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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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2062453 tn?1350332942
Hi Bean: Thanks again for all the effort it takes to develop and maintain your charts! Please change my treatment start date to 10/24/2011, change R2 to BT1 and R1, and add UND to treatment week 24. Cheers, GB
Helpful - 0
Avatar universal
Hi frijole,
Ooops, I need to make a correction to my post to this thread on 4/26/12.  My husband discontinued treatment on 4/13/12, not 3/13/12.  My error.
Advocate1955
Helpful - 0
Avatar universal
Just bumping this up for you.
Advocate1955
Helpful - 0
Avatar universal
6 month post tx pcr april 13th  undetected...woohoo  SVR  
Helpful - 0
1746242 tn?1318209702
I will get them to you after my next appointment. I had my third transfusion yesterday, My hgb was 8.5. This dip was the worst. I was having dizzy spells and fell like 5 times my knees would just buckel and boom. Well bean we are almost there and onto to SVR!
Helpful - 0
Avatar universal
Hi Bean, hope your feeling fine. I just finished week 16, wanted to update. VL at week 12 was 51. Need an UND for week 24 to keep going. Still on Neup and Procrit. Thanks
Helpful - 0
1995824 tn?1330379049
My start date was 1/13/2012, not 11/15/11. I had my Pre-treatment bloodwork in November.
Helpful - 0
Avatar universal
Husband's update:  UND at week 16.  All labs very close to normal range, except liver enzymes, which have remained elevated.  Currently on week 22 of 24 total.
Helpful - 0
Avatar universal
Hi frijole,
You have my husband's previous data.
His VLs were:
week 16:  DET<12
week 20: DET<12
week 24:  DET=22
All tests were done with the Abbott (LOQ and LOD <12)
Treatment failure (triple w Inc), stopped treatment on 3/13/12.
No significant side effects during weeks 16-24, other than fatigue.

Advocate1955
Helpful - 0
317787 tn?1473358451
Dear Dean, so nice of you to keep track, I think you have everything however I am UND at 8 weeks and will be getting new blood work soon
Helpful - 0
2004810 tn?1365153611
Thanks for the chart -

I'm gonna take shot 17 tomorrow.
Week 4: detectable
week 8: UND
week 12: UND

Still strugling with anemia. Have had 4 transfusions til now, no rescue drugs, no reduction on the meds so far. First half of treatment went "well", but the last weeks have been harder. No more energy, hair loss has increased. I feel like a whimp when I know that you are going for 48 weeks...you are a tough one :) and an inspiration.

Thanks again for making the chart :)
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
2114467 tn?1358210256
'morning,
forgot to say that i am 1a.
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
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
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
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
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
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
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
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
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
week 4 <43DET nonquantitative, treated with procrit at 5 weeks, riba lowered from 1200 mg to 800 mg.
Helpful - 0
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