Iam1a, Stage2, Grade 1-2. I was in a 48 week arm. The first 24 weeks I took the standard treatment as well as the Telaprevir. The last 24 weeks have been standard treatment only.

They did not allow rescue drugs in the Prove 3 trial and I became anemic real quick...just like the last time I treated. Since Procrit wasn't an option they had to dose reduce/discontinue my Riba for most of the trial. I was only on full dose Riba for a few of the 48 weeks. It's been shown that Riba is a necessary part of the cocktail so I was VERY nervous. I wasn't able to get any VL results until my 24 week results. At that time I found out that I went from 12,500,000 on my start date to <30 by week 4! The first time I treated with SOC I didn't have a 2 log drop by week 13 and stopped. At that time I started with a much lower VL of 2,380,000. That just give's you an idea of how powerful these PI's are.

Vertex is continuing trails with the Telaprevir as well as 2 other PI's.

Vertex has submitted some late extracts regarding Prove 3 preliminary results to be presented at the EASL meeting in April. I have a feeling it's going to be more great news from Vertex.

I learned everything I needed to get me through the past 48 weeks right here on J&F and will always be grateful for this site and the people here.

I owe Karen a huge debt of gratitude. She has been there for me every day and when I didn't feel like talking to ANYONE, Karen was the exception. Thank you my friend. Now, we need to get you on a PI so we can start planning that trip!

A friend of mine has declared Thursday as "All bad things gone and only good things to come,day!";-)

Thanks again to everyone for the well wishes and hope to start posting again as my system starts to clear.

If anyone has any questions about the Prove 3 trail feel free to email me through my profile.

BTW, I LOVE VERTEX!!!

Denise...next stop SVR...

UPDATE April 30th 08

I just got the news today that my 4 week post VL is UD!! No Virus.

I wish they could speed things up so these PI's would become available for everyone.

I feel fantastic! My energy level is higher than it's been in years. The only leftover sx of treatment is a little brain fog....things like forgetting what I'm talking about mid-sentence and turning on my left signal to turn right :-) Other than that, I feel great!

SVR party in September!!!!

Update June 26th

Hi Everybody!

I got the news today that 12 weeks after my treatment in the Vertex Prove 3 trial ended I am still UNDETECTED!! Yippee!!!!!!! I return for my 24 week post treatment labs on Sept. 12.

I have had an amazing recovery from treatment. I feel great! I pop out of bed early every morning like I have a spring in me. I'm ready to go, go, go! I'm sleeping better than I have in years.

I wish they would hurry up and get these PI's on the market so that everyone can have access to them.

The next time I post my labs I am planning to post a big SVR. It's almost party time ;-)

Denise

The whole story

Update Sep 20th 2008 Denise is SVR....she cleared the virus and remained clear

six months after treatment.... SHE DID IT !!!!

OMG!! I can't believe I am actually typing this!! WOO HOO!!!!!!!!

I'll post more when my feet hit the ground!!!!!!

Love,

Denise, SVR ;-)

PS: Thank you Vertex!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

READ THE GOOD NEWS

Update Aug 27 08

HI all,

Just want to let you all know that my 4 wk post tx labs still UD. I am in the Schering trial [boceprevir] .

Yippee!!

Terry

Hey Guys,

Just want to let everyone know another ones bit the dust. Post 6 mth trial results UNDETECTED!!!! Wohoo! I signed up for a follow up trial to test VL for the next 2 yrs every 3 mths

I would definitely recommend anyone to get in this trial for those of you out there questioning it.

Thanks again all of you for all of the wonderful support

I will be praying for all of you

Love

Terry

Link To Posts From Terry on Our Message Boards

Schering PI Trial Thread Started in Sept 2007 click here: 37092.1 : Terry Clear at four months post treatment(4 months after finishing treatment) Apr 18th 2008 39539.1 In the Schering PI trial [boceprevir] Udate July 28 I have my 6 mth follow up next week and will let everyone know results 40588.1

TERRY DID IT SHE IS SVR YES ! 40788.1

Mary

SVR 2008 Albuferon Study Combined with Ribavirin

I am a 1a, stage0/grade1-2 and in a 48wk albuferon study combined with ribavirin. At week 36 as of April 17th Starting Treatment? Advise from Mary 39840.11

June 25th 40313.1 The riba has been reduced twice. At wk 24 it was reduced from 1000 to 800 and at wk 41 down to 600 because of anemia. My hemoglobin is 9.9 right now and my study does not allow blood boosters, so if it drops anymore I will be taken off the riba.

Update July 3 40380.1 At 6:58 this morning I took my last shot!!!!!!!!!!!

Thanks to all for your support.

I've been in the Albuferon study and have 2wks left of riba since my shots are 2wks apart. I have had an easy time with the Albuferon at half the shots of standard tx. I think it's slotted to be available 2010.

I'm so happy right now!!! Thank you all!!!!

Mary

39726.1

Geno 1 Treated Twice

I am undetected as of my 6 month blood work!!!!!

I am a 1a which is the hardest for svr and this was my 2nd treatment as many of you already know. I cannot begin to express the joy I feel right now. I can't get this "grin"off my face. I have been truly blessed. And.... you have to know that having you all here for me through all of my "ups and downs" has been a blessing as well. You are my friends but most important you are my "family". You gave me so much love, caring and support. I am truly honored to be a part of this special room.

Now excuse me I have to go and do a happy dance with my dog! lol

Many hugs to you all my dear dear friends,

Denise

Geno 1 "quasi" species

I found out today that my PCR shows I'm still undetectable. My Dr. used the word Cured! I made him repeat that twice. lol. Everyone here has been so supportive that I just want to Thank-you. It seems like a lot of people have been coming in undectectable lately. I hope it is a trend that continues!! I would also like to say that I have heard a lot of people say geno 1b is the hardest to beat.I had geno 1 "quasi" species. Apparently that is a mix of more that one(maybe more) sub-species. I haven't heard anyone else characterized this way, but at least we know even a combo of a&b can be wiped out.

Annabell

Bill first update waiting for 6month pcr

Howdy Friends, Well after 52 weeks the day finally arrived. I did my last shot of Peg-intron friday. Last Riba was sunday. Doc kept me on the Procrit for the next couple of weeks to get the blood back up.

It has been a VERY hard treatment, but with all of the support from all of you, it was doable. I am hoping that it will not take to long before I start feeling human again.

I was 1a with a VL of 2.5 mil. I had a 2 log drop in the first month and was UD the second month of treatment. Had to go on Procrit and happy pills, but it really helped!!

For any of you that are just starting treatment, listen to all of the GREAT people here. It will really help. The Dragon can be beat.

I go back in 6 months for labs. If everything goes right I am hoping to be SVR !!!!

I thank God for all of you !!!! I could not have done this without you. I will still be here on the site, and will always help if I can.

Bill

geno 3

Hi all, well guess what...just received test results after 6 months of treatment (geno 3) and still undetectable!!! (fireworks)

Ast 22, Alt 14,

and all of you were my strength during the treatment. My hair did begin to thin, but is growing back :) Life is good! I was one of the lucky ones; the side effects could have been a lot worse. I teach and did not miss one day in my classroom.

God bless you all! Marianne

Genotype 1a.

Hello all. Just wanted to share that I got my 18 months post tx results (did 6 mo post and then 1 yr post that) and I am still undectable! Just to give hope for those fighting this nasty disease and tx. Hang in there! You CAN do it.

Tx was very rough for me. Being a stage 1 Grade one when starting, not sure if I would have treated if I had to do it over again. But, then again, the earlier in the disease you treat the better your chances of kicking butt.

It was somewhat of a tradeoff though I am on Anti depressants, when I try to get off I suffer from anxiety and depression like I never had before. I am on Thyroid meds from now on. My stamina and mental clarity are not the same as pre tx.

BUT, I don't have to worry about that nasty virus eating my liver any longer. What a relief!

God Bless you all.

Scat

geno type 1A

Some of you may have read some of my posts in the past. I had geno type 1A stage 3.5 grade 4. Start tx with a VL 0f 7,400,000 IU/ML. I enrolled in the Schering Plough Protease Inhibitor clinical trial and got into control arm 2. This arm was a 6 months tx using scherings sch503034 Protease Inhibitor, Pegintron, and Riba. I cleared after 2 weeks on tx and was clear until completion. Now 6 months post tx I'm still clear and SVR!!!!!!!

I'm a dancing fool.

Just had to let everyone know!

God bless everyone.

Doug

Infergen 22159.48

To anyone who is following infergen tx's and others who are in it now...
Get, Cbert and others
I just got my call this morning from the nurse (Martha) on 12th wk. pcr results.
4,416 vl 12th wk 136,452 vl 4th wk. 3,148,230 vl starting

11.1 hemoglobin came up alittle
3.6 RBC
1.86 WBC
1.10 Neutrophils
57 ALT*
50 AST*

Dr. Reindollar since the 7th wk. or so has felt that my immune system has been fighting along with the infergen tx. He says that was reflected with WBC and neutrophils going up. I just listen, a few more weeks and the Liver panel is going up. He said this is not unusual. Thats the input I have had on the liver enzymes**. They have been going up slightly since week 7.

I'll be honest I was hoping to hear a lower viral load but it is what it is. I am thankful to be where I am but hoped to be lower. My ribarvin was reduced since the 7th wk. I am at 600 mg. started at 1000mg. and I feel this is affecting the viral load getting clear.

The sides are still about the same, I have weakness, mainly tiredness and just rest to get thru it. I try to do things when I am able. I am amazed at the gentlemen who are working and mainting their careers while in this tx. My hat is off to you.

Hope Get and Cbert are doing well....Anyone else out there who is starting or looking at this tx let us know how you are doing...

Peace and may we all get the results to succeed in this tx!!!!
HepCfree
Jane

Pulled Off Treatment

Haven't been in touch for a few weeks...made it to wk 29. At wk 24 viral load had dropped to <615 and my blood crashed.
My Dr. with me being in the trial had to pull the meds for a week.
WBC, neutrophils, Hemoglobin everything was at crictical ranges. My Dr.tried to get modified dosing going but after 4days. The pharmacy Drs. felt I was to unstable and in critical ranges.
I was off meds for 1 week and came out of the trial, and my Dr. took the case in under him for a private treatment.
They ran (Intermune Pharm.co.) all the labs again cause I was coming out of their trial. My Dr. told me on our last appt. The pcr/ viral load had to be close to the 615.
I think you know the next part, pcr came back at 39,000 copies. It was over. It was laying low but not going into remission.
We would have not tested for another 12 wks. out...its better that this revealed itself now.

I don't post much, but those times you guys gave great info and help. Got my 6 month post TX result back Friday and PCR QL RNA = "Negative" !!!!

For Thanksgiving here in U.S., this is the greatest news - and blessing. For all you others struggling to continue - KEEP THE STRENGTH - I was so close to stopping TX but family, friends and forums like this one REALLY did make me push on.

Some side effects still a bummer, but liver is showing significant signs of recovering. Will never be "healthy", but PegIntron,Riba just may have added years to my life.

Thanks again for the support. I am cheering you others on every day.

God bless!

2007--

Six months post tx my test came back CLEAR!!

I'm still dealing with "re-entry." I think my values have shifted: I really want to do the things I love to do.

I keep having flashbacks about last year when I was on tx (riba & peg). I hope I never have to do that again!! Those of you on tx now have my warmest wishes for healing.

Thanks for all your support, folks.

Warmly,
Tavy

UDATED 2008

Hi Everyone

I got the good news -- I've been clear for a year now. I finished treatment one year ago.

I feel better than I have for about thirty years.

I remember how I felt during tx -- the main thing is to just keep on. I mostly didn't have the energy to go to my computer, but when I did I always found comfort at this site.

Thank you all.

Love, Tavy

SVR May 08 Geno 1

Dan

After 48 weeks of tx at maximum dosage for both INF and ribavirin, and after 6 months of starting to feel better than I have in more years than I can remember, I am very grateful to announce the following results;

HCV RNA = UD

ALT = 20

AST = 24

WBC\RBC\HGB and platelets all within normal range

This dragon came to be inside me in 1971 and as of 11 May 2008 this dragon is dead

Dear Friends,

Today, one year and six days (but who's counting.....................LOL..........) after my last riba pills, I got my latest labs: NO HCV DETECTED!!!!!

And, my ALT/AST are both in the teens, where they have been since about week 6.

This place remains home for me, and I will always come back (okay, I haven't even really left yet!). Now, if only I could figure out why it worked for me, and then share that with everyone..............!!!

Hugs to all,

Kristin (Class of 2006...................LOL)

(((((((((((Family)))))))))))))

I just got the greatest news- I am still UD!!!! I am so thrilled.

Some of you may not be aware but I am a 1 a and only was able to do 20 weeks of the 48.

I want to thank everyone for their love, and support.

Love,

Barbara

2007

SVR - Infergen

Oct 31 07

I can't believe it myself. I'm SVR six months of Peg and a year and a half of daily Infergen later. I wasn't given the best odds and really didn't expect this news. I even dragged my feet going for the six month pcr. I figured, What's the point? My mind had just been set on taking good care of myself until the new meds came out. I went for the pcr last week anyway, one year after finishing tx.

Last night driving home in the dark and rain my cell phone beeped I had a message. I fished for it fully expecting a message from my husband or my mother. It was my doctor. Lonestar is SVR. It still hasn't sunk in. I just didn't expect this news and don't understand how I could be this lucky. I only wish with all my heart I could do some of this for all of you who are still struggling.

My best,

Rebecca

Oct 07

Hi EVERYONE! HAPPY BEAUTIFUL END OF SUMMER!!

Just got my test results and Its Official: 5 Years Clear!! And the Hospital got new in-house test equipment: < 5 iu/ml !

Next Stop: EVERYONE Clearing!! We're getting closer!!! YEA!!

With HOPE for ALL,

Marcus

Jeremy

Ok, so I've been a bad boy and not posted in some time, but I just thought I would pass some information on.

For those of you who don't know, I did 48 weeks of tx for geno 2 and finnished in February.

6 month labs are Undetectable!

So, for those of you on TX, thinking about it, etc....here is another happy ending!!

I don't know if anyone remembers me. I used to be very active on this site and then stopped. Partially because my computer is upstairs in my house, and my horrific pain in legs and knees prohibits me from those steps. I cleared virus in September 2005. 72 wks of Pegintron and riba, not to mention all the procrit. Was second time treated. I still have a-symptomatic mild cirrhosis with no upper varices. However, my once painful arthritic knees are now so painful, as is other joints I just want to cry. I believe my arthritic condition was escalated because of treatment. I live in constant pain. Can't take any pain killers with codine (codine makes me sick) and actually nothing helps. Will be seeing Orthopedic surgeon in September - I'm ready for whatever I have to do. Anyway I'm real sad tonight because I feel like a cripple and my husband misses all the walks we used to take and the adventures hiking we used to have. His words really made me want to cry. A lot.

Miss lots of you. Don't give up the fight. Treatment worked for me as it did for so many others. Just don't give up, ever......God loves us all.

Betty Aug 07

Hello everyone! I'm at a friends home in Alabama using his pc. I'm staying with my other son, Josh for a while. I got my lab results back, and my dragon has come alive again. I'm no longer clear. I don't have my #s yet and I didn't think to ask what they were, but they are sending me copies. I can't tell you how bumbed I am over this. What's next??? My dr won't even consider the tx I was on (peg/copeg), coz of the trouble I had b4, and just now this month my blood counts are normal again. His nurse said that he said check in with him yearly to see what's going on. I'm a bit bewildered by that. He said I should wait for some better tx to come out. Sit and wait....I don't know. Should I go to another dr, or wait or what? I know I have time to wait for something better, but I still feel like I've been dumped, for lack of a better word. I just don't know what to do at this point. Before first tx, my bx in oct 05 I was grade 2 stage 2 fibrosis. Will that go on till I have chirrosis, or what? I'm just a little confused right now. As always I'd like any advice, support, anything that may help the way I'm feeling right now. I hope all of you are doing as well as can be expected. I miss you all. Many hugs, Dex

Mar 07

I had my 5 year check with ultrasound and blood work. I am still virus free. Dr. Pockros used the word cured. I still have cirrhosis and that is the reason I have the ultrasound to look for tumors but none to date, as a matter of fact when you compare the current ultrasound against previous ones, he believes the liver is improving as the shading is not as dark , and it seems to be progressive as we have 2 of these a year going back 5 years. But ultimately the only way to know if the liver has improved is another biopsy. I will wait a while for that. All of my blood work is normal and my liver continues to function as it should, before treatment I had alt and ast of 450 and 900 normal I believe is about 60.

I had quit drinking years before I knew about the virus, so now that the virus is not active and I don't drink I have nothing attacking my liver

Dr. Pockros said we will no longer do the blood work to test for the virus, so I am one happy guy.

When I first started treatment, Peg Intron and Ribaviran, I dont think there was much faith that I would clear, I had genotype 1a, a high viral load, cirrhosis, and overweight. I was not clear at the 1st test but had experienced a huge drop in viral load. By week 24 I was clear and have stayed that way ever since. I did not have a lot of the bad sides that some have experienced I did get anxiety real bad about week 16 and Paxil became my happy pill that helped me though the balance of tx. I quit taking it right after tx ended. I had to take Norco for aches and pains and I was real tired all the time. i made it to work almost everyday, but as soon as work was over I was home asleep in bed or on the couch.

I live in Southern California and I believe that the weather was beneficial during my treatment I did not have to deal with the temperature extremes of winter or summer and it is always nice just to be able to go down to the beach with a lawn lounger and just take a nap listening to the eaves come in.

So , those currently on tx don't give up there is hope. I am walking proof, that even folks who don't meet the criteria for being sucessful on tx can and do clear the virus

Chanman

Apr 07

This folder is about what happens when you stop TX how long exactly do you get you back one day at a time.

(click here to check out this folder on our message boards--- 33572.1)

I took my last shot last weekend on a Saturday nite. I just took the last of those pills tonight.

So as I drag old wrinkled up butt and my two hairs that I still have on my head lip blisters and tongue blisters off the battlefield. I can rejoice because I have won the battle!!!

There was one who walked away and it was me the dragon lays dead and defeated!!!

I know there will be others battles in this life to fight this one just made me stronger and ready for anything else that wants to knock on my door.

I do not want to take all the credit my faithful troops (all of you) prayed for me encouraged me and made me laugh when I wanted to cry. I would like to say thank you so much and I will continue to do the same for you.

So on with the diary last of pills feeling quite drained but excited all at the same time. Tomorrow will be the first day without tx and my husband is still alive I didn't kill him so see killed the dragon and left the husband standing who says miracles don't happen lol. Until tomorrow God bless Lesa

July 07

I am in week 6 of the Vertex Prove 3 trial. This is a big week as Vertex releases whether you have had a response or not with your 4 week labs. You have to have at least a 2 log drop to continue in the trial. I MADE IT!!!!!!!!!!!!!

This is the first time I've dropped that far...and in only 4 weeks!!!!

I'm walking on air right now! This sure makes the anemia and nausea all worth it!

Also, remember, I have struggled with anemia so I was only on full dose Riba for 2 of those weeks. The third week I was dose reduced to 600mg and the fourth week they discontinued my Riba completely.

I can't believe it!!!!!!!

Denise

My nurse informed me today that she was incorrect that the trial protocol called for a 2 log drop at your 4 week labs. Actually, you have to have a 1 log drop at 4 weeks and 2 logs by 12 weeks.

So much for all my 2 log drop hoopla :-(

Oh well, at least I know it's heading in the right direction...and of course, there's still a chance I have had a 2 log drop. Just won't know for a while.

So, to say I'm not disappointed would be a lie.

Darnit!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Denise

To my friends,

I just got back from my gastro and the virus is back! VL 467,000 with slightly elevated liver enzymes. This was my 6 month post tx test. I must say that I am very disappointed although not completely surprised. I (as was my gastro) was very hopeful that I could remain clear - especially since they will not give me clearance at this point to retreat. My gastro is such a caring man and was very disappointed. He said that he had been hoping that he could use me as his "miracle" case.

I suspect that some of the signs I felt a month ago were probably the virus resurging but will never know for sure. I actually am more disturbed at this point at the liver enzyme levels than the vl. ALT is 112 and AST is 67. They were only slightly elevated prior to tx.

For those that were not on the board when I was doing tx - I am a 1b, starting vl of 9 mil, infected for 25 years plus. Did 21 weeks (out of 48) of tx - full dose - and was pulled due to severe sx's. Was clear post tx 1 month, 3 months. Last pcr on March 1 was clear.

I know that I shouldn't have expected to remain clear since I could not finish tx and actually have felt somewhat "guilty" knowing that others that finished tx have relapsed when I was still clear. My main concern now is a game plan for the future. Doesn't look like anything will be out soon that does not include INF.

I just want to tell everyone that I am so blessed for all the support that everyone here provides. It is definitely my refuge as it is for so many others.

June 07

Hugs, Shelley

Hi all. I have not posted here since I got my 6 month results in which I was clear. I just wanted to share the good news that I am still clear after a year. I can't say how good it feels to finally believe that this thing is not coming back. I know that probably sounds a little premature of me but I just feel like it's true. I cleared the virus after being one tx for only 2 weeks and I stayed on the tx for the full 6 months and I really think we got all those buggers. I feel blessed and I hope that very soon they discover something that will kill this disease for EVERYBODY!!! God bless all of you, Patty

pbagley

Hi.

I've posted here only a couple of times since I was diagnosed with genotype 2 a year ago, but have lurked a lot and learned a lot.

I got my SVR results today--six months after ending treatment--and I am undetectable.

I post this just in the way of encouragement Treatment was a bit rough, but doable. I never missed a day of work, though I confess my job is easy to begin with. Don't hesitate to nag your doc for anti-nausea meds, itch creme, sleeping pills, or anti-depressants. You can get through it without all that, but there's no reason to.

Good luck to everyone

Cotton

called liver clinic today to check on recent blood work.the report said NO HCV DETECTED.what a relief i have been putting it off over a year. a little history,found out i had hep c in routine test oct 2004.had bx feb 2005 geno 3a fibrosis stage 3 grade 3 started treatment may 2005 till oct 2005 was clear after 6 month check and now still clear yahoooo.i am a commercial fisherman and did treatment while at sea and worked thru it all just about killed me i was crawling around i was so weak.i started feeling better day one after tx , and real good 3 months post.lost wieght and hair was pretty follically challenged anyway, gained wieght back but still working on gaing strength iam too lazy to do wieghts. thanks to all here who post good imfo to read and to those ive chatted with good luck to all who are dealing with this disease in thier own ways ty dale ps i am now over the hill, 60

dliver

Well I’m 1 year post TX and…still undetectable. What a relief, huge sigh.

My HX is as follows:

Initial VL was over 3 million type 1a, mild portal fibrosis, and 2 biopsies. I was initially diagnoses in the 90s when all they had was daily interferon injections and a 20-30% cure rate. I opted not to begin treatment at that time. Probably contracted HCV in the early to mid 70s.

Had numerous sides, rashes, depression, mouth sores, lethargy, night sweats actually needed 2 pillows a night because I’d soak one, aches and pains. Went on anti Ds after I started crying at my desk at work about 2 weeks into TX. I’ve stayed on them, once on them I realized that I’d probably been carrying depression around forever, and my wife notices I’m not cranky. Was able to work throughout TX though my supervisor knew I was on and I informed 2 trusted coworkers so they could monitor my behavior. Treatment lasted 48 weeks, towards the end I could hardly walk a block, and was missing a day of work a week.

Now I’m back to running and exercising and feel great so for me the ordeal, I mean adventure, was worth it.

J&F is a godsend what great folks. Thank you

Roy

Hello everybody,

My 3 yrs post treatment results are My HCV still remains Undetectable and my Liver levels are alt 14 and ast 16 Normal. I did Pegasys-Copegus for 24 weeks and genotype 2b with stage 1. I have been working alot lately and keeping myself busy.

~*~Gigi~*~

Hi everyone!

I hope this post finds everyone feeling well. Just got back from the gastro for my 24 week checkup. At 12 weeks, I was HCV RNA negative with VL <10. UD!! Normal liver enzymes too! Great!! I had it checked again at week 24 -HCV RNA positive, but VL still <10 with unchanged normal liver enzymes. So I'm like, what the heck does that mean? ( Well thats not exactly what I said!! LOL!) I was pretty down and confused. My gastro said he wasn't overly concerned as my VL is still lower than what can be counted and that I should contine on. If my VL had jumped, then he would have recommended that I stop tx. He explained that the quanitative test is pretty sensitive and that at very low VL, its not always super accurate and /or it could be just "one of those things" that we really don't know why. He mentioned that he has had several other patients with similar results like me who went on to SVR. So....I am cautiously optimistic. The sides continue to be moderately miserable. I finally got over most of the riba rash, or at least its tolerable now and I don't feel the urge to use any garden implements or power tools for scratching. My biggest gripe, and I suspect a very common one, is the fatigue. I did not know it was physiologically possible to be this tired all the time!! As many of you know, I am a nurse and I work in Interventional Radiology which requires me to wear a lead apron all day. This is causing me to be hot, exhausted, sweaty, and because of the rash in my armpits ( oh rapture!) I can't use any deodorant, I smell bad too. I'm pretty much just waiting for the locusts or whatever the next plague is!! Anyways....Thanks for letting me vent a little, I'm still hanging on and at least I'm halfway home.

Mike

Aug 07

Just read my blood test results. still clear after 2 yrs. Im thrilled!!!! One problem though, every and I mean every, bone in my body aches.......dont know if it has to do with treatment or not but I'm going to check it out. Ill let you know what it is when I find out myself. Meanwhile anybody else out there achy post tx?

So all you 1A's with cirrhosis, don't give up hope. All 120 shots were worth it :)

Linda

I was diagnosed with geno 1b, stage 4 cirrhosis. I pursued tx with pegasys/ribivarin combination therapy and was undetected by week 12. Consumed 56 injections of pegasys and 44 injections of procrit for anemia, with excellent results. Developed cancer half way through tx which was evicted through a surgical procedure and no discontinuation of hep c therapy. Yes, there were days I wanted to jump out the window and yes, there were days I wanted to say to hell with this. Yes there were days of hatred and pain, self pity and rage. There were also the days spent here with my friends, true friends who saw me through tx, days I laughed and days I had tears of joy. All these days intermingled into one.......one story of success out of many......I am SVR

Never give up hope, it can be done, you too can have a success story:-)

Step

I FEEL BETTER THAN I DID BEFORE TX.
I FEEL BETTER THAN I HAVE IN YEARS!

So many times I dreamed of being able to say those things. I thank God I can say them now.

Stage 4, early cirrhosis, genotype 1a. Treated with the dreaded Rebetron (made strong men cry and weak men die) combo. Relapsed.
Retreated with Pegasys/Copegus and got SVR.

It was HARD!! Really hard, for me, for my husband, and for my children. But 192 shots of interferon and who knows how many little poison riba pills later, my 30 year battle with HepC is over. And I won. It's been a year since I finished tx, and I can finally say, I have no lingering side effects. (Yes, it took a whole year).

I'm back to cooking dinner for the fam, chauffeuring the kids around town, caring for my animals, working out at the gym, and training my horse.

Many many thanks and prayers for those who enCOURAGEd me along the way. I couldn't have done it without you. My hope is that those who are facing a situation similar to mine will read this and find enCOURAGEment.

Fear not,

Barb

CLASSICGLIDE

Hi friends,,just found out 6 months post tx is still undetectable,thx for all the great support and info.can you think of anything i shouldnt be doing or doing now like diet for example? thx again keep up the fight!

Joe and Dixie

Hi hope everyone is hanging in there havent been here in a while but thought I need to share with all that I was 2b viral40000 grade 4 stage 2 fibrosis with peicemeal I wnet on riberviean and interfreon for 6mo. wasnt to bad nothing happened during treatment that was a major deal tired , lost little weight muscles shrunk sleepless nights and eating was rough never got real sick just shakes and cold at times worked half days because I was able to so that was good a year later Im full responder . Feel better than I have now for a while . It was worth the taking of the medicine what Im saying for me anyway Im 48 yrs and quit drinking 8yrs ago not even knowing I had virus VA found out by routine blood check VA did me right at least the montgomery Al. hospital anyway hope any other 2bs read this they give it a chance and try treatment like I figured got to give it a chance it was a real weird summer thats all I can say I think Im back to normal now . Good luck to all of you and God Bless later Joe from Dixie

I was a 1B and was diagnosed in 1991.
I did the Rebetron 144 combo treatment. During the first few months of TX my viral load started climbing like crazy and then finally became undetected. That year was what I thought was gonna be the hardest time of my life, little did I know there was more to come. At 3 months post TX my viral load was back up to 3.5 million. There WAS more to come. My Dr. wanted me to wait a full year before I tried retreating. For the next 12 months I spent 3 days a week in the gym trying to put myself back together. I had lost a tremendous amount of weight during TX and was down to 145 lbs. at the end. It took almost 6 months before I was feeling like me again.
I started the next round with Pegasys. For the first 3 months I did double dosage of Pegasys and 1600 mg. of Copegus and then went to standard dosage. I made it through 54 weeks before I fell apart. I was planning on doing 18 months. I had been having blackouts and was really feeling horrible for a week or so before I went to DC 2004. Because I was determined not to let Hep C run my life, I needed to go to DC anyway, and I had to do it on my own. So I drove on down. Spent the day of the march in my hotel room sleeping and just being totally exhausted. I got myself together the next day and went out to the National Mall for our Awareness Day and was doing fine til the end of the afternoon and wound up in the ER for a few hours. I made it back home to NJ the following day. Everything was down hill from there. I was only able to work 4 or 5 hours a day and spent my weekends in bed. I got to week 54 and I just lost it. I just couldn't push myself through it anymore. I was in pain and just plain worn out. Everyday until my first VL test I was in doubt. What if I relapsed? Maybe I could have hung on for just one more month of TX or maybe just one more week. I felt like I failed because I never reached the 18 month goal I set for myself. The day I went for my 3 month post tx pcr I was sure I had relapsed. I was so upset with myself. My Dr. called to tell me I was undetected. I've never been so glad that I was wrong. My 6 month post tx was still undetected. I'll get the results of the 9 month pcr just before we all go to DC this year. I'm pretty sure it's gonna be clear. I'm still not feeling real great yet but I think recovering from the second round of TX is going to be harder. So after 213 injections and bazillions of riba pills I think I have a success story. Even without SVR it was a success for me. I made some wonderful friends along the way and had some great experiences. Somehow the good stuff always outweighed the bad.
I've heard so many success stories with Pegasys. It's pretty exciting that this drug may potentially work for all of us.

Be Well
Glenn

UPDATE From GLENN

Dear Family & Friends,
After 213 interferon injections and truckloads of Ribavirin over 26 months of TX, I've finally won the battle.
I got the results of my one year post tx pcr just a few minutes ago. I've reached SVR! It's been a long hard fight that I wouldn't have survived without the support and encouragement from everyone here at Janis & Friends. My victory is your victory. You've all helped me along the way.
I was genotype 1B which as you probably know is a tough one to treat. I hope my success will give every one of you hope that you can reach SVR also.
I've waited a full year to allow myself to be excited and happy, but now it's time to cut loose and celebrate.
YES! I'VE WON. I'VE BEATEN THIS DAMNED DISEASE!
My joy is tempered with sadness at the horrible disaster that's happening to our fellow citizens on the Gulf Coast. I'll pray that their suffering soon ends.
Be Well and thank you my friends
Glenn

Wow, lots of new faces here. Just thought I would drop in and let you know my 1 year post TX labs were clear. The Gastro said if the virus was still hiding it would have probably returned following December’s cranial surgery so he was willing to say he was 99.9% sure I will stay SVR and he doesn’t need to see me for a year-(Geno 4-C/D)
I’m still a little slow from the surgery and stroke but I’m getting there. No more migraines, cranial fluid loss, meningitis and for the first time in memory I can sleep more than 6 hours at a stretch. 6 hours of sleep, what a novel idea.....The only RX I have now is for exercise. (Geez, you would think in the year 2005 they could bottle exercise-)
Anyway, I hope this note provides some hope to any Geno 4’s out there.
Health and Happiness to all-
secas

OK...... I finally got my test back it has been a month or so ...lab couldn't find it but it is in now ...it has been 1 year and 3 months that I have been off TX ...I did 2 full years of treatment and finally cleared ...they said all my test came back NEG. the virus is gone ....now where is my lollipop ...I went to the dr`s as I was told and now I want my lollipop or I am going to throw a fit .... kick and scream and roll on the floor ...(smirks) ....thank you all for being behind me and helping me make it through all of it ....hugggs to you all and I thank you .....loves and hugggs to you all

Dee

And thanks to this website janis and friends and all the friends I've made. Without u and ur support i would be svr hepc. Just got result today for 6months post tx pcr, clear, tahnk ya'll so much. not going names becuase i might miss one. if u met in dc or talked in janis u touched my life kept hope alive for me. Details, diagnosed hepc,geno 1b, vl 7 million, fibrosis 3 3, and started tx in early august 03, toleraled the meds well but no walk in the park but i was blessed finsihed tx 7-30-04. first pcr was clear and done 24wks, 2nd pcr was post tx still clear, nexxt one was 14wks post tx,and still clear. and 2weeks ahd my 6month post tx pcr, and am still clear. I feel blessed my higher power who led me here to the support I needed, i was ignored by all family but got what I needed fromjanis and frinds For new comers these are real people who have what you have. They have straight answers to ur questions, God Bless all of janis friends. U made differnec for me, Sincerely SLC_2002 aka Philip from Arkansas

I got my test results today. 6 months 3 weeks post tx and SVR. I did it. Offical title ( Dragon Slayer) Thanks to all of you . Without your help I couldn't have made it.There were times that I felt I just couldn't go on any longer and I'd log on and you guys would give me a pep talk and a kick in the butt and I'd get back in the game and go a few more innings. The last three months were the pits but with your alls help I made it . Thanks again to all of you and God Bless. Tommy and Gypsy Jeanie

Hello Everyone,
I haven't been here in quite a while, but wanted to share the good news. I passed my 6 mo post TX pcr.
I was scheduled for 48 weeks but developed heart problems at 44 weeks and had to go in the hospital for 9 days. That was the end of my TX. I had pegged a heart monitor at 250 beats/minute.
If I can be of any help, please ask. Good luck and thanks for the help in the past.

Just wanted to share... hubby's 6mo post pcr results - virus still undetectable and Dr claims SVR!. He was type 4 and treated with peg-intron for 48 (long) weeks. Lately i've been finding that the man i married has more or less returned and life is hopeful again.Tx was hard- on both of us and our family- but SVR is worth it. There are a few issues still with lingering side effects but we feel with God in our hearts we can handle it.

Finally bit the bullet and went in and had my post tx 6 month PCR done. A month late.....I wasn't sure if I wanted to know the outcome of TX. I'm so much happier in the land of Denial....where everything is rosie. Well Hubby wanted to know and kept bugging me till I went in and had it done. Got the results back. I'm still undectable....YIPPEEEEEE. I'm glad he was such a pill. Its a relief to know the outcome. But even more important. It was such fun giving the good news to all those who supported me, laughed with me and sometimes at me, and worried about me. I didn't realize how important closure of some kind was to them too. My having and treating the Hep C turned into kinda a community project at work.....GET MICKEY THRU THE DAY....couldn't have done it without them....or the people at Janis.....Thanks
Humbly......Mickey

I just got my post one year pcr back, and I'm clear. I feeling pretty good today.

Billy Mack

Hi all..... I know it has been awhile & I am sure there are many new comers so a short story about me.... I treated once with Pegintron 120/Riba 800 & stopped ( at 24 weeks) as I did not clear..

2nd round was Pagasys 180 with Riba 1200 I had a 4 log reduction at 12 weeks & cleared next PCR at 24 weeks....I treated 72 weeks.... & stayed positive... I just had my 7 month PCR & I am clear !!... I am 1A male older now ....& I hope my story will help just one person to hang tough as I know it can be done .......

All the best to ((((all ))) .... Sandy

I don't get on with all you wonderful people much anymore but please know that I love each and every one of you.I am six months post Tx and my labs are not detecting the awful disease that we all share.I know that some of you that are reading this have not cleared and some of you have relapsed and my heart aches for you all.I am sharing this news with you because I want you all to know that it is possible to clear and hope that this will give some encouragment to try with Tx. You are part of a family here at Janis and Friends and are amongst the most knowledgable people that I have encountered and also the most loving ,warm group you could ever dream of encountering.And for all you people who have Hepatitis or have loved ones with this awful disease I want you to think positive and clear this terrible disease from your bodies.IT IS POSSIBLE!!!!
I started out at 237lbs and at the end of Tx I had dropped to 190lbs. I was on Scherings Peg Interferon Alpha-2B 0.5ml injection once a week and 600mg Rebetol in the A.M. and 600mg P.M.,I did a 48 week treatment and was clear at two week,12 weeks,and now 24 weeks post treatment.I am keeping a positive attitude for my 48 week post treatment test and for all the tests there after.
Treatment is a very hard thing to go through and I feel for every one of you out there going through it right now,but you are in good hands here at Janis and Friends.
Janis I know you are up there looking down on us all and you are the Angel that made this group possible.I only wish I had wings to come and hug you for creating something so good from something so terrible.
LOVE TO ALL,DON THE BOATGUY

At seven months after finishing treatment, they drew blood on Monday of this week.

The doc just called and said I'm still clear (HCV RNA undetectable).

I'm very grateful to all of you for your support during the past year. I don't think I could have finished the treatment without it.

I hope you all get the results I did today, if you haven't already.

My humblest thanks to you all.

Ray

18733.1

My one year post tx pcr is negative.Just got the word.It can be done.
I am officially svr.I want to thank everyone for being here.I wish all of you the best.

Fritz

hello all have a bukaroo Hug and aRose. I just wanted to share that I got my test results back today and i am still clear 1 yr SVR. I just found out though that my thyroid is still underactive. but im back on meds. and im sureall will be ok. thanks all for your support.

Buck

I was still undetectable at 183 days post tx. I am or was, genotype 2b. It took two attempts at tx to get the svr. My first tx of one year failed. That consisted of the old style combo. My last tx, I did 12 months of pegintron b + riba with an additional 2 months of pegintron a (pegasys) + riba for a total of 14 months on tx. I was much more aggressive on the second tx. Even though I had the "good" genotype, I had other mitigating factors, diabetic, overweight, male,
etc,etc,. I feel better than I have in years. Be of stout heart folks.

Heppo

Just wanted to share my good news with all my dear friends here at Janis'. I got my offical PcR report back from the Mayo. 4 years and 3 months clear!! The Roche drug company will do one more next year, and supposedly they will consider me "cured". This, as it was explained to me is so the insurance companies won't be so reluctant to give people tx (relapsers). Also they hope to prove that doing the tx for longer then 48 weeks is bringing ALOT of SVR's in the harder to treat 1 geno's.
Those just beginning your journey, please be strong and DO IT !!! Love you all, Laura Time fly's when your'e having fun!! LOL Take care.

Laura

LIFE AFTER TREATMENT:

Hi Everybody, it's been awhile since I have been in here. I still am sent the weekly emails from here, just to keep in touch. I'm glad to see a few 'oldies' still here! The reason I am finally coming back is: after 4 yrs since my tx, I still have lasting sides (depression,anxiety, severe CFS, daily nausea), and Fibromyalgia that has the worse effects. Dr. said the Hep-C tx could have triggered it. In case you don't remember, I am an 1B and am a relasper after 52 weeks of tx. I have been going to Pain Management for the pain (oxycodone 40mg in the am, and xanax at bedtime) I still see my Pshyc and he ordered for me to have the "VNS" implanted. Takes awhile to get started but will help with the depression and he has other patients that its helping them better than meds. I'm sick of talking so many meds! You can go to www.vns.com to see what I am talking about. I still see my therapist since 3 yrs now and she helps me alot too. Thank God my husband has great Insurance. I also finally got approved for Social Security benifits and Medicade after being denied 3 times. All this took me 4 years to obtain. BUT I do want to know if any others here that have relapsed are they still too experiencing the same side effects as when on tx? My own Hep-C doctor stated that his wife had breast cancer and she was on Chemo and this was 3 years ago and she too are fighting the same sides, and he told me there is a good possibility that we too may also feel lasting sides from our tx. We are all different with how we tolerated tx, and unfornantly I am with the ones who continue to feel badly daily, due to the Interferon and Riba for 52 weeks, plus being an 1B didn't help either. I'm hoping to meet anyone from the North Houston area that I can be 'buds' with. I have met a friend that lives in Texas City who is also having the lasting sides, we talk alot, but the drive to see each other is a bit much for us. My husband works alot of hours, his mother passed 3 months ago (which to whom I was her caregiver 2 years and wouldnt have it any other way, even on my worse days) My husband and I now have permanant Custody of my 12 yr old grandaughter as of last week. Her mother abused drugs and she no longer felt safe with her and now has been living with us almost 2 years. So you see, I need some Adult friends in the same boat as I.

I wish everyone well and I will continue to sneak a peek in here............

LOUIE007 AKA Maggie May

Aug 07

Well folks it will officially be a year post tx on July 8th 2007 but I dont do another pcr until January 2008... Wow how time flies! Just to refresh your memory ( geno 2b, viral load of 36 million, no liver damage and svr three and six months after tx........ I'm doing well and hope others out there are doing well also...... Bless all that are treating now or are going to treat...... Hope nothing but the best for you all......

Hugs and lots of love.

AnnaSmyles

Well...well...well!!

I just got my 5 year post PCR/RNA results...and I am still undetect!! So guess I can be called cured! But...does that take away my NORMAL status??

I now there are many of my friends who did not respond to any treatment and I am one of the very fortunate ones that responded to the old Combo (and it couldn't happen to a nicer gal either :) ) but hopefully my news will inspire that who havn't tried treatment yet to give it at least one try. My geno was 1a and I had the virus for 22 years when I began treatment. There is hope...if you havn't tried treatment... go for it!!

Mary

Thank you all! I don't think I would have cleared without this site. This is good news for a 1b. Peg/riba--48 wks. I just had my 6 mos test. Am 56 yrs old and had hep since 1970. The tx changed my whole life. Last year while on tx was probably the most stressed out part of my life ever. Marriage had problems that peaked. My 18 yr old son ended up in the mental hospital with his own problems. Bi polar/severe depression. We both ended up on anti depressants, both suffered in the bad marriage.. When it rained, it poured. I sold our house (total loss for me), rented an apt and filed for divorce.(son is living with me now doing really well) I sought out help. I HAD to make changes in my life. For me, I believe that my virus flared up because I was so stressed out, depressed, and in an abusive relationship for so long. It ate away at me until it showed up on my lab tests. I am being "forced" to change my way of living and thinking, to a more positive life. Am afraid if I dont' I will open the door to dis ease again. I have been able to see a symbol of the hepc virus in my minds eye. At first, at the beginning of treatment, I saw it as a dark green alien, and as the tx progressed, the green was emptied out.. then the alien crumbled like a piece of bent paper on the ground. I see the alien now, as a very pale color of green. I feel it is below the detectable level. I feel that with diet and my emotional and mental attitude I can keep it there. So.... talk about Silver linning.... I feel very fortunate... as the rest of my life, I will appreciate life and have compassion for others with diseases. I am still having a hard time recovering from the tx, but have accepted that I might be this way from here on out. Brain loss for the most part. But nothing to complain about. CHANGES. I don't know what I would have done without this web site. My nurse was great, but she could not answer much. thanks! koko

I went to my Gastro for my 6 month viral load, after the tx and I'm still undectable. Thank you everyone to help me get to this point in my life. It was a long 12 months waiting to see how everything will turn out. I have one suggestion for the makers of the tx, have your Doc run a autoimune panel on you to see if anything is lurking around in you that the meds might activate. I'm still on cloud nine though.
Hope to see you all in DC, we arrive the afternoon on the 9th through the 13th.
Debbie in Florida

GO GENO 4's!I got the results of my re-test (qualitative had come back "detected" after 47 weeks of treatment). When I went back in, he took a hepatic panel and a quantitative. ALL LIVER FUNCTIONS NORMAL AND HCV RNA UNDECTECTED!!!!! What a roller coaster ride this is becoming! I am definitely choosing to believe the retest, especially with some of the information some dear, wonderful people have sent to me. Opinion - should I go back for a qualitative retest, or just forget it and carry on dancing on air? I love all you guys so much, and thank you for your prayers, compassion, support and even a few shoulders over the last week after getting my first results. Can't spend too much time on site from work or the computer police will come get me :), but I'll be on tonight. HUGS!!!! Jean

To all our friends we love so dearly, we wanted to let you all know that Buck is clear 6 months after the tx! We are so happy, thank you all for being with us through all this time. We are so glad we were directed to this support group (family). God bless you all, and our prayers are with everyone! Also, Buck went to the urologist for a 1 year check up since he had his kidney out last year, and was declared free of problems with the other kidney too! God is so good!
Love to all.

Hello to everyone,

Guys i am back with my 6 months treatment report PCR is Negative but ALT is little high 61.

My Doctor advised me to go for 3 months more. What you guys think should i happy with this or not because my GENOTYPE 3 and before starting treatment my viral load is 5200 iu/ml.

I am taking interferon (Uniferon) + Ribazole 400mg twice a day.

Farrukh Shabbir

Hello Friends;

RNA, PCR Still Neg. Over 1 year

After last talking to everyone of clearing of HepC last Dec.03 I've gone back to my job in Alaska. Like I've said and again to them that know me, God has blessed me in so many ways. Liver transplant in June 98' Started tx January 03, Neg of hepC 10th week. and still clear today.
I'm very thankful to you all that listened to my concerns
The one's that Prayed for me and hoped for the best. Thank you somuch.
My prayers Hopefully will reachout and touch you through
our God.
Just wanted to share my blessings and good news with you.
Happy Easter Celebrations

14578.1

1 year post PCR and still Clear Yepeeeee!!! I think I have this dragon beat for good! Doing happy dance now!!!

Geno type 3a I have had hep c for 24yrs!

Debbie

Hello all, just got my 6 month post treatment results. All clear!! I am one happy dude. Wish the same results for you all. I was 3a - did a nasty 6 months on pegasys copegasys - finished July 25th 3003, was undetectable at 12 weeks. Lost 28#'s on tx and now have it all back and I needed it. 6' 190# now healthy and happy. It was all worth it for me..

Thanks for the support - I needed it and you gave it willingly.

Best wishes,

Steven.........(-:

Just want to let you all know that doc called me this morning and my 6 mo post-tx PCR was clear - non-detected!!! Thank you all for the support and helping me get through. Great big hugs to all.
ed

I wanted to share with y'all that my 6 month post treatment pcr came back negative which, I guess, makes me a SVR. I wish each and every one of you, on treatment or not, the same results!!!

Hugs & Love,
Pat

Dearest family,
I wanted to share my news with all of you to let you know there is hope. This morning I picked up my 3 month post tx Quanitative results...
I am now one year clear of this dreaded dragon.
When I started August 2002 I had a vl of 2.4 million. Geno 1a.
So there is hope.
Praise God and thank you to all of you that helped me throughthis. I will always have you in my heart.
Love Terri

I am a 47 year old male. About 2 years ago I found out I had hep c, geno 1. My wife tested positive but geno 2. We both went through tx, peg interferon and rebetol. Six mos after my wife finished tx, she only had to do six mos of tx, the virus was undetectable. I just got my results back today. After six mos mine is undetectable too!!! I give all the glory to the Lord Jesus. It was so dark when I was going through tx, I wondered if I would ever get my mind back, it was awful! But almost immediately after I finished tx my mind cleared, and I have put on about 25 lbs. It was worth every minute. Praise the Lord!!!

Dennis

I was never tested for genotype but the virus level was at 5 mil. Did the old "combo mombo" and was undetic by the 12th week. It's now been 3 years since tx and I am still undetic.

Blues

finished 48 weeks of Tx. January 24th. 1a, early cirrhosis. My start of tx alt was 950 ast 450 and 2.7 million little buggers in my blood. Started Paxil at week 16 to help relieve some anxiety I was experiencing. PCR was 200 down from 2.7 mil at baseline at 12 weeks, non detectable at 24, 36 and 48 weeks and now my results for the 3 month post tx report came back negative. My end of tx ast was 50 and my alt was 109 that is about where it stayed all during tx. The 3 month post tx bloodwork showed my Alt at 60 and my ast at 23. So it looks as though things are looking up.

David

Hi Hepper Family

Have ya heard the news> Deb (that's me) is still clear after 6 months. I cleared at 8 weeks into tx and did 6 months PegIntron / Rebetol. I'm still clear at 6 months post tx. Doc says repeat PCR in 3 months then yearly thereafter. Will see him again in ONE YEAR. All other labs are absolutely perfect. For those of you that "Suffered through my tx with me" THANK YOU THANK YOU and God Bless You. You accomplished a difficult task. For those new to the forum, I had a difficult time on tx but saw it through abd can sing Am Clear Am Clear Praise God I'm CLEAT At Last. Doc said I can return to work. Applied for a job at West Communications and passed all 7 of their horrid tests. Have interview tomorrow at 11 AM CST. Keep me in your thoughts and prayers please.

I do want to thank everyone hear for putting up with me. I'm sure often times you just wanted to choke me. Thank you for containing your impulses. You're the bestest heppers in the whole wide world. Now its time to give back a bit of what I received. I know my contributions will only be a lil of what I recived cause you folks have given me SO MUCH. I love you, my hepper family.

HUGZ

Deb

Click on this folder to read how our members are doing on treatment. You can read them under guest no need to join the site.

SHARING WITH FRIENDS

Or join our Message boards where you ask us questions and find support:

Chat Room & Message Boards

Joel's Story

Dear Family:

I have been sitting and reading your posts and replies for the past hour or so and, admittedly, it takes me back to the days of Prodigy when there were only about 15 of us with HCV who were sharing our innermost thoughts,fears and compassion with one another.

In late 1990, the most promising- and only truly available tx for HCV-was Intron A. Ribavirin was still an investigational drug being tested for efficacy in tx of HCV. In fact, several of my friends were involved in the NIH trials in Washington,DC back then.

In 1991, when the first HCV RNA PCR Viral Load test came out from Quest Diagnostics, it surely confirmed that I was up there in viral activity. Well, my biopsy showed bridging fibrosis (but no
cirrhosis). Went on Intron A for 10 1/2 months (5 months at 3 mil IU three times a day and, then, 5 1/2 months at 5 mil IU. I was only a "moderate" responder. My LFTs didn't really return to normal reference ranges. RNA viral load didn't respond either.

My point is this, people. As time progressed, so did the histology of my HCV (genotype 1a). Eventually, the new millenium came upon us, and so did new tx regimens. I opted to wait and see what this "new" Rebetron offering was all about- and then Infergen. However, my emotional stability did not afford me the option of starting either at that time. I knew that I had to be prepared with a positive attitude to beat this dragon of a disease.

In May,2002, I started to get "dead-drops" where one just drops and blacks out due to toxicity. All of these years, I kept close watch on my HCV with my Hepatologists. Phlebotomies for iron overloads (ferritin),yearly MRIs to r/o hepatocellular carcinomas,abdominal ultrasounds to r/o portal vein hypertension- Every conceivable blood lab that was then available to us was done at my request on a regular basis.

The ultimate outcome was that I did develop end-stage liver disease with hepatocellular carcinomas (localized)and Stage 4 cirrhosis.

On October 20 and 21, 2002, I received TWO Liver Transplants in a 24 hour period! The first Donor Liver was a "primary non-functioning Liver" and was HBV positive. However, I opted to accept it since I survived the acute stage of Hep B in the 60s- and developed specialized HBV antibodies that prevented me from ever contracting HBV again. I am also HAV resistant due to the current innoculation therapy available (for about 7 years now) that I requested since Hep A can complicate Hep C.

When the first Donor Liver failed, I was placed on life support and given 24 hours to live if I did not receive another donor organ in time. By God's Grace, the second Donor Liver came in from Georgia for another pre-OLT in the NY Mount Sinai Medical Center where I was. The organ was not compatible for her- and just right for me. I didn't know the difference since I was being kept in a drug-induced coma.

Well, 9 days later, I was discharged from the hospital with a new Life to start to look forward to. Mind you, the journey has been sometimes burdensome- and frightening.

Another surgery in June,2003 and a number of in-hospital visits later-and I am still here.

12 months after my successful Liver Transplant, I was advised to consider initiating Pegasys/Copegus tx because the HCV had now mildly infected my new Liver.This was going to come sooner or later- so I was not shocked. However, I was certainly dismayed- and still ALIVE!!!! Although there was no emergency rush to enter into tx, I started to prep my attitude and shared my heart out with those in my wonderful Support Group- my Transplant Team,other HCV people,Liver Transplant Recipients and All of the people in my network who help me to deal with A Day at A Time living.

I immediately opted to start Pegasys/Copegus treatment. I am in a protocol group of Liver Transplant recipients who are doing the