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Avatar universal

( ( ( ( ( ( ( ROLL CALL ) ) ) ) ) ) )

WOULD IT BE OKAY IF EVERYONE HERE JOINED IN ON A "ROLL-CALL"!    I MEAN SOMETHING SIMPLE,  JUST A LITTLE ABOUT YOURSELF AND HOW YOUR DOING:        -example-

I'M STONEWALL611, GENO 2b,  GRADE 3-4   HOPE TO START TX LATE DECEMBER 2009 OR EARLY JANUARY 2010.     FEELING VERY ANXIOUS,  WORRIED,  HOPEFUL.  GUESS THOSE ARE GENERIC REACTIONS TO FINDING ONESELF IN THESE SUCH TROUBLED TIMES.   I DO BELIEVE THAT FROM THE MOMENT I WAS DIAGNOSED AND  CAME TO GRIPS WITH MY MEDICAL SITUATION AS A REALITY.    THEN ACTIVELY PURSUING MEDICAL INSURANCE COVERAGE AND ENLISTING SPECIALSTS,  TOO BE THE MOST DIFFICULT TIME OF MY LIFE TO DATE.  AND YET,  I FEEL CONFIDENT THAT I WILL BE OKAY.   GOD WILLING.

PLEASE BE THE VERY NEXT PERSON TO ADD TO THIS ROLL CALL!!   IT FEELS GOOD AND MAKES OTHERS FEEL GOOD TOO!!     "COME  ON  IN,  THE  WATER  IS  FINE"

28 Responses
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969557 tn?1314370614
GT 1b  
Baseline VL: 130 000
Started treatment 6 months after the acute stage appeared cause of the demand of being one year clean first.
48 weeks TX, 90 µg Peg (due to low platelets) & 1200 mg Riba  
RVR, EOT 07.08.09  
Still UND at 9 weeks post EOT  

Will know how it turns out in February, I am pretty confident to SVR.

The brainfog is still present and my concentration is worse than it's ever been, but the depression has gotten better. I'm not the same outgoing girl I used to be, but I still got hope I will return to myself again.
Helpful - 0
Avatar universal
Reporting in as requested, sir!

I've had HEP-C since 1969 when I was discharged from the Army.  It was called non-specific hepatitis until I was told I had HEP-C in 1992.  I have endured all the protocols, beginning with straight Interferon through to Peg-Intron.  It didn't take.  I am 60 years old.

I have geno type 1A and am now in the end stage.  Last month I was told it's terminal and a year would be a good bet.  I am now waiting for the VA to approve me to get on the transplant list.  IF they put me on the list and IF I should get a new liver, then I may be able to have a bigger role in helping my 17 year old daughter and her newborn son to stabilize their own lives.  I would like that.

I eat healthy, don't drink or smoke and exercise regularly.  I have tried every alternative treatment you can possibly name and probably owe my longevity to them.  I've lost 35 pounds in the past 6 months and didn't really have it to lose.

I've had absolutely no symptoms until May of this year.  Then I got hit hard.

A positive attitude has helped, I'm sure.  I love life and have led a good one, I believe.  I really don't want to check out yet, so I'll continue to believe that all will end well.

That's my report, sir, and I am sticking to it.

Good luck to all who have this nasty disease.  Live right, eat well, exercise and follow the doctors orders.  

Oh, yeah, and pray for a cure!
Helpful - 0
Avatar universal
Hi, 51 yr old female. Probally contacted in the early 80's. G2 Have been tx for 21 wks. Have 3 more wks to go. Didn't have sx until 10 wks. Since then it has continually gotten worse. Right now I feel like I can't take it any more. I cough all the time and my mouth is always sore inside. But I will make it just like everybody else. I was UND at 4 wks. I have good ins. I only pay 80$ a month. It is Blue Cross/ Blue Shield
Good Luck to everyone
Helpful - 0
163305 tn?1333668571
September 2005 ~ Diagnosed with HCV, genotype 2, and decompensated cirrhosis
December 2006~July200 ~32 weeks tx, relapsed
April, 2009~ live liver transplant

I probably had HCV for about 30years before my diagnosis.

Various dermatologists told me the spider angioma on my upper chest was from sun damage. Not one suggested getting a liver panel.
If they had I would have been diagnosed sooner.
Helpful - 0
Avatar universal
I was fortunate to have mine paid for through an L&I claim. Many here qualify for all-expense paid studies ( to be a lab-rat extraordinaire) but have come away virus-free for their efforts...~MM
Helpful - 0
751342 tn?1534360021
Clinical trials is how many of us got our treatment. I have insurance but only used it for comfort drugs (Xanax). There will be more trials, don't worry about that. You have time to wait if you're 1/1. That's what I am, and I'm waiting indefinitely at this point after what I went through on SOC + PI drugs. Hang in there, I'm sure better options will be coming in a few years.
Helpful - 0
372366 tn?1284403873
Thanks giving weekend, 2006 diagnosed with Hep C,1a, stage 2, viral count 3 million.
- had it for 20-30 years.
- blame my parents for not tellin me bout the dangers of drugs!
- my symtoms prior to treatment, tired all the time, soar aching muscles, soar joints,   fast visual change, mental confusion more than normal.
- Neurologist found the virus after two years of symptom complaints to Doctor.
- started treatment Feb. 07 for 48 week, finished in Dec, 07 SVR after twelve weeks.
- weight based ribavarin treatment, had to decrease mid course due to low red blood cell count.
- it was hard for most of it, could not walk twenty feet without having to sit and regain my breath.
- hunting was real tuff, my son would prop me up against a tree, load my gun and turn on the walky tacky. The squirells were pickin on me all day, but sitting out there watching life go by is worth it in the end.

Harry


Helpful - 0
374652 tn?1494811435
How did all of you get treatment?  Do you all have insurance?  Just wondering cuz  I dont have it and I cant imagine paying for it, as a matter of fact theres no way I could.
Helpful - 0
862235 tn?1336060295
Diagnosed 1999 HCV 2b
treated feb. 2009 through aug. 2009
4 wk. 12 wk. & EOT all UND
6 mo. post in feb. 2010 apptment to discuss in mar. 2010
Helpful - 0
Avatar universal
geno 1  diagnosed 2006 starting viral load 50,000 week 4 und . on 44 weeks of 48 and struggling true    
Helpful - 0
Avatar universal
Genotype 1b
Diagnosed 1995
Liver transplant/Cadaver liver  June 2000
Treated 3.5 years Peg/Riba
SVR  June 2004

Mike
Helpful - 0
717272 tn?1277590780
Acute hepatitis 1971, looked like a jack-o-lantern & thought all these yrs. it was gone.
DX Oct. 2008 w/geno 1b
3/4 then, don't know now
Starting VL 210,000
TX Nov. 08-June 09 in boceprevrir trial for 28 weeks; cleared on SOC lead-in.
SVR if they will ever run the darn sample (guess turkey and lab work do not mix).
Interferon hangover (great term, Speed) with some stupid autoimmune stuff still going on 6 mos. post-EOT.  Hoping for the best; very glad to regain my normal lifespan prediction. I will meet my grandchildren after all.
Helpful - 0
Avatar universal
Hi, I'm Melinda, I'm 45, a paramedic, a mom of a 10 year old daughter, and married 19 years.I was diagnosed in 2007 with Hep C that I was able to trace back to a dirty needle stick.
3A
1/1
24 weeks tx with EOT August '08 -Used Riba/ peg-interferon
RVR at 4 weeks
Complications -the usual rash/ dry skin; thyroiditis, thyroid storm, hyper and hypo thyroid, hemolytic anemia with HGB down to 9.0 and HCT at 26, female hormones messed up, no rescue drugs
Long term effects -vision changed, gray hair, better appreciation for life

Best news, Still SVR and all body systems are back on-line! :)
Helpful - 0
1051313 tn?1284780795
Diagnosed 1992
Geno 1A
Liver enzymes 50-70 range until chinese herbs=1500!
Biopsy in 2008 Stage 2 (1-2) Don't remember
Viral load 5,000,000 at 185 lbs, 1 year  later viral load 3,000,000 at 148 lbs
Started tx mar 2009 peg inf and 1000 riba
Viral load at 4 weeks 4000
UND at 12 weeks and Neg
Still plugging along at week 36/48 and I think I am doing better. The 20's were the worst and the first few months.  I hate my hair, gained 10 pounds and I am mostly just fatigued and wondering how to make it through the holidays with so much to do and not enough energy. Still love my bed more than anything.
Vic
I waited so long for Tx for better options but finally decided to go for it. The new options look so much better but it was my time to try. Although it's hard, I don't regret and would do it again.
Helpful - 0
Avatar universal
Don't remember all the specifics, been a while. Dx'd in'98. Biopsy '99. Tx'd in 2000. SVR in 2001. Most Sx still linger (interferon hangover?) Fog the worst part early on. Gee, sometimes I even feel "normal" now. I don't post often so I'd just like to say Hi to all and wish everyone the best this holiday season. Also congrats and good luck to all the recent SVR's!!!
Helpful - 0
179856 tn?1333547362
NYgirl aka Debby
Stage 3 Starting VL 568,000 ALT/AST mid 200s
Geno1a/1b SVR 3 years in Feb '10.
Treated 72 weeks (not UND until between 12 - 24)
Developed hyper then hypothyroid (autoimmune) Syntrhoid .88
Epogen 69 weeks after six point hgb reduction in ten days

SVR ROCKS!

Helpful - 0
374652 tn?1494811435
genotype 1 (not sure a or b) probably in 1971, discovered infection 2yrs ago around Xmas.  biopsy 2/2007 stage 1 grade 1 no insurance waiting....
will redo labs for blood work after the new year just to see.  (not that I really want to)
registered at local center for study, no word yet.  Sad to hear there wont be anymore PI trials.  waiting... for health care.
60 yrs old,, waiting and putting one foot in front of the other amazed every day when I wake up.  
May all being be free from suffering.
M4now
Helpful - 0
751342 tn?1534360021
Infected between 1980-1988
Diagnosed in 2003
Geno 1a
1/1
Tx ed 28 weeks in SCH900518 Trial (quit at week 28 not week 52 due to sides)
Still detectable at week 16 ?? not exactly sure but I did not get good results on SOC. I got option to do Rollover Arm (I was in Control Arm - SOC in the beginning) because I did not make 2 log drop at week 12 but did make > 1 log drop. Completed the full 12 weeks of additional 2 study drugs.
Relapsed at 4 week EOT (VL 81, 000)
Viral load at 12 weeks EOT 105,000
Won't do it again unless I have to, unless they come up with a no interferon option. ( I think this may happen). Still having side effects but nothing unbearable (ears ringing). For the most part life is good post Tx!
Helpful - 0
412873 tn?1329174455
Infected about 30 years
Diagnosed Jan 2008
Geno 1a
1/0
Tx'd 48 weeks in a Vertex trial
RVR
Still UND at 5 months post
Going for my 6 month post PCR on the 17th...hoping and praying for SVR

Tx wasn't fun.  But I'd do it again in a heartbeat.
Helpful - 0
476246 tn?1418870914
Infected ca 25 years with geno 3a
DX March 2008
treated 32 weeks
stage 0-1, ca 3 months post tx
SVR

Helpful - 0
Avatar universal
   Geno 1a
   Stage 4 grade 3
Probably had this 30 years. Was misdianosed for 3 years when my platelets got low in 2003....Went to hemotologist and dianosed with ITP an auto immune disorder. I went to a new Primary Care Dr in 2006 who properly dianosed me with Hep c.I have cirrhosis and have been evaluated for a transplant if needed. I txed once with pegassys and riba for 48 weeks and relapsed. I am in a boceprevir trial now.
             I get along alright.....
Helpful - 0
220090 tn?1379167187
You have good taste in music.
Helpful - 0
96938 tn?1189799858
Hallelujah!!!
Helpful - 0
220090 tn?1379167187
Back in the dark days of adolescence, life was difficult for me as it often is for people that age.  During the rough times, I would come home late at night, lie on the couch,  take a mind altering drug and listen to great music.

Little did I know that 45 years later, I would take a mind altering drug, lie on the couch and listen to music.  Unlike the psychedelic experience of the 60s, this drug was interferon and the experience was dark.  Every glance a threat, every car horn an attack.

Music was once again my savior.  Now I am SVR after many years of treating over and over -- but it was all worth it.

Tonight I listened to Handel's Messiah at a local church and music is still my savior.  Every day reminds me of how wonderful life can be.
Helpful - 0
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