Post your stats

[frijole]

Back in the early fall I started a spreadsheet on everyone starting treatment, mostly with the triple therapy, since about July.  There are about 85 screen names on it and I have missed many.  when I see people posting their PCRs and bad side effects, I try to get them on my spread sheet but I miss so many.  Can you help me?

This is what I want:
Start date
Whether you treated before or were treatment naive and if before, how many treatments and were you a responder, null responder, or did you have a break through
Are you cirrhotic
If you know your genetic IL28b - CC CT TT
VL at 2,4,6,8,12 - whenever you get it
Victrelis or Incevik or other
If you stopped Incevik early, when
If you had a really bad side effect
Whether you have anemia and have dose reduced, had transfusions, or procrit
Whether you have neuptopenia and have dose reduced or use neupogen

I will try to find a way to post it and keep it updated so we all can look at it somehow.   If nothing else, I can scan it and put it in my pictures.  

frjiole

[Sandcastle808]

start date 04/20/12
Incivik
First time
Cirrhotic
VL w4 -<43, det  w6, 12 and 24 und
anemia - on procrit
Sx on incivik were debilitationg, rash, exhaustion, nausea, inability to eat, depression, crying constantly.
Now, I'm tired a lot, hair is very thin, hgb around 10 with procrit RIBA dose reduced twice.
Over halfway there, I'm hopeful!

[barmuckity]

8 Week update- Reposting numbers -

Started treatment 10/01/11
geno type 1a
liver biopsy 2/3
incivek
2004 relapser
2004  pretx 438000
2004  tx 0
2008  4,031,300
2009  11,495,000
2010  34,238,000  
10/08/11   470 one week
10/28/11  <43 four week det
11/28/11  <43 UND

[spyderman370]

Fantastic data collection. I think you will be able to publish this with some authority in the dummer of 2012 and give some real life resluts of the new tx. BTW, if you like, here is some additional stuff on my line..

Treatment Naive
UND at 12 weeks
Genotype 1b

[Diane1186]

Start date:  October 27, 2011
Treatment:  Naive
Not cirrhotic 
Genotype: 1a
Viral load:  Pretreatment. 3,680,000
Week 1 683
Week 2. 63
Week 3.  47
Incevik

Hgb, WBC, RBC, platelets are dropping.  So far treating with 325 mg iron.  NEU also below normal.  

Rash after 4 days of treatment, cleared up in a week with cortisone creme.

Let me know if you need further info.

[indy531]

8 wk vl, 4 wks of Vic included-UND
Priceless.

[frijole]

Let's not post any more on this thread.  I will start a new one for updates sometime in the first week of December so watch for it.

Thanks, frijole

[scoleman]

Start date:  8/12/11
Treatment naive
Not cirrhotic
IL28b - Unknown
VL at 4 and 14 weeks  UND
Incevik triple treatment
Full 12 weeks of Incivek
Worst side effect - fatigue
Drop in hemoglobin but no medical intervention

Sherry

[lucky1]

update
week 4 UND
week 8 UND
procrit riba reduction to 800

[ceecee444]

If you go to my Journal you will find it all there, if that's a problem let me know and I will post it here.
Thanks

[Johnee1]

Triple Therapy  Incivek

[Johnee1]

Started  10/8/11  1 wk lead w/riba 1200mg per day
VL  11.4m  Had hep c for 30 yrs at least
Treatment Naive
Geno 1a  last biopsy 2002 grade 2 stage 2
4 wk VL 470
8wk  11/28/11
No rescue drugs yet.
Little rash using hydrocortisone 1%
Little unfocused at times but still working 6 days a week.

[pcds]

start date 2/29/11
VL 17,000,000
geno 1, grade 0-1 stage 2
Incevik, Undet 4,8,12
Treated before stopped at 12 wks when still had some VL.  Likely a relapser, did not want extended tx.
No incev rash, Anemia primary problem, procrit, neupogin needed fairly early, transfusion, dose reductions, now on full doses with 6 weeks to go to end.

I hope the doctors we are seeing are doing this.  You can publish!

[1msmagnolia9270]

thank you for doing this--
start date 9/12 (with 1 month lead in)
VL at start-1,000,000
Incivek
genotype 1
grade 2 stage 2
treatment - 4th try---non responder - 35 years have had hep c
VL - week 4 - UND

week 7 -dose reduction of riba -- from 1000 to 600
Started on neupogen 9/13 --  2 X per week
week 8 neupogen  dropped to 1X per week

rash for 2 weeks cleared with hydrocortisone 2.5% after 2 more weeks
anal itching -2 months - cleared after using prep H & using only aveeno to bath
exhaustion (think from meds but better after dose reduction & neupogen 1 X per week
big thing now is I look like I am 9 mo pregnant -- think am lactose intolerant & have been using dairy mostly for 20 mg of fat
red blood is 9.4

[pooh55811]

I am updating my stats:

Start Date: 09/26/11
VL at start: 14,400,000
Incivek
Diagnosed July 2011
Genotype 1
Grade 2, Stage 2
Treatment Naive
VL - week 4 - detectable but under 43 (lowest the lab goes)
VL - week 8 - UNDETECTABLE

Severe internal rectal pain (felt like shards of glass passing).
Severe nausea and some vomiting starting about week 7-8.
Increasing severe fatigue.

[ceanothus]

When I first saw you were doing this I got to work on putting up a journal with the details, but here's a short and simple version:
57 year old female
Genotype 1 HCV
Stage 4 cirrhosis
Non-responder on interferon monotherapy in late 1990's
Slow responder on dual therapy in 2005, eventually UND but relapsed 2006
Now on triple Tx with Incivek, started 9/23/11
Starting VL 9,800,000
2 week VL 236
WBC now 1.4 but Abs. Neut. 650. Will need rescue if it drops below 500
Horrible nausea, but helped by Zofran
Extreme fatigue, slight relief 1x daily with ritalin (was already taking for fatigue before beginning Tx.)

[Bill200]

Lots of UNDs in there!  Nice, very nice.  It would be useful if genotype were included b/c we all know 1 is the hardest to treat.  Most other are basically going to be cured.  The UND rate in the spreadsheet seems to be higher than the avg success rate from trials with Incivek.

[Hatterasman]

start date 11/7/11
Triple w/ Incivek
Naive
grade 1, stage 1
starting VL 1,600,000
a little fatigue, otherwise no side effects, bloodwork OK...so far.

[ArthursMom]

Start date 9-29-11
Relapsed once, 9-2009
Not cirrotic
VL @ 4 weeks 2-50
Incivek
No procrit, neupogen or dose reductions.

[candyce1953]

Wow count me in too
I ,haven't started TX yet

Going for new biopsy in the morning
Last biopsy 3/12 yrs ago was 2/2

Treatment naive
VL current 865,000
g1B/ phenotype TT

Thank you sooooooooo much,

[Livinontheedge]

Fri,  Your welcome to check my trackers and all my information I chart.  Even my journals.   My word what a job you have taken on, good for you for being active in this.    Holler if you have any questions.  
PS,  I did have one more lab done at 10 weeks, which was at the ER.  HMG 11.8   WBC 2.5     No Riba reduction yet.    Just started shot 11 tonight w/ INC.  
Blood Pressure still high

[sherritaylor12]

I'll play...success story and not so successful

Gilead study with soc, GS9190 & GS9256..I 1Took all four drugs and was randomized at 16 weeks to stop treatment, as I was in arm 1

F 63
start date 2/23/11
treatment Naive
Geno 1a
stage 3 fibrosis
no cirosis
vl at baseline 230,00 on 2/23/11
vl on 3/9/11 <25 but detect.
vl on 3/22 - <25 but und
4/25 hemo RBC 9.6, hair falling out, fatigue, rash, weight loss, all bad side effects
6/15 randomized to quit all drugs as still und and in arm 1
as of 11/2/11 still und
Praise the powers that be!

Thank you for all the wonderful information you are getting together for the benefit of others.

Husband was not so lucky.  We believe he received placebo and soc, had to quit at 23 week because of severe side effects and the virus has returned.  We are weighing our option at this point.  He is still recovering from severe side effects and won't consider any further treatment at this time.  Was on same study but probably different arm.  He did go und at approx. two months in, but virus returned in less than a month post treatment.  Please send good vibs his way.

[Gerbils]

Very cool thing to do. Thanks frijole. Here is my info:
Start date: 6/24/11
Treatment naive
Geno:1a
VL: 6.4 mil
Liver biopsy: January 2011, Stage 1 or 2 no cirrohsis
Peg+riba+incivek
Incivek stopped at 9.5 weeks due to severe rash, peg reduction at week 12 to 135ml from180, no riba reduction.
Sides: liver pain, flu symptoms, fever, mouth and nose sores, severe rash, bone pain, hemmoroids, insomnia, nausea, some brain fog at times, mild anemia, fatique-severe at times, out of breath, low neutrophils. No rescue drugs.
I am not in a trial. I was UND at 4,8,12, and 16 weeks. I am on week 20.
Gerbils

[Proactive]

Great job Bean!! Makes the old "72 weeker" thread look like childs play..:*) pro

[Advocate1955]

My husband's stats:

Start date:  9/30/11
Treated 2X prior:  SOC in 2007, daily Infergen injections + Riba in 2010, partial reposnder both times
Diagnosed with beginning Cirrhosis in 2010
Don't know about genetic IL28b
Starting viral load 9/11 was 290,000 (liver had a break during 2010 treatment)
4 week viral load was 78
Currently on Incivek, Riba, and Peg Interferon
Side effects:  fatigue, moderate-severe rash during weeks 1-3, and anal irritation/bleeding
Had red blood count checked today due to shortness of breath from time to time, checking for anemia, don't know results yet
So far, week 6, no reduction in doses
So far, no rescue drugs

Advocate 1955