With some trials they won't allow rescue drugs. Some will. Most hepatologists and GI's who treat those with hepc regularly always allow rescue drugs. That is an excellent question to discuss with your doctor. Try to not worry too much. You may not need rescues and your sx may be mild. You won't know until you start treatment.
Agrees with trin, never sure about the rescue drugs and trials, I haven't ever done a trial, But I doI know with out them I would never gotten this far, don't think of it as a bad thing,
They can be a useful tool. Best wishes
Some doctors think the potential sides from the rescue drugs could outweigh the benefits.......I just know i wouldn't have made it through treatment without the epogen in a million years. Well made it successfully made it through anyway.
Haven't even started tx yet and I am worn out with worrying about this stuff.
Lol ! I have to laugh because I will be starting tx Monday and feel the exact same way. I will be in a trial which does not allow rescue drugs so we will see what happens. I am very nervous about all of this, for its going to change my life for a while. Somehow we will get through it. Hopefully a year from now we will be virus free and all of our worries will be worth it. Its going to be a rough year but we can do this ! I'm just looking at it as another one of lifes adventures ! Good luck to us--here we go !
Tippy – Don't say "It's going to be a rough year," say "It's going to be an interesting year." Yeah, it's true, there might be times during treatment when you wonder what the hell you were thinking. (Hopefully not.) But I have found a silver lining to even this. It's like climbing a mountain or any kind of experience that challenges you. You gain insights into yourself and life. Would I wish I didn't have to deal with this? Yes, of course. Am I happy that I've put my family and myself through a trying time for over a year? No, of course not. Have I been enriched by the experience? Yes.
You learn something about yourself during this treatment. Ultimately it brings you closer to an essential part of reality, which is illness. We all have it in our future if not our past. You can't avoid it any more than you can avoid life.
Good attitude Tippy. That's how you get through tx - attitude, attitude, attitude. I remember approaching tx with such zeal and apprehension at the same time. I must admit I'm a little weary and jaded from all these weeks on tx and that's to be expected. You've got to keep going forward no matter what. Good Luck and keep that postive energy flowing. I wish all of you that are starting treatment the very best of luck - stay on the board. The support can be invaluable.
I agree with you that you need to make that phone call to your doc to find out his position on rescue drugs before you start treatment.
It's equally important to find out if your doctor who will not prematurely dose reduce OR prematurely introduce rescue drugs. My NP told me from the get-go that she avoids dose reduction and introduces rescue drugs but only as needed. She allows me to go much lower than I'd have expected.
Sometimes when I call the lab for my numbers, the person seems so sad to relay how low my platelets and neutrophils are. Then when I talk to my nurse, she's ecstatic how great they are!
Our numbers can bounce around a lot on treatment and it takes an experienced and confident specialist who knows up from down. There is no point introducing rescue drugs if you would have spontaneously improved your counts anyway. It's spectacular how my neutrophils have bounced around without rhyme or reason.
It comes down to judgment and that can be tricky at the best of times.
Some docs offer rescue drugs, stubbornly avoid dose reduction and believe counts can go much lower than many might think. This approach, which is my doctor's, suits me. I can have the rescue drugs if I 'need' them.
'Need' is a relative term, based on the expertise of your doctor. I trust my NP to intervene at the right time. She even gave me rescue drugs to keep in my fridge over seven months ago, saying she wanted them to be in place, in case I ever need them. So that's a nice security blanket but so far I haven't had to take them.
I hope you make that phone call. Good luck with it.
My trial doesn't allow rescue drugs and I was ok with that going into tx. Fortunately I haven't needed them.
My daughter will be tx'ing this summer. We interviewed my hepatologist (before the trial) and she no longer gives Procrit. She states the risk of aplastic anemia as her reason. Instead she lets the hgb get to 8 and then does a transfusion.
Needless to say, we will be interviewing another doctor.
Tx can be hard enough. Why not let us have help if it is available.
I would definately make sure you and your doc are on the same page as far as how you want to proceed with your tx.
You may not even need them, but I think it's best to have them as plan B to keep you on the meds as long as possible.
I agree with Marc...I wouldn't wish this on anyone(especially my kid) but it has enriched my life in ways that I never imagined.
And also with Trin.....attitude is HUGE and will help get ya through the rough parts.
The "hurry up and wait" that we have to go thru before starting is enough to drive us crazy. I thought my head would pop off. I think the emotional high I got from finally getting started carried thru the first 12 weeks. Either that or I was just speedy from the Riba, lol! Either way, it worked =)
I wish you and Tippy the best and light sides, too. Keep us posted.