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| A
digest of Stories From Our Members |
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2008 April
Phase 2 Vertex 950
I can't believe I only have 3 days of Riba left! It was
so great to fill up my pill dispenser for the week and be able to leave some
days empty!!!
It's been a rough ride(who's treatment isn't?!?) but if I
can hold onto that UD it will all have been worth it.
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!!!!
The whole story |
|
|
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!!
Please click here to follow Terry's progress
Schering PI Trial doug where u
Terry |
| |
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
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
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.
Hugs, Shelley |
|
June 07
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 |
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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
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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
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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 same too.
Pegasys #8 injection is tomorrow (Friday). Yet, I
have been "undetectable" since week# 4. My Support Team is thrilled
for me-
and so is everyone else. However, my key to dealing successfully
with this treatment is to remain "cautiously optimistic." I know
well that true SVR cannot be confirmed until it is still there at
the post-tx 6 month HCV RNA PCR viral load test.
I am just so Hopeful and Grateful for the daily
living that I have been Blessed with today. I do believe that the
Pegasys/Copegus tx will- at the least- slow down this dragon. On the
other hand, I also have the positive attitude that there is a chance
to slay this dragon since I am an early viral responder.
We have to do this together, people. Don't leave
yourselves alone in your own heads- or the HCV will make your
thoughts run riot!
Today, I am a self-advocate and pro-activist
against HCV and pro-Liver Organ Transplant (of course)! I actively
engage in the Liver Transplant Forum (Patty can fill you in on
that), and I am on first name basis with my medical Team. I want
them all to be eye-level with me- Yet, I respect my Team as
professionals- and they respect me as a patient who yearns to
advocate his own recovery.
Ask your doctors and nurses all the questions that
you care too. Start a file to keep a history of your labs and
diagnostic tests. Any fine and qualified Hepatologist will admit
without hesitation that he/she learns as much from their patients as
the patients learn from them.
This guy here will be looking forward to chiming
in from time to time. I need you just as badly as we all need one
another.
Keep up the good work, Patty. This site is growing
and maturing with each new time that I look at it. For those of you
who are just getting initiated into the journey of conquering HCV,
please be assured that the meds offered today make the ones that we
had available a decade ago look like "archaic leeches". However, it
had to start somewhere. Finally, Hep C is beginning to get the
universal attention that it requires. It took 400 million people
worldwide who are HCV positive for this to take place.
We are in a good decade to become HCV free. We
shall be the winners. For those of us who have to re-initiate tx, do
it!! The side-effects that we get don't nearly outweigh the
prospective benefits.
I received a call while I was writing this from a
dear friend of mine
who also started the Pegasys/Copegus about 3 weeks before me. We
both gave one another the strength to take the leap. Although she is
having a bit of a rough time with the side-effects, she is now going
to call her Hepatologist to find out where her last lab results are
from two weeks ago. Get the point? One good hand supports the other.
I am certainly going to be here for all of you.
Please be there for me!
My love- Joel (A Very Grateful Liver Transplant
Recipient with HCV)
Pat v
| Hello all, been awhile
since I posted, as a matter of fact, almost 6 months since I
posted clear after treatment. I just received my 6 months
PCR, and it is back at 78,000. What a kick in the groin.
When the Dr.'s office called, they said the Doc wanted to
see me right away to talk of options. My first option, I
stated, is to get another opinion! Had them send me the lab
work, and I will be seeing another GI doc on the 21st of
February. I have not posted here much, but when I have, I
found this to be a very caring community of people! I am a
geno 1a, started treatment w/449,000 vl, and did the entire
11 months of pegasys and riba. Never once did I reduce a
dose or miss a shot, and worked thru the entire time. When I
got the all clear after treament, I was on top of the world.
I knew the 80/80/80 rule had worked for me, and I am not
about to give up now. I won't be going thru same treatment
again, maybe will retest and have liver BX, and go from
there. For the time being, I haven't felt this good for a
long time, so I know the treatment was worth it,
regardless. I am so thankful the prayers for Hope have been
answered, she has always responded to my posts with a
positive view. Conrats, Hope. Now I'm praying for the same
results, and in the meantime, I've got my chin UP! Thanks
for letting me come on here and vent some.
Pat V |
|
My name is Sheila and I live in Deerfield
Beach, Florida
Genotype 1a Viral load
1,000,00
I am 65
years old
I have had hep c for 21 years
My biopsy showed minimal damage, so I opted for no tx at that time and had
no sx for 18 years. Then my immune system started fighting this virus with
numerous odd sx beginning to present themselves. I will list them:
1) Angioedema, for those who don't know what this is, it is swelling of
tissue in or around the mouth and lips. Luckily, my swelling is on the
inside.
2) Tendonitis of various parts of my body, the most uncomfortable being my
legs and feet, also involved with swelling.
3) Sinus swelling, which is ever present and has been with me for almost 3
years now.
I have been to two hepatologists, and two GI doctors, only one of whom
thought tx appropriate for me. I tested positive for cryobulinemia and have
a high RH factor and was diagnosed finally as having hep c induced
vasculitis. It has been a miserable few years, increasingly affecting my
quality of life and my mood. I do take xanax for anxiety and ambien for
sleeping and darvocet for the anthralgia and sometimes accompanying pain. I
am a 1b genotype, not noted for responding well to the present tx and have a
viral load of >1,000,000.
At the present time I am under the care of Dr. Eugene Schiff at the UM
center for Liver Disease in Miami, Florida. He is top of the line in every
way, including empathic understanding and I recommend him highly. Getting
an appointment with him, however, is difficult and the wait is 6-7 months,
not too convenient if you are ill. He has put me on the list to participate
in a trial for a new drug called Heptazyme. It has worked in petri dishes
and on small animals, but is just now going into human testing. It is
supposed to slice the virus and not allow it to duplicate, if it works as
intended. I am more than willing to be a guinea pig. I have also tried
another experimental drug called Anvirzel, but served to exacerbate my sx
instead of helping because it stimulated my immune response, just what I
didn't need. I was taking a shot a day of that for 6 months, with no sides.
I now know, since stopping that it was making me sicker than I was previous
to the trial.
Dr. Schiff insists I have "mild" disease, but my body doesn't think so. If
I don't get into this study, I will try to wait for Roche's version of
Pegylated Interferon and Levorin, a cousin to ribavarin, but without the
sides. My fear of tx is not the dreaded sides, but rather it's effect on my
immune system and the very clear possibility of my getting sicker with tx.
I believe that is why Dr. Schiff is holding back from starting the
interferon. At this time, however, I do believe I need to give it a shot,
and if I can't get into the study, will press ahead with what is available.
I can stop if I can't handle it.
You can use this information any way you choose, and hope it is of value to
someone.
Love always,
Sheila
Karen's Story
About 5 years ago I started having stomach
problems, and the doctors did every test imaginable. I had x-rays, MRI's,
radioactive scans and nothing was found. I kept complaining, but I think by
this time the doctors were convinced that I was a hypochondriac and quite
frankly so was I. Then in May of '99 while having a severe bout of stomach
pain a nurse asked me if I'd ever had my liver enzymes checked. As far as I
knew I had, because I had routine blood work with a physical ever year. When
she checked my records she found that I had not and ordered the test. When
the results came back with elevated numbers my doctor suggested I have a
test for hepatitis. Within about 10 days the results came back and the doc
told me I had Hep C. I had never heard of it and thought it could be cured
easily. To make a long story short. I started researching what treatments
were available at the time and didn't like what I found. After being talked
into having a biopsy the results came back borderline cirrhosis. I was
stunned to say the least. I could not for the life of me figure out where I
could have gotten such a horrible disease. I figured those who I had been in
contact with over the years should be tested and everyone came back neg,
except for my ex husband. Unbeknownst to me at the age of 17 he dabbled with
IV drugs and developed hepatitis. When his genotype was checked it was the
same as mine. There was my answer. How it was transmitted to me remains a
mystery, but at the time with all my blood work, biopsy and genotype in
front of me I knew what I had to do. I knew I really didn't want what was
available on the market so I looked for a trial which would involve Pegasys.
Like I said earlier I researched and Pegasys seemed like the best. I found
what I was looking for at Stanford Medical Center in Palo Alto Ca. I called
and was excepted for a screening. The study was a randomized on involving
Rebetron and Pegasys mono. I passed all the tests and went in to get the
meds. After the call was made I was informed I had been given Rebetron, I
wasn't happy, but I had signed up for the study and decided to go ahead.
After about a week I felt like I was losing my mind and knew it was from the
Ribivirin so I cut the dose myself and I kept cutting it until I finally
told them I could not take it anymore. They had me continue on the
interferon and checked with Roche to see if I could be switched to Pegasys.
I was told It had been OK'd and went to pick up my new meds. At this time
which was the four week mark they did my first PCR and it came back neg. I
started Pegasys two days later and had no problems at all. The sides for me
were minimal and with the help of a few pain meds here and there I made it
through just fine. I did have one small problem about six months into tx
with my thyroid, but it straightened itself out. Oh I had the usual low WBC
and neutrophils, but for the most part I stayed really healthy. As of this
date 11/18/01 I have been off tx for almost 10 months and still negative. I
will have my one year PCR in Jan. My doctor's say I have about a 99% of it
never coming back, but if it does I'll do tx again. One thing I found out is
if you have a positive outlook and a strong conviction you WILL make it. I
wish everyone who reads this the best of luck.
|
