TREATMENT UPDATES

[frijole]

Happy 2012.  I thought I should update the spreadsheets for our treatment statisics.  For those of you who don't know, I have been keeping a spreadsheet since the summer when the protease inhibitors hit the market.  You can view them by clicking on my profile and viewing the pictures.  For the most part this spreadsheet is people doing triple therapy, therefore all genotype 1s.  However if you are in a trial or a different genotype I post that information too.

I would like your pretreatment VL, whether you treated before, and what your status is - relapser, nonresponder, break through, liver biopsy results, start date

Please list all your VL tests and results (not just 2 log drop) and if you are anemic, how low the hemoglobin got and how it is being treated.  What are your side effects, if severe.

If you are already on the spreadsheet, please check it and let me know if any corrections need to be made besides updating.  You wouldn't believe how easy it is to get on the wrong line!

I am frijole
My last Vl was week 12 and it was UND by QuantaSure sensitive to 2.

[candyce1953]

Thank you sooooooooooooo much Frijole for doing this sheet, I find helpful and comforting since I will be starting 3x tx this month!!!!
Wishing everyone a very very Happy and HEALTHY New Year to everyone here!

[pooh55811]

Frijole, you have most of this. The only new data is the 12 week VL and the side effects. (The severe rectal pain was mine, not pjheps.) (Since updating, I also developed the more severe rash and the serious nausea and vomiting.)

Genotype 1 (no sub-type).
Treatment Naive
Viral Load B/4 Treatment: 14,400,000.
Biopsy: Grade 2, Stage 2.
Started Pegasys, Ribavirin, and Incivek on September 26, 2011.

Serious side effects:
*Rectal issues: Hemorrhoids, Burning, Severe Internal Rectal Pain (felt like crapping shards of glass)
*Nausea and Vomiting (Zofran 3 times a day)
*Skin Rash: Moderate (Scale: Med., Mod., Severe) (Fluocinonide Cream, Benadryl at pm,   Zyrtec in am) (Mild skin rash all along but it became much more severe at about week 10)

October 24, 2011 (4 week VL) VL: HCV RNA detected but less than 43 IU ML
November 21, 2011 (8 week VL) VL: HCV RNA undetected
December 19, 2011 (12 week VL) VL: HCV RNA undetected

Thanks for doing these spread sheets. The data looks encouraging. In a year I hope we have all attained SVR.

[sandysf]

Genotype 1a
Treatment Naive
Viral Load B/4 Treatment: 5,800,000.
Biopsy: Grade 0, Stage 1.
Started Pegasys, Ribavirin, on June 7, Victrelis Aug. 1st.  Just ended tx 12/31/11

side effects:
*Hemorrhoids, bloody stools, diarhea occassionally
Headaches, sore throat, dry mouth, metallic taste, cough, loud pounding in head (heartbeat)
Very low ANC (400)  by week 6, weekly neupogen
HGB as low as 9.2, no procrit, reduced riba week 14 to 800 from 1000

UND using Heptimax to 5, since week 7, 12, 16 last VL week 24.  Will do post tx VL on January 26, and then 8,12, 24

[ArthursMom]

Thank you for taking on this project.  It's a great resource.   I'm on the spreadsheet, but, (for some reason) I didn't provide full info, so, here it all is.
Treating w. Incivek
Pre treat VL 6.500.000
1 time prior relapse, 2009
Biopsy 2008 - Stage and grade -  both 0
Start date - 9-29-11
VL results -
week 4 - det. between 2 and 50 (not 250 ; > )
week 8 - UND
week 12 - UND
HGB - holding steady between 10 and 10.5

Worst side effects - fatigue, fogginess, depression
Occasional side effects - rectal burning, overall itchiness, and dizziness, breathless when I exert myself, nausea

[Isobella]

Thank you so much for compiling this data.  I haven't looked at your spreadsheet yet as my treatment time was in 2008/2009, but just reading the posts on this thread has given me such great information for my daughter as she works hard to beat the virus.  She's not a member here, but for the sake of the spread sheet...we can call her Izzy's Kid.

Geno 1a
allele/genotype:  CT
Stage 1, Grade 1 in 2009
Treatment Naive
Triple Therapy w/ Incivek
Treatment Start Date:  11/22/2011
VL @ baseline: 1,839,510
Baseline ALT:  58
Baseline HGB:  14.1

12/20/2011:  4 Week Labs:
VL-Taqman-detectable @25
ALT:  20
HGB:  10.6

6 Week PCR:  pending.

SX:  fatigue, general itchy

Help:  Atarax, but it gives her a 'hangover", 1/2 25mg benedryl, prepH

Help in the wings if needed:  more Atarax, Triamcinolone 0.025% cream and ointment, Proctozone HC 2.5% cream

Thanks, again, frijole!  Wishing you all the best...continued UND all the way to SVR!!!! For us all!!!

Isobella

[pooh55811]

I mentioned the side effects that were giving me quite serious problems and that I am taking meds for to try and control them. (Forgot the severe itching that goes along with the more serious rash.) I did not mention these other side effects because they are just there, LOL, and I cannot do anything about them. I do have quite severe fatigue, some brain fog, total lack of energy and motivation, inability to concentrate, poor appetite with altered taste and change in food preferences.

My hats off to anyone taking these meds who can continue working. There is no way I could continue working. If I do more than 2-3 hours of physical activity which could be doctor visits, shopping, visiting a friend, etc., I develope overwhelming fatigue, nausea, shakiness, to the point where I just must lie down or go horizontal in the recliner.

Incidentally, my case manager (and one of my doctors) said I am their poster child. I would hate to know what the others are going through. I sure don't envy them if I am the poster child. I don't feel much like a poster child. I feel more like something the cat dragged in, LOL.

[Advocate1955]

Thanks for doing this frijole.  

Husband's stats (still working full time, has missed 2 days of work due to side effects (chills/rigors one day, symptoms of anemia another day):

Hep C, Gentotype 1a, diagnosed in 2007

Pre-treatment VL: 290,000

Partial responder to 2 previous therapies (SOC and daily infergen/increased dose of riba-1400)

2 Liver biopsies:  2007, F1-2, mild bridging fibrosis; 2010, F4, beginning cirrhosis

3 ultrasounds: 2007, 2010, and 2011:  small benign cyst on liver, no change

Start date on triple therapy with Incivek:  9/30/11

VL tests and results:  Wk 4=78, Wk 8 = UND, Wk 12 = UND

Anemia:  No, lab tests do not say anemia, but he has symptoms of anemia.  Last hgb was 10.7, last hematocrit was 31 (12/23/11).  His symptoms of anemia include shortness of breath, dizziness, weakness, paleness, cold hands/feet, but this has improved with ending 12 wks of Incivek and dose reduction in riba (1200 --> 800 two weeks ago).

Side effects since treatment started:  fatigue, chills/rigors, itching, nausea (Zofran, ginger), rash with hives/blisters (Atarax, Triamcinolone, Eucerin), anorectal bleeding/pain (Lidocaine, Balneol, Prep H, hydrocortisone)
.
It's a toss up to say which of the side effects have been severe: the chills/rigors were alarming but passed after 4 hrs, the Inc. rash was alarming (it matched the photo marked as moderate) but passed after Week 4, and the anorectal bleeding/pain seems pretty severe and has been present since week 12 but may be improving now at week 14.

Therapy will be 48 weeks, due to partial response to previous treatments in the past as well as Cirrhosis.

Advocate1955

[JasmineT]

Hi frijole!  Please update my 12 week to UND too.  I did not need any rescue drugs and have not had to stop or reduce meds so, although my sx seemed pretty severe to me, I was also my docs poster child and consider my sx to be normal terrible, not severe.

Good to see the numbers.  Thank you again for doing this.

[barmuckity]

Thanks for compiling all of this information.

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 DETt
11/28/11  <43 UND
12/23/11  <43 UND

[fredpacc]

Hi, Just wanted to add my stats for your info - Thanks - Fred



Genotype 1a.
Relapser 7 years ago
Viral Load B/4 Treatment: 8million
Biopsy: Grade 2, Stage 2.
Started Pegasys, Ribavirin, and Incivek on July 7, 2011.

Serious side effects:
*Rectal issues: Hemorrhoids, Burning, Severe Internal Rectal Pain (felt like crapping shards of glass)
*Nausea
Had very bad sides, HGB dropped to 7.4 had Riba dose reduction then stopped Riba completely for almost 3 weeks. Started Procrit and HGB started coming back up and I went back on Riba at a lower dose.
Finished treatment on 12/15/2011 Thank God!
Week 2, 4, 8, 12, 16, 20 and 24 Undetectable

[working dog]

nice work there...

    geno 1a
    vl 10 mil 2/2  cc liver enzymes in the 200s
    start triple incivek 7/11/11
    4 week  <43
    8 week  und
    12 week und incivek stopped 11+ weeks
     19.5 week stopped tx due to eye retina bleeding /cotton wool spots und

  worse sx hgb very low.../ itching /rash / early tx gagging
  4 post blood work good..liver enzymes normal!!









    

[beeblessed]

HUGS Frijole!

You entered my information correctly, so this is just an addition about HGB and side effects:

Lowest HGB 8.3....October 31, 2011 (?)
RIBA reduction/Peg Reduction.....October 26, 2011
Transfusion........December 2, 2011
Procrit..............December 16, 2011
RIBA increase.......December 16, 2011
HGB 11.7........December 22, 2011
HBG 11.3........December 29, 2011

BIGGEST SIDE EFFECTS
Anemia -- Transfusion; Procrit
Nausea -- Zofran; sometimes nothing helps
Vertigo (pre-existing, tx made much worse) -- Bonine; Chiropractic; sleeping with head elevated/chin angled down

[beeblessed]

Oops!  Correction:
Transfusion -- November 2, 2011

[frijole]

Thanks to everyone.  I am going to bump this up to get more data since it will be on page 2 in a heart beat!

Isobella - the best of luck to your daughter.  She had detectible virus at week 4?  That stubborn strain runs in the family, doesn't it?  I will be anxiously looking for those week 6 results.

Hey everybody - you can always pm me too if you don't see your stats updated!

bean

[slideman]

Still und at wk 24!! 3rd wk post tx doing fine!!

[JasmineT]

Just popping this back up to the top in case some folks may have missed it.

[Gerbils]

Excellent work! The list of sides for me is embarrasingly long so I won't review; just wanted to comment on the great job.
There is a lot of hope on those pages!

[starshine1ca]

Thank you frijole for all the energy you are putting into these charts.  So appreciated!  

My first Viral Load  was 7.84+6
Week 4   3.69E+3.   (3.3 log drop)
Week 8    UND
Low Neut #  8.6
HGB 10.6
LKC 1.5

SIDE EFFECTS
Anemia , Trouble breathing, Deep cough, diarrhea, Metallic Taste in Mouth, Tired all the time.

Gerbils, so very true! When you see it all in black and white, there is ALOT of hope!!  

[spyderman370]

frijole-thanks for keeping this up - I think you have my data - this is an update

Drugs: Incivek,RIBA 1200, Pegasys
Pre treat VL 4.600.000
Treatment Naive
Start date - 7-11-11
Week 4 - UND <43
Week 12 - UND <43
Week 24 - UND <43
Geno 1b

Sides: HGB 9.0 Week 11
WBC 2.7 Week 11
Anemia Week 10
Fatigue Week 5
Itching Week 20

Post treatment: 2 weeks - coming back to life....still itching, low WBC, HGB now 11.0

[brianmo]

Thanks again for doing this.

I was UND weeks 4,8,12.

Worse sides...intense itching on scalp that still drives me crazy spite all tx.s I have been doing for it. Itching on skin  with no rash and hgb staying at 9.2 which doctor thinks is great!  Really?   Does not feel great but she does not want to take any action.

Mo

[indy531]

UND for tx wk 12 ; tx wk 16 begins tomorrow. WBC-2.4; HGB 9.6, alt/ast now in center of normal range for 2nd set of labs on liver function. Losing my hair enough to be cutting, no dose reductions on riba or peg, no rescue meds.

[Aquisi]

I finally made the list, thanks frijole, you've put much time effort on this spreadsheet and are truly appreciated.
Start date today. Jan. 6, 2012
Lead-In with P/R then Victrelis
Baseline VL-1709804
Baseline HGN-14.6
Baseline ANC 1.6
Biopsy-Grade 2 Stage 4 cirrhosis
Genotype 1a
First tx 1998 interferon TID for 12weeks, can't remember results.
Second tx 2003 pegasy/riba, quit after 6 weeks, severe depression.

Regards
Charlie

[frijole]

I am kind of disappointed in the turnout so i am bumping this up again.  Maybe someone will see it this weekend and post.  There are only about 19 updates here and we have over 100 on our spreadsheet.  Please pass the word if you have pm contact with others please ask them to post.

Thank you all who have posted.  With the current level of new posts every day, this disappears reallly quickly.

[pooh55811]

I hope more people respond too. I think the spreadsheet is going to be a real boost for all of us on treatment as we see people reaching SVR (and staying that way). We will have our own little set of statistics. Thanks again for doing this.