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223152 tn?1346978371

UPDATES FOR THE CHART

My friends.  It has been awhile and I would like to update the stats chart.  For those who don't know, I have been keeping some basic statistics on members who started treatment from about last June forward.  I started keeping stats only on genotype 1s who were doing triple therapy, but it has expanded to everyone.  Many of you have now completed therapy and are still UND.  A few are actually SVR.  

To view these charts - please click on my profile and go to pictures.

If you have started recently and I don't have you down, this is what I want:
Previous treatment info (relapser, break through, nonresponder) and how many treatments
Biopsy results (grade & stage),
Start date
Treatment (type of PI or other)
beginning viral load
all VL results
What has been done for anemia, how low has your hgb gotten
Other severe sx (side effects)
End date
number of tx weeks

35 Responses
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223152 tn?1346978371
I am frijole (bean) and am on week 35 out of 48.  All of my viral loads have been SuperQuant (sensitive to 2) and I have been UND since week 6 - that is after 2 weeks of Victrelis.
Helpful - 0
Avatar universal
Sounds very promising for SVR! Good luck!
Helpful - 0
190885 tn?1333025891
your getting close bean......i'm doing well...going on 6 months post tx...may 7th is hopefully svr and thats it!...nice job on keeping this going during tx....billy
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Avatar universal
Hi Frijole:) thank you so much for doing the charts I really think it is cool for us to see where everyone is at.

so mystarting VL I found out was 18,147 and not 200k like I had thought. und. at weeks 4 and 8. Riba reduced 5th week and again at 9 weeks due to anemia. Transfusion and procrit then as well.
I don't know if you need all that but just in case!
Thanks,
Laura
Helpful - 0
1815939 tn?1377991799
I am not sure you have my last two VL results.

Week 24: UND
Week 28: UND

UND since week 8.
I am finished with 30 weeks. Do my 31st inj. tonight.

While I have had my side effects, just like many/most of us, treatment has really gone quite fast and it has been doable.

I can see the light at the end of the tunnel now!
Helpful - 0
1116669 tn?1269143266
HCV for multiple decades- cirrhotic (compensated although varices have been discerned). Failed mono Interferon and dual Ribo/Interferon over the last 20 years. 8 months through triple (Incivek) therapy: Undetectable at 2-3 weeks this time around and consistently since. Incivek truncated to 9 weeks secondary to rash and (procrit and Ribo reduction notwithstanding) anemia. On the one hand: EVR optimism; on the other: 14% stats for SVR (although I was I believe a partial responder to my previous therapies which might increase my SVR possibility above 14%.......My best. d
Helpful - 0
1995824 tn?1330379049
I sent you a message with all of the information I think you need. Let me know if there is anything else you need.
Helpful - 0
939577 tn?1319636299
Hey ya'll - Had my 3 month post treatment PCR last week and got results this morning

NEGATIVE, <5 NOT DETECTED

Thank you Vertex!!!

Sunny
Helpful - 0
223152 tn?1346978371
I am bumping - we need a lot more input please
frijole
Helpful - 0
Avatar universal
UND at week 4 and 12; lowest HGB 10.9 @ week 6; 11.2 @ week 12.  End date - 12/14/2012 - 48 weeker; partial responder from 2006.

Rash was bad, but became manageable; stopped incivek and stopped rash.  Other sx expected - can be a little crabby; loss of energy; and still have to be careful with diet; more small meals and lots of water.

Other #'s at week 12 lab - ALT - 44, AST 41, Plt 95, ANC 900, WBC 1.9, TSH 1.78, Cr .8, UPIC 6.2.

I actually feel reasonable considering the drugs; still at 600 mg riba.

Thanks for keeping the chart
Helpful - 0
Avatar universal
Hi Frijole,
12 wk und
24 wk und, 36wk breakthur. 38 wk VL 2,000. EOT, Treatment failure!!!
lowest hgb 9, no rescue drugs or transfusions.

Thanks, Linda  (tired turkey update and ending!)
Helpful - 0
Avatar universal
week 4 <43DET nonquantitative, treated with procrit at 5 weeks, riba lowered from 1200 mg to 800 mg.
Helpful - 0
Avatar universal
whoops so out of it forgot the other info you requested started tx march 23,2012
Biopsy results (grade & stage),1,2

Treatment (type of PI or other) pegasys, riba, incivek
beginning viral load 951000
all VL results<43 DET nonquantitative
What has been done for anemia, how low has your hgb gotten 9 after 4 weeks
Other severe sx (side effects) nausea, extreme fatigue, fogginess
End date
number of tx weeks

012, ia
Helpful - 0
Avatar universal
Ahhh, ya makin me work here~ But I love that name, frijole bean, for some reason...I always enjoyed reading your posts, before I joined the forum, because the name was so recognizable.
   Okay, lets see:  I'm genotype 1a, treatment naive. My VL was 700,000, pre-treatment. My biopsy had me at Stage 2 Fibrosis. My platelets were lower than normal range, pre treatment, at 120(000) My AST/ALT was way more elevated then my usual elevations, at 400/500. Oh, also, I have known about the Hep C for 20 yrs.
   So, at 4 weeks I was UND, and my enzymes were back to normal. Fopr some reason, at 8 weeks, my labs didn't show a VL, but my enzymes were still in normal range, so I didn't freak out, but gonna ask my Doc about that tommorow.
   I developed early-onset hemolytic anemia at 6 weeks, my HGB was at 10., at 4 weeks. By 6 weeks, I was having difficulty breathing, and my HGB was 9.9.  It got worse, and at week 8 my HGB was at 9.4, and I recieved my first Procrit shot, a 40,000 unit dose. I have had 3 more since then, and finally managed to get a deep breath, about 2 and a half weeks, after the first Procrit shot~
  Tommorow will be my 11th Inf shot, but my Doc isn't testing my blood, until week 12.
   My other side effects were: the Inf shot makes me tired and achey, the day after, so I take that day to stay in bed, By the next day, I am fine again. The Victrelis gave me "dysgeusia"...I have the worst taste in my mouth, and my teeth tast terrible!
   I also developed a tooth ache, right after the Victrelis was introduced, and my teeth started tasting decayed, and my Doc prescribed Penn VK for it, but it didn't do anything. I think I'm resistant to the Penn VK, so if the pain gets worse, I will ask My Doc to prescribe a stronger Antibiotic, but I'm trying to hold off, to avoid having to take an extra med~
  My psychiatric symptoms started with me coming on here, acting fairly manic, posting too much, etc. Then I developed anxiety, but got over those two symptoms. Simultaneousl, I tend to cry, in the morning, when I'[m at the restaurant, waiting for my eggs to come. (low blood sugar maybe) At night, I feel over-tired, but not sleepy. If people bother me when I'm tired, I can RAGE, but try not to scream, because my throat is sensitive, and prone to getting sore.
   All this from memory, no brain fog here!  Also, congrats on your successful treatment!
Helpful - 0
2114467 tn?1358210256
Yo bean, nice to meet you. I was looking at your charts today, with interest.
Here goes: start date 4/8 with 4 week lead in for boceprevir.
                  Liver status, F0 via the fibrosure test.
                 VL 8.47M on June 2011
                  No previous treatment
                 So far no problems w INF and Riba

Wbcs dropped after 1st week
Hog actually rose a bit
Platelets dropped from 199 to 193  and I keep on swimming! Cheers to you.
Helpful - 0
223152 tn?1346978371
Thanks for all the info.  I wanted to ask if you have had your teeth cleaned regularly as that is usually what gives off that decay smell.  It is recommended to get teeth cleans more often than usual on tx because we lose the saliva in our mouths that in antibiotical.  I just had mine cleaned last week and had 3 gum line fillings done yesterday.  In February while on treatment I had to have a root canal.  Our teeth really take treatment hard.  I have the dysgeusia too - mouth always tastes bad and food tastes bad but, unfortunately, I am still eating -- no weight loss this treatment.

And thanks for the complement on posts.  I have been absent the last month or two but intend to post more now

bean
Helpful - 0
Avatar universal
Hi, Bean. I went and had a filling done, a few days before tx, and had them cleaned a couple months before then.
  But since I am only treating, for another 17 weaks, I was trying to hold off on the cleaning, because my platelets are a bit low, around 90..(huge excuse)..but also, my mouth is sensitive right now, and also, I forgot to include, in my long list of sx, that my tongue is so sore!
  The tooth that hurts(and smells) has always given me trouble...the crown was put in, at Western Dental, and I stopped going to that Clinic. Now I go to my Dads' dentists, and hi is so much better.
  I was just going to try another round of antibiotics, like Amoxicillin though, because my throat and ear hurt, on the same side as the tooth ache....just kind of putting it off (which I always advice new-comers on here NOT to do)
    
Helpful - 0
Avatar universal
*I'm UND still pist tx wk 4
*hgb 9.8
*wbc 3.6-low point 1.8
*Have lost 75% of my hair in the last 6-8 wks w/no end in sight
*thyroid burnt out by Peg-working w/endocrinologist on Synthroid dose-will be on this for the rest of my life. Have lost 9 lbs. gained by this.
* Anemia biggest sx-no rescue drugs, no blodd transfusion-got as low as 8.0
* riba dropped to 600 daily last 4 weeks
*Peg dropped in half .50 due to drop in neutrophis to 715
* *Fainting, dizziness due to low hgb during tx
* Am walking 3/4 mi daily, good nutrition, supplements-no dental  problems from tx
* Going back to work very soon-glad to be healthy and vertical.
Helpful - 0
223152 tn?1346978371
thanks, all. Trying to keep this thread alive to get more people to post so I am bumping to the top
bean
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201379 tn?1319991331
My update: week 17 detectable <43. Week 20 undetectable. Week 24 detectable  <43. We will retest again at 28 weeks using a more sensitive test then determine my path forward. Still using Neupogen weekly. Triple with incivek (finished PI in January).
Helpful - 0
1748829 tn?1338037041
Treatment naive, stage 1 grade 2 started Feb 25 th am using reg social plus Vic. Was under at week 4. And I'm on week 10 right now. No anemia as if yet. Genotype 1a. Hellacious diarrhea and cramps in stomach  is the main stomach. Ill look atviral load my mind is foggy but it wasn't high.
Helpful - 0
1748829 tn?1338037041
Treatment naive, stage 1 grade 2 started Feb 25 th am using reg social plus Vic. Was under at week 4. And I'm on week 10 right now. No anemia as if yet. Genotype 1a. Hellacious diarrhea and cramps in stomach  is the main stomach. Ill look atviral load my mind is foggy but it wasn't high.
Helpful - 0
2114467 tn?1358210256
'morning,
forgot to say that i am 1a.
Helpful - 0
Avatar universal
Frijole!  Great to hear you are still doing this!  I am thankful.  I finished on 12/30/11 and was UND at 12 week post tx.  I do my SVR test at end of June.
Helpful - 0
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