I relapsed

I got my 8 wk post tx results.   I am so upset that I am not undetected anymore.  My viral load is at 2,700.  I am really torn on what I should do.  But the good news was that my ast/alt were normal for the first time in a very long time.  

Jean

[GSDgirl]

Jean, I am so sorry to hear this.

Denise

[desrt]

That sux. Since you got to undetected, you have options, now or in the near future. Have you given any thought to a Plan B yet?
Take care.

[jt57]

At first, I just fell apart and swore I would not retreat.  But I am rethinking that.  I feel that with the viral load being low, that maybe I should just focus on getting my strength back and go back on treatment.  Maybe I can clear early and only have to go 24 wks instead of 48..  I don't know.  Anyone have any ideas?

[desrt]

You've been off tx for two months I wouldn't plan on going back on right now with the expectation of being able to SVR with 24. In your situation I would build my strength back up and see what develops with the PIs. Better to wait a year or so and maybe be able to do a shortened tx then rather than start a high-dose extended tx now. Just my take on it. Unless you feel some urgent need to jump back on?

[jt57]

one reason is health ins.  I am on cobra.  My employer filed bankruptcy.  I don't know what is in store for me if I wait too very long.   My doctor mentioned a daily shot, infergen, rather than the interferon???  I don't know much about it.

Also, my load is low now.  But if I wait, I feel it would most certainly be higher, which makes it harder to clear.     what to do, what to do.....

[desrt]

Deinitely do some research on Infergen if your doc feels you're a good candidate, but I understand that's a tough tx. Make sure your doc has experience with Rxing this and that the two of you have all your contingency plans in a row and are in agreement on what to do based both on your viral response and what your blood counts do.

[Bill1954]

I’m very sorry to hear this too. The first time I treated, I had poor initial response with Pegasys; I retreated within 5 months with Pegintron and eventually cleared; now SVR. I also did some high-dose footwork whithin all that, but the point is there is hope.

You’ll eventually prevail—

Bill

[jt57]

Yes. I will definately research this.  I had problems with platelets, as low as 40, hgb hovered around 8, until procrit, then it stayed around 9, and my white count stayed around 1.8 to 2.

So Infergen is tougher?

[R Glass]

I am sorry to hear the news. We will be here for you.

[desrt]

Put 'daily infergen' in the search box at the top of the page, you'll get over 800 different threads worth of opinions. Never done it myself, so can't say.

[copyman]

sorry for your bad news. do you know what week you cleared the virus during tx? how often did you do PCR's during tx? did you have a end of treatment of TX test or any "post" tests before this 8 week test?
I agree about waiting for the new drugs. I personally would not do infergen. If I had stage 3 or more fibrosis I would do maint interferon to hopefully keep fibrosis to a minimum until the new drugs.
Best of luck

[jdwithhcv]

So sorry to hear this.  Best of luck making a treatment plan going forward.  Please keep us posted.

jd

[Bill1954]

I had two doctors tell me that “to a patient”, Infergen kicked butt with regard to side effects. I was expecting to use Infergen the second round, but my hepatologist didn’t feel the numbers supported the product; he recommended Pegintron instead.

Do you feel comfortable with your current doctor? My first treatment doc insisted I take a referral to another hepatologist; he told me that was just good medicine.

Also, discuss the status of the upcoming PI’s with the doc; they appear inevitable at this point. At least sometime soon—

Bill

[jt57]

I cleared the virus around wk 9 and remained clear.  I did an EOT and was und.   At wk 4  post tx I was still und.  But got the bad news at my wk 8 test.  My biopsy showed stage 1 grade 2.  And now my LFT's are normal.   What is interferon maint?  My doc has not mentioned this.  

[jt57]

I would like to see another doc.  I think my doc is a good doc, but just not quite on top of things the way I would like.  GUess you can say I am a high maintenance patient!  Is Pegintron taken once a week?

[desrt]

http://cme.medscape.com/viewarticle/565457

The above link is considered a fairly widely accepted study on the value of maintenance IFN.

[kciav]

Jean,
So sorry for this bad news.  

kc

[Bill1954]

Desrt; thanks for the refresher. I’ll post a quick excerpt from the article you linked above about interferon maintenance therapy:

“"Long-term maintenance therapy with peginterferon failed to halt liver disease progression, and it's not indicated in patients with [HCV] who have advanced hepatic fibrosis and who have not responded to a standard course of interferon and ribavirin therapy," said lead author Adrian Di Bisceglie, MD, from the St. Louis University School of Medicine.”


Jean; yes, Pegintron is Schering Plough’s version of weekly pegylated interferon. While most studies, including the IDEAL study didn’t find either Pegasys or Pegintron necessarily superior, sometimes there’s enough ‘wrinkles’, or difference between the two to make the difference. As mentioned above, the fact that you *did* respond is encouraging; you do have options at this time.

I would at least take a referral to another doc just to get his opinion, if nothing else. I you don’t hit it off with hen/her, you can always continue with the old team. If you can, hook up with a large center that treats lots of HCV patients to get the most advanced knowledge and care.

Many of us have been where you are right now, and have eventually gone on to beat it. Let us know how things go in the future—

Bill

[Marcia2202]

I'm so sorry Jean. I cannot give any advice, but just wanted to let you know that I'm thinking of you.

May you find the way to treat successfully.

Marcia

[IAmTheWalrus]

Sorry to hear this news. I just got the same news a few months ago myself. I am going to try to wait for the PI drugs next year. Have you looked into getting into a trial for one of the new drugs? Might be an option.

Best wishes to you.

[newleaf09]

You cleared early at 9 wks so I'm shocked that you didn't remain clear.  I agree with desrt.  Get your strength back and go again with a PI (due out in 2011).   I think adding another drug with a different kind of activity on the virus would be a better approach than using a different interferon.  The maintenance interferon has not been found to be useful, just keeps you miserable and in a holding pattern.  I'm sorry the insurance picture is a bad one, but I think your bast chance is to hold out for the triple drug therapy.  Hang in there.

[mikesimon]

I too am sorry about your relapse. I know the feeling.

One thing: you said that your platelets were around 40,000 and that your biopsy showed stage 1/grade 2.

Was the biopsy close in proximity to your platelet count - were they about in the same time frame? Do you have another medical issue which might affect your platelet count? That just seems strange to me - stage 1 and 40,000 platelet count.

Good luck,
Mike

[charm27]

I am real sorry to hear of your relapse.....Horrible feeling I know.
Take a deep breath, regroup you have time to make a decision...


Again Im sorry to hear this.
Best wishes in your future decisions!

You will make it!!!!!!!!! again!!!

[nygirl7]

I'm very sorry for the horrible news as well.  While it's admirable to want to retreat so quickly I kind of agree with the other guys and think that, since you have time, building up your strength and health again might be worth a while of time.  And as you might know I'm one of the more aggressive thinkers when it comes to treating that there are.

The PIs do hold so much promise for the future and seeing as you are stage 1 - with the other problems that you have (like your store and cobra and stuff) why not work on them for a while and see if that stuff falls in line for you and then maybe your EOT PCRs will too!

Just a suggestion but sometimes putting things into a different order is hard - after you've done so much work and been so dedicated to treatment it's hard to let it go.

I'm so sorry for the results.

[PegOnPeg]

Jean, I'm so sorry.  I can't imagine what I'd do.  I've already told my husband that I wouldn't treat again, but I wanted so badly to get this virus out of my body...I'd bet that I'd give it another go, if I had to.

Best of luck on the next journey.

regards   *peg*

[RCM829]

I really feel for you!
But the good news is that your early response to this round of treatment is a very hopeful sign for future treatment success. Hang in there. You really will beat this. It's just a matter of time....

[jt57]

My platelet count reached 40 only when I was on treatment.  I had no problem before the treatment.  Just treatment problems.  I know it isn't easy.  Just got off the phone with Duke.  They have some study trials I might try to get in on.  I am just truly concerned that if I don't treat soon, with my heath insurance intact, I may not have the luxury of being able to financially.  My early response to this gives me hope that I will respond again and hopefully stay clear.  I just am not sure which way to go with the different treatment drugs.  My health has always been good.  I have no other issues.  Just this hep c.  While on treatment, of course, I had the severe anemia, had to take procrit, and white count stayed low.   Platelets dropped drastically and so did the weight.  But I stayed on course with my treatment drugs, fought my docs when they wanted to stop me and finished my 48 weeks.  They too are suprised I relapsed, but said it does happen.  Suggesting the daily treatment instead of the weekly.  But I am not sure about that.  

Thanks for your input.

Jean

[jt57]

sorry Mike.  misspelled your name.  see above

[mikesimon]

I understand your situation and I sympathize.
I really don't have any advice. This stuff is a gamble.
Good luck,
Mike

[nygirl7]

They have some study trials I might try to get in on

Just make sure that whatever you do IF it doesn't work you are able later to take the PIs.  The trials are wonderful BUT unknowns exist.  And as happened to a great friend of ours in here...she did one trial and stupidly they put her in the arm with no ribavirin and she failed because of it but now she CANNOT take the PIs again they say because she has built up an immunity or something.

You have so little damage right now - that you do not want to ruin any chance you MIGHT need in the future.  Not that you will but please keep that in mind.

The second time treating is more difficult because of immunity/mutants whatever as it is.....don't bite off your nose to spite your face so to speak.

I do admire your tenacity greatly but just want to make sure you temper it with widsom that comes from outside (because of course we aren't vested as strongly as you are) and look at all the options and complications to be careful.

[jt57]

you are so right.  Thanks for all your help.  I am so disappointed, but I knew there was a chance I would not have svr.  

I appreciated this board so much and all of you for being here!!!!

Jean

[Andiamo1]

I know exactly how you feel having relapsed 7 times!  I would either wait for the PIs to get FDA approval or get into a trial.  Given that you are worried about medical insurance, a trial might be best since they are free.
best of luck to you,
Eric

[copyman]

I did not know your stage and is why I said "stage 3 or more I would do maint therapy".  There are studies that show maint therapy will give your liver a break and is basically borrowing some time. This obviously does not apply to you being a stage 1.

Since you are a stage 1 waiting is the right choice. Regroup and wait for the new meds.

good luck

[meakea]

Jean, I'm very sorry that you have relapsed.  I have no advice but I know you will know the right thing to do once you have all the information you need.  I wish you the BEST!

[Magnum]

Please accept my sympathy, but there is still hope....

Magnum

[sunqueen]

I'm sorry that you relapsed. I hope the future holds nothing but brightness and good health for you.