Treatment questions

[robin]

I've got a few questions if someone can give me reassurance, I'd appreciate it.

My body is getting stomped with treatment. I get epogen 60,000 and neupogen 40,000 twice weekly and in the last three months, I have had to get 7 transfusions due to anemia and just got off isolation with an ANC of less than 200.

Do some people just not respond to rescue meds and at what point will they stop treatment? I'm on a reduced dose of riba already and have never made it to full dose. I am on month 9 of treatment  and cleared early even on half dose interferon and half dose riba. They have hinted at my not making it until May, when they wanted me to finish and now are saying I may not make it to March. Anyone with ideas of what my chances of relapse would be if they stopped me this early. I wasn't on full dose interferon until the end of May and was only taking 2-3 ribas all along.

Thanks for your help...I'm all conflabborasted with odds right now. LOL

BTW...my transplant coordinator called just to say my LFT's were better than a healthy youngesters would be so that just made my day much better.

Keep your spirits high...robin

[DougV]

Robin,

Hard to answer and you're tp doesn't make it easier.  Procrit for me did not work the second time around.  I lived on transfusions, averaged one unit per week roughly.  Lowering RIBA helped only minimally.  As you know I've relapsed twice and I blame being forced to reduce RIBA for it (may not be true but I blame it.).

Best I can suggest is my normal suggestion.  See a hematologist.  They tend to be more aggressive in terms of blood chemistry so maybe they would help.

Doug

[Hank's mom]

Oh Robin!

When does the BS end? All I can share is what my TP doc told me since I already know I'm a non responder - there are more ways to keep the new liver healthy than just treating. According to him and his long experience going back to the beginning with all kinds of transplants, he hasn't lost anyone - or their new organ yet unless the recipient had other hidden issues or was hiding issues, ie drinking or drugging.

Hang tight - you've got a whole life ahead of you, though it seems pretty rough right now.

Susie

[robin]

Susie...the reason I am treating is that statistics show a new liver is attacked with a vengence after transplant if you have Hep C because you are immunosuppressed. They said I would have 6 to 8 years if I didn't treat. They even treat non-responders to try to hold off the damage to the new organ. Seems like different facilities treat differently. Dang, medicare didn't pay for my dental care when I was listed. Gee...guess I  missed that one.

Keep your spirits high...robin

[Hank's mom]

Sorry Robin -

Things change daily. Just read about something new - still in the rat phase - but I really do think the pharms are working harder than ever. Consider the revenue figuring this one out would bring. Crass but true.

Feel better soon. Love you Dearheart,

Susie