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223152 tn?1346981971

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.

38 Responses
223152 tn?1346981971
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....
1815939 tn?1377995399
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.  
  
Avatar universal
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.

Avatar universal
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
2114467 tn?1358213856
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)
2114467 tn?1358213856
Oh yah, that's 28 weeks, total.
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