To Re-treat or Not to Re-treat

[txpartner]

Hubby, 54,  has flushed out of tx for now on S/P PegIntron plus Rebetol. He did double dose for 8 weeks, then the sides were too much, then wound up taking Procrit and Neuopogen for last 2 months when his red and white counts got terribly low.  His 12 week tests were good (not great).  But at 24 weeks his viral load over 5M IU/mL.  He was only 3M IU/mL to start!   Liver bx:  moderate scaring, no cirr.  The sides were horrible, especially the 3 days after the PegI.

Doc has left choice up to him:  
Treat low dose Inteferon on an ongoing basis.  
Wait for new treatment, those new blockers show promise.
Join a trial for non responders being conducted in our area.  

In this Roche trial they are using a blind format:  

[shebee]

hi there...hubby 2b decided to re-treat.  He is on daily infergen & coPegas...and now procrit.  This is his 3rd shot of Procrit, which is starting to kick in.

He is at cirr. stage.  His options were not good...  Retreat or die early, or face a liver transplant.  He decided to give it another "shot."  LOL!  Instead of 24 weeks, he is doing 48.  The infergen is very different from Pegasy or Peg Intron.  This time around, he is staying at home, and I am working the 50-60 hour work weeks.  It is a toss up between us which one is more tired.

We are hoping that with more rest, his body will work better with the drugs and he will clear.

I would advise to try it again; however, if you don't have to do a trial, don't.  Why risk not getting drugs?

...and I think we all know our bodies better than any doctor.
I would do what I thought was right for me.

Shebee

Best wishes!

[Tess Marie]

Great thinking!I tagged on to a more recent thread. Thanks for the advice.

[justhinkn]

Hi Tess Marie,  I don't really have any response to give you except to say that you may want to "piggy back" as I did on a newer post--in fact, on one of the current day's--because they start falling to the bottom and it's hard to get anyone to notice a new question on an older post--just a suggestion!  Have a Happy Thanksgiving also!

[Tess Marie]

Having just completed 48 wks.of Peg-Intron/Ribavirin,(8/22)my VL came back showing I am a non-responder. I am pursuing every angle at this point. Female,60 yrs. young,1b,fibrosos 4, inflammation 3.Started therapy showing 1,000,000 copies/ml. Latest VL showed 2,900,000? Therapy was not the easy and I was off work for 6 mths. After stopping therapy on 8/22, I felt extremely better. Energy level bounced back incredibly. I won't
let myself even think about another round of interferon at this time. I have spoken to a retired well respected physician & he is recommending that I repair the liver as much as possible before considering another form of therapy. Some of his recommendations are the following & I am wondering if anyone else has had any experience with taking these. They are all antioxidants & amino acids: Milk Thistle, Selenium, Vit. E, Grapeseed extract, NAC. His comments were that most Doctors are only attempting to kill the virus with interferon therapy, and not attempting to repair any liver damage. He had also suggested another VL test, using a lab which has the capabilities of producing the results locally, as my labs go to Atlanta & I am in FL. His reasoning is that alot of things can happen in transport. Makes sense! I feel so much better that it is hard to imagine that after almost 1 yr. of intense therapy did not work.
Any & all suggestions would be greatly appreciated. I am also looking into any non-reponder clinical trials which are out there, if anyone knows of anything. I am willing to travel anywhere to become a part of a serious trial. My heart goes out to all that have this disease & are undergoing treatment. Their is just not enough information(history)out there for the persons going through this & it is my opinion that Doctor's really don't have a clue how to treat! I hope you all have had a good week-end & have a wonderful Thanksgiving with your families. Family support is essential treating this.

[justhinkn]

Thanks so much for your replies.  That gives me some idea on what to expect.

[oldhippiechick67]

I have insurance but I think the biopsy cost about 1300, the PCR about 400.  You can call the hosp. and ask billing how much it might cost.

[hph5477]

Hope this helps some.  My blood work for the HCV, Genotype, et all, was about $1070; that was the discounted price with my insurance company.  Sorry, but I can't help with the biopsy cost.

[justhinkn]

Pardon me but there's no more posts allowed today so I'm having to piggyback on this post.

What is the average cost of a liver biopsy?  

I have an doctor's appointment set up for a consultation soon but their office couldn't give me an idea on what the cost of the biopsy would be.  I need this for a general estimate on how much I can spend to meet my deduction without overspending in the last quarter.

Do they range around $2000 or $1000?  Also, how much do the blood tests run?

Thanks!

[willing]

you're out past the point where there's going to be any good data to guide you - so it comes down to an informed guess. Personally, with moderate scarring, I'd do the maintenace IFN if the sides were acceptable and just wait otherwise. Until data from the Roche and Schering non-responder studies shows otherwise, retreating as a combo non-responder seems too iffy to bother with.