Roll Call Please. Genotype1

I am currently on week 13 of tx. Riba and Interferon
I am wondering, who is out there? Relapsers , SVR . 48 weeks, 56 weeks, 72 weeks. I would like to hear from you.

Thanks
Ter

[FloridaMouse]

Greetings,

Genotype 1a here, Stage 3, Grade 3 liver, pathetically low pre-treatment viral load of 90,000.  Did 48 weeks treated from 5/19/07 - 4/13/07.  Cleared at week 12 of treatment.  6 mos. Post PCR coming up on 9/20/07.  Infected 22 years - transfusion victim.

How about you Ter, what's your genotype?

Mouse

[tulips27]

Genotype 1A (Not treating till end of year) Stage 2/2- VL-over 8 million- ALTS-normal. Infected 22 years. No other health problems-all other blood-normal,

:}

[susan400]

I'm a regular on here.  I've never cleared the virus, but had sort of a response where my viral load lowered and my LFT's lowered.  I have Stage 2 Grade 3 w/bridging fibrosis on biopsy, as per my 4th biopsy I had in May.   I've treated 8 times, the last time being the Prove 3 clinical trial for Telaprevir.  I've been off treatment since the 1st or 2nd week of July.  I have Geno 1A, but as of around 7 years ago, I was testing as a geno 1A/1B.    I just found out when I went to do this trial and they rechecked my Geno, that I'd lost the 1B type.  I've been infected since 1983, so 24 years.    

Susan

[debnevada]

Week 21 tx riba and INF
RVR, UND at week two
48 weeks proposed still fighting that
Acute hep c acquired at hospitalization Nov. 06
No biopsy, no signs of impending fibrosis or cirrhosis via U/S and CT
Geno 4 wild type

[katerika]

Thanks for sharing. I am awaiting 12 week PCR results. My heme has dropped  to 10.7, hopefully it will climb up to 11 again. I am a  genotype1. Dr thought the Nash was interfering with the RIBA absorption. At week 8 I made the 2 log drop, hopefully that satisfys the ins. company.
Biopsy  states stage 3-4/4 grade 2/4. I also have NASH the biopsy states" LIVER PARENCHYMA  with portal lymphotic aggregates, mild lobular inflamation (inflammation) and mild piecmeal necrosis. Moderate ro severe steatosis, ballooning degeneration of hepatocytes and scattered hepatpcytes with glycogenated nuclei are noted.

So far all who answered it just goes ro show that we all respond differently.
Florida Mouse, I am rooting for you, you go girl!
Susan why 8 times , did you quit tx because of sx.?

[somuchmore]

I'm Geontypye 1a too.

Treated twice once interfer-riba and second peg-tnterfer-riba. Still non-responder.

Waiting hoping for 3 with VX-950 will be the charm.

[Andiamo1]

Genotype 1A infected since 1962.  Stage 3 grade 1.
Treated 7 times now in Prove 3 for the eighth time

[Teufelhunden]

Geno 1a. Treated 48 weeks with 1200 mg Riba and Interferon.  My journey ended Jun 8 2007. Waiting for my 3 month PCR to see if the dragon is slayed! .  CBC's on the rise and feeling good. Good luck!!

[JRenquist]

Genotype 1A - treated several years ago with interferon and ribavirin.  Can't remember exactly when ( along with a lot of other stuff) but the last few of my 48 weeks were when Pegasys came out.  Hit a low of 35 VL about 3/4 of the way through, but ribavirin had to be reduced because of anemia and it went right back up again.  Had a biopsy after treatment - things looked pretty normal.  My blood levels are consistently normal.  Hoping , hoping, that vertex will come through.  Think I've had it about 35 years, but not sure.  Am takinf a lot of herbs, etc.  I hope that that is not giving me false readings on blood test.  Does anyone know if they have that effect? S.

[susan400]

Yes, partially because of symptoms, but also the last 6 times were also because of my biopsy #2, then, 5 years later #3, showed an increase in fibrosis.  The 4th biopsy I recently had, I would not have preferred to have had (but, the Prove 3 trial required one within the past 3 years), showed no improvement, but no worsening, basically staged/graded the same as the biopsy #3.  I keep on trying to treat because I am symptomatic and because I do have bridging fibrosis.  I'm trying my best to keep from progressing.  So far, if I've accomplished nothing else, I've kept that under control fairly well.  I do give God the most credit though.  I have A LOT of people who pray for me.  Every time something becomes available and the doctors suggest to me that it would be worth a try in my pursuing it, I pray about it and if it seems like there's not a reason that's contradictory, then I've gone into it w/the thought that maybe it would be my time for an SVR.  Sure, it's disappointing when it hasn't happened, but I have to believe that the alternative, letting the disease get the better of me, is not the way to go either.  

Susan

[ladywhy]

23rd wks. Just checked calendar. Looking at possible 72 weeks. Slow responder. Dropped 2 Logs @ 16 weeks.  Get some labs done this week and see where I'm at. Tx with interferon only.  Then clinical trials for interferon/riba...became UND...had no liver damage. I was very ignorant and thought UND meant cured. I claimed it as such...and stayed away from Dr.s for many years. 2006 had bx., Stage 2 bridging fibrosis, grade 2-3. That's my story...wish it weren't!

[GrandmaA]

Genotype 1a. Infected 1977 from blood transfusion. This is my first time treating and I will be done in 4 weeks. Stage 2-3, undetectable week 15. So I have to do 3 more weeks. They want you to treat 9 months after UND. I had only one bx 5 years ago.

[Moniker!]

In 2005, I was stage 2; I'd probably had hep c (genotype 1A) for 30 years or more. I felt good, and I was living a healthy lifestyle: no drinking, no drugs, no smoking, etc. I had been putting off treatment because my biopsy had always indicated stage 0, or stage 1. When my biopsy (in 2005) indicated stage 2, my doctor said that I should treat. My doctor said that I could possibly be at stage 3, or stage 4 in five more years. He said that I should treat, and I took his advice. I treated for 48 weeks, and now I'm one year post treatment, and I'm SVR. I feel well; life is good. I'm very glad that I treated.
This is my story. As Teri said, " WE all have to make our own decisions and live with them." Best of luck to us all,
Bob

[mauilady]

Geno 1B, vl 640,000, stage 2-3, grade 1.... Began Tx Jan. 5th of this year (IFN & 1200mg riba), und. at 4 weeks, finished June 22nd (24 weeks).  Hoping for SVR because I don't think my WBCs could handle another round of TX.

[l-horn]

25 days post tx, 1b, 48 weeks of the potion. Post tx PCR was still undetectable. Next one is in late October. ( 60 day)

[NYCMark]

I just read that you are now in your 8th treatment! Wow. I thought my 4 was a lot, but 8 seems almost unbearable. I surely hope your Prove 3 test goes well, so you can be done with this!

Mark

[Lady E]

Post tx 25 days now - 54 weeks of tx - geno 1a.
I week post tx pcr I am still UND with another PCR to follow in 6 months. My blood seems to slowly be creeping up to normal again..and I feel really good.

I lived in Ct most of my life (Waterbury area) and moved to southern Maine in 2000. I see you are from Ct as well & visiting Maine. LOL

-Eileen

[katerika]

I-horn Good for you, we love successd stories!. What level was your biopsy prior to tx.?
Ladywhy it looks like we are in the same boat, hopefully we both have paddles so we don't go in circles.
Grandma did you do 48 weeks?
All of you, thanks for responding.
How many of you ended up with rescue drugs?
I always thought a dog had a good life. Recently I am feeling and looking like an ungroomed dog. I am shedding, & feel like I have fleas. I walk around in circles and finally lay down. Get up for more water and then need to go, then do the circle bit, lie down and scratch again. Poor Doggies.It is so good when someone comes home with food, and pats me on the head.
Good thoughts to all of you. Throw me a biscut please!
Teri

[AngelsOnMySide2]

First time treating - clinical trial SCH 503034
Getting Standard Treatment-no trial drug
Genotype 1b
Liver biopsy
Grade 2-3
Stage 3/4
Today starting week #22 today
2 months ago became totally hypothyroid and was put on synthroid
Last week took first shot of procrit
Became UND week 20
Will be talking with Doctor to see what course to take now that UND at week20...
Go to 72???
Any comments???

[APKhaos]

I had acute hep in the mid-70s, diagnosed and treated as HepA. Fast forward to 2005, diagnosed with HCV. NO antibodies to HepA, so it was C right from the start.

Geno1b, 27,460,000VL, elevated ALT/AST, Stage 3 histology. Was very lucky to fall into the Prove 1 trial for telapravir, and started dosing July 06. After 12 weeks of SOC + telapravir and another 12 weeks of SOC, finished dosing in January. Last blood work was SVR at 26 weeks post-tx. WooHoo!

[cherann49]

Week 19, First time treating - clinical trial SCH 503034, Getting Standard Treatment-with protease inhibitor, arm 5
Geno 1b- Vl 20,400, grade 3 -stage 1- mild portal fibrose - probably had for 30 yrs.
UND wk 2, been clear ever since just trying to keep taking my daily poision and nueprogen to keep up wc.  So far No procrit but have been close with a count of 10, .1 drop will put me on another weekly shot.
How's everyone else in this trial doing?

[jmjm530]

1B, infected close to 40 years ago. Pre-tx viral load 1.5 million. Stage 2-3 on three-year old biopsy. Almost two-log drop at week 1. UND at week 6. Treated 54 weeks. Significant side effect. Ended treatment 18 months ago. SVR. Based on my experience, would not recommend current treatment to anyone without signficant liver disease. Just too brutal.

-- Jim

[jmjm530]

Meant to say in last sentence: "....without significant liver *damage*."  And as others have stated, it's not just what the drugs do to your body -- plenty right there -- but also how  a long-term illness can affect the rest of your life, including jobs/finances, spouses, and friendships. And for many of us, you can add at least 6-12 months to the treatment time, in terms of recovery, or let's say, "almost" recovery. Because geno 2's and 3's generally treat only half the time, I think on a whole they come out a lot better from treatment, especially in terms of the finances/jobs/spouses/friends thing. Hopefully, newer treatments like the Teleprevir regimen will make all treatments 24 weeks at maxium. Beyond that time, things have a tendency to break down, in many areas.

-- Jim

[dmhrdh]

Geno 1a. Stage 2, Grade 1-2. Non-responder the first time I treated.
Currently week 17 in Prove 3.

[PSP-n-Me]

1A on week 30 of 48 - Would recommend treatment to anyone that is in a position to devote a year of their life and has good family and friends supporrt - not everyone has a brutal time

*dip*

[mauilady]

"I always thought a dog had a good life. Recently I am feeling and looking like an ungroomed dog. I am shedding, & feel like I have fleas. I walk around in circles and finally lay down. Get up for more water and then need to go, then do the circle bit, lie down and scratch again. Poor Doggies.It is so good when someone comes home with food, and pats me on the head."

Now THAT'S priceless!  Just about the best description I've heard yet!!!

Aloha, Michelle

[katerika]

Just picked up PCR results. I won't see the Dr. for 2 weeks, unless my hemeglobin drops again.
Maybe someone can help. Acording to what I see this isn't looking very good. Any comments would be very apprecisated.
12 weeks Viral Load result for HCV RNA is 19,900
   ref range is < 1.9  my Log Value is 4.3
Total Bili 1.5 HWBC 2.9 L
Hemoglobin 10.7 L
Hematocrit 35.3 L
Platlet 127 L
Momocytes 11.3 H
Neutrophils absolute 1.68 L
RBC 3.29 L
Mean corp. volume 107.3
Mean HGB Concentration 30.3 L
Red Cell dist. Width SD 61.9 H
                               CV 15.8 H

Macrocytosis   = Present a
Anisocytosis  = Mild a
Poikilocytosis  = Mild a
Lympocytes 0.86 L


Thanks
Teri

[ladywhy]

Ditto! Excellent discription, and very funny!

[ladywhy]

We need someone else besides me to go over your results, but, what was your beginning vl? I think you did drop 2 logs @ 8 weeks? After getting some feedback, you should also be able to talk with (maybe dr.'s pa?) someone at dr's office to go over results. I definitely wouldn't want to wait 2 weeks. But, Teri..at the grand age of 102...your labs don't look too bad. (jus' thought I'd throw in a lil humor...I had on my profile for awhile stating the same age...i do know how you feel!)
BTW: I too had a high vl @ 12 wk pcr...you're not alone.

Due to a previous dr's error, my hep dr. was able to get my ins. co. to extend tx (48), injection only...tho I had not dropped 2 log by 12 wk....
I'll remember you in my prayer's today.
Hugs
Yvonne

[ladywhy]

Roche is donating riba...1400 mg. a day. I asked dr. permission to up my dosage and he agreed. I started at 1000 mg. It absolutely helped me drop the #'s. Jus' a thought, maybe something you might look into...?

[jmjm530]

In general, they like to see UND at week 12. If not UND, then studies suggest you should treat for 72 weeks to have a decent chance of SVR (cure). That's assuming you are UND by week 24. If not, then the chances of SVR are so low that the only reason to continue would be to hopefully improve the condition of your liver. I agree with "Lady", that you shouldn't wait two weeks, but should call your doctor now. Perhaps there's something that can be done to knock the virus down faster. Also, I would ask for your viral load to be tested at least every two weeks until UND, so you will have a better idea if things are working and the date you become UND. Two thoughts are increasing your ribavirin and/or Peg -- or perhaps even changing Peg's -- but I don't really know too many of your stats or tx history (sfx's, etc) plus I'm not a doctor. But given your hgb is already 10.7, you should be cautious about increasing ribavirin without adding the helper drug, Procrit. Do you remember by any chance what your hemoglobin was at the start of treatment? How have you been handling side effects?

Certainly don't give up hope, as you still have time to get UND. Just make sure that your medical team is on top of the situation and doing everything they can do to give you the best chance at SVR.

-- JIm

[PokerRon]

Age 55
infected for about 35 years
Geno 1A hep c
grade two, stage two
diagnosed in jan  2007
started TX on st patrick day march 17
first time TX,
now at week 23
start VL 8,500,000
week 12 VL   16,600 (2.7 log drop)
week 17 VL     7,900
week 24 VL     TBA
............Weight at start of TX 248lbs,
Weight Today 215lbs
1600mg of Riba per day and peg intron 2b    5mg per week......

This a great idea to have everyone post history here
thanks
Ron

[katerika]

at start of tx, heme was 15.6. Original VL was
So if i understand, I am responding, just a slow responder!
Heck I am willing to do 72 weeks, just don't want more liver damage. I am taking 1200 of riba, At 8 weeks the Dr. mentioned upping the Interferon from 120,in fact Jim you  said maybe 150 for my weight.    I or the dr.didn't follow thru. It was wait and see, I guess I'd better call and get things moving.
Thanks
Teri

[Stiffneck]

1A. 6th week of pegintron/riba.
Starting vl of 2,910,000, down to 261,000 @ week four.
only 42 weeks to go!

Tim

[jmjm530]

I am more familiar with Pegasys dosing (180 flat SOC) as opposed to Peg Intron dosing. I assume you're on Peg Intron? If so, maybe time to revisit with your doctor the idea of upping the dose. I wouldn't wait two weeks though. Something like that can be decided on the phone if the doctor gives the green light. Your hgb has dropped significantly, so it's not as if the riba isn't being absorbed. Still, more riba is always a possiblity, but you want to make sure you can tolerate it, therefore the mention of the helper drug, Procrit. Yes, you are responding but the trick is to get UND by week 24. Do you know what your pre-treatment viral load was?

All the best,

-- Jim

[katerika]

original viral load was 397888 so now it is 19,900 is that good?
Thanks Teri

[hepcD]

age 38
I had hep c at least 23yrs
I found out by giving blood
I am stage 2 grade 3 as of one yr ago on bx
geno 1b starting vl was 365000. I tx 48 weeks
I started tx july 2006 and ended june  2007 . I was und at four weeks or sooner
5 weeks post tx i am still und !
I will test again in December for 6 month svr.

[rosedarling]

Geno 1a, week 22 of 48, Pegasys/riba, initial vl 23,000,000, Grade 3 with bridging fibrosis, UND as of week 12. Thanks for starting the thread,

[wyntre9]

If you made the 2 log drop by week 12 but you're still not UND, then the recommendation is to continue to week 24.  If you reach UND by then, it's thought that extending TX to 72 weeks gives genotype 1A's a 70% chance of SVR as opposed to the 50% chance with SOC 48 week TX.

I'm a slow responder, too.  Starting VL was 1,140,000;  grade 1, Stage 1.

I didn't get UND until week 16 or 17.  I'm now on week 36 (9 loooooong months) and I will probably go for the extended TX.

If you want, i can post links to some studies about slow responders that others on forum have generously shared with the rest of us.

Let me know.

Also, if you're Stage 3/4, IMHO, you should definitely consider the longer TX.

BTW, here are the author's names of some of the studies I mentioned;

Berg.
Drusano
Tapias-Lopez (I think)

Also, check the Dr. Gish video.  very informative.

Wyntre

[katerika]

Thanks so much for the feedback and comments.  It is wonderful to hear those success stories. I am sure I will be one of them. Those of you who have done tx. several times are an inspiration to just keep putting one foot in front of the other, and keep looking forward.
From what I am seeing here my personal plan is to push for the longer tx.

Go Team!
Thanks Teri

[mikesimon]

If you are right with your numbers: " original viral load was 397888 so now it is 19,900 is that good?" then no, it is not encouraging. I would check to be certain because with your 12 week response I would have expected your doctor to speak with about the advisability of continuing with the same doses. As Jim said we like to see undetectable by 12 weeks but at the very least we should see a two log drop and according to those numbers you aren't close. A 2 log drop from 397,888 would be 3,978 and your is 5+ times that. I really believe you may have made a mistake with the numbers you posted unless I am really missing something. If I am someone please correct me. I hate to be the one to say this but that's my take. Mike

[katerika]

At 4 weeks I was at 300,000 & 8 weeks at 45,563. at 12 weeks 19,900 does that make sense.

[jmjm530]

They like to see a one-log drop each month.  If your figures are correct, you had basically no drop the first month because the difference between 397,888 and 300,000 is insignificant and can be due solely to test variance. I would have thought your medical team would have taken action at that point rather than letting you go further on the same dose and drugs.

That said, you did much better the second month, dropping almost a log, but didn't do as well the third month. Hopefully, your medical team will make some adjustments -- maybe the Peg -- to get you UND as soon as possible and no later than week 24.

Are you seeing a hepatologist or a GI? If the latter, this might be a good time to look up a good local hepatologist for a consult who can both review things and help plan a strategy moving forward.

-- Jim

[wyntre9]

Just to inject an optimistic note:

At week 12 I had an approximately 2.4 log drop.  (Don't have the exact numbers here).

I was a little discouraged as my beginning log was about 6.57 and the 12 week log was about 4.5.

But then, at week 17, I became UND, a drop of  4.+ log in only 4 or 5 weeks.

i have remained UND since and I'm now on week 35 (of 72).

While it's obviously better to reach UND ASA, it would seem to me you're still in the game.  While it's true that a 2 log drop from your starting VL of 397,888 would be 3,978, I don't think the issue is that you're 5 times that VL now (19,900) as that's not the same thing as a 5X increase in LOG!

I know there's a site where you can calculate you exact log but i can't find it.  maybe someone will post it for you.

From what I remember, I think your current log drop might be about 1.5.

I agree you may want to discuss increasing your riba dose.

But don't give up.   You still have a chance to reach UND by week 24.

Wyntre  

A 1 log drop would be 39,788 according to the studies I cited.I dropped

[wyntre9]

apologies for the cut an paste but this makes the point far better than i did.

"Any change of less than one-half log is considered insignificant. More simply, if the viral load measurement has not tripled or dropped to one-third of its previous level, the difference might be unimportant. For example, if the baseline viral load were 20,000 copies, a rise to 60,000 or a fall to 7,000 copies might just be the result of transient changes.  Repeat testing of a single specimen may give two quite different results and natural biological day-to-day variability of samples from the same person may cause measurements to vary slightly. Researchers believe that clinical decisions made on the basis of changes in viral load ideally should be based on measurements taken 2-3 weeks apart."

wyn

[katerika]

I did put a call and e-mail into the NP. I am seeing a GI . Maybe a consult or 2nd opinion is in order. Maybe a 3 hr trip to Boston  Or I can go down to Yale in Ct. any recommendations, or hell NYC I am in the middle of nowhere, As it is I have over an hour trip to the dr.
Thanks
Teri

[ladywhy]

I have to get heptimax done this week. 23rd shot was done this past Friday. Do you think I should wait 'til end of week or even Friday and take the shot early?...or it won't really have an obvious effect. I would think I should have it done after the 24 week shot....I don' know...
all advice..much appreciated, thanks.

[jmjm530]

You can't do better than Dr. Afdhal in Boston: http://tinyurl.com/ynqc5j

If you decide to contact his office, impress upon them the importance of squeezing you into this schedule -- reason being your're currently on treatment and need his advice in terms of making some upcoming decisions. The squeaky wheel definitely does get more attention in busy doctors offices, especially when they have a legitimate squeak. Of course, you will want to collect all your medical records -- labs, procedure reports, biopsy reports, etc. Also, it would be to your advantage to bring your original biopsy slide set. Dr. Afdhal has a Fibroscan machine and may decide to scan you for the trial he's on.

- - Jim

[jmjm530]

I would get the blood drawn either Thursday or Friday. Really doesn't matter. But if you have the blood drawn on Friday, make sure the blood is drawn before you do the injection. Technically, this will be your week 23 viral load test. The usual schedule is to do the test on week 24 -- a week later than you have planned -- but I really don't think it should make much difference unless you were still detectible on your week 12 test. If you were detectible at week 12, then I'd probably wait until week 24 to be in sync with study data for slow responders. Alternatively, you could test viral load both at week 23 and 24.

All the best,

-- Jim

[seabean]

Geno 1a, HCV for over 20 years.  I completed 45 of 48 weeks of treatment.  SVR.  Treatment ended 1/06, and I still have numerous side effects.  I agree with Jim, and would not recommend current treatment to anyone without significant liver disease.  It is just too difficult, and with the lasting side effects, it's not worth it.

[ladywhy]

Thank you so much for your quick response. You are such a blessing to all of us on this forum!  Hypothetically speaking, if you had an extra vial of injectables (that had been in freezer for 10 hrs. but never actually froze or got discolored) and were in a similair situation as me...would you give it some serious thought?

I think possibly my NP is confused about the # of weeks I'm txing. I'm sure they're not going to order another PCR next week...

[ladywhy]

I had a pretty high vl @ 12 wk....not even 2 logs

[CIRQDUSOLIEL]

Geno 1a

Pre-tx VL 22,000,000

Txing for 48 weeks right now looking at the 72 week journey as to increase chances.

Co-infected w/ HIV as well since '96.  (Probably had HCV then as well too, but back then Dr's didn't run test for HCV for people with HIV...probably should have.)   Txing both right now.   HIV UND...will know about latest PCR for HCV this Wed...currently UND with the HCV as well.

Doing OK for right now ( hanging in there )

Shot 31 tonight of the 48...

Together in Him,
Rick

[jmjm530]

If you were UND at week 12, then I think I'd go ahead and take your viral load test as scheduled, which would be in effect a week 23 test. However, if you were detectible at week 12, then I would do a week 24 test to be consistent with the study data. Maybe a fine point, but that's how I would approach it, assuming the test date can be moved.

As to: "Hypothetically speaking, if you had an extra vial of injectables (that had been in freezer for 10 hrs. but never actually froze or got discolored) and were in a similair situation as me...would you give it some serious thought? "

I'm not clear what you're asking in your hypothetical. Are you talking about in addition to your normal injections or instead of your normal injections? Personally, if I left Peg in the freezer overnight, I would call the pharmacy and have it exchanged for some new Peg. If the pharmacy is not willing to do so, call Roche directly and they should be able to help. I ran into something similar  once, and Roche was willing to reimburse the pharmacy for the Pegasys.

[frijole]

Good thread, Katerika

I join the ranks as a 1a responder/relapser.  It has been a year since my treatment ended and I am still not sure of the future.  Biopsy is G1/S1 and set for another in May 08.

Like many here, I am distressed with your 12 week results .  I think most hepotologists or those who keep abreast of developments, do not even consider a mere 2 log drop enough.  I had a 4 log drop at week 12, but was not clear, and chose to treat for 36 weeks post clearing (at week 20).  I remained UND from week 20 to 56 weeks of treatment but my VL returned to pre-treatment levels shortly after completing.

I feel that you do need to consult a hepatologist.  My first treatment doctor was a GI.  I am now traveling to Dallas (350 mi) to see a "real" liver doc.  If you can't get a consult quickly, try Dr. Cecil.
--       http://www.hepatitisdoctor.com/  --- You can email him and he may offer ideas.

GrandmaA -- if you are tolerating treatment, consider going the 72.  I do not think there are any studies for "9 months after clear" but that is what I did, and IT DIDN'T WORK.  

frijole




  Your hemoglobin has dropped in the 10s but I don't see that you have been on Epogen/Procrit.  Are you?  You must be wiped out.   I

[ponyshel]

geno 1a infected 20+ years ago
grade 2/2 with mass on ll lobe and bridging fibrosis
txed 72 weeks..3 weeks post
cleared week 17..and hope still svr
thyroid problems mid tx and still...

[ladywhy]

I was thinking in addition....like maybe doing it tonite and then friday night again. Maybe 1/2 the dosage. I'm just thinking about it...and want so bad to get UND......by 24

[fingirl]

Geno 1B, last VL 112,000.  No liver biopsy - ultrasound did not detect any abnormality (I know it is not the same as a biopsy, but can't bring myself to do it).  Fibrosure test came back F0/A0.  Starting treatment in less than two weeks.

[Andiamo1]

We are in Maine and stopped at the Duffy boat works in Brooklin.  Thought of you.  Good luck with the treatment.

[Andiamo1]

Just saw your post about Maine.  Where in Maine do you live?

We are currently in Southwest Harbor on Mount Desert.

[Andiamo1]

Good luck to you with your latest try.  I am rooting for you.

I am in week 18 of Prove 3, so I will get big news at week 24 and 26.  At 24 I find out if I am in the 24 week Arm or the 48 week Arm.  At week 26 I get all the PCRs!!!

[fingirl]

Hi, nice to hear from you.  Yes, I love the Duffy but still haven't taken the new one out.  No time.  What kind of batteries do you use for yours?  You better say Trojans :-)  Sorry, I am so goofy.  I love Trojan.    

[Andiamo1]

Being a sailboat, I need deep cycle batteries.  I use AGM deep cycles made by lifeline.   Actually, Trojan are the highest rated AGMs, but I didn't know that when I bought mine.

I hope you still like me even though I have bad taste in  batteries. :)

[debnevada]

I took your advice to someone else emailed Dr. Cecil on my treatment length matter (I'm trying to get out of 48 weeks).  He was very kind, responded quickly and basically said, why not be ill for a few more weeks to be sure.

Sigh.  I guess unless I choose to quit at 36 I'm not getting out of this!!!

Deb

[Lady E]

I live in Sanford, in southern Maine. Near Kennebunkport, Ogunquit & Wells beaches. Hope you are having a nice time sailing!! It's a little cool here this week, but at least it's not raining, right?
-E

[Andiamo1]

We are actually taking a land trip, since I did not feel well enough to sail.  My Hgb is 10.3 and I can barely move.

The weather has been cool, but clear and beautiful.

[susan400]

I still have to wait until week 24 to find out what my PCR's were in my "failed" treatment for the Prove 3 Group C.   This is really hard for me to do.  I know I agreed from the start and knew what I was signing up for.  But, it looks like after you already know that you didn't clear and you already know that you were in the Group C, that they wouldn't make you go through the wait to find out what exactly your PCR's did.  I already know that I hate "breakthrough virus", but all I want to know was did I ever clear it at any time in the process.  I don't know why that they couldn't at least tell me that.  This "bites" in my book.   Anyways, I just had to complain a little.  My unveiling of this little tidbit of information won't come until towards the end of Nov.  It's kind of the reason why I hesitate to do any more 'blinded' trials.  It's too darn frustrating to me.  But, it's not exactly like there's many things immediately available either.  I'm really hoping for your SVR and that you feel better soon.

Susan

[Andiamo1]

These kind of things are what set me off against Vertex.  We all went into this knowing it would be difficult, but Vertex makes it more difficult than it has to IMHO.

When it comes to the stock price, they bend over backwards to get the information to the public.  When it comes to patients, they (senior management) seem to be unaware of our needs.  I don't think they are malicious in any way -- but our needs are not very important to them.

[katerika]

I don't think we need to do the math, The responses to this query seems to point to less than 30% chance recovery for Geno 1 with conventional therapy, 48 weeks with riba & peg. The more damage to the liver the less the odds. I for one am betting on the long shot, cuz there isn't an alternative. Some have beaten the odds, and that'[s as good as it gets.
I am rooting for all of you, please keep sharing. I'll keep you posted. Thanks for all the input.
Hugs and positive thoughts.
Teri

[dlr2007]

Hi- I'm female, 38, genotype 1 (?a or b?), been infected about 17 years. Bx in '96 was Stage 0- just had another bx today, waiting on results. Tx'ed on interferon in '96- didn't clear and was taken off tx early. No sx from that tx however- I'm hoping Round 2, if needed, will be as easy! Best of luck to  all!
-Dee

[Alady1620]

Geno1b SVR here.

[geterdone]

Geterdone here,

Just drudging through this and making the best of it.

Male – 53
Genotype 1b
Diagnosed 2004
Started tx: 03-12-07 / 48wks
Week 26 in this journey
Baseline vl 4.7M ml
UND week 8
Carried 33 yrs
Liver damage: mild-moderate Fibrosis
First 1-31-07 AST 52 / ALT 96
Latest 08-04-07 AST 29 ALT 27
Bouncy Thyroid problems
Present state of mind: Calm and Steady / sometimes  
Focus: Geterdone

jasper

[PrettyPoisonNoMore]

I will copy Geterdone....

Female - 47
Genotype 1a
Diagnosed 2004
Finished 48 weeks  8/2006
Base  viral load 108,299
Undetectible at 12 weeks (1st PCR)
Infected 1982
Treated with no liver damage, only level 1 inflamation (inflammation)
Thyroid isn't working too good now
Survived
SVR, BABY!!!!!

[BThompson4]

Male - 52
Base  viral load - greater than 3.5 million iu/ml
Genotype 1a
transplanted 1/2001
150 mcg peg; 1200 mg riba
Now doing week 61 of 72
Undetectable at 22 weeks (72 iu/ml at week 20; week 55 came back at 43 iu/ml after having 16 biweekly UND; UND <25 on last pcr)
F2 fibrosis one year prior to beginning tx; Week 36 biopsy showed between F0 and F2
last labs: hgb 10.7; neutrophils 1.6; wbc 2.5; platelets 209k; bilirubin 2.2

[amirtracy1]

1b treated 48 weeks
stage 2/1
6 mo's post tx SVR

[mikesimon]

Mikesimon
Genotype 1b VL fluctuated but always > 2.5 million
Transplanted June 2000
Treated 3 times and achieved SVR the 3rd TX - undetectable at week 12 and treated for 73 weeks - Pegasys/Ribavirin.
SVR since June 2004
Mike

[honey11]

My hubby and I found out Nov 2003 and started tx Jan 2004,,,Both 1A's,,,No biopsy but cat scan showing nothing,,,normal size liver.  My enzymes always normal but my hubby's was considerably high and that is how we found out we had.  My starting VL was 8.5 mil and his was 600,000.,,,
Both treated for 52 weeks as that is what our dr does for geno 1's and both SVR~

[nygirl7]

Geno 1A and Geno 1B
Grade 2 Stage 3
Treated 72 Weeks
UND 4 months post
Still need 6 mo PCR.

Good luck!

[dperry10]

Geno 1A Grade 2 Stage 2, currently treating for 52 wks, on week 36
UND at 12 weeks and 23.   2nd time treating.   14 years ago,  Interferon 3x weekly.

[Koreen]

Geno type 1a/1b. Treated in 1999. Infected June 8 1983,through transfusion. Grade4 Stage 4. Am on transplant list. Was just told by transplant team yesterday that I have a blood clot in the main portal vein. Will see speacialist next week to be put on thinners. Also told that I am having some shunting in my heart. I can't believe all the things that come as a package deal with this disease. I am from Vancouver Island,B.C. Canada

[dancegirl54]

Geno 1a grade/stage both 0-1, Had it most likely 30 yrs ago and had been tested for everything BUT!  Dx 3 yrs ago when daughter gave blood and discoverd I had passed it to 2 of 4 children - so much for a 5% chance of vertical transmission. Have not TX yet, son(18 and special needs) was in the worst shape - I WILL see my children SVR!!!!! He just finished Tx - my hero - he was a trouper - and he has remained UND since week 2.  Daughter(20) will Tx next.  We are all followed by Dr A in Boston

[orleans]

1a, vl 210,000-stage 3-37years-yet to treat-feel fine in body, bummed in mind

[dyce]

male 49
gen 1/a
diagnosed 1991
stage 0 grade 1  in jan 06
pegasus and riba 48 weeks
also procrit and neupogen
txed 3/06 to 2/06
clear at 11 weeks and stayed clear til now at 7 mnths post

[t-hcw]

Male 56
gen. 1a
stage2 grade 2
enzymes 3-4 hundred for the last 3 yrs.
started tx last friday pegasy riba
I've been encouraged by this site. Lot's of good information
My first post.

[Maggieb81]

[Maggieb81]

[Maggieb81]

Had some computer problems above.
Female 26
Geno 1a
Stage 2 Grade 2
Still contemplating treatment
Very glad I've found this site. Finally someone to talk to!

dancegirl- I was also one of the 5% like your kids. I hope they're doing well!

[dancegirl54]

You are now on my prayer list! My kids are great - my son was amazing throughout TX and is very open about it. My daughter is still somewhat in denial, though willing to do whatever the dr says. I'll post followups on my son so you can see how he is doing post tx.  You are young enough that you are more likely to respond to treatment. what part of the country are you in

[Maggieb81]

I'm in Northern kentucky. How 'bout you?

Glad to hear your son is doing well. Is your daughter going through treatment as well?

I've been told that being treated at a younger age is more effective and could possibly mean less sides. I hope this was/is true for your kids and me. I'm very nervous about treatment. Too many uncertainties are leaving me pretty stressed out and a little grouchy these days.

[chellski]

i was a 1a, grade 2; stage 2; vl 1mil.5.  did 48wks of Interferon/Riba.  Went thru hell, like most people here.  I am now 16 months post tx.  i have been clear since week 12 (one of the lucky ones). my last bloodwork was at 1yr - svr.  In retrospect, i would not have done it any other way.  i found out about it, and was sent to a specialist, got a bx, and started tx all within a few months, a whirlwind. It was during this time i found medhelp thru my girlfriends neighbor, who had a much rougher time than i did.  Medhelp was my saviour.  i came here every day throughout the 48weeks and then some.  I've had some lingering sides, at almost a year and a half now, most are gone. Goodluck!
chelley

[dancegirl54]

I'm in the Boston area.
It is true about younger people tolerating tx better, my son only had one difficult period, in the middle. The first few months he felt GREAT, and the last months he rallied as well. Daughter is more willing than she was a few years ago and the doc said they would discuss it again in January.

[PSP-n-Me]

are you the same Corine on Delphi?

[ksk3926]

Female 45
1a, VL 1.5 mil,
Stage 2, Grade 2
Probably infected 20 years ago
treated 48 weeks-clear since week 12
with Pegasys, with very few sides
I recently had my one year PCR and I'm still clear!!
Kathy

[MrsOckert]

female - 47
1b
treated 48 weeks
UND week 12 - 49
procrit  week 32 - week 48
thyroid died
sarcoidosis (1-2 per 1000 on tx)  I was the lucky one

Relapsed 6 months post

[geterdone]

Sometimes things move rather quickly on this forum and was just re-reading this thread. I am so sorry to hear of a blood clot in the portal vain and on top of that starting to have shunting in the heart. Hope you post again, (Start a new post) and let us know how you are doing.

jasper

[katerika]

Wow, It is overwhelming the stories, It brings tears to my eyes. The people who are beating the odds. Those who refuse to give up. Having your children infected. You are all my heroes.

"Stand up, stand up, don't give up the fight"
Teri

[orleans]

Prayers for you! Keep us posted  jerry

[cheddarhead]

Add one more...

Male, infected at 55 through endoscopic process in local hospital in July 2005
Full-blown acute symptoms 7 weeks after
1a and biopsy, 1-0/1
IDEAL study participant at UW Hospital/Madison at suggestion of GI doctor, head of hepatology
"Treat it early; Kill it early"
Started Pegasys/1200 Ribavirin June '06
UND at Week 4-starting VL 110,000 and 240 at Week 2
Finished May, 07
Few side effects, worst being headaches and slight anemia, but worked throughout TX
Post-treatment, 3 month PCR...UND.

This all was a life-changing experience for me. Taught me a lot about myself and what I could handle. Good luck to all of you. I'm still keeping my fingers crossed.

[sfbaygirl]

Female 55
1a
no bx, but 5yrs ago bx was stage 1, had fibroscan showed stage 1 or 2
47 weeks on Peg/ Riba
Not clear at week 12, it was under 50 iu
Und at week 24
GI bleed took me off interferon week 47
Six mos. post relapsed

[swizzlestick]

Genotype 1 here!