Stopping tx @ 28 wks- SVR chances??

[dlr2007]

Hi Everyone,
My husband, Rick, is 55 yrs old, genotype 1a with probable early cirrhosis and diabetes type II. He is tx'ing with Pegasus and Riba and was UND at 8 weeks.He is currently thinking of stopping tx due to side effects. He has had a hard time with his CBC's- already been hospitalized for a blood transfusion, and he is on Procrit and Neupogen weekly. Surprisingly enough, his platelets have held up- knock on wood. His Riba was cut from 1200 to 1000 after the transfusion- Rick also lost 35 lbs, making 1000 the appropriate amount of Riba for his weight.
  He feels awful and is getting tired of the whole tx deal, and is talking about quitting tx after we see his NP on Nov 5th. I'm trying to research how much his odds of SVR will be cut if he stops tx now, rather than going the whole 48 weeks. IMO, it's crazy for him to go through all this and then relapse because he stopped too early, and I remind him often that these sx are nothing compared to the symptoms of ESLD.
  Does anyone have any info on what the odds of SVR are in the situation? Thanks!
Dee

[chemister]

I stop treatment after 24 weeks. Start virusload 2700000, free from virus week 4, 16,
24, and 6 weeks EOT. I think i will get my SVR.  But  I had no chirrose. Geno 1 and 2.
The side effect would get better after a while. The body would/get used to the medication. Try to stay with your Tx, it will be better. I belive....

[GoofyDad]

My vote is with Bill. Go with the wink, wink, cough, cough ... backrub on shot nites.

[eureka254]

You've already gotten some very good advice from truly wise people, and believe me, I know how you feel.  Your situation is a mirror image of mine: my husband is geno 1, cirrhosis, and did not clear at week four -- and he, too, needed a transfusion at week 24, has lost 30 lbs, had to reduce riba from 1200 to 1000... but as hard as a battle as this is, it's one worth fighting.  

The fact that your husband cleared before week 12 gives him better odds than a lot of other cirrhotics who are trying to get to undetected:  some do it much later, and some never get there at all.  His response should give him incentive to hang in there as long as he can, at least to 48 weeks... one week at a time.  My understanding is that with cirrhosis, geno 1s have less than a 50% chance of SVR if they don't do the 48 weeks.  

My husband has been on 2 shots of procrit since week 24 and wasn't too pleased when his nurse recommended he do 72 weeks, but when there's so much at stake, there's no time like the 'present' -- it's a gift, all things considered, that the liver (and the husband) can still tolerate treatment with cirrhosis -- so do what you can, while you can, with what you've got, while you've still got it.  Hang in there, and best wishes to your husband. ~eureka

[jdwithhcv]

Sorry to hear that Rick is having a tough time.  The middle of tx was really hard for me - it seemed like I had been on the drugs forever, and still had so much time left to go.  That can be really disheartening, and the only thing you can do is take a "one week at a time" approach. Every week when I took my shot I would tell myself "I can do this one more time" and I would promise myself that if I really could not stand it I would let myself quit - next week.  That's how I got through it.  He's come so far I hope he will stick it out.

Procrit takes a while to raise your hgb.  This is because Procrit stimulates production of red blood cells and a red blood cell takes about 3 weeks to develop.  Once you get that process going you will see some improvement in hgb, but it takes a bit of patience.

Encourage him to hang in there.  He has come a long way and it would be a shame to have done 28 weeks for nothing.

Best of luck to you both.

jd

[nygirl7]

There really is no expectation if he were to quit now that he would have a good chance at SVR.  It would be hard enough if he was not early cirrhotic but means if anything he should be working hard NOT to dose reduce if possible and definitely continue until the very end.

With my procrit we had to play with the dosages a bit to get it quite right. We tried taking it twice a week (40,000 epo x2)  but then my hemo went too high so finally we did 40,000 every five days and it kept it in the mid-10s which was OK after I got used to it (going up is a huge difference from going down).

Have you spoken to the doctor about trying something like that?

Please discourage him from quitting - half a treatment duration most likely is not going to do it for him. A lot of us know how it feels.......it ***** but it willl be over eventually.

[newleaf09]

I'm with you and would discourage him from stopping.  There are decent odds of maintaining viral clearance if he became undetectable by week 4, but no studies have yet backed up shorter TX for those who clear later than 4 wks.  24 weeks was a critical point for me, as well; when I felt about my worst.  Procrit generally works, but it can take weeks to build up enough in the body to increase hemoglobin production.  It would be worthwhile to discuss his urge to quit with his doctor.  If they know he is discouraged by feeling so bad and can they keep his hgb up with the procrit, it should make him feel dramatically better and more willing to stick with it.

[can-do-man]

Those of us with cirrhosis, odds are not as great as someone with out. I'm a relapser who just finished my second treatment and believe me you don't want to do it again if at all possible.

Treatment seems to level out, you just have to go with the ups and downs and take it one week at a time. Being und at 8 weeks is a good sign, wouldn't want to lose that so try to soldier on.........Take care

can

[Trish77]

If he's tired of the whole tx deal, he's going to be REALLY tired of a whole liver transplant PLUS repeating treatment deal.  That's what he's risking if he stops now.  Comparing that to 24 more weeks of treatment makes that 24 weeks of treatment look like a cakewalk in comparison.  

He's at a really critical point right now - and what I mean by that is that it's really common around this midpoint or just after midpoint mark for people to get REALLY weary of treatment...they're halfway done but still have halfway to do and it's a really tough place to be.  And this is the place where people have to suck it up and dig deep yet again and regroup and go for it.  Especially when someone is early cirrhosis, etc.  There aren't so many chances yet.

You ask his chances if he stops now.  Well truth be told, he has much better chances if he keeps on going. It's just a helluva risk to take to stop now.  I don't know how he does it but it would be better if he simply accepts that this IS the next six months of his life. And take it a chunk at a time.  It's best to go a week at a time and get as far as he possibly can.  Just make it to each next shot and get as far as he can with the goal being to go all the way.  If his health is at risk, well then he can call it when he has to but he really needs to keep taking this a step at a time and aim to complete his treatment.

I have to give him credit.  Getting this far and being on procrit and neupogen the whole time is really giving this virus hell. Clearing at 8 weeks is good, clearing at 4 weeks would have been better but hey, if he didn't get tested between 4 weeks and 8 weeks, who knows when he really went clear.  There are ALOT of reasons to just suck it up and hang in there.  Whatever you guys can do to make this next while tolerable and easier.

Mental power is a big part of making it through treatment so if you can and he can particularly pamper himself the next six months and focus on the goal of getting through this, that would be the best case scenario here. Whatever takes his mind off of it, whatever stimulates him mentally and makes it tolerable, just get his fight on and get through it.

All the best to both of you.

[Bill1954]

Hi Dee,

Sorry to hear of your hubby’s problems; what a drag. I don’t know how to quantify his odds really; other than to say his statistical chances are around 45% to begin with, and almost certainly are reduced if he discontinues now.

There is some info out there that addresses interferon reduction at the twelve week mark; but your husband’s problems are likely to be more due to ribavirin? Take a look at this, and discuss it with his doctor to see if it would benefit him at all:

http://www.hivandhepatitis.com/hep_c/news/2009/101609_a.html

The bulk of discussion now involves *extension* of treatment for genotype 1 patients, unless certain criteria have been met. If he had a low initial viral load (<400,000), and was undetectable at week four, there is some supporting data to stop treatment at week 24; unfortunately, I don’t believe he meets these requirements.

Try to keep him going if you can; any incentives you can offer would be great. Maybe offer to give him backrubs on shot nights… or something like that… (grin!) :o).

Tell him to hang in there, and let us know how things go—

Bill

[Marcia2202]

Hi Dee.

Sorry to hear Rick is having such a hard time.

I believe that his odds would be next to non existing if he was to stop that early.

If he had been UND at 4 weeks, had a low base line viral load, did not have advanced fibrosis, he would have maybe been able to stop... but there are too many factors pointing the other way. If I was in his situation I would not stop.

Hope he will start to feel better, tx is a bizznitch, but it will have been well worth it if he pulls through and achieves SVR...

All the best, Marcia

[jessiejames1973]

if und at 4 wks there is evidence that svr is the same if tx is stopped a 24 wks, but risk of relapse is higher
Jessie