Neupogen-should I?

[karley]

Hi everyone...haven't posted in a while, am OK but have had rocky road w/tx. I'm at wk 36 of tx, and cleared virus wk 12 but the past 10-12 wks not good. B/c of low red and white counts, Riba and IF reduced and stopped 10-12 nonconsecutive wks. The problem now is neutrophils (red counts better since Procrit). Neupogen has been prescribed. Last biopsy 4 yrs ago showed minimal liver damage but viral load extremely high, tens of millions (can't remember exact). Had a bout of high enzymes before start tx but it started settling down.
I don't feel very rational right now. I can't decide if the risk, side effects worth it since liver damage minimal and maybe they'll get a better therapy later...anybody have advice? experiences? It's either the neopogen or stop tx. Thanks for any ideas. I have been willing to do anything to finish tx but now I'm wondering if it is wise. Neupogen sounds scary.

[honestyplease]

My husband and I took this treatment.  It was only temporary in its effects, once off everything not only went up but got worse.  Ther permanant horrible side effects have ruined our careers.  We can not get any health insurance or life insurance and in our early 50's are living hand to mouth.  It has effected our hearing our memory, my husband has permant acid reflux which is threatining to blow his esopohagus, and our social life does not exist.  I had a year of problems with horrible pain from a botched biopsy.  And now we are not able to even seek medical help because we are uninsurable and broke.  Got any ideas anyone.

[oaky]

I think the Norwegian study is far too small too base any decisions on, but it surely is encouraging. Just as there has been talk that 48 weeks may be insufficient for some geno 1s, there is talk that 24 weeeks maybe "overkill" for geno 2/3. Roche is currently recruiting for a worldwide phase 4 trial for treatment naive geno 2/3s for just 16 weeks. We won't know the results for at least a year, but it should be interesting. Remember this is all very new- it wasn't long ago that the protocol for geno 2/3s was 48 weeks. They will get it right, eventually. The Insurance companies will insist on it...

[karley]

I'm 46, geno 1.  

My neutrophils are 512. The procrit helped the red count... it's 36.

[oaky]

Scott: there is a study re shorter treatment duration for Geno 2/3, though it is relatively small:
Short (14 Weeks) Combination Treatment with PEG-Intron Plus Ribavirin Produces a High Sustained Response Rate in Patients with HCV Genotype 2/3

Abstract Summary

The objective of this multicenter Norwegian trial is to determine the virological response rate after 14 weeks of combination treatment with PEG-Intron (peginterferon alfa-2b) and ribavirin in patients with hepatitis C virus (HCV) genotype 2/3 who experience early HCV clearance.

82 HCV RNA positive patients with genotype 2 or 3 have been included. All patients are treated with PEG-Intron 1.5 mcg/kg once weekly and ribavirin (800-1200 mg) daily. Treatment is stopped at week 14 in patients who are HCV RNA negative (Cobas Amplicor HCV monitor test, lower detection limit 100 copies/ml) at week 4 and 8. The remaining patients continue treatment until week 24.

63 patients have completed eight weeks or more of combination treatment. HCV RNA was negative at both week 4 and 8 in 45 (71%) patients and treatment is therefore discontinued at week 14 in these. The remaining 18 patients are receiving 24 weeks treatment.

The preliminary results show that 80% of those who receive short combination treatment with PEG-Intron plus ribavirin obtain sustained virological response 24 weeks after treatment stop (see table below).

Conclusion: This preliminary analysis suggests that in patients with HCV genotype 2/3 infection, a high sustained response rate may be obtained after 14 weeks of combination treatment.

03/28/03

Reference
O Dalgard and others. SHORT TREATMENT (14 WEEKS) WITH PEGYLATED INTERFERON ALPHA-2B AND RIBAVIRIN FOR THE TREATMENT OF HEPATITIS C GENOTYPE 2/3 INFECTION. Abstract 3818.00. Abstracts of the 38th Annual Meeting of the European Association of the Study of the Liver (EASL

[oaky]

A question, and if this is not my business ok. You mentioned you are doing 72 weeks tx. Is this because of past non-response, or is it because you REALLY want to kill this virus. Whatever the case, I wish you the best.
JC

[Indiana]

Lets have a show of hands of all the PATIENTS who think stopping early is a good idea! Lets think about this a minute here......
The "standard for type 2's and 3's has been 24 weeks. Over the last few years there has been a "trend" by MANY docs to treat them for 48 weeks.....to get better results. Apparently the 24 week results weren't good enough in many cases.
Now here comes a "study"....out of nowhere...that suggests that LOWERING the tx time is a good idea for SOME people?
EGADS!!!
I am suspicious to say the least!
The good doctor Dilgard is from Norway. Do they have "socialized medicine over there? I am trying to figure out his motives for trying to change something that works. If it is socialized medicine then stopping patients early would save "The State" LOTS of money.
There is NO WAY I would stop earlier than the "standard" no matter WHAT genotype I was! If anything I would consider going LONGER.
Just an opinion from "The Bleachers" here.

[britgirl]

It may be cos they want to save money, but it may also be a bit more noble a motive - to save people from unnecessarily high doses of the meds. If I had only done 14 weeks I may not have developed a dodgy thyroid, for example, as it was fine until week 24. With most drugs the doses are too high at the beginning. Look at the strength of the contraceptive pill when it first came out, and what the strength is today. Don't be such a cynic!!!

[layla]

I have been looking up some of my lab results and I'm not finding the definitions of some. I would appreciate info if anyone has these definition and what normal is for them. There is not a definition of normal on these like everything else on my labs.
What is RBC MORPH
What is ANISO
What is POIK
What is POLY
What is OVALS

If your MONOS are high does that just mean your more suseptible to infection or have one? Mine are 13.

My WBC was 1860 and is now 2410. I often see 2 digits numbers here for this. Are you just using the first 2 digits or are some test measurements reported differently.
Thanks for any help LL

[Indiana]

The key word here is MAYBE. There is a LOT of evidence that relapsers have WAY lower "odds" than those who clear the forst time around.
You did tx and cleared. Would YOU want to go through this again? I know that I wouldn't.
Cynical? You BETCHA. If you don't clear the FIRST time then where are we? The alternative is doing a whole round of those tx meds ....and for a MUCH longer time. Then where does that leave us as far as the "odds" of toxic long-term effects?
All I'm saying is let then do their studies on somebody else. There is NO way I would take ANY chance on this failing...for whatever the reason. They have a LONG way to go to convince me that stopping early is a great idea. I'm just not willing to go through tx again based on some "MAYBE". I'm not sure I could.
Anyways....How are ya doing? Is it Spring there yet? I see that "Beth" just got back from her European vacation. Are you planning any FUN trips? I hope you are doing well these days.
Take Care............

[Indiana]

"Protocol" for type 2's and 3's has never been 48 weeks as far as I know.
Did I miss something?

[honey1616]

Do all the 1's out there feel that 48 weeks will be enough if cleared at 12 weeks or....thinking that maybe going past 48 weeks...to be on safe side?

[oaky]

This was told to me, I thought, By my hep Dr. Perhaps the 48 week deal for geno 2/3 was pre-peg? If wrong, apologies.

[Indiana]

Hey......ALL this stuff for HCV changes SO fast,,,It's really hard to keep up with unless you watch it constantly. Thats why so many docs get "behind the curve" on the latest information.
So many of us depend on GI's for our treatment. They are involved with much more than just HCV. There is no way that they can keep up with the latest HCV info on a daily, monthly, or even yearly basis. That is why we need to educate ourselves on this stuff and keep up with it.
I came into this when there was no PEG. The odds for type 1's back then was less than 10%. There was no Riba. It was depressing to say the least. Then they added the riba. Then they added the Peg. It all happened rather quickly. The tx protocol has changed.....but slowly. It changed radically after Peg was approved. The difference was amazing for results.
The Peg protocol have been the same for years now. I suspect that this will change but probably not until the new wave of meds come out.
This is personal opinion.
There is NEVER a need to "apologize" for posting info we feel to be true. That is what this Forum is for......to sort it all out.

Honey.....
  If you were clear at 12 weeks, then 48 "should" be enough. LOTS of things to consider. You need to look at your own "personal" case. How are you tolerating tx?....Blood counts?....Mental stuff?....General quality of life?.....Starting load?.....Biopsy report?  There are LOTS of things to think about. What are the things in your favor and what isn't? Being female and probably a lower weight are good things. Look at the whole picture. I have watched with interest the studies and the ones I've seen have shown little advantage to extending tx for clearance reasons. I went to 50 weeks just to make myself feel better.
The latest studies I have seen say that we need to do 32-36 weeks beyond when we clear to get the maximum "odds".
But there is another side of the coin here. As Britgirl says....The toxic long-term effects of these meds cannot be discounted. These meds CAN have a permanent effect on the rest of our lives. The "Odds" are fairly low...but they are there. The longer we go, the more we invite these problems. It's a tough choice.
Look at your own case overall....look inside yourself after that.....THEN make the decision.
Whatever you decide.....you have a place "reserved" on the SVR bus....right behind the Driver.....so you can ***** about the drivin and so get out the last of that Riba Rage. hahahahahaha

[LvdByGod]

i surely would not want to be in that testing for tx niave patients...that is a risk i wouldn't take...coming off the meds too soon for testing purposes?!?

i knew before i started this tx that i would want to give it my all and i wanted a dr that had that same attitude. i was afraid i'd get a dr. that would take me off the meds too soon for some reason...or lower my doses...

now with my new dr who wants to extend tx. i am actually quite at peace by the thought of going extra time...

now, if i HAD TO consider stoping early this info would be good to know. afterall, no one wants to be on this stuff longer than necessary, esp. if they are experiencing extreem sides or it's dangerous for them to proceed...

still,the people in this trial are either very brave indeed, sacrificial, or just crazy...

[Galen]

I did both Neupogen and Procrit fro week 9 through 48 and was able to stay on full dosages.  That is what it is all about - staying on full dose, full time.  I'd do it if I were you.  What are your numbers?