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

[frijole]

I will start

start date 08/26/11
Victrelis
Relapser
Cirrhotic
VL w4 -3920, w6- UND, w8 -UND
anemia - on procrit

[hrsepwrguy]

SD 8/24/11
INC
naive
Batts grade3 act 2
VL det 7.1 - 43 wks 4 and 6 skipped 8(no bearing on lenth of tx)
Nausea worst side but no major sides (blood levels low but stable)

[coeric]

start date 9/27/11
incivik
Naive
cirrhotic
VL w4 <18 UND  w5 <7.1 UND
itch, fatigue, no rescue drugs or dose reduction, yet.

[pooh55811]

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

Severe internal rectal pain (felt like shards of glass passing). Started about 4 days into treatment, peaked, subsided about 6 days later. Returned last week and has now subsided again. (This pain is well beyond the "discomfort" the literature states as a side effect. I broke out in a cold sweat and thought I would pass out, and I am a pretty tough person.) Hope that is not TMI, LOL.)

I included my starting VL because it might be interesting to know how many people with high VL get to SVR.

[toby47]

start 7/27/11
Inc
naive
2--1
Vl wk4 und, wk8 und,wk12 und
anemia-procrit,
neuptopena--lukine and neupogen
Sx--Fatigue,itching,swollen saliva glands,lymph nodes,ongoing rash ,something different everyday except for plague of locusts.

[coeric]

start date 9/27/11
incivik
Naive
cirrhotic
starting VL 2,740,000
VL w4 <18 UND  w5 <7.1 UND
itch, fatigue, no rescue drugs or dose reduction, yet.  
i forget to mention edema in lower legs.

[hrsepwrguy]

Starting VL 14.2 mill

[sandysf]

Love this!

Start date 6/7/11
Victrelis (but unusual because I didn't start Vic until week 8)
Naive
Geno 1a
Stage 0-1
Starting VL 6 million
VL week 4,  453, week 7 UND, wk 12 UND, week 20 UND
neutropenic at week 6,  neupogen weekly since then
Lowest hgb 9.2, dose reduced to 800 mg at week 14
fatigue, fatigue, fatigue, chest pains

[sandysf]

Oh, I am a CT

[SunShineGirlie]

start date August 10 2011
Incevik (if had to do it over would go with VIC)
starting VL 24,000 relapser - 48 weeks of SOC previously
Geno 1A - IR, FL, TT
week 4 false positive, week 8 Neg, waiting for week 12 results
Riba reduced to 800, severe anemia, Procrit 2x/week lowest hemo 9.0
Been off of INC for about a week, first couple days felt great, starting to get itchy over 30% of my body (which is weird because I never got the rash while on INC)
gained 8.5 pounds while on the PI working on loosing it
will do 24 weeks in total

[SunShineGirlie]

forgot to add stage 2 grade 2

[KBFILLY]

   Start date 11/04/20//11

    Second time around (2006) Relapsed

    Interferon, Ribi and  Incivek

    viral load 9 million

    Geno type 1

    Stage 2 fibrosis

[slideman]

Started 7-1-11
2nd time, first time 2001- no vl test until 7months, showed virus. doubled int 10 mths und- relapsed
7-1-11 triple with Inc- 4wks und, 12 wks und
vl 1,300,000 at start
grade 1.5 stage 2
geno 1a
TT
Itching, nausea, insomnea, brain fog

[Louie723]

Start date 10/7/11
SOC
Treatment Naive
Geno 2b
Fibrosis F1-F2
Starting VL 3 million
fatigue, tingling hands, borderline anemia

What is the doorprize??

[TripleCrown]

Start august 26
4 weeks pegasys and 1000mg RIBA
Vl 4.9 million
1a TT
grade 1 stage 1 via biopsy 2006
Started victrelis week 4 (vl >7500)
week 8 undetected
9.1 HGB started procrit week 9
Sx include: fatigue , bad taste, rash, sore throat, ear ache, swollen glands, headache, hot flashes, chills, weight loss, hair loss, shortness of breath. Mostly minor to moderate.

[TripleCrown]

Treatment naive
RIBA reduced 2x 200mg each. Now on 600 per day.
Good idea bean!

[brianmo]

Sept 22,2011
Geno type 1a
Tx naive
Genetic  cc
VL start 222,000
UND week four
Grade 2/2
Victrilis at four weeks
Now at 7th week
Tired, no help drugs yet, dizzy, rapid HR
Having a relationship with Netflicks

[indy531]

SD 9/23/11-triple
gt1a, tx naive
stage 0,grade3
vl 7500 baseline
5wk PCR less than 43, but not UND
Victrellis at 4 wks
last hgb 10.8 from 15.5 baseline, wbc/rbc-low, but no rescue drugs
fatigue, rash, bad metallic taste/dry mouth, riba cough
I don't have blood, I have pharmacopia Kool-Aid running thru my veins.

[katla]

I can't thank you enough for this initiative. I have a bad memory and it would be so helpful when reading the posts here to have context/background.

Thanks again!

[working dog]

first tx..
2/2 1a
vl 10 mil
triple/incivek/riba/interferon
started tx 7/11/11
after two weeks hgb drop from 15 to 9.9
third week hgb to 8.3
4th week <43...w/bad sx..rash ...low hgb...  
procrit started 5th week
und 8 weeks
lot of bad sx...
11 weeks 2 days stopped incivek...
hgb tanked to 7s in 13 weeks
transfusion..back to 9.2
soc till week 17
stopped riba hgb tanked
shot 18...hope to start riba in two days....billy

[flcyclist]

Started 4/22/2012
trt naive
geno 1a
baseline VL - 24,179 UND at 4, 12, 24
SOC – Pegasys (180 mcg/wk), Ribavirin (1200 mg/day)
issues with rash early, now controlled.
neuptopenia – neupogen since week 8
No dose reductions
Week of trt planned - 48

Nice job frijole, hope you get a good response ;)  And you deserve 3 extra gold stars for taking on this task :o))

[JAY0914]

first tx
1/2 1a
vl 1900  highest its ever been was 9k
started Inc trial 05/13/11  2 x day dosing
ended 10/28/11
had minimal side effects...
undetected 4  8  12  24

[belle19]

start date 6/24/11
gt1a, naive
vl 748,000
grade 2/ stage 2 (liver biopsy 6/17/11)
soc w/gs-9451 (double-blind trial so could be placebo.  i'll know @ 24 weeks)
wk 4- 78, week 8 - <25, week 12 - UND, week 14 - UND
week 4 hgb 9.7 lowered riba to 800 , week 8 hgb 10.6
mild sx, except rash on my back and tired 2 days after shot, hair loss
shot 20 and i'm doing okay
thanks for doing this.  best wishes.   belle

[JasmineT]

Great idea!

Start: 08/19/2011
Naive
Geno 1b
Stage 1, Grade 2
Incivek
Started with low viral count, around 164k
Week 4 UND
Week 8 UND
Exhaustion, fog, dizziness, manageable itch, dry eyes, aches, getting by no rescue drugs or reduced dosage yet
IL28B unknown