5 weeks of treatment almost complete

Five weeks, 43 to go! I started the the boceprevir this week (very thankful to be in the trial). The last couple of days have been kinda rough, maybe the hemo is dropping more. I guess ill know soon enough. It's amazing how much strength a lot of you have had through very long and tough treatments.
Thanks,
Dave

[HappyDeb]

Hey Dave, How long did you have to wait to be in the trial @ how did you get to join ? Two big questions !! Ha Ha. I just got off the phone with the nurse of my new Dr. and they are hell bent on putting me on tx., I am geno 1, treated over 3 years ago for 12 weeks @ went off tx. for being a slow responder at only a 2 log drop @ not a 2.5 drop. biopsey @ that  time was 1-2-1 @ V.L. was 8.6 mil. , now my new biopsy was 2-2-1 and V.L. 2 mil. I feel that I want to go on only one more time @ that is with  the third drug boceprvir. I want to feel and look ****** only one more time and have it all worth it !!!

[spectda]

Hi Deb-
Perhaps we don't know something about your case or your doctor is not that well informed. Stage 1 by itself without some other reason to not wait for a Protease Inhibitor like boceprevir or telaprevir doesn't make sense. I have changed doctors a couple of times because they don't make sense to me. I would get a second opinion from someone who treats hep c regularly since we are not doctors.

I found the trial I am in on the clinical trials site: http://www.clinicaltrials.gov/ and searched hep c information. I thought it was the best one because I suited there requirements and there is no placebo since it is really a trial to treat anemia which is common with boceprevir as well as ribavirin of course. I had to screen a couple of times before my hemoglobin was below 15 to be accepted. I was turned down the first time, but the trial people were great to me and had me try again. They were also having trouble finding people with low enough hemoglobin to fill the spaces. My hemoglobin was very close to the requirement to begin with, maybe it's because I've been a vegetarian for 35 years.

There are other trials, but a lot of them want treatment naive people. Not all of them though. You probably have time to wait until the new PIs are available if you can't find a trial. Why don't you try to find out why your doctor believes that you should treat right away.
Good luck-Dave

[willing]

ever onwards! Best advice I've ever heard on this forum was from mikesimon - just keep putting one foot in front of the other....

[nygirl7]

Congrats Dave on starting the Boce I know you can do this just remember it's only for a few months and then you will be cured and it will be OVER.  Hang onto that thought on the rough days, it will help I promise.

Do make sure you are having that hemo monitored FREQUENTLY.  Would they let you do procrit if it drops that much? I think that Boce trials did allow that. God knows I would not have made it through tx without my epogen (But that was mostly my fault for taking way too much riba I can't whine really just saying it's works wonders but DOES take weeks to really kick in so make sure you are on top of that).

How often will they test your hemo?

[spectda]

thank you both for the advice and encouragement. There is no option but to keep going. I really shouldn't complain, I don't think I've had it so bad so far from some of the horror stories I've heard. just seemed to change a lot in the last couple of days, maybe it's the boce, or maybe it's just more time on tx.  

nygirl-

they check the hemo every two weeks, they took blood five days ago but I have not received the results yet. Since then I started the boce which often contributes to the anemia. They randomize you into a procrit or less riba arm if you go below 10 hgb, that's the downside of the trial, they may reduce the riba. However they insist that it does not effect the result because you are getting enough riba if your anemic, and of course I get the real deal with the boce. I guess time will tell, but I am feeling positive through the haze!

[Trinity4]

You'll make it Spectda.  Most of us do and at least by the end of tx you won't have that anxiety level associated with wondering if you got your SVR.  Pretty positive that's a given.

Trin

[spectda]

Hi Trinity-
Thanks for the support, I would never for a moment consider giving up, just needed to whine a little! The people here do wonders for each other and we are lucky to have such a well informed, compassionate, no-opinionated (lol) group!
Dave