Updating stats

[frijole]

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.

[1swimmer]

Hey my post went into a black hole... So happy for you. Next stop SVR.
C

[goater]

Congratulations on your great news!!!

[BoceprevirGal]

Also, congrats to JillyBean and HorsePwr, on your 3 months, and keep up the good work, to all who have tried~

[BoceprevirGal]

That is such great news, congrats on yr 3 month Und, Bean!!

[jules2551]

Just saw this and am very happy for you!  Excellent news

[belle19]

bean, that's wonderful news.  i'm so happy for you.  i go for my 6 month test next week.  praying for SVR for all.  best wishes.  belle

[hrsepwrguy]

Congrats bean, that is fantastic news !!!!!!!!!!!

[pooh55811]

Frijole, I am so happy for you. Congratulations!

[frijole]

I am officially UND at 3 months post (QuantaSure).  Of course I still have to wait until the 6 month test, but I cannot remember anyone here UND at 3 mo post, then detectable at 6 months post so I am encouraged.
frijole

[crossroadsec]

Hay Sweet Frijole! Still tracking for us. You're an angel. I'm so glad you kept up w/ mine. I was such a mental mess. lol,
Congrats to all who are still und!
I'm 3 mos UND
6 mos SVR!
Wooohoooooo! It's great to see all the names on your list. Love you for that. Karen:)

[lucky1]

Lucky1 here

You have my other info. 6 month post treatment viral load was UNDETECTABLE!!!

After 40 years of HCV and 2 treatments, finaly free.

God bless you all,

[indy531]

I just found out today that I am SVR!

[frijole]

MIA's
What happened to all of these people?

1msmagnolia9270, start 09/12/11, UND W4
3xlucky (on gilead) starta 11/7/11, vl300 @W12
adamben101 (gilead) start 8/25/11,
ajw78757, start 08/15/11, UND W4
alb572, start 12/23/11, und W4
apophis68 - pulled at W11
aquisi, start 1/6/12, VL51 @W12
arthursMom, start 9/29/11, UND W12
asmile4you, start 08/24/11, VL 456 @W16
B161, start 11/15/11babyjozz, UND W4
barmuckity, start 10/1/11, <43 W24

barry2012,UND W102
beyondmwd, (gilead) start 11/28/11, UND W2
bull68, UND W8
candyice1953, start 1/13/12
ceecee444, UND W16
ClearJake, start 11/11/11, UND W12
Clyde4360, 07/29/11, UND W3
cruelworld, 2/13/11, UND W2
cyn621, 07/15/11, UND W4
dixiechickdana, start7/26/11, VL43 @W4
dn7582 UND W12
dontknowmuchaboutit, 08/15/11, DET W2

donkey2008/ 08/05/11, UND W4
donnieraye, 2/1/12, UND W4

and that is just through the "D's"

I wish people would post and let us know if they quit therapy, finished, failed or succeeded.  IT would be nice to know what the forum success rate is.

I don't read everyday and miss lots of posts so if anyone knows anthing about the MIA's please let me know.  And if you can't read the spreadsheet let me know by message and i will get one to you

thanks, bean

[Jillybean65]

I wish that we could "like" some of these responses as we do on Facebook.  :)

[1swimmer]

Bean,
Thanx, you rock! I think these charts are quite valuable.
C

[frijole]

ginger - got your lovely SVR updated too
swimmer, ironpony, dawn - gotcha

[rockymoe]

I started 9/12/11 was still detected at 12 weeks but low enough to continue. Cleared at 21 weeks. Had to stop at 40 weeks as it was killing me. Detected again at 6 week post treatment.

[frijole]

jillybean - always happy to post an SVR!

hrsepwrguy - good news at 3 mo post.  Can't wait til 6!  Moved back to Texas yet?

piglet - I am very sorry you have had to quit.  Please do post when you have more VL tests.  You can message me to make sure I get the info.  I think it is very important to record results of anyone ending early

coeric - just so grateful to find out you had continued tx.  I thought you quit tx  when you had to stop the INC -- I saw the pictures!  You get the MH award for perserverance.  Thanks for posting your EOT.  Can't wait for the 6 mo.

cthopeforall -- sorry.  I did try but after searching thru 4 pages of your posts and waiting for the 86 post thread to load on my 2003 computer I could not get my mouse to right click and copy/paste your stats.

[Jillybean65]

You can update my stats to:

3 months post - UND
6 months post - SVR!!!!!!

I was a jumping jillybean! lol

[hrsepwrguy]

UND <5 IU/ml at EOT
UND <5 IU/ml at 12 wks 6 days post tx

[piglet222295]

My first tx was 2006interferon abnd ribavirin. No numbers given very sick.  I have autoimmune hep,  hep c,  and cirrhosis.
Treatment unsuccessful due to cirrhosis.
Started triple tx: june 19, 2012
Viral load : 4.5 mill
Geno type 1

48 week tx with
Incivek-12 weeks and pegasys 180 plus 1200 mg ribavirin for 48 weeks
Viral load negative after 4 weeks 8 wks & 12 wks
No rash. However severe ansl itching and like pooping razor blades daily.  Very weak, gained 20 lbs doing the 20 grm of fat 3 x day with pills.
Hemoglobins dropped to 10 then 9 and 8.5 quickly. Started procrit. Not much help first few times.went to hosp sept 5 for passing blood Had transfusuion sept 7.
Rest of sept I fought headaches and nose bleeds fatigue loss of appetite, muscle weakness not able to function, couldn't even do laundry at home I have been pretty sick. Oct 2 got bad headache lasted too long. Went back to hospital on October10. Had worst migraine of my life, I spent 11 days in the hospital on painkillers and 1/2 dose of riba.  I ended treatment on oct 17,2012. . my body cannot take the treatment I have been too sick. Nuerologist said I had to quit tx I couldnt handle 8 more months of it.
I can only hope that my virus stays gone, but for now I'm just praying to get my strength back. Doctor said it could take a couple of months to get back to normal from being on the meds. I hope they new treatment comes out that I am able to do. maybe something will come along that isn't a year of my life to try. I have missed so much a regular life I could not even go to the grocery store by myself. Please sign the treatment that's quicker and to the point

[coeric]

opps brain fog again,  discontinued incevik at week 10.  at week 10 dose reduction in pegasys to 90mcg. at week 11 dose reduced peg to 45mcg and ribavirin to 600mg from 1000mg.  prednisone added from week 11 until week 16. at week 20 peg increased to 135mcg and riba to 600mg . at week 41 ribavirin was increased to 700.  at week 45 peg was reduced to 45mcg and ribavirin to 200mg.
eric

[cthopeforall]

Hi frijole, please look at my post Feb 28 2012. If you need more info please let me know. Thank you so much for all your hard work. CT

[coeric]

opps. forgot to mention UND at week 48.