Treatment stopped

[viaduk]

Saw the hepatologist and hematologist yesterday, and the recommendation was to stop tx.  My WBC continued to drop, requiring minimum of  2 full doses of neupogen per week,  RBC need procrit, and platelets are not holding up their end of the bargain either.  On top of it all, the skin lesions are of various types (psoriasis, lichen planus, and something else that I can't remember but is red with tan/white postules.)  My entire body looks like a raw side of beef --somehow the face is spared-- and my mouth/tongue is full of erosive lesions. The peg has just worn me down.

So, now it's time to lick my wounds -- as soon as my tongue improves :) -- and figure out my next move.

[Diane12855]

I'm so sorry to hear that. Sounds like your blood cells really have taken a beating. Can't live without them so that rules the day... for now. You did your best, and that's all any of us can do.

Keep us posted as to your recovery from the different sx. That info may well be helpful to future members. Plus we want to be able to support you during that time. We are all here for each other, no matter what stage of this disease we are dealing with.

Diane

[nygirl7]

JT that was a perfect post and should help Viaduk tremendously.  Gosh it almost made me cry for real.

V there are no words to express how brave and valiant we all recognize you for being and how sad we are that you have to stop. Truly though it seems like the right decision for NOW. When the new drugs come out you can give it a whirl again and hopefully have the same results as jt.  

I dont know why but it seems to me the people who really have it the hardest complain the least and after all that fighting oftentimes are the ones who do not succeed on the first time.

But you better believe that they do fight again another day and slay that nasty beast once and for all.  I'm waiting to see that person be you someday soon.

Get well...........you deserve it. (PS the tongue ulcers should be gone in about two weeks from your last dose of IFN. I dont know about the other things but that I know for sure!)

[willbb]

Very sorry to  hear that. Give your body a break and we will get these new meds approved and  you will then have success in the future!  

All the best

will

[merryBe]

I'm truly sorry to hear this, it's so hard to take.
You tried your best, that's the way to look at it.
I'm looking forward to the new PI's also, and a shorter regime hopefully.
Did they try cutting your dose down?? It could be you weren't clearing the riba well, which happens if the kidneys are up to the task. When Lindahl did her studies she found folks with slow clearance had those symptoms, but state side nobody thinks to test for riba levels in the blood...I think they should...it could be if you had a doc do that you might eventually be able to succeed at tx.
Anyway, try to get well for now, and maybe soon they will have a tx that's not so toxic and has a better success rate.
That is the great hope these days.

my best to you viaduk...I know you did your best.
mb

[viaduk]

Thanks for the support and well wishes.  This battle is not over; I will live to fight another day!

I hope that posting my experience does not scare anyone from treating.  I am particularly sensitive to interferon, so my story should not be considered a benchmark of what this treatment will do for anyone else.

Again, thank you for the support.  This is a great forum, with smart and knowledgeable members, and I feel fortunate to have found it.

[HectorSF]

Sorry to hear you had to stop. You did everything you could do. Be proud of your efforts to give it your all. Some things are beyond our control.

You should start feeling better soon. At least you won't be dealing with all the side effects of peg-inter/riba while you regroup and come up with Plan B.

Thanks for keeping us informed about your treatment experiences.

Don't give up hope. As long as you show the will to keep fighting, you will find a way to choose the best options in the future.

Stay well and strong.
Hectorsf

[jt57]

I am on my second round of tx.  My first round I experienced the same as you.   I had to beg and take it one week at a time to not stop tx.  My skin lesions were the same, and very unbearable.  wbc was so low I was sick all the time, on top of tx.  rbc was never good, even though I was on procrit.  platelets, well they did not cooperate at all.  I was always one step away from being stopped.  But I trodded on for the whole 48 eks.    and was und from wk 11.   six wks after stopping it returned........  i am on my second round.  und at my 4 wk testing. this time, anemia is bad, just as before, but the wbc has been manageable with the low dose of neupogen.  haven't contracted illnesses as I did before.  and the skin lesions, psoriasis, lichen planus, etc.  NON EXISTENT THIS TIME!!!!  My point??   Dont let this get you down.  the tx is so hard, as we all know.  all the signs are pointing to stopping now.  Its not working for you at this point.  why put yourself through the whole tx when you probably will not be successfu.  Get healthy.  If liver inflammation is not too progressed, wait for the pi's.  If not, just wait until you are healthy, and give it another go.  It is not the end of the world, even though it feels like it.  You are healthier than when you started.  It just doesnt feel like it right now.  I have 3 months to go, and boy am I ready to be done.  I pray I am svr this time.  If not,  I am waiting for the pi's.  Can't do this again.  good luck to you.  you will prevail another day!!!!

Jean

[copyman]

So sorry for you. You gave it your best shot. This is not over yet. The dragon won this time but not for long. He will meet his match when the new drugs come out. Hopefully you will be able to do a shorter course of TX with the new drug added.

[Trish77]

I am so sorry to hear this, viaduk.  You went into this like a warrior and tackled it like a warrior.  It's hard to imagine putting up with such side effects.  This is when I have a love/hate relationship with these drugs we have to take.  Love them when they work, hate that this is what we have to subject our bodies and minds to as we battle for a cure and keep hoping for better drugs to come along quickly.  Hopefully one of the non-interferon combos will make it's way to clinical trial for you and you'll be able to avail yourself of that.  There is so much coming along the pipeline these days.  

I wish you a quick recovery from all this...take good care of yourself.

Trish

[tashka]

I am so very sorry to hear this. I can only imagine how hard it was for you to stop, knowing that many people are successful. But the reality is while some tolerate this treatment fairly well, others just can not continue.

I never experienced your kind of pain, because I don't have hepatitis C (my husband does). But I have been hurt many times during the course of my life, sometimes to the point that I thought my heart would physically break. And I think, in any kind of pain the worst thing is loneliness, the feeling that no one quite understands. Please, know that you are not alone. Day or night, weekday, weekend, or holiday-you can and will get our support here on this forum. We share your joys as well as your sorrows.

Try to get over the harsh drugs. Hopefully your skin and other organs and systems will repair themselves. Hang on and don't despair-there will be multiple new treatments available in the future. And one day interferon-free treatment will become a reality too. This is definitely not the end of the battle.

[foofighter]

for a valiant effort Viaduk. Next time, victory. The PIs are just around the corner. Get that peg outta your system and feel better soon.

Foo

[RobertBeWell]

Wow, sorry to hear that. You're one tough cookie though. I doubt I could have endured those excruciating side effects.

How far did you get in treatment? With the hoped-for shorter duration telaprevir regimen, will that be an option for you?

Robert

[eureka254]

I can't express how sorry I am that you're going through all this.  Treatment has been so difficult for you, and I know this must all be disappointing, to say the least.  

I'm sure your doctors are using the wisdom of 'live to fight another day.'  You know we're behind you 100%, but your downward trend and symptoms were definite alarm bells.  I hope you rebound quickly and smoothly.  Wishing you speedy recovery and all the best.
~eureka