Aa
Updating stats
As many of you know, I have kept statistics on members treating, primarily with triple therapy, since the PI's were put on the market in May, 2011. You can view these stats in pictures in my profiles. I am hoping that a lot of people will see this post and update their stats. A lot of the 24 week'ers are getting their 6-month post results now and I have recorded what I see the posts Pooh helps tremendously, or I would miss a lot.
Unfortunately I have not been diligent about members who started in 2012. I have a few listed who started in the beginning of the year, but that is all. Unfortunately, there are tons of people who I put on the list and dropped off the radar that I wonder what happened to. I would love anyone to post their stats, good, bad or ugly so we have a record. We have more members here than individual doctors have and I think it is important for us to see the successes and failures.
I would like to add people to the list, but only if they are through or almost through or have had to terminate treatment early.
This is what I need:
Genotype, name of PI, start date, pretreatment VL, # of previous treatments & whether you relapsed, had a breath through, were a nonresponder, or a partial responder, the state of your liver (grade and stage), and if you had an IL28B test, the results of that.
During treatment I need the results of your VL test, and, if you had the standard HCV RT PCR <25 test, whether is actually said the wording "UNDETECTABLE." I also would like to know your lowest HGB and whether you had any dose reductions or rescue drugs. YOu can add anything else about sx but as you can see by the spreadsheet, I only have limited space.
Unfortunately I have not been diligent about members who started in 2012. I have a few listed who started in the beginning of the year, but that is all. Unfortunately, there are tons of people who I put on the list and dropped off the radar that I wonder what happened to. I would love anyone to post their stats, good, bad or ugly so we have a record. We have more members here than individual doctors have and I think it is important for us to see the successes and failures.
I would like to add people to the list, but only if they are through or almost through or have had to terminate treatment early.
This is what I need:
Genotype, name of PI, start date, pretreatment VL, # of previous treatments & whether you relapsed, had a breath through, were a nonresponder, or a partial responder, the state of your liver (grade and stage), and if you had an IL28B test, the results of that.
During treatment I need the results of your VL test, and, if you had the standard HCV RT PCR <25 test, whether is actually said the wording "UNDETECTABLE." I also would like to know your lowest HGB and whether you had any dose reductions or rescue drugs. YOu can add anything else about sx but as you can see by the spreadsheet, I only have limited space.
To start it off, I will say that I was UND at 9 weeks post treatment.
I forgot to mention above I also want to know the number of weeks of treatment....
I forgot to mention above I also want to know the number of weeks of treatment....
Genotype 1
Liver Biopsy: Grade 2 Stage 2 (Sept. 2, 2011)
Treatment Naive
Pretreatment VL: 14,000,000 (July 7, 2011)
Tx Drugs: Interferon, Riba, Incivek (48 weeks)
Tx Start Date: Sept. 26, 2011
Tx Stop Date: Aug. 25, 2012
Viral Loads:
All of my Viral Loads except the last one were done using the test that quantifies down to 43.
Week 4: HCV RNA <43 Detectable
Weeks 8, 12, 16, 20, 24, 28, 32, 36: (All) HCV RNA <43 Undetectable
Week 48 (EOT): Undetectable with the Hepatitis C Viral RNA, Quantitative TMA (lower limit of detection is <5)
My 12 week VL wil be Nov. 19th
Worst Side Effects: Bad Rash, Nausea, Anal/Rectal Problems (crapping shards of glass)
Lowest Hgb. 10.2. No dose reductions. No rescue meds. No transfusions.
Although I was told at Tx start that I would be given rescue drugs for low Hgb if needed, when my Hgb actually did drop and I asked them to get organized in case I needed Procrit, they said they do not give Procrit. They said they would dose reduce by half (1200 mg to 600 mg.) instead of giving Procrit. (I fired that doctor.)
I went straight home and within an hour I booked an appointment with a new Hepatologist in a larger city. That Hepatologist gives Procrit.
There is no way I would ever reduce my Riba in half, maybe 200 mg less, but never in half.
Liver Biopsy: Grade 2 Stage 2 (Sept. 2, 2011)
Treatment Naive
Pretreatment VL: 14,000,000 (July 7, 2011)
Tx Drugs: Interferon, Riba, Incivek (48 weeks)
Tx Start Date: Sept. 26, 2011
Tx Stop Date: Aug. 25, 2012
Viral Loads:
All of my Viral Loads except the last one were done using the test that quantifies down to 43.
Week 4: HCV RNA <43 Detectable
Weeks 8, 12, 16, 20, 24, 28, 32, 36: (All) HCV RNA <43 Undetectable
Week 48 (EOT): Undetectable with the Hepatitis C Viral RNA, Quantitative TMA (lower limit of detection is <5)
My 12 week VL wil be Nov. 19th
Worst Side Effects: Bad Rash, Nausea, Anal/Rectal Problems (crapping shards of glass)
Lowest Hgb. 10.2. No dose reductions. No rescue meds. No transfusions.
Although I was told at Tx start that I would be given rescue drugs for low Hgb if needed, when my Hgb actually did drop and I asked them to get organized in case I needed Procrit, they said they do not give Procrit. They said they would dose reduce by half (1200 mg to 600 mg.) instead of giving Procrit. (I fired that doctor.)
I went straight home and within an hour I booked an appointment with a new Hepatologist in a larger city. That Hepatologist gives Procrit.
There is no way I would ever reduce my Riba in half, maybe 200 mg less, but never in half.
Genotype 1a
Pegasys, Riba 1200mg, Victrelis (48 weeks)
Start date: Oct 30, 2011
Finish date: Sep 29, 2012
Pre-tx viral load: 824,711
IL28B subtype not done
Previous tx: 2006 for 48 weeks, non-responder
Liver condition: Cirrhosis. Dx'd on hospital admission for variceal hemorrhage in 2005. No Bx done.
Viral testing done with Roche <43 sensitivity.
Week 4: Detected, 0.8 log drop
Week 8: Detected with Quant <100
Week 12: Detected (Qual) and Undetected (Quant)
Week 24: Undetected
Week 48: Undetected one week post EOT
Will get post 3 month PCR around January and 6 month in April.
Sides:
I had no dose reduction this round of treatment. I had persistant neutropenia and anemia for most of treatment. To avoid reduction I began Neupogen at week 12 and Procrit at week 16. By week 21 we'd bumped the Procrit to 60,000u weekly and Neupogen to x3 weekly. With this combination my Hgb stayed in the mid 9's-low 10's and ANC stayed between 0.3-0.7.
Had significantly more nausea and poor appetite than with previous treatment.
This may be of interest to others starting Victrelis. On my previous tx with SOC the Hgb remained in the low 11's without rescue meds but I was only taking 1000mg of Ribavirin. This round we'd bumped the Riba to 1200 and of course added the Victrelis. Beginning weight both times about 160 lbs. Thanks for all the effort you've been putting into these stats, marty.
Pegasys, Riba 1200mg, Victrelis (48 weeks)
Start date: Oct 30, 2011
Finish date: Sep 29, 2012
Pre-tx viral load: 824,711
IL28B subtype not done
Previous tx: 2006 for 48 weeks, non-responder
Liver condition: Cirrhosis. Dx'd on hospital admission for variceal hemorrhage in 2005. No Bx done.
Viral testing done with Roche <43 sensitivity.
Week 4: Detected, 0.8 log drop
Week 8: Detected with Quant <100
Week 12: Detected (Qual) and Undetected (Quant)
Week 24: Undetected
Week 48: Undetected one week post EOT
Will get post 3 month PCR around January and 6 month in April.
Sides:
I had no dose reduction this round of treatment. I had persistant neutropenia and anemia for most of treatment. To avoid reduction I began Neupogen at week 12 and Procrit at week 16. By week 21 we'd bumped the Procrit to 60,000u weekly and Neupogen to x3 weekly. With this combination my Hgb stayed in the mid 9's-low 10's and ANC stayed between 0.3-0.7.
Had significantly more nausea and poor appetite than with previous treatment.
This may be of interest to others starting Victrelis. On my previous tx with SOC the Hgb remained in the low 11's without rescue meds but I was only taking 1000mg of Ribavirin. This round we'd bumped the Riba to 1200 and of course added the Victrelis. Beginning weight both times about 160 lbs. Thanks for all the effort you've been putting into these stats, marty.
Hi frijole,
I don't know if your spread sheet expands to show more than what printed, but in my husband's case, tx was discontinued on April 12, 2012, week 28 of triple tx w Inc., due to viral breakthrough. Everything else in your chart for my husband is accurate.
Advocate1955
I don't know if your spread sheet expands to show more than what printed, but in my husband's case, tx was discontinued on April 12, 2012, week 28 of triple tx w Inc., due to viral breakthrough. Everything else in your chart for my husband is accurate.
Advocate1955
Genotype 1a
Confirmed w/ VL of 8.47 M, June 2011
Tx. Inf.,ribavirin 1000 and victrellis
No biopsy
Fibrosure showed F0
Tx. Naive
Tx. Start date: April 8, 2012
Tx. Stop date: Oct. 20, 2012
Viral load at week 4= 9020
Added Vic
Week 8: UND
Week12: UND
Week 24: UND
CT
Had no dose reductions.
Added procrit when hgb was at 9.6
Post tx. VL will be in January 2013 (12 week post)
Confirmed w/ VL of 8.47 M, June 2011
Tx. Inf.,ribavirin 1000 and victrellis
No biopsy
Fibrosure showed F0
Tx. Naive
Tx. Start date: April 8, 2012
Tx. Stop date: Oct. 20, 2012
Viral load at week 4= 9020
Added Vic
Week 8: UND
Week12: UND
Week 24: UND
CT
Had no dose reductions.
Added procrit when hgb was at 9.6
Post tx. VL will be in January 2013 (12 week post)
swimmer - wow - yesterday was your EOT. You should ace those labs. Your numbers look good. Wise choice using VIC (ha ha - I am partial)
advocate - thanks, I added the BT and the weeks
pooh - got you all updated and thanks for all your help with this
goater - thank you thank you. You are added. I may not get it posted for a week or so, but you are on there. i wish you lots of luck You have only been UND for 36 weeks. I hope that will be enough. What was your 4 week VL in numbers? I don't think it was an 8-log drop because a 5 log drop would be a VL of 8. Oh wait a minute - I jsut re-read- you had a .8 log drop- so what was that, about 65,000?
Anybody else, pretty please?
advocate - thanks, I added the BT and the weeks
pooh - got you all updated and thanks for all your help with this
goater - thank you thank you. You are added. I may not get it posted for a week or so, but you are on there. i wish you lots of luck You have only been UND for 36 weeks. I hope that will be enough. What was your 4 week VL in numbers? I don't think it was an 8-log drop because a 5 log drop would be a VL of 8. Oh wait a minute - I jsut re-read- you had a .8 log drop- so what was that, about 65,000?
Anybody else, pretty please?
Just wondering, Marty, did you have a VL at week 16 or week 20 of treatment?
You were still DET at week 12 (but below limit of quantification). It would have been nice to know when you became UND (week 16 or week 20, or week 24). It would not change anything, but you would know.
That was a smart move on your part to get ahead of the blood count problems. Plus, I think upping the Riba was a smart move. In your shoes, I would have done the same thing.
You were still DET at week 12 (but below limit of quantification). It would have been nice to know when you became UND (week 16 or week 20, or week 24). It would not change anything, but you would know.
That was a smart move on your part to get ahead of the blood count problems. Plus, I think upping the Riba was a smart move. In your shoes, I would have done the same thing.
Hi Frijole,
I think you last had that I was UND at 4 weeks and I was also UND at weeks 8 and 12 and 24. I completed treatment and my 3 month VL is on Oct 29th.
As far as tx sides went..anemia was the biggest issue. No helper drugs and 2 transfusions.
Thanks!
I think you last had that I was UND at 4 weeks and I was also UND at weeks 8 and 12 and 24. I completed treatment and my 3 month VL is on Oct 29th.
As far as tx sides went..anemia was the biggest issue. No helper drugs and 2 transfusions.
Thanks!
Ironpony - good luck on that draw in a few days. You should do fine.
goater - sorry - I should have said you have only known that you have been UND for 24 weeks. I agree with Pooh that increasing the riba and avoiding
dose reduction was smart.
goater - sorry - I should have said you have only known that you have been UND for 24 weeks. I agree with Pooh that increasing the riba and avoiding
dose reduction was smart.
Frijole,
I also think my last, well only status, was that I was UND at week 4. I was also UND at week 12 and at eot 24 weeks. I completed treatment on Aug 7th. My 12 week post VL will be Nov 12th.
My hgb was in the low 9's for a few weeks, my lowest hgb was 9, no dose reduction and no rescue drugs.
I also think my last, well only status, was that I was UND at week 4. I was also UND at week 12 and at eot 24 weeks. I completed treatment on Aug 7th. My 12 week post VL will be Nov 12th.
My hgb was in the low 9's for a few weeks, my lowest hgb was 9, no dose reduction and no rescue drugs.
Frijole,
Beginning VL was 824,711 and was 156,000 at 4 weeks. I believe that is about a drop of 0.81 but that differs from the log printed on my labs. The difference of those two numbers come to a .73 drop.
I would have preferred a 1-log or greater response during the lead in and a faster UND than 24 weeks but it just wasn't to be. Thanks for the well wishes and I'll let you know the results of the post 12 week PCR.
Best wishes to you too, great news on your post 9 week UND. Will you get another PCR between now and your post 24 week?
Pooh,
Thanks and no we didn't do any PCR's between weeks 12 & 24. I too wondered what was going on during that period but was very grateful to have beaten the futility rule at 24 weeks and of no break through at EOT.
I looked at this opportunity to treat again as a gift and don't believe that I could have done anything more to improve the odds for an SVR. Whether this has been successful or not is way out of my hands and I take a lot of comfort in not having to worry about it.
Best wishes to you too on November 19th.
Beginning VL was 824,711 and was 156,000 at 4 weeks. I believe that is about a drop of 0.81 but that differs from the log printed on my labs. The difference of those two numbers come to a .73 drop.
I would have preferred a 1-log or greater response during the lead in and a faster UND than 24 weeks but it just wasn't to be. Thanks for the well wishes and I'll let you know the results of the post 12 week PCR.
Best wishes to you too, great news on your post 9 week UND. Will you get another PCR between now and your post 24 week?
Pooh,
Thanks and no we didn't do any PCR's between weeks 12 & 24. I too wondered what was going on during that period but was very grateful to have beaten the futility rule at 24 weeks and of no break through at EOT.
I looked at this opportunity to treat again as a gift and don't believe that I could have done anything more to improve the odds for an SVR. Whether this has been successful or not is way out of my hands and I take a lot of comfort in not having to worry about it.
Best wishes to you too on November 19th.
Genotype, name of PI, start date, pretreatment VL, # of previous treatments & whether you relapsed, had a breath through, were a nonresponder, or a partial responder, the state of your liver (grade and stage), and if you had an IL28B test, the results of that.
1a, incevik, 9/27/11 to 8/27/12, 2,740,000, no previous tx, grade 3 stage 4, CC, UND at weeks 4, 12, 24 and 24
Bean, thank you for all your time and effort,
eric
1a, incevik, 9/27/11 to 8/27/12, 2,740,000, no previous tx, grade 3 stage 4, CC, UND at weeks 4, 12, 24 and 24
Bean, thank you for all your time and effort,
eric
Hi frijole, please look at my post Feb 28 2012. If you need more info please let me know. Thank you so much for all your hard work. CT
opps brain fog again, discontinued incevik at week 10. at week 10 dose reduction in pegasys to 90mcg. at week 11 dose reduced peg to 45mcg and ribavirin to 600mg from 1000mg. prednisone added from week 11 until week 16. at week 20 peg increased to 135mcg and riba to 600mg . at week 41 ribavirin was increased to 700. at week 45 peg was reduced to 45mcg and ribavirin to 200mg.
eric
eric
My first tx was 2006interferon abnd ribavirin. No numbers given very sick. I have autoimmune hep, hep c, and cirrhosis.
Treatment unsuccessful due to cirrhosis.
Started triple tx: june 19, 2012
Viral load : 4.5 mill
Geno type 1
48 week tx with
Incivek-12 weeks and pegasys 180 plus 1200 mg ribavirin for 48 weeks
Viral load negative after 4 weeks 8 wks & 12 wks
No rash. However severe ansl itching and like pooping razor blades daily. Very weak, gained 20 lbs doing the 20 grm of fat 3 x day with pills.
Hemoglobins dropped to 10 then 9 and 8.5 quickly. Started procrit. Not much help first few times.went to hosp sept 5 for passing blood Had transfusuion sept 7.
Rest of sept I fought headaches and nose bleeds fatigue loss of appetite, muscle weakness not able to function, couldn't even do laundry at home I have been pretty sick. Oct 2 got bad headache lasted too long. Went back to hospital on October10. Had worst migraine of my life, I spent 11 days in the hospital on painkillers and 1/2 dose of riba. I ended treatment on oct 17,2012. . my body cannot take the treatment I have been too sick. Nuerologist said I had to quit tx I couldnt handle 8 more months of it.
I can only hope that my virus stays gone, but for now I'm just praying to get my strength back. Doctor said it could take a couple of months to get back to normal from being on the meds. I hope they new treatment comes out that I am able to do. maybe something will come along that isn't a year of my life to try. I have missed so much a regular life I could not even go to the grocery store by myself. Please sign the treatment that's quicker and to the point
Treatment unsuccessful due to cirrhosis.
Started triple tx: june 19, 2012
Viral load : 4.5 mill
Geno type 1
48 week tx with
Incivek-12 weeks and pegasys 180 plus 1200 mg ribavirin for 48 weeks
Viral load negative after 4 weeks 8 wks & 12 wks
No rash. However severe ansl itching and like pooping razor blades daily. Very weak, gained 20 lbs doing the 20 grm of fat 3 x day with pills.
Hemoglobins dropped to 10 then 9 and 8.5 quickly. Started procrit. Not much help first few times.went to hosp sept 5 for passing blood Had transfusuion sept 7.
Rest of sept I fought headaches and nose bleeds fatigue loss of appetite, muscle weakness not able to function, couldn't even do laundry at home I have been pretty sick. Oct 2 got bad headache lasted too long. Went back to hospital on October10. Had worst migraine of my life, I spent 11 days in the hospital on painkillers and 1/2 dose of riba. I ended treatment on oct 17,2012. . my body cannot take the treatment I have been too sick. Nuerologist said I had to quit tx I couldnt handle 8 more months of it.
I can only hope that my virus stays gone, but for now I'm just praying to get my strength back. Doctor said it could take a couple of months to get back to normal from being on the meds. I hope they new treatment comes out that I am able to do. maybe something will come along that isn't a year of my life to try. I have missed so much a regular life I could not even go to the grocery store by myself. Please sign the treatment that's quicker and to the point
You can update my stats to:
3 months post - UND
6 months post - SVR!!!!!!
I was a jumping jillybean! lol
3 months post - UND
6 months post - SVR!!!!!!
I was a jumping jillybean! lol
jillybean - always happy to post an SVR!
hrsepwrguy - good news at 3 mo post. Can't wait til 6! Moved back to Texas yet?
piglet - I am very sorry you have had to quit. Please do post when you have more VL tests. You can message me to make sure I get the info. I think it is very important to record results of anyone ending early
coeric - just so grateful to find out you had continued tx. I thought you quit tx when you had to stop the INC -- I saw the pictures! You get the MH award for perserverance. Thanks for posting your EOT. Can't wait for the 6 mo.
cthopeforall -- sorry. I did try but after searching thru 4 pages of your posts and waiting for the 86 post thread to load on my 2003 computer I could not get my mouse to right click and copy/paste your stats.
hrsepwrguy - good news at 3 mo post. Can't wait til 6! Moved back to Texas yet?
piglet - I am very sorry you have had to quit. Please do post when you have more VL tests. You can message me to make sure I get the info. I think it is very important to record results of anyone ending early
coeric - just so grateful to find out you had continued tx. I thought you quit tx when you had to stop the INC -- I saw the pictures! You get the MH award for perserverance. Thanks for posting your EOT. Can't wait for the 6 mo.
cthopeforall -- sorry. I did try but after searching thru 4 pages of your posts and waiting for the 86 post thread to load on my 2003 computer I could not get my mouse to right click and copy/paste your stats.
I started 9/12/11 was still detected at 12 weeks but low enough to continue. Cleared at 21 weeks. Had to stop at 40 weeks as it was killing me. Detected again at 6 week post treatment.
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