Aa
Free at Last! Open thread
I took my first injection on 1/2/04, viral load 2.3 million. I finally got my PCR results from bloods drawn 8/12, and it was UNDETECTABLE!! Type 1a/b since 1970, cirrhosis found in biopsy in 1998. Progression was:
1/2 2,300,000
2/23 71,900
3/25 38,300
4/29 21,900
6/1 758
7/14 144
8/12 <5
It really seems surreal, I think I'm in shock. It's a little hard to connect, because I've been feeling so tired and pained. And of course my doc now wants me to hang in there for another year. I'm going to give it my best shot, since that is my best hope for SVR.
Showboat, I was really sorry to read about your post-tx PCR. You must be an incredibly strong person to have done this 3 times, and I will think of you and so many others here whenever I need inspiration over the next year.
Sorry to have used a new thread, but I admit I didn't want to bury this somewhere. Today I'm proud of myself!
dA
1/2 2,300,000
2/23 71,900
3/25 38,300
4/29 21,900
6/1 758
7/14 144
8/12 <5
It really seems surreal, I think I'm in shock. It's a little hard to connect, because I've been feeling so tired and pained. And of course my doc now wants me to hang in there for another year. I'm going to give it my best shot, since that is my best hope for SVR.
Showboat, I was really sorry to read about your post-tx PCR. You must be an incredibly strong person to have done this 3 times, and I will think of you and so many others here whenever I need inspiration over the next year.
Sorry to have used a new thread, but I admit I didn't want to bury this somewhere. Today I'm proud of myself!
dA
When I had to have my thyroid removed I had lumps on my neck I felt more than one, same place you are talking about "nodules".They removed the thyroid and I was good as new!
I'm holding up great, I'm nice and calm now. Still disappointed about the drug and dose he got but guess that is the way it was meant to be huh?
LOve, Sher
I'm holding up great, I'm nice and calm now. Still disappointed about the drug and dose he got but guess that is the way it was meant to be huh?
LOve, Sher
Silly Woman! Yes, I read AFTER I posted that he wasn't starting until this weekend.
I just e'd Honey, so I will post this part, ok?
My appointment went alot better than I expected. He started me on new meds that I only use once a day (which eliminates 16 puffs a day of one of my inhalers). Got my HCV tests done and now have to go back on Monday to my primary to have a lump in my throat examined. Hopefully, it's my thyroid...I already have a lump in my neck from that, but this new lump is on the inside of my throat. So, I'm hoping that the cancer hasn't come back. They found a growth on my vocal cords a few years ago and with everything else that was going on at the time, it just kinda got lost in the shuffle, so maybe that is what it is. Nothing to worry about. It's all fixable.
How you holding up?
Always,
Jamie
I just e'd Honey, so I will post this part, ok?
My appointment went alot better than I expected. He started me on new meds that I only use once a day (which eliminates 16 puffs a day of one of my inhalers). Got my HCV tests done and now have to go back on Monday to my primary to have a lump in my throat examined. Hopefully, it's my thyroid...I already have a lump in my neck from that, but this new lump is on the inside of my throat. So, I'm hoping that the cancer hasn't come back. They found a growth on my vocal cords a few years ago and with everything else that was going on at the time, it just kinda got lost in the shuffle, so maybe that is what it is. Nothing to worry about. It's all fixable.
How you holding up?
Always,
Jamie
HI JAMIE, He isn't starting until he returns from Louisiana. Tomorrow....and ummmm I think you have some things to tell me MISSY! I'll E you in a little while. Hugg
Sorry for the mix up. Done next week, how fantastic for you. Exciting but a bit scary too I imagine? You'll be done before you know it but in the meantime, I'm wishing you SVR and a total and complete recovery from tx sx.
Have a great weekend:).
Have a great weekend:).
Different Don. Still, thanks for the thoughts. I am done next week and keeping my fingers crossed.
Many, many congratulations, what great news "clear"!*! Another year of tx? Wow! You are a very brave and determined man. very best of luck to you..
Sorry, I can't tell you stage/grade info, as I'm afraid I would have to dig through a lot of old files to find my biopsy report from 1998 which has been in a box somewhere in the basement since I moved in 2001. I think it actually said fibrosis, but MRI reports since then say "the liver is cirrhotic."
As for the decision to treat or not, all I can say is that if there had been diagnosis/treatment available when I was 32, with the kind of success rate now being reported, I would have done it. And studies have shown that the older the infection, the more difficult it is to treat. I'm 55, infected since 1970. If I didn't think there was a chance of success, I wouldn't be doing this. From what you've said, I would think your husband's odds are better than mine. BUT...it is a big decision, and only you can make it. Sounds like you are on the right track, talking with each other, the doc, and looking for info on the web (and this is a great site for support and resource info). Whatever you decide, I wish you and your husband very very long, happy lives.
dA
As for the decision to treat or not, all I can say is that if there had been diagnosis/treatment available when I was 32, with the kind of success rate now being reported, I would have done it. And studies have shown that the older the infection, the more difficult it is to treat. I'm 55, infected since 1970. If I didn't think there was a chance of success, I wouldn't be doing this. From what you've said, I would think your husband's odds are better than mine. BUT...it is a big decision, and only you can make it. Sounds like you are on the right track, talking with each other, the doc, and looking for info on the web (and this is a great site for support and resource info). Whatever you decide, I wish you and your husband very very long, happy lives.
dA
my husband has hep c and we went through all the blood work and some high and some normal. the viral load was like yours 2 milion and he has stage 1 grade 1 and he also has genotype 1-1b. and now we have to take the peg/intron and rebetol. what stage and grade was your liver biopsy? the gastro also said that there was only a little bit of virus in his liver. my husband is 32 yrs old he has a whole life ahead of him. i want to know do u think he has a good chance of getting rid of the virus like you did. you give us hope and i hope you stay clean of the virus.
Hey Don, great news. Maybe you'll have a bit easier time now that you have some hard evidence there may be light at the end of this dark tunnel.
Here's a link to a new drug that just completed phase 1:
http://phx.corporate-ir.net/phoenix.zhtml?c=131556&p=irol-newsArticle&t=Regular&id=594696&
Mike
Here's a link to a new drug that just completed phase 1:
http://phx.corporate-ir.net/phoenix.zhtml?c=131556&p=irol-newsArticle&t=Regular&id=594696&
Mike
great news my brother i guess now you can sing "I'm free" from the top floor and have a glass of cranberry juice to celebrate real happy for you
Congratulations......what a wonderful feeling, ey??
You deserve to be proud....this can be a difficult endeavor and to clear is such a blessing.
You deserve to be proud....this can be a difficult endeavor and to clear is such a blessing.
Congratulations to you!!! I am extremely happy for you. I think extending is a great plan. I hope that you reach SVR. Thank you for your well wishes and thoughts to me. I will not give up my fight either!!! :>) May your extended year be sx free...or at the least, very minimal. Keep up the good fight.
Don,
Fantastic News! Please do follow your doctor's recommendation, and go the additional year. If you can stay undetected throughout the remainder of therapy, you have very high odds of getting the SVR. I was a 1-B, and had to do 72 weeks, at high dosages also, since I first went undetected at week 19, almost 5 months into tx. Your curve of viral decline is a little slower, and the extended tx is intended to get those remaining virions that continue to reproduce, as the overall number decline. Kind of like getting all the floating particles of dirt out of aquarium water, using a filter. It may look clean, but the minute amounts are there, for a long, long time. At some point in the process, you finally overtake the reproduction curve, and you get that last remaining virus particle. You CAN DO THIS!!!
And in the process, as mentionned above, you will also continue reversing the cirrhosis/fibrosis as you go. By the time you get your SVR, you will be ready to have a healthy life again.
My very best wishes to you, and continued strength during the remainder of tx. You will adjust to all of it, over time!!!
Fantastic News! Please do follow your doctor's recommendation, and go the additional year. If you can stay undetected throughout the remainder of therapy, you have very high odds of getting the SVR. I was a 1-B, and had to do 72 weeks, at high dosages also, since I first went undetected at week 19, almost 5 months into tx. Your curve of viral decline is a little slower, and the extended tx is intended to get those remaining virions that continue to reproduce, as the overall number decline. Kind of like getting all the floating particles of dirt out of aquarium water, using a filter. It may look clean, but the minute amounts are there, for a long, long time. At some point in the process, you finally overtake the reproduction curve, and you get that last remaining virus particle. You CAN DO THIS!!!
And in the process, as mentionned above, you will also continue reversing the cirrhosis/fibrosis as you go. By the time you get your SVR, you will be ready to have a healthy life again.
My very best wishes to you, and continued strength during the remainder of tx. You will adjust to all of it, over time!!!
Congratulations! I hope this news helps you to go forward through the next year. See you on the SVR bus.
Maj Neni
Maj Neni
WONDERFUL NEWS....... you deserve it! ! I also had to extend my tx. I'm 1a and did 56 weeks. I didn't clear at my 12 weeks but did clear the virus at my 16th week. OH, what a feeling.
Jump up on cloud 9 for awhile and just stay there as long as you want. Keep moving forward...you are winning. Ah yes, you are winning the battle. !!
~dtr.
Jump up on cloud 9 for awhile and just stay there as long as you want. Keep moving forward...you are winning. Ah yes, you are winning the battle. !!
~dtr.
ALLRIGHTY THEN!! AWSOME NEWS!! THATS THE KIND OF INSPIRATION WE ALL NEED HERE!
NO apology is ever necessary when we tell the others we are winning the war!
Your stats are good. I am VERY happy to see that your doc is paying attention and having you continue on past the "cookie cutter" 48 week mark. You were not clear at 12 or 24 weeks, so you need that extra TX time to be successful.
I'm thinkin of starting a special "tx extenders" section on the SVR bus for folks like you, Rev, Cuteus, and Mikesimon. Folks that REALLY extended. We need to keep an "eye" on you all. Hahahahahaha
Keep the faith baby!!! We're all here pullin for ya......
NO apology is ever necessary when we tell the others we are winning the war!
Your stats are good. I am VERY happy to see that your doc is paying attention and having you continue on past the "cookie cutter" 48 week mark. You were not clear at 12 or 24 weeks, so you need that extra TX time to be successful.
I'm thinkin of starting a special "tx extenders" section on the SVR bus for folks like you, Rev, Cuteus, and Mikesimon. Folks that REALLY extended. We need to keep an "eye" on you all. Hahahahahaha
Keep the faith baby!!! We're all here pullin for ya......
absolutely wonderful news...don't apoligise for starting a new thread for something so very important...YIPEEEEEE i say..celebrate celebrate.....i see gummie bears and pepsi....oh wait, thats my dinner!!!
hugs and well wishes
hugs and well wishes
Thanks Lou. 2 limes sounds a little scary, ha! Boy how times have changed.
As for your questions, my doc says Geno 1a, the transplant team says 1b, so take your pick. My diet has never been particularly healthy, and since I started tx I've lost 10 to 15 pounds (varies a bit week to week). And I'm a pretty good cook! Just not much appetite. I'm wary of supplements, because my blood counts are so screwy, I'm afraid I'll just make it worse (vitamin e/low platelets, eg). I do try to eat enough salad (my wife makes great salads) and veggies, not much red meat. I have forced myself to maintain an exercise regimen, crunches, push-ups, hand weights, and I live in a brownstone so I climb 3 flights of stairs many times a day, and get exhausted each time. Hmm, potato(e)s sound good.
dA
As for your questions, my doc says Geno 1a, the transplant team says 1b, so take your pick. My diet has never been particularly healthy, and since I started tx I've lost 10 to 15 pounds (varies a bit week to week). And I'm a pretty good cook! Just not much appetite. I'm wary of supplements, because my blood counts are so screwy, I'm afraid I'll just make it worse (vitamin e/low platelets, eg). I do try to eat enough salad (my wife makes great salads) and veggies, not much red meat. I have forced myself to maintain an exercise regimen, crunches, push-ups, hand weights, and I live in a brownstone so I climb 3 flights of stairs many times a day, and get exhausted each time. Hmm, potato(e)s sound good.
dA
That is <b>ABSOLUTELY GREAT NEWS!!! CONGRATULATIONS!!!</b>
Given that it has taken this long to reach clearance - and the negative SVR predictors going in of cirrhosis, high viral load and genotype 1 - I think your doc is right on the money about extending. Also, the extra time on the interferon could spell great relief for your liver - possibly halting or even reversing some progression.
Now, <b>ON TO SVR!!!</b>
TnHepGuy
Given that it has taken this long to reach clearance - and the negative SVR predictors going in of cirrhosis, high viral load and genotype 1 - I think your doc is right on the money about extending. Also, the extra time on the interferon could spell great relief for your liver - possibly halting or even reversing some progression.
Now, <b>ON TO SVR!!!</b>
TnHepGuy
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