Treatment Revision

[Bill1954]

Hi all,

I recently met with a hepatologist to discuss end of treatment details; I was previously scheduled to conclude treatment tomorrow, January 25. Based on new data, we determined it would be in my best interest to continue with my current regime for a total treatment period of two years.

Soooo… I’m currently in treatment week 71 of 104, with PEG-Intron 204 µg/week, and riba 2.0 g/day. Currently, I’m now scheduled to conclude treatment Sept 15, ’08.

A quick overview of my history and stats for anyone interested:

Dx 11/04 with HCV GT-1
Grade 3, Stage 3/4 per biopsy 1/05
Commence treatment 2/05 with Pegasys/Riba
Slow response at 12-week juncture; did not achieve 2-log drop
Increase riba dosage to 1800 mg/day, and extend Tx to 56 weeks.
Achieve UND (<50 IU/mL) by week 20
Experienced moderate sides with mild depression, severe fatigue, and significant diarrhea.
Relapsed at 30 days post Tx.

Commence re-treatment with PEG-Intron/riba 9/06.
Assigned dosages are as follows:
PEG-Intron 204 µg/week (~2.31µg/kg/week)
2.0 g ribavirin/day (~23.1 mg/kg/day)
Baseline HGB was 17.4; currently at 13.1 (no EPO required)
HCV serum RNA negative per bDNA (<615 IU/mL) assay week 4
HCV serum RNA negative per TMA (.74 = F-4, cirrhosis). While these specimen results may have been skewed due to gross hemolysis/haptoglobin results (the test sample was taken during treatment), my proven histology from biopsy in early ’05 indicated late stage 3, early stage 4 damage. Given that I have demonstrated progressive liver disease, it’s not out of line to assume I have indeed entered into cirrhosis since the last biopsy.

The rather disappointing results from the HALT-C study just released in the ’07 AASLD meeting in Boston played a roll as well; there are very few options outside of eventual transplant available for me in the event of potential relapse, *at this time*.

My liver is fully compensated, my lab values remain strong, and I tolerate treatment relatively well, from a subjective as well as hematological standpoint. I’m pre-approved for meds through Schering-Ploughs Commitment to Care patient assistance program; additionally, I was approved for SSI last year. I’m socially, financially and psychologically in decent shape; might as well take my lumps while my health holds up.

I thought I’d post this info to help others gain perspective into their own treatment protocol, maybe some of us can learn from this.

Here’s to wishing everyone well in there own travels;

Take good care, all—

Bill

[sfbaygirl]

Have you done a contrast Ultrasound?  It is possible all the tx helped your liver as far as fibrosis. I would try and get a Fibroscan if you can.  

I am glad you tolerate tx well and hope all goes well. We will be watching as you are in uncharted waters as said above.

All my best,
Linda

[GoofyDad]

Looks kinda like a jumping bean to me :)

[frijole]

¡Jejejeje

soooo that's laughing in Spanish?  I will have to remember that!
bean

[Proactive]

If I'm prying where I shouldn't, just tell me to shut the **** up....;^)
But I was hoping you could elaborate a bit more on your's and your Doc's decision making process regarding the benefits of  further extension? I understand you are also dealing with liver issues,is this being considered part of a maintenance tx program as well? (was continueing on with peg only considered?) I just keep thinking of the fda testimony/discussion on the benefits/improvement to the liver brought about from peginterferon, and if I recall correctly it was only about 15%, but it was a topic that was discussed
It's a long testimony:
http://www.fda.gov/ohrms/dockets/ac/02/transcripts/3909T1.htm

My gut(and that is all) tells me that at some point in time the benefits of the tx drugs would peak and show a sharp decline in improving svr percentages, ie., after 72 weeks if the virus is still resistant to the tx drugs, what are the chances it will finally crush the varmants? Just thinking out loud sorry...

Obviously, you are now so far beyond SOC and charted waters, it's pretty difficult to find any pretaining info...But would love to hear the thought process...I can also understand the thinking, heck I've done 72 weeks and I'm hanging tough, why not go another 32......if 72 is good, 104 has to be better...etc.

I'm rambling...must be the mindnumbing cold here this morning(+2), not to mention a stiff breeze on top of it (g)
pro

[sfbaygirl]

Bill,  Wow, 104 weeks!  I have to say I would do it if it meant a better chance of SVR. I had a fibrosure recently. My dr. asked me what I wanted and I said a fibrosure test. Be careful what you ask for!  Mine came back at f3 and I freaked. I was a stage 1, baby liver in places with the fibroscan. BX stage 1, so you know I was in panic. From what everyone said here, including HR, not to hold a lot of stock in the fibrosure. Seems it is still in experimental stage, as is the Fibroscan. I trust that fibroscan so much more. I saw my liver and others livers on a monitor. What a blood test does, who knows. I remember standing with the lab guy as he looked up fibrosure and how it was to be handled. He hadn't put in in ice or anything that is suggested for that test. He was learning as I was. So of course it can be skewed this way, if not by the next handler. Not only that, but they say the results are only good on the high and low end.  So I don't trust it at all, neither did the dr. but he appeased my request. I am going for a new fibroscan soon and will be much more confident in those results than that fibrosure that has to be handled with a lot of care.

You are near me aren't you?  Send me a message and we can chat about all of this. After being on tx so long you most likely have helped your liver, perhaps even gone down a knock or two. Fibrosure won't tell you that. Good for you for perservering though, I would have, if I could have. Que lastima, no por mio.

thinking of you,
Linda

[GoofyDad]

Wow Bill, That's a big change at the last minute. A shocking change in your plans for the near term. It does seem like a sound plan after all you have invested. Best wishes. You are going to do well.

Take great care.  

[willing]

you're setting quite a high standard for grace under fire sir, this is  a performance that will leave its mark around here. You know the landscape so well I hesitate to add anything - but when has failure to add anything useful ever stopped me from blabbing on?

That Fribrosure on tx seems the only questionable roadsign on the map.  You've got the time - why not ask about an on-tx bx with rna quantification of the bx tissue or a fibroscan? Things may be better than than that .93 suggests and if they're not you probably want to know anyway since you may want to pursue anti-fibrotics in addition to the likely svr...And did your hepa hazard a guess about what the extra time added to your  odds or admit he had no idea ? ( yeah, me and Diogenes, always on the lookout for an honest dr... )

All the best.

[jmjm530]

Good luck Bill. I think you should be very optimistic given your RVR this time.

-- Jim

[Forseegood]

it takes somebody with an incredible grasp of the culture to be able to laugh in Spanish....you totally got it...lol....~

[ladybug52]

Thanks for being an inspiration to all the others who have incredibly long txs.............you really rock since I am a geno 2 with a shortened tx compared to other geno 2's....
It just goes to show that the body can do it if the mind is willing....
You have an incredible mind and it's so great that you are doing what you can to keep it alive and healthy.
Did you ever in your wildest dreams realize that you would do this, or could do this?
I'm so proud that we became friends!
Was it the image of the gravity pull on my anantomy??
Hugs,
Bug

[Bill1954]

I'm truly smiiten by that eye; even if it is a facsimile! Thanks, anwaar, and don't ever show the other one. Some secrets are better left untold! Kinda like sexy clothes... so much better to leave something to the imagination!

Take care,

Bill

[Bill1954]

Thanks, Elaine!

Stay in touch will ya? I never get to talk with you anymore :o).

[Bill1954]

Tunadude- thanks for your thoughts, and good luck to you with your upcoming treatment decisions.

Take care, my friend.
~~~~~~~~~~

Copyman- you betcha! I’m hoping for SVR, and if I get a little time from treatment, I’ll take that to. Hang in there—

Bill
~~~~~~~~~~~~~
Hi Wyntre- I agree that there are probably inaccuracies involved in that test, especially during treatment. This was not a test I requested; it was ordered by the NP, and I even called the office and questioned whether we should perform it.

The doctor would not comment either way; and would not put any diagnostic weight or value to the specimen results. It’s kinda like toothpaste though; once out of the tube, it’s hard to put back. I’d treat the same based on biopsy results from three years ago.

Thanks for writing,

Bill

[anwaar]

You're my hero! I don't know what treatment really is, because I haven't been there yet, but from what I am reading here and what I have read on side effects from the med sites, etcetera, you're amazing, Bill.  

I believe it is far more difficult for you than I know, or you let folks know, but you're tough.  You are so funny with a great attitude and crazy determination.  I really admire you.  

I pray this will do it.  I'm sorry you have to keep fighting but if anybody can, you can!! We gotta love you, that's for sure.  Thank you for staying strong for everyone, Bill.  You provide hope!   "Eyewaar"! lol

[wyntre9]

I'll be rooting for you.

FWIW:  When I was DX'd in Nov. 2007, it was on the basis of bloodwork showing the virus and a Fibrosure test that scored  me at F4, or cirrhosis.  

But the biopsy of 12/05/07 showed a Stage 1, Grade 1 damage level.

I had forgotten all about the fibrosure results, plus I didn't understand what they meant, until a couple of months ago when I came upon the report during post-move organizing.  I posted on forum about my confusion as to which result was more accurate, the fibrosure or the biopsy and also asked for suggestions about repeating the fibrosure test now.

The advie I was given by many posters and HR was that the fibrosure results are not accurate when performed during treatment.

I don't know.  It made me decide to wait until after TX to do another fibrosure.

Has your Dr. commented on that; the reliability of fibrosure tests while still taking meds?

wyntre

[copyman]

WOW! god bless you my friend. 104 weeks, you are my hero. may it go by fast and acheive SVR this time. you deserve it to say the least.

PS, i hope after all that time treating you regress a stage or two with the fibrosis.

[Yellowfin]

Well, as I pray I can get through whatever lies ahead I will know there is hope as you have shown.  

Thanks for words of advice and understanding.  And you will be in my prayers also.

[Bill1954]

¡Muchas gracias, Señorita! Y gracias para las palabras buenas.

Pero mis padres fueron locos, ¡Jejejeje!

Hasta pronto, chica,

Señor Guillermo

[Forseegood]

you're an inspiration!.how can you be so dang level headed , strong and articulate on so many meds?!!! Shows it can be done...tus padres raised you right! Best of luck with this! You're a perfect example of happiness not being a rode to anything, happiness IS THE ROAD...you're making the best of whatever life throws at you, it's obvious...

[Bill1954]

Scary knowledgeable, huh? There’s a big difference between having hepatitis and becoming a hepper; I’ve apparently fallen into the latter category, eh?

Thanks for saying hi Kath—

Trying-to-find-a-life-Bill :o)

[Bill1954]

Thanks for your support, boys. Honestly, this round of treatment is tolerable; I’d rethink this as an option if it wasn’t. I’m as wimpy as the next guy, believe me :o).

The doctor *did* give the option to bail early if needed; that way their won’t be any AMA cr@p written up in the event I cry uncle. This would be important for future treatment purposes, obviously.

Best of luck to both of you; I wish you well in your travels,

Bill

[frijole]

Oh, my friend, what a long haul.  September 08 you say now?  So you will have been txing with only a short break since Feb 05. Throughout it all, you have maintained your witt and humor.  Heck, Bill, if I didn't know better, I would say a doctor wrote your post!  Boy we do become knowledgable in the ways of this disease, don't we.  

You are taking it well, better than most, I suspect.  I am glad you have a good team.  
bean

[cruelworld]

god bless america and all the ships at sea. what a tour of duty, 104 weeks!
yikes!   glad to see you are holding up well though. i dont see how you do it
but evidently youve got the patience.
go ahead and blaze that trail warrior.

[Proactive]

You have balls of brass my friend....I will never mention again my taking nearly 4000 ribas during my 72 week excursion....quick hand calcs say you will have taken 7500 ribas + of the little ctitters on your trip....unreal!! ...I hope at least you get tablets, the big white generic capsules suck!!!....can even fit them in the am/pm pill box! (g).
Best of luck in your continued journey...pro