Week 24 VL

[PokerRon]

copyman/cappi and anyone else with thoughts or advice please help me decide what to do next

8,500,000 VL Start of tx

639,000 VL  WEEK 4

16,600   VL   WEEK 12

7900   VL     WEEK 17

267   VL      WEEK 24

grade two, stage 2,, hep c , geno 1A.....
peg intron 2b, weight based 5ml injection per week
and Ribivirin also weight based  1600mg per day, 8 pills , 4am and 4 more in the pm

its been a harsh miserable 24 week ride so far..........
id be willing to do 24 more weeks....

i am waiting for my doctor to call back to discuss my option

id really hate to do 48 more weeks for a total of 72weeks at this time, i dont know if my mind and body and family and job could handle it....

if i decide to Quit Tx at this would it be reasonable to Treat again sometime in january of 2009
after my daughters wedding, and hopefully a skinnier healthier me will then re attack the dragon

[BThompson4]

I am post transplant gen 1a and had quite a bit of fibrosis improvement by week 36 of treatment, so it is possible to improve your liver during tx.  I think in my case level of viral load is directly related to the damage occurring.  I had very low viral load the first year and a half after transplant (measured between 60k and 250k every three months in that period) and no liver damage; hep c hit hard thereafter though, with viral load going over 3.5 million and got to F2 fibrosis within only three years of viral load going up.   Biopsy at week 36 (March 2007) of treatment showed "no significant liver damage,"  which my doctor says is between F0 and F1 based on the biopsy.  

I am pretty big at 5'11 and 215 lbs prior to transplant, with weight falling to 195 by week ten of tx and staying there.  It seems big people have a lot of trouble getting svr with the SOC drugs.  I am on week 63 of 72 (cleared at week 22) and won't be that disappointed if I relapse.  The  SOC drugs just don't seem to pack enough wallop for the big geno 1's.  Given the liver improvement, I will be content to wait for the vertex tx, which seems more and more to be a likely option in no more than a couple of years.  Whatever happens with your svr status, I hope at least you have bought some time with SOC.  I sure don't envy the decision you have to make.

[PokerRon]

Question: Who do I listen too, people who are not doctors, that ive met on the INTERNET
or My Gastro Doctor, who presumably has some hep experience..

Answer: every insticnt in my body tells me to listen to you great people on this and other websites.
honestly everything you people have said seems to be more current info and all the info seems to ring true to me.

ive read ive researched ive listened to the people on these chat sites and i really have come to
appreciate all of your unselfish help assisting people like me with this HEP VIRUS...

TIE BREAKER:  i guess thats what we can call it, will be the second opinion that i get next month..

in the mean time please please keep sharing any info and updates you may have with me
and all the other heppers out there

[CockSparrow]

I wanted to second zazzas comments. Now you know what is needed to do to beet the virus, and that is something more than SOC. The way to beet HCV is to kill it early, extending is trying to play catchup when the most likely result is relapse. Not worth the risk in my view. Next round is where I would place my efforts.

Best of Luck
CS

[PokerRon]

Copy
his last name begins with an N,,,, This doctor is on the liver transplant advisory at U of P
He is a Heptologist
and sems to have a ton of experience in these matters.............
October 10 is my Big Day...............i will post as soon as i get back from Visit that day,,,
btw..........ive treated my liver much much better starting with hep diagnosis in jan and the start
of TX in March, do you think i have much shot of my liver improving a stage or grade in that period
of time (That would be Fantastic consolation prize for my failed TX effort)

Copy thanks again for all your advice and thanks to all of you for taking the time to help
and advise me
THANKS
Ron

[copyman]

Does the U of P docs last name start with "R", if so you have made a good choice. if not there are many more very good hep docs there and i'm sure one of the hepatologist  will let you off TX with dignity and confidence.  and dont forget that whatever you decide you gave your liver a much needed break and who knows maybe even regressed a stage and now may be a stage 1. please let us know what the 2nd opinion is. take care

[PokerRon]

Thanks to you guys and all the rest of the great people who have responded to my questions and pleas for help.............you guys are fantastic, i admire the way you take time off from your own lives
to help people like me, AND answer  ALL my questions and help to point me in the right direction...

Hepatitis has been described as a huge MAZE and we all need direction, patience and help to get
from the start to the FINISH............

BTW I do have an appointment with a top HEPTOLOGIST at the UNIVERSITY OF PENNA
scheduled for early october.........i will keep you all informed
thanks for everything
Ron

[zazza]

You have collected information about how the virus and your body reacted to this round of tx. Use this wisely in the next round. So you see, you have not treated for nothing, even if you quit tx now. Zazza

[PokerRon]

NYgirl
right now im not sure if my doctor said 60weeks, it may have been me simply adding 24 plus 36
or vice versa 36 + 24 weeks.................im sorry if i caused any confusion...'''''''''''''''''''''''''................
it was probably just wishful thinking on my part...................
Man!, right now im so confused i dont know what to do next,....... id hate to Quit TX.. and i hate to have to continue treating for NOTHING.....besides........im very old fashion like my irish heritage, its against our nature to go against the wishes of Doctors, Priest, or Lawyers....sheesh  lol............
i need to find a doctor who will let me off this TX with dignity and confidence..

[susan400]

Please don't misunderstand me.  I'm not advising anyone to do what I said that I wish I could do, above.  I am talking about for ME and me only.  I've tried everything else.  Vertex is the newest drug that is up for approval.  Everything else is still quite a ways off.  Since I've already tried Vertex and it didn't work for me, that's out for me.  So, I don't know that I can wait another 5 yrs for something else to come along.

Susan

[nygirl7]

I agree with Jim and am wondering why a doctor would ever advise someone to possibly do 60 weeks when still positive at week 24.  There is no study data available that I am aware of that should give her any indication that that would even make a bit of difference.

Honestly I agree and advise to please get a second opinion.  You see you don't have only 267 virus' inside you you know...and even ONE is too many and is a failure.  I think your doctor is perhaps grasping at straws.

If possible you could go see Dr. Ira Jacobson in NYC - he doesn't take insurance but is worth the money believe me and maybe you could put down out of network or something.  He is the one who was the lead investigator of most of the studies that we use to determine the "code" of how long to treat etc.  

Good luck, I'm so sorry this happened to you.  This disease sucks.

[PokerRon]

What do i want to do?
, well like all of us i want to BEAT THIS DRAGON...

what i dont want to do is to TX any longer than necessary....if at 24 or 72 weeks i still
have hep c or i can expect to relapse at any moment, why continue the torture of this TX..

like copyman and others have been advised and have told me
why not wait for better TX coming down the road in a few yrs
stage two, grade two....im fortunate to have time and im fortunate to have this great Forum
to guide me to the correct decision..

I AM getting a second opinion in early October so will treat for a few more weeks at the very least.

QUESTION: does anyone know how my insurance company would feel about going against my doctors suggestion of continuing TX,,,,Can the insurance company bust my chops for going against
the doctors decision........Will my insurance co. be there for me in my future hepatitis battles?

my insurance is : BLUE CROSS BLUE SHIELD PERSONAL CHOICE
(im fortunate that i dont even need a referrral to see any doctor i choose, its expensive insurance
and is supposed be one of the best)

thanks to all for listening

[susan400]

What do you want to do?   I too, had a slow drop in my viral load and at 44 weeks came up with a 245 count.  I REALLY wanted to keep going.  I would have too, if the Dr. would have let me.  I just feel that despite what all the studies say, that if I had kept on pushing it, I would have cleared and then, from that point on, I could have done an additional 72 weeks.  I would have asked to increase my infergen upwards for the next month to get that clearance and then, started off my 72 week count down.  But, I wasn't allowed to do what I wanted to do so....      I just think that it's ridiculous to have to keep on treating over and over again, when you could just keep on pushing your current treatment and get to the clearance point and then, just stay on maintenance for a couple of years.  I'm sick of this up and down cycle of trying treatments - never clearing and then, starting over again.  I'm to the point now, that if the doctor(s) won't let me keep at it until I'm clear, then, I want to tell them to all just leave me alone about it, don't bug me, I'm done.  That's about how I'm feeling.  

Susan

[w.c. missy]

i was a non-responder at week 24 also (that was 2 1/2 years ago).  i was being treated at a major medical facility... the general consesus was for me to stop tx, because chance of going und was almost nil.  my care team felt it was in my best interest to stop tx, let my body detox from the meds, get healthy, and try tx again at a later time.  i am now in week 19 of prove 3, and hoping for the best.  but, honestly, for your doctor to tell you to keep treating after not achieving und seems unreasonable - after all, even on soc, you are on very powerful medications, and your body could probably really use a break.  i think (and don't quote me), that my doctors said if someone was not und after 24 weeks, the chance of clearing the virus by staying on tx was less than 2% - hence, the benefits of staying on tx did not outweigh the risks continued tx could do to my body.  hope this helps, it's just my opinion, but i've been there, just like you.  i would definately see a hepatologist for more current tx information.
wishing you all the best,
w.c. missy

[copyman]

"i hope jmjm will post his opinion and also the % of svr for 72 weeks when unde at 24"
this should have read "NOT unde at 24 wks"

and i worded the sentence about the doctor in boston wrong. he is not just the best doc for HCV in boston but possibly one of the best in the country.

[copyman]

i was writing my post as jim was writing his, he must of read my mind. the link at the bottom of my previous post is a link to a doctor cecil's website. if you go there click on a link to email him. tell him what you told us and see what he thinks.  he answers everyones email.

[copyman]

Hey Ron, sorry for the bad news buddy. i think you know how i feel about this. i told you awhile back to stop tx when you did not clear at 16 weeks. i think you should stop and regroup and try later. or at least you could get a 2nd opinion from a hepatologist that is up to date with the latest protocols and treats many HCV patients. you gave it your best shot and i'm sure you felt bad because of the weight based rx your were taking. i think you were on 1400 or 1600 riba? anyway PLEASE do not subject your body to this much "poison" for 48 or 72 weeks with little chance of SVR. there is a very good chance you will come out of this worse off then you are now. i have been to a few hepatologists and even traveled 400 miles to see one of the best in boston as you know and i was told by the boston doc to wait. he said stage 2 or under he reccomends to wait for the new meds. this has to give you some kind of indication that this is the right desision. i hope jmjm will post his opinion and also the % of svr for 72 weeks when unde at 24. as you know the % for svr for 48 wks when not unde by 24 wks is almost nil. the positive thing you can get out of this is you gave your liver a break for 24 wks and perhaps regressed some. best of luck and whatever you decide we will be here for you.





http://www.hepatitisdoctor.com/hcv_handout.htm

[moahunter]

I agree with the comments above. I am not a doctor, but I remember when I was taken off monotherapy, the logic was that I was better off having a month off, and trying to re-shock my system onto a new bell curve, rather than stay stuck at the bottom of this one. Seek a second opinion, you may be better off trying the other interferon after a break, and seeing what happens.

[jmjm530]

I would stop.

IMO your gastro is putting you at real risk without benefit of rewards, and the way you characterize your conversation with her makes me think she isn't up on the latest studies.

What the studies say is if you're still detectible at week 24, then your chances of SVR are almost nil even with 72 weeks of treatment. The fact she says you should *possibly* treat 60 or 72 weeks makes me wonder about her experience.

Maybe I'd feel differently if you had significant liver disease and were just treating to halt fibrosis. But you're only a stage 2 and have time to wait for better treatments.

Certainly get another opinion if you want, but get it from a liver specialist (hepatologist) and not another gastro.

I just don't see the benefits as a stage 2 of subjecting yourself to another 48 weeks of treatment with very little chance of success. And anything less than another 48 weeks would give you even less of a chance.

Sometimes saying enough is enough is the hardest thing to do on treatment cause we get into such a warrior mode.

All the best,

-- Jim

[cruelworld]

failed treatment. start later with vertex. you are "tough to treat".
just my opinion

[zazza]

I think you are doing well to continue tx until you get a second opinion. That sounds wise, if nothing else to be able to discuss the issue. You need to make a decision that feels right for you.

This is my opinion though. Look at r4c7's results with the induction trial. They are very good. You do not want to waste your time continuing with SOC, especially since you have a high BMI. Even with so called weight based dosing, you were probably underdosed. The truth is you did respond, but too slow. It might very well be because you had too low a dosing. You need a fresh, more aggressive tx regime.

268 IU/ml is not a low viral load at week 24. Being detectable at week 24, makes you a non-responder. If it was me, I would not continue tx. I am doing 72 weeks just because I was detectable with a viral load of <15 IU/ml at week 12. Drofi was detectable with a viral load of <10 IU/ml at week 24 and he is stage 3 or 4. He is also doing 72 weeks. I think Drofi's case really shows the limit of when to continue tx after 24 weeks.

[PokerRon]

i just got off the phone with my gastro doctor,, because i am so close to UD ( VL 268) at week 24,  he wants me to keep going, possibly 60 to 72 weeks instead of 48weeks............he wants to retest the VL at week 36 and if i am UD at that time, he would want me
to go at least 24 weeks from that time (maybe more, im not sure)
So i guess my question is WHAT SHOULD I DO?  WHAT WOULD YOU DO?

...........right now im going to keep taking my TX and i have an appointment for a 2nd opinion with a hep doctor from the UNIVERSITY OF PENNSYLVANIA named Fred Nunes.......Has anyone traveled down this road yet?

[zazza]

I know there are studies out there looking at even higher dosing of interferon and ribavirin if you have a high BMI. I think tjalaho and probably also r4c7 are in trials like this.

http://www.medhelp.org/posts/show/301351

I figure the trial mentioned by r4c7 is for geno 1's above 185 lbs? With high viral load.

[drofi]

the chance for SVR within a total time of 48 weeks is very very low. Since it was a hard ride so far, you should keep your power for a better second try. I support each single word from zazza. 2/2 gives you time. Try to be well prepared for the next fight, eg. to have a normal BMI (body mass index), if you did not.

[zazza]

Your 24 week VL does not look good. To continue tx you need to be UND by now. Looks to me like you need to stop tx, enjoy life and your daughter's wedding, and come back for another try sometime in the future. Hopefully there will be better drugs by then also. Anyway, you need a more aggressive approach next time, since SOC did not work for you.

I have a question. You say you were on weight based PegIntron. This is expressed in mcg (micrograms). My guess is you got 150 mcg, is that correct? That is what is normally prescribed for a weight of more than 85 kilo (187 lbs). The 0.5 ml is just the amount of fluid used to mix the powder with in the ready pen. I figure you might have use of this information if you decide to try to treat again.

I wish you the very best. Just enjoy life and family for now. You are only a grade 2, stage 2, that gives you some time I think. I am not so good with those biopsy results, hope someone else chimes in. Zazza