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223152 tn?1346981971

TREATMENT UPDATES

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.

54 Responses
Avatar universal
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!
1815939 tn?1377995399
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.
Avatar universal
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
665963 tn?1360727154
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
412873 tn?1329178055
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
1815939 tn?1377995399
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.
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