UPDATES, ANYONE?

[frijole]

I think I pretty much lost February into anemia, but I seem to be coming out of it and would really like to try to update the chart. For those who don't know, I started a chart, mostly of triple treaters in the summer.  You can go to my profile and they are in pictures.  I hope everyone can look to see where I was and update me from there.

If you aren't on the chart, please post in this thread --
  Beginning vl
  Liver biopsy result (grade and stage)
  Previous treatment info (responder relapser, nonresponder...) and how many times you treated
  Start date
  Which PI - victrelis or incevik  
  Results of each VL test on treatment
  What has been done for anemia
  Really bad side effects
  If not geno 1, what geno?
  If not on triple, what are you doing/

I know a lot of the summer starters have finished now.  If they don't post and you know how they did at EOT.  I don't think we have any official SVR's  yet, but I hope you will all post those results when you get them or send me a message or a note down the road.  I am going to try to keep this up.  I will be on treatment until July 26, so I will be around.  

bean

[frijole]

Thank you one and all.  Don't post any more to this thread as I will probably not be able to find it.  I will start a new one in a few weeks.  Getting ready to upload now
bean

[MsDragonSlayer]

geno type 1
first time treating
(viral loads posted in journal)
I started treatment triple with Incivek-August 24th 2011
und at 4 weeks
taken off incivek at 10 weeks due to severe rash
taken off peg and ribo at 11 weeks because rash would not leave. also doc thought that my hearing, smell, anxiety complications could be irreversible.
its now been 6 1/2 months and still UND.
will test again in May & August.
back to almost normal,light anxiety and extreme hair loss is still occuring.
thanks for keeping this chart Bean...your awesome!

[Aquisi]

Hi Bean, hope you feel better, update on my stats are: 4th week vl 778730, 8th week vl 340. Went down 3.7log from baseline. Also on Neupogen, Procrit and Riba dose reduction, thanks for all your hard work on these trying times.

Regards
Charlie

[pjhep62]

ya i did incivek im not sure why i have to do 48 either LOL just kidding let me 'splain it to ya..

i was on virimidine trial about 7 years ago virimidine is a riba based drug i have no results but at 6 months they dropped me they just said it wasnt working... so that means i either responded and relapsed or didnt respond at all there is no way of knowing ...so my dr wants me to do 48 weeks just to be sure...

[frijole]

Hatterasman -- I am confusted on your 12-week VL.  The test normally given can only detect down to 7 but you are saying your detection level is under 7.  What test did you take?  If you were detectible, what is going to happen?    You have a very persistent strain, it appears.  My very best luck on your 24 -- the critical one!

pjhep62 -- can you believe, I don't have your treatment drug down.  I am guessing you took INC.  I am not sure why you have to do 48.  Your previous treatment -- were you a responder/relapser or did you never clear?  Your stage is only 2 so that would indicate 24 weeks for relapser unless you never cleared previously.  Maybe because of the TT?

susan - please forgive.  I appreciate the update on your status but I am only listing current treaters.  You know I have paid a lot of attention through the years to your treatment failures and I am hopeful there is something out there being currently researched that will do it for you.  My best, bean

I will try to get this up tomorrow so if there are any more updates, now is the time.
bean

[susan400]

Beginning vl
  Liver biopsy result (grade and stage)       Grade 2 Stage 1 (dropped from a previous borderline Grade 3
  Previous treatment info (responder relapser, nonresponder...) and how many times you've treated.  10-11,    I've lost count, it's one big BLUR. I've treated with just about everything FDA approved and even 3 trials, but continue to be a null responder-never cleared.  
Not currently doing any treatments, don't plan to do any in the near future.

[Dee1956]

Hey Bean I think you have me, I hope you are doing better
I finished tx on 2/11 and 2/17 and on 2/27 was UND and all blood work was in low normal range, platelets have gone from 75 to 168  I am so grateful heading to SVR
Dee

[pjhep62]

hey fri glad to hear you feeling better...

i was und again at week 24 .... but still treating to 48 weeks since i treated and failed before

[Hatterasman]

week 4 DET, <43
week 8 DET, 63
week 12 DET, <7

CBC ok.  WBC 10+, platelets 100K,  ANC dropped to .9 week 1, back to 1.4 week 18 on its own.

[indy531]

In wk 24 of 28 wk tx--wbc @1.5-new low, from 2.2 last week; hgb holding at 9.7; neutrophils in the basement at 712 from 1159 a week ago. Having CBC's weekly and will have wk 24 PCR this week. Still on Vic-blechh. Peg has been dropped to half due to neutrophils dropping like a rock. Still shedding hair like crazy  and will have thyroid check next week-presently at 50 mg daily. Praying for continued UND.

[crigger]

Geno 1a.  Il28 T/C
Grade 2 stage 2.    BG.. VL 4,650,000
St DATE 10/27/11
UNd @ wk.  2.. 4.. 8.. 12..
PI incivek
Relapser 1 treatment 2001
Side effect. RASH. Anal burning {fire}. Achy joints
HA.  N/V but not to bad, heavy legs, dry eyes
Most side effects cleared when incivek was compleated....... except brain fog and anemia
Hbg went to 8.3.  Reduced ribo to 800mg qd
Procrit 40,000..... Hbg back to 9.6.... I did get leg bone pain with procrit.

[Diane1186]

   Week 6, 8, 10, 12, 14 Undetectable -  
Hemoglobin starting to drop week 8, decrease Riba to 800
Last dose of Incevik January 18
Hgb dropped to 8.8 - Started Procrit 40,000 IU December 27 dropped Riba to 600 mg
Last dose of Procrit was February 1.  Hgb at 13.1 Week 14 February 2
Week 16 February 16 increased Riba to 1000 mg
Started back on statin drug January.

[can-do-man]

Wow your 8 week labs are fantastic, best of luck to you Gene.

[gene53]

Hi Bean
started:1a stage 4
UND@4wk
8wk labs: wbc-3.9
               hgb-14.4
         platelets-130
               anc-1.73
sx- fatigue-itch-headaches-eye irritation-nausea
steady as she goes-full steam ahead!!!
Gene
  

[FaLaLa137]

Beginning vl 3,340,000
  Liver biopsy result (grade and stage) Grade 3, Stage 2-3
  Previous treatment info (responder relapser, nonresponder...) and how many times you treated  Treatment Naive
  Start date 01/30/2012
  Which PI - victrelis or incevik   Victrelis
  Results of each VL test on treatment Week 4 882,335 VL
  What has been done for anemia no anemia yet
  Really bad side effects-fatigue, bad taste in mouth, nausea
  If not geno 1, what geno? 1A
  If not on triple, what are you doing/ NA

[Sentinel13]

Hi Bean: Your comment to rockymo jogged my memory regarding my bacteria bronchitis. It occurred around treatment week 12. It was successfully treated with antibiotic & cough syrup. Coughing is common with treatment, but I was coughing till I lost consciousness (or almost lost consciousness). This bronchitis can, and should, be treated. Okay, so that makes 6 really bad side effects for me. Cheers, Sentinel

[frijole]

Just a few comments.  THanks everyone -- keep them coming.

nygirl - you are referring to our giant microbe hepatitis C virons, not doubt (my avatar).  Yes mine looks over me in the bathroom and gets quite dusty too!

rockymo - darm.  another transfusion and bronchistis on top of that.  it is nasty stuff and really makes it hard.  Keep on trucking

frontrangemom - good to hear from you.  it has been awhile.  very sorry to hear about the W17 results.  I hope it was a false positive.  Hang in tthere

sandysf - why 30 weeks?

stormy - interesting. Never heard of riba reduction when the HGB was still in the 11s.

gooofydad-- well, don't think I have been called that before!

spectra - your results are insprirational.  detectible virus at week 8 and week 12 (unless it was a false positive) and you still are SVR.  I honestly don't know how you coped with HGB in the 7/8s for that long.  Thanks for posting this.

advocate - I can't wait to see the results of the 3/1 VL test.  

Keep them coming.  thank you, my friends

[Sentinel13]

Hi Bean,

Thanks for collecting data and posting the chart! My stats appear below.

  22,000,000 -- Beginning vl

  S3 (in 2003) -- Liver biopsy

  Breakthrough Relapser (2003) & Relapser (2009)

  Incivek

  Week 1 vl = 65 (Lucky to be tested at W1 -- Amazing decrease in vl)
  Week 2 vl = UND
  Week 4 vl = UND
  Week 8 vl = UND
  Week 12 vl = UND
  Week 16 vl = UND
  Week 20 vl TBD
  Week 24 vl TBD

  Epogen for anemia (up to 40,000 units)

  Did not decrease Ribavirin for anemia :-)
  
  Side effects:
  1. Feeling of being poked with pins in legs and feet -- Successfully treated with neurological drug (Gabapentin).
  2. Hypoxia/Fatigue/Brain Fog (compounded by living at 7,200')
  3. Nausea (treated with Zofran/Odansetron)
  4. Anal itching (resolved by increasing fat intake above 20 grams when taking Incivek)
  5. Visual defect in left eye -- "smudge" near central field of view

Cheers,
Sentinel

[beeblessed]

Hey Bean,

Sorry about the Anemia.  I have been in a bit of a fog myself and have missed a lot of posts/updates, so thanks again for doing this for us.

Triple tx with VIC (9/2011); Naive; African American; No liver biopsy
VL 10,700,000
Week 4: 329,000
Week 8: UND
RIBA reduction, PEG reduction, transfusion
Week 12: <43 (because of dose reductions)
2 injections of Procrit
Week 16: UND
Could not handle RIBA increase to 600, so reduced back to 400 (below protocol but all I can handle) for the remainder of tx
Week 21: UND
Doc didn't want me to continue weekly blood draws and said since I was UND at week 21, expects me to remain that way through week 28.
Currently on Week 27
Will complete tx March 17, 2012
Next VL check, one month post tx, in April; then June; then September

Worst sides: Anemia, Nausea, Fatigue, Brain Fog, RIBA Rash on scalp and in armpits

Bee

[adamben101]

Beginning vl 80,000
  Liver biopsy result (grade and stage) 1/1
treatment naive
start Aug25, 2011

  Which PI - Gilead trial NS5a 5885, protease 9451, polymerase 9190, RIBA (all oral)
Breakthrough at week 8, added PEG and removed polymerase
  Results of each VL test on treatment
week 1 < 25
week 2 - 4 UND
week 6 - 609
week 8 - 1400 (PEG added, polymerase removed)
week 9 - 479
week 10 - 74
week 11 - 698
week 13 - 1420
week 15 - <25
weeks 17 thru 29 (current) - UND
Currently on shot 23 of expected 48
  What has been done for anemia - nothing.  no anemia
  Really bad side effects - none (some redness/rash at injection site)
  If not geno 1, what geno? geno 1

[starshine1ca]

Hi Bean,

Sorry to hear you have had a hard time and hope that you are able to get the anemia under control. Nooo fun!  And thank you soo much for all your extra work you do!  

I am going in 3 weeks for my wk 24 Viral Load so will not have the results for another 7 weeks.  No rescue meds to date but I am having alot of trouble with my breathing due to my red blood cells being low. I am not sure but in Canada the readings are different so I cannot compare with others so not sure just how bad it is.  My nurse said no need for rescue drugs yet... My LKC is 1.7  norm 3 to 11) and my HB is 104. Platelets are at 83.  Neuts are .95.   Depression has set in but I am on ADs now.

Thanks again, Starshine (Anita)

[Advocate1955]

Hi frijole,

Husband (age 59, male, Hispanic, diagnosed 2007, g 1a, f4, triple tx with Inc., 2 previous failed therapies SOC (2007) and daily Infergen/1400 mg Ribavirin (2010), partial responder both times):

Here is the update on current stats:
Week 18 (drawn 1/30/12), VL= <12
Waiting for results of Week 22 PCR, which was drawn this past Thursday, 3/1/12.
Current symptoms:  moderate fatigue, dry mouth, bad taste in mouth which led to a crown on one tooth and an extraction of another tooth last week, food doesn't taste good.  Counts are all stable and doing OK (below normal as one would expect, but not low enough for concern or additional medication).  Working full time, no missed days of work due to Hep C treatment in the past 2 1/2 - 3 months.
Next PCR, depending upon Week 22 results, will be on 3/29/12.

Everything else on your chart for my husband is accurate.  Thanks for doing this.

Take care,
Advocate1955

[spectda]

I forgot to add that I had cryoglobulinemia with vasculitis which appears to be gone now

[spectda]

Geno 1a-30 years

Beginning vl -2,650,000 (HGB 15)

Liver biopsy result (grade and stage) stage 2, grade 3

Previous treatment info (responder relapser, nonresponder...) and how     many times you treated -first tx

Start date-5/17/2010 (trial to determine response to anemia)

Which PI - victrelis

Results of each VL test on treatment
week 2-vl 236,000
week 4-vl 69,800
week 6-vl 246 (2 weeks after start of victrelis) (ANC .28 interferon reduced)
week 8-vl 274
week 10--vl UND
week 12-vl-detectable <25
week 14-vl UND
week 16-vl to end of tx UND
week 42.5 stopped tx because HGB 7.0 below trial parameters

SVR 24 weeks post 9/29/2011

What has been done for anemia -dose reduction then procrit twice weekly

Really bad side effects, anemia in the 7s-8s for 6-7 months, platelets started at 150,000 dropped to 24,000, ANC dropped to .25 at low point
rescue drugs taken-procrit for HGB, Neupogen for ANC, Neumega for platelets