I am not cured of the virus, but those of you who know me know that I have attempted treatment four times. I just got my first biopsy in seven years. I have regressed two grades and a stage and a half from treatment. This was not the news I was expecting. I am posting in all of the communities in which I have been involved, so I hope you don't mind if I just leave a URL to the details. Some of you here have been my friends for a very long time and I miss you guys. Apparently, there IS such a thing as a histological responder.
What fantastic news!! That is incredible, I am so happy for you. After all you have been through, getting such positive news must feel great! It is very encouraging to me! Thanks for making my day! Your site has been invaluable to me during my treatment. Thanks you so very much for your great site and funny take on things, it has pulled me out of the blues many times this past year.
Damn, that is extremely comforting news for those in which TX does not provide an SVR...
So what plans you have for future tx? What kind of mad scientist brew are you compiling now?
One of my Dr's at the UM actually went as far as stating that the inteferon itself uses the collagen in the liver scar tissue as a catalyst.. That it feeds off it.
great news man, hope you continue with the trend!!
The last time you and I spoke it was about writing and you trying maintenance. So I'm assuming maintenance helped with your liver buffness, this is wonderful news to me, I begin maintenance in about two weeks, and the cherry on top is to hear how well you are doing.
The girl with your favorite girl's name of all time,
I hope today is a bit better. I know how devastating the news is, once your mourning phase eases I hope you can remain positive. You will find a new doctor or a new avenue to take. Don't let this virus "win" by keeping you down. You are still recovering from treatment! Hang in there, you have such a positive spirit and always offer people hope, which is what I offer you now. Keep that "you can do it" spirit up for yourself that you always offer to others. This is just a bump in the road. Wishing you the best.
THanks for posting that Miles. Congratulations - such great encouraging news.
Snook: Looking into the inti-fibrosing proprties on INF, I found <a href'"http://www.urologyhealth.org/adult/index.cfm?cat=11&topic=50">this tidbit:</a>.
<i>Interferon: The use of these naturally-occurring antiviral, antiproliferative and anti-tumorigenic glycoproteins to treat Peyronie's disease was born out of experiments demonstrating the antifibrotic effect on skin cells of two different disorders
hey, lotsa stuff to like about your site, great info, and it's AMUSING! gotta have amusing, or this stuff is a tad depressing...and now you give us this wonderful news!!! this will cheer up a great many people who have done multiple treatments and not SVRed...bully for you!!! this is great...
And I've always liked your name, very impressive....
Thanks, I needed to hear that and hope this feeling leaves me soon. I know I need a new plan but the problem as my dr pointed out that doing tx longer for me is not an option with my HGB so low. Even now my HGB is 10.8, 3 months post. I am redoing the PCR, he already mailed it to me. Now the question is where to go? I've always went to Quest.
Great news. I did not know that it would help regress the grades. I thought that would only happen if you stayed SVR. Oh that gives us all a chance. Are you going to try one of the clinical trials comming up?
Great news..............how did the biopsy go? I am sure "they" will want me to get another biopsy at some point in future, especially if i go into some trial. I went the 48 weeks TX with about 90 weeks of maintenance.............or at least it will be about 90 weeks when I finish in 3 weeks.
Congratulations on your encouraging biopsy results!
I've thrown around the idea myself of more frequent VL testing with the intent of jumping into treatment at the bottom of the curve. Definitely does sound like a plan, however, given your past experience with Peg, I would think you might be waiting until next year to take a peek at SVR data from the Vertex trials.
Nice Blog BTW and regarding your "lost" novel, you might want to contact Drivesavers. http://www.drivesavers.com/enterprise_solutions/index.html
They can literally -- and have -- retrieve data off a drive submerged under water. They bailed me out once when the local computer store told me all was lost. Somewhat pricey but maybe worth a call.
Thanks to everyone for your lovely, supportive responses. It's great to "see" you all, and for those of you who have never visited my website before now, thank you so much for taking the time to read.
My biopsy report is somewhat of a miracle - there's no doubt about that. My doctor was shocked. He and I are close, so even though he tried his best NOT to leave a message on my service (confidentiality), he was like, "I got your biopsy report. Call me." Then he was like, "Okay, it's VERY good news." Then he said, "Look, I just talked to the pathologist at the hospital. This is what he said..."
So I went by to see Dr. Liverman yesterday and I saw him only for a minute, but he was clearly excited about the results, and I'll be seeing him soon so we can discuss the implications for future treatment. He's got some stuff up his sleeve that I really cannot share yet, but I've always beleived the answers were right in front of us.
So to all of you who have done major treatment and failed to clear, hopefully IFN has done you some good.
Health and blessings to you all.
BTW, yes "Jackie" is my favorite female name ever. My second favorite is "Natalie." I used them both in my first novel.
I know it is slow, slower than we would like! But it IS coming up and you are very much still in the recovery phase. I bet you see it inch up each time you check. It WILL stabilize and in the meantime you can forget it and enjoy you life, your wife and your tx free life! I would think with Thal it might take awhile but you will get that Hgb back up. Your damage isnt too bad, you can reconoiter. I bet your doctor will discuss what to do whe your Hgb is better. He was willig to go where others weren't before, he is just being safe and watching out for you. If he doesn't work out you will find a doctor who will. Try not to let despair win. This is when our optimism is put to the test. You have pulled me ( and many others) up when we needed it, I know it is hard to apply that to ourselves. Do something nice for yourself, maybe plan a trip or buy that item you have been wanting.
Fibrosis progression from HCV is nonlinear..There is no table or rule of thumb to predict rate of progression between stages. It might take one person 7-10 years to go from stage 1 to stage 2, then that same person might progress from stage 2 to stage 4 within 10..
One of my DR's stated the exact same thing Rev's Dr stated, that when a person is at stage 3, the median time for progression to stage 4(cirrhosis), is 18 months.. Once things start backing up, and damage is severely effecting function, progression advances rapidly. Of course that would only be relevant to someone not treating, etc.
I have been reading at your site on and off for several years.
This looks to me to be the best news you have posted for some time...big congrats.
I stayed in touch with somebody who doesn't come by here very often, southernboy. He is on his 5th try, but inspite of years on tx keeps progressing, now beginning stage four.
His ultra aggressive team of doctors give him every chance to try new things.
He is on double dose Peg, 1200mg Riba, and the latest cry: Lescol added to the mix. This statin got great reviews from Japan as a
Hep c killer in conjunction with Interferon.
Next week is his first PCR, after having worked himself up to 80mg.
So far he has never gotten undetected.
This thread tells me what a **** shoot we're all on. Way to go Miles. You have done things with tx that others only think about. You're past luck my friend. Can't wait to get back on your blog. Be well.
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