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Party Ride… Roll Call!
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
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
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
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.
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!
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!
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
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
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.
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.
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
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
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