2 Years Later

[Magnum]

Hello

It's been two years since I stopped my third treatment and I just wanted others to know what' happening. In case you didn't know, I went through three treatments. The traditional, then Pegasys, then One shot per day for two months, along with Amantadine. Unfortunately for me, nothing worked.

However, I just wanted to add that I have not progressed at all. On the contrary, my ALT and AST numbers are lower than they've been in the past ten years. I don't know if I can attribute Sam-E to that or not. The doctor wants me to continue taking it.

I'm in stage 2 Fibrosis and have been for ten years. In July it will have been 5 years since I stopped drinking. The doctor seems to think that has a lot to do with not progressing. At any rate, a couple of notes: My very curly hair is now just wavy. The doctor said that is directly related to the treatment. The gaunt look on my face took nearly two years after treatment to go away and I now look normal.

I guess I'm posting this to give some of you an insight on what you may expect after stopping treatment. Naturally, everyone's different. My energy level appears to be at where it was before starting treatment. Another thing, my skin still has a splotchy look to it, especially in my arms. That is related to treatment, because I never had skin like that prior to treatment. So, in conclusion, you can expect to get back to 90% normal after you stop treatment, but it can be a slow process. Now, like some of you, I'm waiting for the Protease Inhibitor trials to begin. The doctor said we bought 2 years of time with treatment.

[Showboat]

That is a good idea.....I can just "see" you singing at the light.....maybe singing would have helped me the few times I just "sat" through a couple of green lights..in my tx trance.... that far away foggy feeling ????...(country roads, so no one blew their car horn at me.....  :>)

[MajNeni]

My favorite unloading is/has always been to sit in the car with the windows up and scream, shout, whatever.  Sing very loud, sometimes with the Hepsongs, too.  If I happened to be driving, or at a red light... I got a few weird looks... but that made me release even more... I even saw some cows fall over spontaneously.  It's good to wear cool sunglasses if you want to try this.
After this, I could always get on with it.
Maj Neni

[Showboat]

Good Morning Judi....it is now 12:45AM, and you are officially invited to my pity party.....we can "swim" in my flooded basement too......(lol)....the fun just never ends..hahahha.....anyone else is invited toooooooo!!!! (bring your own towel..... :>}

[hepcgetlost]

Hey couch and showboat...me too...I want to be invited to any pity party you're having...and chevy, your comments are always welcome. You've brightened more of my days than you could imagine. cuteous, you are so right about all the stuff we find here...not just good info. The chitchat is often the best thing at certain times...everyone, keep it coming. Love you all. Judi

[mikesimon]

Thank you so much for the encouraging words. It really means a lot to me. To answer your question about a 2 log drop my load went from 3.86 million IU/ML to 5920 IU/ML in 5 weeks which is >2log. At 11 weeks VL was 12 IU/ML. On a less sensitive test I would have been undetectable and I assume I was undetectable at either 12 or 13 weeks but I didn't test again until 18 weeks when I was undectable. I think these results are positive for my chances but other factors bridle my optimism somewhat. Your success, since you also relapsed previously, is more fuel for my optimism so I do appreciate your story. I'll keep you posted. Mike

[Indiana]

Hey Mag......It's GREAT to hear from you after such a long break. I was just starting to come here as you and Bartt were stepping back. I did watch you go through the end stages of that last round of tx. All I can say is WOW!
You know....you say that it failed....but I guess that depends on how you guage success. You did manage to hold back the progression.....but what you didn't see was the effect you had on Me...and others who watched you and listened to you fight your way through that last round. Your "Give your all" approach TOTALLY inspired me and took all my fear of my tx away. You and Bartt were my inspirations throughout my tx. I often used some of your words to try to inspire others and help them through this.
Since you have been off healing, I did 50 weeks of Peg/Intron (type 1B) and I am happy to report that I am CLEAR after my 1 year post tx PCR!. Much of my success I feel I owe to you 2 guys.
So now all I can say is "Thank You".
I wish you well on your next attempt after the new "Wonder Drugs" are found. I will be watching. I hope they don't have the sides that these current ones do......But just in case.....I'm saving a Noisy Dehumidifier here for you to take it out on. Hahahahahaha
Good Luck buddy...........

[couchpotato]

I never meant to suggest that ANYONE spends too much time here, you just keep on doing what you are doing. Actually, I have kinda dubbed you "the cheerleader" of the group as you are always there with a kind word, you lift us up when we are acting pitiful, you give us encouragement when we are fed up, you make us smile when we want to cry, and your overall attitude is one of genuine concern and thoughtfulness. I think everyone looks forward to getting your (((smiles))), (((hugs))) etc. and I thank you for all the time you share with us. Couch

[new-sojourn]

I cl'ed 2yrs ago almost to the day.  I know my health has improved, not gotten any worse, because i'm still alive today 30 mo after my liver failed.  I figure I've managed to halt and maybe reverse some of the damage.  Just knowing about the hep c allows one to make lifestyle changes for the better.  Any knowledge helps.  I, too, swear by SAM-e.  I'm always surprised more people aren't taking it.  Do you have a good, cheap source?  It is pricy.

[couchpotato]

I posted you yesterday under "transplants", guess you missed it. What is Sam-e?

[cuteus]

what is it they say?: one man's garbage is another man's treasure, it could translate here into; one person's chit chat is another person's lifeline.  
tolerance, patience and humor is what I wish to find here, not data input only.  

I know we can get frustrated, but can we keep the lashing out to a minimum, please? It may hinder those that are waffling about posting,  or keep those in need of some comfort from reaching for it.

[snook_man]

Sam-e is a wonder supplement..It increases the natural production of dopimen.. Which battles depression and acts as a mood leveler.. In a  trial study of Hep c patients with end stage liver disease, 47% prolonged the need for transplant, where the others needed them!! It was shown that it increased liver functions, a way of life for these patients..The recommended dose as per this study is 1200mg a day.. Now if you are paying for these, you will go broke.. I just purchased 30, 400 mg tabs for $43.. Try www.swansonvitamins.com, or www.puritanspride.com.. These are the best direct suppliers for supplements, and usually run sales for 80% off..This is when to buy..
As for Sam-e, my research shows direct link to actual documented progression with hep c.. Another excellent supplment that is also documented to aid with interferon treatment is NAC.. This is N- Acetyl Cysteine.. This is what they give people that come into Emergency room with drug overdoses, to protect the liver.. It is also a natural anti-oxidant that LIVER produces to stop cell detruction!! People such as ourselves need this, as we already have damage, and liver does not function as it should..
I am not a doctor, nor are any of these substances FDA approved to treat anything, but studies show that they help!!! Why not do everthing possible.. Nac is an amino acid produced by liver to make gsh..A combination of cell protecting anti-oxidants..
Next round of drugs for hep c, are still 3 to 4 years away..We must all do every possible thing to prolong are lives, or role over and do nothing!!! I personally must do everthing possible to survive!!! As all of you should too!!!

[ral]

I just know you are going to make it Mike just keep being patient and strong. You have been one of my big inspirations here

Bob L

[mikesimon]

Ty Bob. I'll give it my best. Mike

[Showboat]

I love reading your posts....I love you just the way you are...please do not ever change;;;;;;(I Am winking and giving you a big smile.....and I am showing lots of teeth...)  I have learned a great deal from you.....and some of your experiences really touch me and also make me feel "normal" (hahah my normalcy is debateable...lol)....I, too, give my heart out to those that have so many more sx and more serious conditions than myself.  I feel so lucky to "know" you all.

[BethUK]

Hi Magnum - I remember you, I was in the class of 2002 with you!  Im glad to hear you are keeping OK, and wish you all the best in your quest to get treated sucessfully.  
I'm feeling really good, the only lasting side effect from treatment is that I don't have HepC anymore!
Have a great summer!

[honey1616]

I wish I had some answers for you on all your questions about diet, herbs et...I just honestly don't know enough about that part of it and yes...this is a big concern for your hubby.. Hopefully someone will respond to your much needed questions on this subject that has either gone through it or is on special diet now!  You are not "invisible" and I'm so glad to see you posting more.  I know you stated at one time...you didn't want to take up thread space,,,LOL  Take it! Your words are just as important as everyone elses here!  Take Care!

[couchpotato]

Thanks, I know and realize that not everybody has every answer  and hey, wouldn't it be nice if we did?? I am at a loss for answers on a daily basis, I can't help a lot of the good people here, wish I could but we are struggling through this. Yeah, I don't want to waste threads on idle chit chat, it has it's place, but I think most people come here looking for advise, options and answers. Sometimes it gets disheartening when a person reaches out and doesn't get many reponses. I could be wrong, but I'm sure I'm not the only person who has felt this. Course, maybe I'm just in a pissy mood and having myself a good 'ol pity party!!!! waaa, waaa, waaa. THAT could be it too!!

[Showboat]

Hello..we have something in common... "pity parties" are part of my "social activities" too. (lol)  One of the wonderful gifts I receive from this site is that we all get a chance to unload when we need to....pity parties are allowed. :>)  I learn so much every day....from so many different sources....the med info that people supply, and, from the personal stories people share about their struggles and even the "humorous" moments of tx.  I would like to thank you for sharing your thoughts today too...I think many of us can relate to your words at times...... I am sending you a bunch of (((hugs))).......

[couchpotato]

Thanks for your information on Sam-e and NAC. I will check the net for sites and do further investigating on my own but appreciate your in-put. I don't know if I am just in a "mood" today but it boggles my mind that sometimes on this forum the most assinine comments and questions can illicit day long responses and then with other more relative questions (about hep c/ liver problems) can be completely ignored and passed over. Maybe some people just don't want to be that helpful and are only on here to make small talk and stroke their own egos?? Too bad really, it tends to make a person feel invisible at times.

[hepcgetlost]

I started coming to this forum about six months ago, when I began tx. I'm so glad you've checked in to let us know how you're doing. I'm on week 22/48 and just cleared, but wonder a lot about the possibility of relapsing. It's always good to hear the experiences and perspectives of our fellow warriors who are post-tx. You have a great attitude and I'm sure that in the end your dragon will be history. In the meantime, you've managed to keep things from getting worse...that's a victory right there! Please write again...Best wishes to you,
Judi

[MajNeni]

Hi, Magnum,
I'm glad you're holding your own.  This is one tough virus to beat.  Your day will come, though.  Best, Maj Neni

[Bartt]

Great to hear from you Mag. Too bad the treatment didn't work for you but then again, I believe it did! No progression. You have been one of the old timers on the site and have been an inspiration to me. You have your head screwed on right and you have very sound advice for the forum. I hit the site still now and then and it was a pleasure seeing your post. Take care.

Regards,
Barry

[Nann]

Hi, I remember your posts very well. I have been checking in here for three years.  Peginterferon and pegysas failed me but now there is going to be a try at gamma interferon and pegasys.  But I have not gotten sicker during the two years I have been on this stuff--just fatigue, dry skin and crabby sometimes. My blood count numbers have held. Thanks for dropping by--it is really good to hear from you.As they say, keep coming back.

[DoubleDose]

Your regime is the same as what I completed almost eight months ago.  I did 72 weeks, with 14 months of that period undetected.  Even at that, I was nervous upon finishing, having relapsed in previous treatment as well.  I was fully undetected at one month, three months and six months post-tx (the big SVR), and hopefully you will be the same.  Was your Log drop after 12 weeks greater than two logs?  Sounds like you cleared in about 4 months, which bodes well with 18 months total tx.  Your one month post-tx PCR will be a good indicator, giving you about 90% or better odds of SVR if it is undetected.  The three month post-tx PCR is almost as good an indicator as the six month test, using today's ultra-sensitive PCR tests.  We will all be pulling for you!!!!
You should feel pretty optomistic, knowing that you went above and beyond with your tx, which is just what I wanted to do during my 72 weeks.  It is comforting to know that you gave it your best, and set yourself up with a strong probability for success.  Let us know how things shake out.