Aa
( ( ( ( ( ( ( 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"
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"
Hep A 1961
Hep B 1973
Third case of acute jaundice late 1973. Probably Hep C.
ALT/AST consistently 60-80 range late 1980s - 2001
Dx nonA/nonB 1992
ALT/AST elevated 300-400 range 2001 due to drinking
Dx of HCV confirmed and genotyped 3e 2001
Txd Oct 30 2002 - April 9 2003 Peg-Intron/Riba weight dosed for 100kg
Reduced riba to 800 mg at week 19 and stopped early (23 shots and 22 weeks of pills) against doctors orders. Blood work was fine - my mind, not so much.
All PCRs undetected Jan 2003 - April 2007. Haven't bothered to test since.
Hep B 1973
Third case of acute jaundice late 1973. Probably Hep C.
ALT/AST consistently 60-80 range late 1980s - 2001
Dx nonA/nonB 1992
ALT/AST elevated 300-400 range 2001 due to drinking
Dx of HCV confirmed and genotyped 3e 2001
Txd Oct 30 2002 - April 9 2003 Peg-Intron/Riba weight dosed for 100kg
Reduced riba to 800 mg at week 19 and stopped early (23 shots and 22 weeks of pills) against doctors orders. Blood work was fine - my mind, not so much.
All PCRs undetected Jan 2003 - April 2007. Haven't bothered to test since.
I agree. as hard as tx can be at times, the stress level leading from dx up to the first shot was worse than any sx I've had to this date. Guess it had mostly to do with the unknowns at the time. Lol, and the "knowns" coming in weren't doing much to decrease that stress level !!!
GT 1a
Stage 4 - Grade 3
currently txing at 49/72
UND since week 12
Sx have abated for the last 6 weeks or so after 12 weeks in helll, so life is GOOD!!
Pam
GT 1a
Stage 4 - Grade 3
currently txing at 49/72
UND since week 12
Sx have abated for the last 6 weeks or so after 12 weeks in helll, so life is GOOD!!
Pam
GT 1a
Undetected at week 4
Take shot 14 of Interferon on Monday
1000 ribavirin a day
Take neupogen two shots every other week for low WBC
Feeling rather sluggish. Tire easily. Have been waiting tables since the beginging of tx but have been exhausted this past week.
The bad days help me to really appreciate the good days and to enjoy them. This treatment is only for a season of our lives.
Undetected at week 4
Take shot 14 of Interferon on Monday
1000 ribavirin a day
Take neupogen two shots every other week for low WBC
Feeling rather sluggish. Tire easily. Have been waiting tables since the beginging of tx but have been exhausted this past week.
The bad days help me to really appreciate the good days and to enjoy them. This treatment is only for a season of our lives.
Genotype 2b
No biopsy done, so I don't know the stage of liver damage (if any)
Elevated AST/ALT
Prior to treatment: ALT: 210 AST: 143
Prior to treatment: Viral load 383,000
UND at week 4!
ALT: 89 AST:64 at week 4
I just gave blood for the 12 week labs, and am hoping my ALT/AST are back within normal range. (fingers crossed)
6 month treatment schedule (so I'm halfway there), I started in September.
1 Weekly shot of Peginterferon alfa-2a (13th shot next Thurs)
400MG of Ribovirin 2 times a day
Welbutrin 150MG (for depression) 2 times a day
No biopsy done, so I don't know the stage of liver damage (if any)
Elevated AST/ALT
Prior to treatment: ALT: 210 AST: 143
Prior to treatment: Viral load 383,000
UND at week 4!
ALT: 89 AST:64 at week 4
I just gave blood for the 12 week labs, and am hoping my ALT/AST are back within normal range. (fingers crossed)
6 month treatment schedule (so I'm halfway there), I started in September.
1 Weekly shot of Peginterferon alfa-2a (13th shot next Thurs)
400MG of Ribovirin 2 times a day
Welbutrin 150MG (for depression) 2 times a day
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.
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.
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.....
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.....
Infected ca 25 years with geno 3a
DX March 2008
treated 32 weeks
stage 0-1, ca 3 months post tx
SVR
DX March 2008
treated 32 weeks
stage 0-1, ca 3 months post tx
SVR
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.
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.
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!
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!
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
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
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!
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!
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!!!
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.
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.
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! :)
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! :)
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.
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.
Genotype 1b
Diagnosed 1995
Liver transplant/Cadaver liver June 2000
Treated 3.5 years Peg/Riba
SVR June 2004
Mike
Diagnosed 1995
Liver transplant/Cadaver liver June 2000
Treated 3.5 years Peg/Riba
SVR June 2004
Mike
geno 1 diagnosed 2006 starting viral load 50,000 week 4 und . on 44 weeks of 48 and struggling true
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
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
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.
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
- 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
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.
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
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