Party Ride… Roll Call!

[geterdone]

Lets all help put this here together in the coming days,

The Party Ride… Roll Call!, why might you ask? Well we’ve been here on the Hepc Party Ride for some time over the past months and as with any party ride many people jump in and others jump out (kind of like the hokey pokey, remember that one?) to make way for the new people coming in on the line to find info, share stories, support and help pull all of us together and keep us moving forward in the journey, so it might be fun for everyone to share in this party ride once again and let everyone know where we started and where we are at in treatment or have past treatment and are SVR, waiting for SVR or have relapsed if so inclined.

Might see some TX similarities here
http://www.youtube.com/watch?v=QmMQfTJ3gYk&feature=related

Genotype 1b
Diagnosed 2004
Started tx: 03-12-07 / 48wks SOC
Ended tx:  03-15-08 / tapered off meds 4 additional weeks
TX”ed 52 weeks
Baseline vl 4.7M ml
UND week at 8, 12, through EOT
Carried 33 yrs
Liver: Stage 2 Grade 2
First: 01-31-07  AST 52 / ALT 96
Last: 09-13-08  AST 21 / ALT 20
Six months post – SVR
Worst sx weeks 1 through 12

So, come’ on join the ride and add to it and lets geterdone!

jasper

[jacksonblue]

If at all possible do consider extending further i treated in 2004 for 72 weeks my wife passed away on week 23 tested positive at week 24 and negative at week 26 extended to 72 weeks and relapsed i was neg on all tests from 26 to 72weeks wishing the best of luck regards steve

[IAmTheWalrus]

Youngbloods!

Feb? 2000 - dx HCV, geno 1, biopsy = stage 1
Dec 2005 - biopsy = stage 4, AFP elevated, tumor found in caudate lobe of liver
Dec 2005 - dx = HCV, HCC, ESLD (I was blown away!)
Feb 2006 - listed for transplant
Sept 11. 2006 - transplant (tumor not malignant on explant liver!)
June 2007 - HCR (graft reinfection), biopsy = stage 2
July 2007 - Start tx Peg + Riba
Jan 2008 - UND at 26 weeks, extending tx to 72 weeks
Mar 2008 - Still UND
Jun 2008 - Still UND
Finished 66 weeks TX

Now considering extending tx to 84 weeks (love that interferon buzz!  ;-)  Gotta SVR this round because I don't think I can do multiple treatments like many brave souls here. I can't even imagine doing this eight times!

Brent

"All are strangers, all are friends, all are brothers" - Stephen Stills

[epiphiny]

Very nice, thank you very much :))

[geterdone]

As the waves of treatment rolls us forward in treatment and some times over us, remember it’s in your command and your sisters and brothers will be there to lend you a hand in the hard times.

Love is but the song we sing,
And fear's the way we cry
You can make the mountains ring
Or make the angels sigh
Know the spirit is on the wing
And you need not know why

C'mon people now,
Smile on each other
Ev'rybody get together
Try and help one another right now

Some will come and some will go
We shall surely pass the Tx doors
When the one that left us here
Returns and gives us helping hands
We are but a moments sunlight
and have been fading in the haze

So C'mon people now,
Smile on each other
Ev'rybody get together
Try and help one another right now

If you hear the song we sing,
You must understand
You hold the key to UND and SVR
All in your trembling hands
Just one key unlocks them both
and It is there at your command

C'mon people now,
Smile on each other
Ev'rybody get together
Try and help your sister and brother
Right now
Right now!


http://www.youtube.com/watch?v=u5ALKAaa-TU&feature=related

jasper

[bajawoman]

dx July 2008
carried over 40 years
genotype 1b
viral load in July   47,300,000
fibrotest October 2008
alpha-2 Macroglobulina 3.26
Apollpoprotein 1.46
Billurublina  5.13
Haptoglobina  1.72
Gamma GT 36
Alat  41

my Alt in May 2008 was 12

score  0.32 F1-F2  just under the stage two mark
score: 0.23 AO-A1 just under the phase one mark

fatigue, anxiety, pain, depression  can't decide to tx or not difficult decision somedays it is a yes and the next no
prescribed by my GI
tx 48 weeks have not started yet if I begin it will be this
december want to go on AD's first will begin them this week and excercise
want to get a few
more tests eyes and heart, thyroid, arthritis

[epiphiny]

Tried to send you a note but you're not accepting them at this time!  I just want to say my hat is off to you, sir.  Yours is an inspirational story and it made me cry when I read you have finally achieved SVR.  Congratulations and I look forward to wishing you Happy Birthday on your 100th!!!

[Andiamo1]

Treated 8 times in total.  Diagnosed in 1987 with non A non B hepatitis.  HCV discovered in 1989 and I tested positive.  Probably infected in 1961.

Stage 3/4 transitional.

Participated in every trial from 1989 until 2008 when I finally reached SVR with Telaprevir.  Feels good to say goodbye to HCV after twenty years of treating almost every other year.  Did 70 pushups on my 68th birthday and plan on increasing that until I reach 100 on my 100th birthday.

[PegOnPeg]

dx May 2008.
G-1...never given a letter.
Probably got it in the 80's...too much partying, obviously...
Initial vl 13,500,000
bx results: 2-3
I don't have the copy of my 1st blood work, for AST & ALT levels, but my NP said they were only slightly out of range.

I was anxious to start tx right away, but after the ultrasound & CT, they'd seen "something" @ my pancreas.  It took a few more weeks to get the EUS scheduled. That came back clear.

I waited a couple more weeks more to meet with a new dr, since the GE I'd gone to was, & still is, an idiot. Husband still goes to him. He is G3 & already UND... I connected with a liver clinic.

I just got the phone call last Thursday that says all my paperwork had been submitted to the insurance company & we are good to go. I'm expecting the call from the pharmacy any day.

Slated for PegIntron Pen - 2b, for the weight regulation...I'm @ about 115 now...When all this started, I weighed 124..I just kinda' lost my appetite..: (

And believe me, after I get this thing started, I'll be back here for LOTS of support & sympathy...I expect ALL of you to live up to my expectations.

Peg

[Deb_c430]

Geno 1a,   relapser x2,
third time treating
Diagnosed !999

Starting baseline
11/02/07

Hep C Virus RNA QU
HCV RNA Quant PCR  
Abnormality Level   H                    203000                                   <5       IU/ml


HCV RNA PCR copi                  
Abnormality Level   H                    406000                                    <10   copies /m



12/13/07

Protien total serum  2.5
Albumin  Serum     3.9
Globum                  2.5
A/G Ratio               1.6
Bilirubin                   0.8
Alkaline Phosphatease, S      69
AST                                      27
Alt                                        23
HCV Quantasure Plus non graph       610,840   IU/ml
HCV  Log 10                                        5.786  Log 10 IU/ml


02-26-08

HCV Quantasure Plus
HCV Quantatitation           310  IU/mil
HCV  log10. 2.491            log 10
Please note: This test measures   HCV RNA in international Units
Using realtime Polymerase chain Reactions, technology
It quantitates from  10 to 10,000

i went Und at  week 12 I restarted in jan,  as you can see my VL went up from Nov to Dec,

Adjust infergen to daily injections, 900 ml daily,  1000 riba, just went tdown to 800. Procrit neupogen

Worst sides, bouncing HGBs  and everything that goes with it. headaches, body aches, just plain old sick.  

But still funny!

Deb

[gauf]

Geno 3a. 2x relapser, stage 4 compensated. Biopsy in '05 Stage 2/3 Downgraded to 3/4 with blood markers, etc. VL 850,000. 12 week treat with pegasis and 800 Riba. Developed serious infection and anemia at 11 wks and taken off 1 week early. UND at 12 wks. 6 mos post VL 250,000.

Retreated Fall '06 Pegintron and 1000 Riba. 24 weeks 100% compliant. Anemia treated with procrit. UND at 12 wks and EOT. 6 mos post VL 4 million.

3rd treatment start 5/08.  1600 riba.  DD peg first 4 wks ; UND at week 5. Currently at 22 weeks.

[goosenbee]

geterdone, I've been a lurker, but here goes...

Genotype 1b
Diagnosed August 2006
Carried 30+ yrs ???
Liver: no biopsy, clear CAT scan
Pre tx: AST & ALT in 30 - 40 ranges
Baseline vl 2.37M ml
Started tx: February 2007
Tx - 180 mg Peg Interferon A; Riba 6 200 mg pills daily
Mid treatment reduced to 150 mg, 5 pills
Ended tx:  January 2008
UND week at 12 and EOT
3month post -- rebound, no tests since, will retest in December
Worst sx weeks  around 24 - 30 severe depression
Side effects -- worst was Riba cough -- horrible dry hack everytime I spoke, ate, breathed deeply, etc.  Fatigue, nausea, brain fog, weight loss, hair loss, and on and on. Couldn't work, on disability (still).
Post tx -- hair and weight are back, cough gone, still have fatigue and brain fog, but I had them before tx
Probably won't re-treat unless a miracle drug comes along -- it took a year of my life.

[Lady Lauri]

Geno 2b
Dx'd May 07, 49 years old. Estimated infection 30 yrs. before.
Bx July 07- stage-borderline 2/3 on the 1-6 scale (moderate damage)
Tx started Sept. 07, 180 mg Peg, 800 mg Riba
Reduced at week 5, 135 mg Peg and 600 Riba.
Reduced at week 16, 90 mg Peg, remained at 600 Riba
Ended Tx Feb. 08, did 23 weeks.
SVR at 6mths post
Worst sides....Debilitating Fatigue-Hgb,  total -bad-body pain, insomnia, bedridden thru 70 % of tx.
Got lucky on hair loss, nausea.
Stopped all work by week 5 tx. (physical, still did some desk work at home)
Post tx...took until @ 7mths post to start feeling good.

Best medicine...Med Help and friends! Read here a long time before joining, posting.
Don't do that, come right in :)

Good luck to all!  LL

[alagirl]

Genotype 1b
Infection Date: 7-1-07
Diagnosis Date: 8-29-07
Tx Start Date: 10-5-07 / 26wks Riba/Pegasys
Tx End Date:  3-30-08 (maybe a few days less)
TX'ed 25 weeks
Baseline vl 188,000
UND week at 4 through EOT
Liver: No damage - treated acutely
Six months post – SVR
Worst sx weeks - I was too delirious to keep track

[sunshine585]

Dx May/07
Etiology unknown
Geno 1
VL 1.2 mill
Grade 2/stage
Commenced Roche study R04588661 Jan/08
Negative conseguences/ everyone taken off study drug early
Had also been on Peg 180mcg/ Riba 1000mg continued with this standard, although have had frequent dose rductions d/t neutropenia, thrombocytopenia etc. No rescue drugs.
Inspite of this, my VL has been <15 since before wk 18
Have been on Peg180/Riba1000 without any further reductions since Aug VL still<15
Have 10 more weeks to go, last day Dec. 17
Many sides, some tolerable, some very difficult
I worked from Jan to beginning of May, and just couldn't do it anymore.

[nygirl7]

I like having this because I can never remember anybodies stats and maybe this will be a refresher course for me.

Geno 1A and 1B
568,000k baseline
Stage 3
72 weeks tx - SVR 20 months
Diagnosed August 2005
Could have gotten it any way except a tattoo

Damn glad it's gone!

[AngelsOnMySide2]

Transfused October 1977

Diagnosed August 2006
Genotype 1b
Liver biopsy
Grade 2-3
Stage 3/4

Started March 27, 2007 clinical trial SCH 503034
Arm one of study-standard of care, if not cleared by 6 months, will be treated with trial drug-Protease inhibitor-see below
Now being treated with
Peginterferon alfa 2b Redipen 0.5 ml of 150 mg redipen
Ribaviron 200 mg-3 in the am and 3 in the pm total 6 capsules per day (200 mg each)
If after 24 weeks the levels are non detectable I will continue with standard treatment for another 24 weeks
If the levels are detectable I will be offered the trial drug with the peg and the riba for 24 weeks. Total treatment may be up to 54 weeks depending on the time it takes to get the virology results from treatment week 24 visit.

Left the study at 48 weeks because I didn't clear until 20 weeks and wanted to extend to 72 weeks...we almost had them convinced to let me do it, but in the end they turned me down. I don't blame them at all, it would have held up their study.  If they would have offered me a chance to go into the next study and get the trial drug for sure, I may have done it, but they couldn't promise that to me at the time.  So I had to leave or I would have wasted 48 weeks of treatment and not really have had a chance at SVR without extending to the 72 weeks.

Dose reduce to 200 mg of Ribaviron(3-am and 2-pm) and .5ml  of 120ml redipen
February because of weight loss and because of terrible ezcema all over body.

Lost practically all my hair on treatment....hair is over rated anyway...it is growing back now.

Thyroid went wacky...went on synthroid...took a few months to get that straightened out.

Stayed in bed most of the 72 weeks...couldn't walk more than a few steps without being totally out of breath...I found if I had something to hold on to I could walk better..example when I went to California, I held on the grand daughters baby carriage, and was able to walk further without getting out of breath so fast.

Could not cook at all, couldn't stand the smell of food....thought I'd never cook again.

Was on procrit most of the time, until Dr. took all his patients off because of black box warning...that would be Dr. Jacobson in NYC

Lost about 30 pounds...this was a good thing.

Had terrible eczema the last 8 months of treatment, was on numerous creams, had open wounds the size of quarters on arms and legs and butt and some on head.
Had to get photo therapy 3 times a week to help clear them up...not fun when you can't stand too long to begin with.

Went to California to stay with my daughter last 2 1/2 months of treatment...

Continued on treatment for 72 weeks, finished August 2008.
2 month PCR still undetected.

Started feeling better after about 1 month...hemoglobin finally back to normal this month...sores finally healing, just a few open ones left on legs and head...

Gained back 10 pounds....not good....food tastes soooo good now!

Should be going for my 3 month test the beginning of November, that's also when I'm moving to California from New York City.

Donna

[mike716]

Antibodies to HCV found in blood Feb. 2008 after blood tests for gastro problems.
PCR Mar. 2008: HCV+ geno 1b active.
No idea how long infected.
VL: >850,000.
ALT & AST: 60s.
Biopsy July 2008: A2,F1.
Ultrasound: Liver and spleen slightly enlarged.
Endoscopy: No varices.
Ecodoppler: Porta vein normal.
FibroTC June 2008 confirms F1.
Under treatment in Argentina because I have no insurance in U.S. and won't be a guinea pig in trials by drug companies.
Consensus of opinion by Hepatology Dept., Italian Hospital of Buenos Aires: wait for improved tx.
Self-treatment to slow fibrosis: No alcohol; strict no-fat diet; lots of exercise; nutrient therapy of antioxidants, polyunsaturated fatty acids, and Dilinoleoylphosphatidylcholine.

[greencharles]

Genotype 1(?)
Diagnosed Aug 2006
TX: Pegasys 180ug + 1200 Riba 48wks
Started tx: April 07
Ended tx:  March 08
Baseline vl 2,580,000 IU/ml
Week 04 Viral load:  228 IU/ml
Wks 12, 24, 36, 48 & 12, 24 post-tx: UND
Liver: Biochemical marker 'Hepascore'= 0.4 ('insignificant fibrosis' Oct 08)
First: ALT 89 April 07
Last: ALT 31 Oct 08
Six months post – SVR
Worst sx weeks: anemia/neutropenia (0.5) throughout

Greencharles

[geterdone]

This is fantastic! It’s because of all of you that this thread has grown as it has and would be great to see it continue in the coming days as other may not have been online, and in reading this thread feel comfortable enough to hang a shingle here. It’s tough at the start of treatment especially as the interferon starts taking hold of your brain and the riba starts slowing your body down and your mood swings are as erratic as night and day and your emotions are as frightful when walking in the unknown of your journey. Yeah, it’s good to have a place to go and reach out for the help you need and to keep you steady while the aliens take over your body and mind. I felt great comfort here, as I’m sure you all have too and that is what makes this place GREAT! In closing, here is a little home grown song re-written in that reflection of the beginning.

Hello darkness, my old friend,
I've come to talk with you again,
Because hepc was softly creeping,
Left its seeds while I was sleeping,
And the virus that was planted in my pain  
Still remains...
Within the sound... of silence... ;((
In restless dreams I walked alone
Narrow streets of cemo and cobblestones,
'beneath the halo of our lonely street lamps,
we turned my collars to the cold and damp (closing the world out behind)
When my eyes were stabbed by the flash of a neon light...
That split my brain in the mist of night of riba and inter-fer-on,
and touched the sound of silence.

and in the naked light I saw...

Ten thousand people, maybe more... (( Ya! Baby this is us :-))),

People talking without speaking,
People hearing without listening,
People writing songs that voices never share
and no one dare, for the sound of silence...

"Fools" said I, "You do not know
Silence like the virus... hepc grows.
hear our words that we might teach you,
take our arms that we might reach to you."
But my words like silent raindrops fell,
and echoed...

In the wells of silence...

and the people bowed and prayed
to the neon gods they have made. (the inner life we yet not know)

and the sign flashed out its warning,
in the words that it was forming.
and the sign said, "The words of the prophets

are written on the inner walls
and tenement halls."
and whisper'd in the sounds of silence.

This, has, is and will be our stories for a period of linier time, and as we near the end of our journey, lest not forget those that will follow, maybe 100.000 or maybe more.

Jasper

[Annie441]

I'm loving the long lashes, have always had very short ones. I would feel like a glamour queen if I didn't have the hair falling out and the white paisty skeletor look going on. LOL


Ann

[CMcH]

I noticed my eyelashes are very long now and I had no idea others did. I would imagine at some point they fall out. My NP wants to reduce Riba instead of more rescue drugs. I want to fight that.
Hang in there and stand your ground.
Connie.

[Annie441]

Dx: Dec 2007
Started tx 3/14/08
Genotype-1A
Baseline VL -207,000
Grade 0 Stage 0
4wk PCR - 497
12wk PCR - < 25 (still detected)
24wk PCR- UND, currently on wk 31/72
Pegasys 180mg, Riba 1200

SX- mouth sores, low grade fevers, hair loss, eyelashes growing (I like that one), some vision troubles and weight loss. Started tx a little over 100lbs now at 90lbs. Have missed one day of work b/c of spending the day in ER due to extreme and unusual sx to AD.
Hbg is down to 9.6 and WBC is at 1.6 this concerns me since I’m starting to think my GI would rather reduce than give rescue drugs.

Ann

[springfever]

Geno 1a
VL 900,000 ish
dx Feb. 2008
Stage 2 (report states 3, doc says 2, shrug)

currently lining up my pre-tx ducks while dragging my feet.
notice fatigue increasing, dropping into sleep like a rock, and over health going down, so body telling me 'danger Will Robinson'.
plan to begin tx before end of 2008

Love this thread geterdone!

[goldyn]

        Geno type 1A 42 yr female had for prob. 20 years or more
        diagnosed 2003
         tx nov 2006- 2007
         starting viral load 15,000,000
          stage 2
         12 week pcr neg
         did 48 weeks
         8 mth post pcr =SVR- Thank You Lord
         side from tx is high Blood pressure controlled by meds now