Hepatitis Social Community
chiming in after months of wandering
About This Community:

This forum is for hepatitis patients, family members, loved ones, friends or anyone with an interest in hepatitis, to have open social conversations about any topic they choose, with the exception of religion and politics. Please note that our standard “Rules for Posting in Public Areas”, which are found in our Terms of Use , also apply in this community. If you are newly diagnosed with Hepatitis or you have questions or information to share about current treatments, research studies, clinical trials, or other medical issues pertaining to Hepatitis, please post it in one of our Hepatitis Communities ( Hep A , Hep B , Hep C or Hep-autoimmune ).

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

chiming in after months of wandering

Not really a question I just wanted to let folks Know that I'm beginning the process of possibly getting into a study here in NM.  I'm a tad bit scared but my last labs showed my ALT's moving upward,
2004 had a blood test for life insurance showing ALT's of 24
2/ 2008 needle stick, had blood test showed Hep C ALT's @ 45
2/2008 biopsy stage 1 / grade 1, genotype 1
7/2009 ALT's 56, all other blood show within normal to good parameters (by the way the hepatologist & PA say normal cut off for ALT's is 78
So I was informed of a study here and now I'm starting the process we are not even sure of the drugs being used, but they are for 1st timers and those who did not SVR.
I shall keep you posted if you want.  
a little scared.  
M4now
Related Discussions
11 Comments Post a Comment
Blank
751342_tn?1297434382
Find out more about that study. Some of the new drugs are very promising and if this study is for one of them, it might be a good thing for you to do. With your biopsy showing 1/1, you do have the choice to wait when the new drugs hit the market, probably 2011. Keep us posted.
Blank
717272_tn?1277594380
Look up studies on www.clinicaltrials.gov. If you cross reference by using the "map" choice, you should be able to see all of the studies in your geographic area and likely pick out the one that's going to be offered.  Studies are good, especially phase 3 studies (they know it works and is safe and they have the effective dosages figured, just need to finish proving that it works).  All TX is free, you're more closely monitored than with a regular doctor's office TX, can usually maintain closer contact with a study staff than an office staff.  The downside is that you may start out in the placebo arm of the study, which is just standard TX of Interferon & Ribavirin (called 'SOC' for Standard Of Care).  It's not a downside if you respond to standard TX but if you don't respond to SOC it can be very disappointing not to get the study drug.  Most of the current protease inhibitor studies allow for "cross-over", i.e. if you did not respond to the placebo arm's SOC after a certain time period, they will cross you over to TX with the experimental drug.

Several on this forum have cleared the virus in clinical trials, a small few didn't clear it on the trial drug.  I was in the recent Boceprevir for naive (never treated before) study and had a good experience.  Crossover was offered so I figured it was a win-win situation to attempt TX with the study, both financially and healthwise.
Blank
Avatar_f_tn
Hi Mary.  Good to see you back.  I hope you are well.

jd
Blank
476246_tn?1310999221
I'll second that. Good to see you back. Don't be scared, they take good care of you in studies. You'll be fine. Anyway, we are here if you need us.

Hugs, marcia
Blank
412873_tn?1329178055
I'll third that.  Good to see you.  

Please keep us updated on your trial information.  I am finishing up a Vertex trial and have been very happy with my care-even though I had to tx for 48 weeks....everything was free and my nurse answers her phone on the second ring.

I can't wait to hear your details.  My hepa is excited about the newer drugs coming out.  

Good luck to you.

Isobella
Blank
374652_tn?1311302831
Thank you so much for responding.  It helps.  I'm pushing 60 yrs in this skin and this will be another milestone.  My work situation is precarious, but one never knows whats around the corner anyway, so if the study is a good one, (the PA is a hcv pro, and proud of helping people clear) so I dont think she would encourage me to get into something that wasn't good for me. (nice to trust someone) Would be really nice to get that second chance + I want to be in good health to help out w/ my mom who is 86 now and in good health.  We're both carrying a bit to much weight, I guess as you get older food becomes a major pleasure pass time, neurosis.  Would be great to have this one nothing more than a memory/story.  
I will let you know what happens.
Thx, again,  I wish you all health and happiness.
M4now
Blank
439539_tn?1233469415
Hello.Please do keep us posted as to your decisions.Wish you the best with all the decisions you are and are about to make.   T.
Blank
374652_tn?1311302831
I just spoke with one of the heads at the center.  Anywho, this center has been doing research on HIV treatments for 12 years and just recently started conducting HCV studies, they are working in conjunction with the Gastro group here, who's head doc has released some of his own papers on the virus.  Apparantly there are also referring allot of patients to the study center.  So we will look at the drugs in trial and determine if it is a good fit for me.  If not now I will be considered as more drugs are introduced.  I have no clue what studies are going on now.  But I will learn more answers when I meet with the research nurse on the 27th.
OOh Haa,  No one gets out of here alive... make the most out of the time you have.  Inhale, exhale, inhale, ahhhh
Mary4now
Blank
264121_tn?1313033056
Good to see you Mary, Good luck with your decision making, let us know what you decide.
Blank
374652_tn?1311302831
Thanks I'm sure you'll be hearing from me.  best wishes to you.
Blank
Post a Comment
To
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
Hepatitis Social Community Resources
RSS Expert Activity
233488_tn?1310696703
Blank
New Cannabis Article from NORTH Mag...
Jul 20 by John C Hagan III, MD, FACS, FAAOBlank
242532_tn?1269553979
Blank
3 Reasons Why You are Still Binge E...
Jul 14 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Emotional Eating: What Your Closet ...
Jul 09 by Roger Gould, M.D.Blank
Top Hepatitis Answerers
163305_tn?1333672171
Blank
orphanedhawk
Rural Mural, CA
317787_tn?1373214989
Blank
Dee1956
DC
96938_tn?1189803458
Blank
FlGuy
South, FL
1815939_tn?1377995399
Blank
pooh55811
446474_tn?1404424777
Blank
HectorSF
CA
Avatar_f_tn
Blank
dontworry_behappy1