ANC = Absolute Neutrophil Count
Susan
If feasible, why dont you get second opinion from a good hepatologist outside of the trial? Combining the facts that: (1) you're in the control group; (2) both riba and peg have been lowered; (3) no helper drugs are allowed; and (4) they have threatened to "hold dosing" if you hgb drops less than half a point -- if it were me, I'd minimally get a back up plan in place. Treating privately, outside the trial restrictions, may be in your best interests at this point.
-- Jim
Just to clarifiy
Should have read the Accelerate stats a bit closer. I have got some of the numbers in each arm around the wrong way. The Pecentages are still correect except for the cirrhosis stat which is 50% instead of 48%. I posted the combined stat by mistake.
CS
I like the way you are thinking. Having a plan B is a damn good idea.
CS
All...my plan B is the H*ll with that, I have my drugs and I'm doing them!! (kidding, sort of:} 7 weeks of Peg and a bottle of Riba!
I can hang in there, they may not!
Seriously tho, CS where do you get these studies, stats so quick, on hand? I am by no means 'dingy' but my comp. exp. is mainly typing, faxing, copy, folders, etc. and never spent a lot of time researching (until now) so how the heck do you decipher thru the 20,000 web sites, advertisement sites to get to what you need???? Drives me nuts. Can you send me the links for accelerate or others off post, maybe save YOU some time, LOL
I agree totally with a back up plan, problem is my insurance won't cover, I can cover some but not all, and if I was to start with someone else, I'd have to cover all and be out of trial. I am going to find another Hep Dr. for a back up in my area, anyone remember who it was that had one in Lake Land, Or Lady Lake Fl.??
I also agree with NOT lowering Peg anymore and my only guess they lowered it to 135mg. is the Dr. seeing RVR at 2 weeks (don't know?) and that he saw anemia coming and is trying to lower all and keep me on longer, also being small- weight.. These are all guess's here! It is all run thru their 'Monday pow wows' so I am -sort of- getting more than 1 Dr. plus trial coordinators.
Pigeonca......I also think it's all the Riba! At the risk of jinxing myself--you know as soon as you say it, you get it!!----but I have had very little 'bad' shot nights/days. Not one fever, a few sweats and only more fatigued a couple days after. Muscle throbbing I've had for years from hep, so nothing new there.
I am desperate to do as you said....a least get to 12-13 weeks as did do a lot of research in that, 2b's and 12-14-16 weeks etc. plus a lot of info from CS.
Now here's my idea! As in a control group, BUT it's still my life, my SVR.........and I have to take some control here TO stay in tx. , I am thinking of dropping my Riba to 400 for just 7-8 days until next labs’.
CS had posted previously about-put simply- the importance of lowering but not interrupting meds. I am afraid they'd know if I went elsewhere, got epogen,etc.
What IS the 'dangerous' level of anemia?
If it gets to that level, will just stopping the meds bring it up, or am I in trouble and have to get rescue drugs somewhere? (going off trial)
If I can get to 12 weeks, I'd let them 'hold dose's' and still go back and do more!
Thanks much all, LL
Thank you :)
Always had 'Nuets' on it than had ANC. I do have the list of normal ranges for all.
This medical mumbo jumbo has been quite a learning exp.!
Get my e-mail to you :} And have a 'light at the end of the tunnel' day :}
LL