day....i hate that saying but it's so true..good luck to you in the fight.

maybe368 · Answer

Just wanted to report in so that no one feels like I used this forum without buying dinner at least. I am now almost 2 months post treatment and I feel GREAT, both physically and mentally. I felt like someone died for about 5 minutes, but I got over it. With the exception of losing 5 teeth and a few scars from scratching, I am back 100%. There is life after treatment, even if it fails. Chin up everyone and hang in there. I am in Mexico right now and construction on my new house is moving along very good. I might come back to the good ole USA, if the dumb politicians can get their act together, doubtful at best, so hasta la vista. Kidding of course...Mark

maybe368 · Answer

Thanks for the reply. I have decided that it doesn't really matter what my stage of fibrosis is right now, because either way, nothing really changes. I do not have any signs of cirrhosis and I am not going to worry about it, that ruins your life I am already a patient at a transplant facility and my diet and workout routines are good. There is no more for me to do until the new drugs come out, regardless of when that is...Mark

Advocate1955 · Answer

Sorry, I need to correct the dates on my post above.  The triple therapies became approved in May 2011, and I think we were all hearing they would be approved back in 2009.
The years kind of blur together after awhile.
My error.
Advocate1955

Advocate1955 · Answer

Mark,
Just an FYI: 
So far as I know, neither an ultrasound or a CT scan can really stage degree of liver fibrosis.
Also, in 2010 we were all told that the triple therapies would be approved and available by the end of that year or early the following year, but they did not actually get approved and were not actually available until May of 2012.
Advocate1955

maybe368 · Answer

Pooh. I want to clear this up. My doc ordered a ct scan of the liver in November, but the insurance company would not pay. We settled on an ultra sound in December, which showed no signs of cancer or cirrhosis. This morning I talked to the nurse again and asked for a ct scan or biopsy to determine fibrosis level. When she called back, she said that the doc said that it wasn't necessary, partially because 1 or more of the new drugs are expected to be approved in early 2014 and I will be able to treat again (lucky me).After some thought, this sounds reasonable, but if these are not approved as said, I will definitely push for one in early 2014...Mark

uncledudeness · Answer

very sorry to hear that you relapsed. i found out too a month after treatment and i was crushed for  a while. but i got over it and concentrated on getting healthy again and enjoying feeling good. i am now at 25/48 of round 2....it is what it is and we find a way to move forward....be thankful that the new drugs are right around the corner from you.......save some for me cuz i think i might need them.....but ya never know with this stuff...be strong and move forward.

good luck

Bill200 · Answer

Mark, my condolences.  I suppose you and you're liver are in good enough shape to make it until the end of next year when almost certainly new drugs will become available.

I'm in my 4th treatment as well and went Undetectable about the 6th week.  I'm in my 10th month now and posts like yours send send a chill up my back.  What is your genotype (1a or 1b)?

My doctor is considering leaving me on for 72 weeks.  I'm pretty much up for that.  Oddly enough the longer I'm on this treatment the better I feel.  The day after my shot I feel pretty good, maybe, slowed down a step or two.  I have to take Neupogen weekly or every other week and that stuff makes me feel a lot worse than INF but only for 24 hours so it's a predictable start and stop which is good.

I would rather be on the treatment than having high alt/ast and VL.  So I'm pretty much in a quandary.  I think I will go for the 72 as I don't have as much leeway when the virus is present.  My liver was degrading rapidly.

Mark I feel for you.  It is well I don't need to describe it but I think you'll do fine since you're in good shape.  The new drugs are coming.  I remember waiting on Incivek for years and years.  Now tons of new drugs are being tested and coming fast in the pipeline.  Best of luck sir.

-David

Advocate1955 · Answer

Mark, I'm sorry to hear about your relapse. Mu husband had a viral breakthrough while on triple therapy with Incivek (his third treatment). We are in the same boat as you, watchful waiting.
Advocate1955

maybe368 · Answer

Pooh, in 2007, my last biopsy, my fibrosis was 3 on a 6 scale that the center was using, which would be a 2 on a 4 scale. He explained it, but it was a while ago. I insisted on a cat scan when the nurse called with the bad news. She has not gotten back yet. To everyone, I really appreciate the empathy. I am a pretty optimistic guy, who's mantra is "it's gonna take a lot more than death to kill me". I was at a party when I was treating my cancer and everyone that got close to me suddenly looked like they were at a funeral. I said the mantra and, all of a sudden, the funeral was over Any talk of funeral plans for me is premature. I am going to carry on and wait for the new options, then bite the bullet and treat again.You guys helped me a lot, and even though it results in a dry run, it was worth the try...no regrets...Mark

pooh55811 · Answer

Mark, I am curious what your fibrosis stage is. I am hoping it is a low stage, if you have any damage at all.

purplecat · Answer

So sorry. I'm also someone who relapsed.  All I can say is keep on running.  I've started running and did 6 miles yesterday.  It's great therapy and you will be back to fight another day.

Dannyboi7 · Answer

Big bummer,sorry to hear that."It's not over until until the fat lady sings".I don't hear her singing.A better day is coming for you.


All the best to you 

Dannyboi7

can-do-man · Answer

Sorry Mark, I know that feeling of relapse and there is nothing good about it. Not sure the suffering was for nothing, for one thing you proved how tough you are and soon you will battle this again and come out on top.

All the best guy, don't give in...........

pooh55811 · Answer

Mark, I am very sorry to hear this news. I know it is devastating. Hopefully, the positive is a lab error. I empathize. You have worked so hard for a very long time to rid yourself of this virus. Try to recuperate and heal. There will be something in the future that will work for you. I wish you the very best.

rivll · Answer

I am so very sorry. You truly have done everything possible and I have tremendous admiration for your fortitude. 
Yes, the new drugs will do the job. In the meantime, continue to take good care and please stay in touch. Prayers are with you.

Well it doesn't work for me...bummer

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