Really need Info

[pln]

Let me recap real quick, my study dose not alowe rescuse meds untill we stop vx at the end of week 12, Sunday is the end for me. Monday I go to study nurse for blood and more meds, I know I am not in group D which stops all meds at week 12, so I either have 12 more weeks of meds or 24 more weeks. My riba started at 1200mg cut in half at week 3 for low hbg, so I think I should start procrit so I can go back up on my riba for my remaining time. Who knows I may be on placebo!! and vx has no track record let! I need to do what is best for me and my health. Now my problem my DR will not give me procrit, told me I do not need it my hbg is 9.5, but I feel o.k. I showed Jim a paper (study) my DR wrote that said after you become und lowering riba will not hurt chances for svr, I hope you remember that paper Jim. Shoud I demaned procrit?? or should I just keep going like I am?? I KNOW vertex and all of our study nurse's read this site , My nurse, PDS nurse and MRE, Dr all got a letter about this site and the vx lab rats that post, I have been a good patinet, But should I put my foot down now?? I tried to get a pcr at week 4, was told no, so I had one done at week 11, I know that will not tell me placebo or soc BUT I did not want to go to week 20 and not know,sorry jen,  I will find out my pcr today. What would you do. Thanks Pam

[l-horn]

" If your doctor is one of the like Big 3 then I would be interested to read it and see why they are contradicting what they have already posted data on. "

And just who is 'the big three' and who designated them that ?

[prettydamscared]

Thanks for all your input.  Pam's going to have a lot to digest when she returns from Meals on Wheels today.  lol

Kalio, I just wanted to thank you for all of your continued support and well wishes.  I don't really feel like I deserve it though.  Like someone said yesterday, the real heroes are the people that treat 54, 72 weeks and time and time again without giving up and continue to come to this and other boards and share their experience and knowledge.  In spite of differences of opinion, I admire so much the fact that many here continue to help each other even after they're finished with tx.  This thread is a perfect example.  I didn't know where to find those references and really appreciate that Jim and others did.

[MissMiss]

http://www.procrit.com/

Here you can get the full prescribing booklet.  Maybe this will help.

I gotta add that without Procrit I could not have finished tx.

Also, I am left with some heart problems I never had before.  They may have been there and tx just brought them out, from hgb being so low for so long, from tx itself or other drugs I had to take.  I just don't know yet.  Only that I have heart issues I have to deal with now.  I will post more after I have a better picture of what's happening.

Being in a trial may complicate things but living with hgb too low MAY complicate things later.  Your health is most important here, there are others in the trial who can make up the statistics.  Please let us all know how it works out.

miss

[prettydamscared]

Thanks for your input and the link.  I'm going to read through it very carefully and you're right, my health is important too.  I don't want to end up with ongoing problems from hg being too low for too long and it is different for everyone so I'm definitely taking that into consideration.

Char

[mremeet]

Re Shiffman's "knowledge" that pam was undetecable: Pam started with a low VL (~200,000) and her LFT's plummeted very rapidly after starting treatment. She went from like 118 to 23 within 2 weeks and even showed a significant drop within 4 days. It may be that he's simply inferring from that information that she's very likely to be on the VX and consequently went undetectable early on. Not that he's justified in concluding that with any certainty, but it might explain where he's coming up with that notion. Obviously only he knows for sure though. The question should be posed directly to him to see where he's coming up with that most definitive and consequential assertion.

[FlGuy]

You