I relapsed

[jt57]

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

[sunqueen]

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

[Magnum]

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

Magnum

[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!

[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

[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

[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

[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.

[mikesimon]

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

[jt57]

sorry Mike.  misspelled your name.  see above

[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

[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....

[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*

[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.

[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!!!

[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

[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.

[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.

[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

[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

[kciav]

Jean,
So sorry for this bad news.  

kc

[desrt]

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

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

[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?

[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.  

[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