3 month PCR

[Teufelhunden]

Finally got hold of my doctor yesterday . He said the results have been sitting on his desk a week and he's "perplexed" over the results. He said he's been "procrastinating" calling me. Two words I definately didn't want to hear. My 48 weeks ended Jun 8, 2007. Male, 54 yr old, Genotype 1a with a VL of 470,000, Stage 1. Interferon weekly and 1200 riba daily.  PCR done on week 13/14 showed below 50 and at 35 showed undetected. Thought I was home free. Latest blood work showed everything normal. RBC just a tad low. As of Friday, my VL is 54,000. What the hell happened? Is this a relapse? Have I just returned to square one?

[FloridaMouse]

[FloridaMouse]

Well ****.  Welcome to world of relapsers I'm afraid.  What the heck is going on this past month.  I'm so disgusted.  So may people seem to be relapsing.  It's way too sad.

I'm also a recent relapser and like you I did well at clearing on tx and my doc was stunned when my 6 mos. PCR showed I had relapsed.  I'm really sorry that you had to hear this.  I know it's hard and I know it's a shocker.  

Good luck to you.

Mouse
Genotype 1a, S3, G3
finished 48 wks of tx. 4/2007
Relapsed 9/2007

[wyntre9]

I am so sorry, teufel.

I will post some study links (as soon as i can find them) about the SOC that those who are 1A and NOT UND by week 12 but UND by week 24 benefit from extended 72 week TX.


SInce you don't know exactly when you became UND, or even if it was before week 24 as your post says it wasn't until week 35 that you had a PCR showing definitive UND, I hate to say it, but you don't even know if you were UND by week 24.

The rest of the SOC is that those who are NOT UND by week 24 should discontinue treatment.

Here are the names of some of the recent studies that support this;

Berg
Sanchez-Tapias
Drusano

i know how disappointed you must be.  i have to confess, if I finish 72 weeks and find out I'm not SVR . . . . i dunno. . . . it's really rough.

Please hang in there and perhaps if you either present the studies to your Dr. or maybe even consider changing Dr.'s . . . .

Hang in there, teuf,

wyntre

[jmjm530]

I posted to you on the other side. As stated there, it appears your doctor mismanaged things.

-- Jim

[Teufelhunden]

Thanks Mouse. Yeah, a shocker.  Ya just start to feel almost normal, still got the good feeling of ending treatment and your T-shirt made that says SVR, and the bottom drops out.  At least the T-shirt won't go out of style anytime soon. What are you going to do or is it still to early for any decisions?
Wyntre, thanks for the info. I remember your post in my early days when you mentioned extending tx.  My backside is sore from all the kicking I've done these past couple days. Disappointed? Yes. But also determined. I think for now I'll digest your information and give my body and soul a rest and start planning round 2. The last 48 weeks was one hellava practice run, wasn't it?  

[Myown]

Sorry to hear this. I don't know if you know that I too relapsed. You finished tx a week before me. I am geno 2b 24 weeks tx 0 damage RVR and yet still relapsed. Was UND 4 weeks post. I know exactly how you feel. What a pain in the neck this is. I am still grasping at straws trying to figure out what happened and getting tests to see whats what. We are all on a trolley track when it comes to tx. The only thing that they have "customizied" is giving us weight based dosages. I think that if they truly want to learn why some relapse and others SVR, they should do MAJOR blood work on us prior to tx and after....not just rbc, but hormone counts etc. Find out the common denominators in relapsers and svr's. There has to be common links with those who svr and those who relapse. For instance as I have said a zillion times on forum, my dhea is high - that can be indicative of insulin resistance - maybe that did it, but who knows. Each day I blame something else but I guess its just part of the normal 'grieving process.'

My VL was 87,000 when it came back. Today I have really bad numbness in my lips and tongue again. I thought that was gone, but its not, its back. I also have a red streak that is going up my arm and its not a scratch so I don't know what thats about. I never had that before. I'm sorry I tx at this point to tell you the truth. I sailed thru tx and now I have sx that I didn't have before or while on tx. With so many people relapsing I was starting to think maybe we all had a bad batch of meds, but I guess they were good because they sure caused post sx.

When you feel down and out, remember that you are not alone in this.There are alot of us and this year way too many for some reason.

Hang in there...

[FloridaMouse]

Hey Tuef,

Right now I'm literally fighting to get back on tx.  My problem is that my GI will not treat me unless I get the blessing of a major university medical center (Shands at the University of Florida) because I got Rheumatoid Arthritis from treatment. He's just really apprehensive about stirring the pot without the blessing of the powers to be.  My records have already been faxed to Shands and I'm just waiting for the appointment date.  

I want to get back on the poison ASAP because I have such bad liver damage and right now my VL is nice and low (111,000).

Again, way too many people reporting relapses in the past couple weeks.  Myown, my heart goes out to you as well.  

Don't give up people.  We can beat this beast.

Mouse
Genotype 1a, S3, G3
finished 48 wks of tx. 4/2007
Relapsed 9/2007

[Myown]

Thanks Mouse, my heart goes out to you also. I wish you the best with your next course. I know I am on a Cryoglobulins kick these days, but if you are able to schedule a cryo test while at Shands, you should maybe consider it. I say that because of the Rheumatoid Arhritus you developed while on tx - maybe there is a connection(?)

[Teufelhunden]

I'm sorry Myown. I didn't know. Jeez, our graduating class is going to hell in a hand basket. It's reassuring to know I'm in good company though. Wish none of us was but we'll make the best of it I'm sure. Take care and thanks.
Mouse, good luck on the next go around.  

[dperry10]

How depressing.   I cannot help but feel this has all been for nothing again.  With all the A1 relapses in the last month, not very encouraging.   I am sorry to hear this has happened to those that have responded, and anyone in the future.  What the heck is going on..

[Myown]

Don't let our relapsing make you think that you are going to relapse. Some people weren't RVR and yet are now SVR. I was RVR yet I am a relapser (I still find it hard to say that - so hard to digest).....so IMO everyone has a fair shot at SVR - don't let your geno type scare you and don't let not having RVR scare you.It looks good on paper but sometimes that's all its good for. There are some that didn't respond to tx quickly and I really didn't think they would SVR and yet they did. NYgirl is one of them. I used to feel bad cause she had such a hard time- wasn't RVR and it was kind of hard to believe she would svr, but thank God she did!! So everyone needs to know that you all have a chance to SVR even if you're not a geno 2 or a rapid responder. This disease is not just about what they have found in studies IMO.

I'm routing for you!!  I wish you the best!!!

[Dominic777]

I am sorry to hear of all the relapses. But it is apparently working for some people so don't give up hope yet. I got the call myself a couple of weeks ago. 3a/24wks...4wk pcr post tx 125k VL. Very dissapointed to say the least.

I called Shering-Plough's helpline yesterday because of abdominal and back pain. The nurse I spoke with was still beating the drum about how important the 12 pcr was.....she had never heard of a 4wk pcr..?????. I think a big part of the problem is that a lot of Dr's just go by the drug co's recommendations instead of doing the research themselves. If I decide to tx again I will screen the Dr's until I find one that is up on the latest studies and will use rescue drugs instead of cutting dosage when possible.

I wish you all the best,                                          

Dominic

[geterdone]

Sorry to hear of your relapse as well as everyone elses, this is so discouraging and don't know how you feel other than p*ssed off. I have tried to stay positive going through this TX but hearing of all these relapses I’m starting to wane just a little bit. Just got to drop back, heal the body, regroup and go for it again.

jasper

[Teufelhunden]

Stay the course jasper, and everyone else going through this. It's important. Read Myown's post. Sh*t happens...but not to everyone. Life is full of setbacks and this just happens to be one of them. If there's anything I learned out of this, it's to make myself as knowledgable as I can for the next go around. Too many things taken for granted the first time. This one was a practice run. Next one's for real!
Thanks to my friend from the Catskills who screwed my head on straight.

[ladybug52]

Sometimes I'm so stunned, I'm at a loss for words. This is one of those times. I read the original post on the other side, but I didn't know what to say. I kinda got the feeling that hindsight was 20-20, and I'm not criticizing anyone. I didn't realize that your pcr's were so spaced out. Darn, I wish there were a way to go back. I think while treating we're kinda spaced out and sometimes the obvious is there and we don't notice. (talking about myself here)
I would have just given bad advice anyhow, like quit if you feel like it......
Didn't you get real anemic on tx, or was that someone else at that time? It seems like you or someone's hgb got really low, transfusion level low....do you know what I'm talking about?
I'm awaiting my 6 month pcr, without much hope at this point. And please, you don't have to reassure me it'll be fine, you're the one going through sh*t right now.
I'm so glad you have a strong, brave attitude and friends who help you to think straight.
Take care, here's another hug, mine's a little bigger than Child's hug!
Bug

[shastri20032003]

Sorry about your relapse...somethimes the whole thing sucks
Wishing you the best if you plan to go for it again
Take care

[Teufelhunden]

Sometimes reassurance is all we got to hang on to, and the hugs help alot too!  People get so exhausted battling the dragon. To the point where they just want to give up. Just lay down and let the dragon consume us.  There's nothing left in us to continue the struggle and we think whats the use anyway. But there's a little spark in all of us. A little spark that makes us stand up and put that first foot forward, then the next, and again. A little spark that doesn't let us quit that easy. A little spark that pushes us forward, urging us on, making us stay focused. Yeah shastri, it does suck but what else is there to do but put that foot forward again. You guys are the spark. Thanks.

[wyntre9]

What the heck doya mean you're awaiting your 6 month PCR without much HOPE?????

That sure doesn't sound like you!

wyntre

[shastri20032003]

Bug.......I will do the bale bale again I am sure once you get your 6 month PCR...so dont think negatively!!!
HUG
(A hug a day keeps the virus away....)

[ladybug52]

Teuf: I like the reference to the spark in all of us. You're right...the spark becomes a flame and ignites the fire within us to keep fighting.
Wyn: So much happening in life lately, (mine and others) I guess I was feeling a little down. I take that back! I didn't mean it, please forget what I just said. I take it back, I'm sorry, I must have been out of my head......:) (Sandy Posey right?)
Child: I was hoping you would read about my big hugs! Here's one for you too:)
Shastri: I am not going to think negatively! Well, I'm not anymore. Teuf is right, you guys are the spark, and the hugs are better than apples.
Hugs to all, bug hugs are big hugs!
Me