Hep C Discussion Forum

Members Login
Username 
 
Password 
    Remember Me  
Chatbox
Please log in to join the chat!
Hep C Discussion Forum -> On Treatment -> How do you find out info about trials?
Post Info TOPIC: How do you find out info about trials?
DJ


Senior Member

Status: Offline
Posts: 306
Date:
RE: How do you find out info about trials?
Permalink  
 

mallani wrote:

Hi DJ, '..once I start treatment, my iron levels will drop a lot..'. Interesting comment, not sure where that comes from. Fe levels are often elevated in chronic HCV and have been blamed for poor Inter. sensitivity. Attempts are made to reduce Fe levels! As your levels are now normal, there should not be any problem starting Rx. Sounds like you are being stuffed around.

 I can't say I understand it.  I mean, the clinic I go to has several doctors who deal with Hep C and they have worked with many people.  It isn't a primary care doctor.  So I am finding this all very confusing.  I am going to go back next month and if she says wait again, I don't know what my next step will be.  I am ready to just quit and try to forget I have this problem.  I was SO ready to take on the fight and start treatment, but with each month's delay I am feeling like less motivated.



__________________

Genotype 3.  Treatment started on 1/11/2013 with Ribavirin and Pegatron.  Week 4 UND.  Week 12 UND.  Ended treatment on 6/28/2013.  Six months post treatment 12/04/2013 SVR.
mallani


Guru

Status: Offline
Posts: 3398
Date:
Permalink  
 

Hi DJ, '..once I start treatment, my iron levels will drop a lot..'. Interesting comment, not sure where that comes from. Fe levels are often elevated in chronic HCV and have been blamed for poor Inter. sensitivity. Attempts are made to reduce Fe levels! As your levels are now normal, there should not be any problem starting Rx. Sounds like you are being stuffed around.



__________________

Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
LUV2RYDE


Senior Member

Status: Offline
Posts: 161
Date:
Permalink  
 

Have you had a liver bx? Maybe if your liver is in good enough shape you can wait for the stuff that is in trials now that should be out in 2014....Just a thought. I dont blame you...I have been waiting on a trial that was supposed to start in June then Aug now I am told 1st or sec week in Nov....very frustrating.



__________________

Geno type 1A Started Abbott clinical trial mid Jan 2013. :-)

Viral load when I started this trial 4.75million  Went 12wks on placebo and started real meds on 4/5/13 after 1wk  on real meds 25 after UND @3wks,6wks.w00t: Done trial 6/27/13 and still UND.

 
DJ


Senior Member

Status: Offline
Posts: 306
Date:
Permalink  
 

Thanks.  Doesn't look like there is one that would work for me. 



__________________

Genotype 3.  Treatment started on 1/11/2013 with Ribavirin and Pegatron.  Week 4 UND.  Week 12 UND.  Ended treatment on 6/28/2013.  Six months post treatment 12/04/2013 SVR.
ArtiesGarden


Member

Status: Offline
Posts: 44
Date:
Permalink  
 

Go to "clinicaltrials.gov"

__________________

HCV Gen 1a, VL 13.2 million, diagnosed in August 2012, have had disease since the early 70s. Have had appointments postponed at UAB 4 times. Don't know when I will see Hepatologist, hope it is soon so I can get this show on the road.
DJ


Senior Member

Status: Offline
Posts: 306
Date:
Permalink  
 

I am honestly almost to the point of wanting to just give up.  I found out I had this in July, and mentally ready to get started.  Month after month my doctor finds a reason for me to have to wait another month.  Right now it is my iron levels.  I have been taking iron for a month and they are higher, but not good enough for her, so once again I have to wait another month to see if my iron levels are high enough for her.

I know I have low iron, always have.  She put me through several tests to find out why...and basically, it is just me (as I told her, I have always had low iron).  So $500 later (that is just my part, insurance had to pay more of course) I now no that I just have low iron and it is a problem for starting treatment.

So how do you find out about trials?  Maybe there is one that isn't impacted by low iron.  Well now I have normal iron, but she said once I start treatment my iron will drop a lot.

I was SO mentally ready to take this thing on, now I am just so discouraged.  I don't want to live with this thing inside of me.  I want it gone, but I feel like it isn't going to happen. 

Next month if she once again says I have to wait, I am quitting.  But if there was some other option that would give me hope, I would look into that.  I could look for another doctor but they would be at least an hour away.  But it is an option.

But if there was something that didn't involve low iron, I would really love to give it a try.

Anyway, sorry to go on and on.  I am just so upset right now and just had a good cry, and feel another coming on.  But it will pass.  I usually only cry for a day then I regroup and move on. 

So any info would be appreciated.  I have only read about trials, but know nothing about them.

Thanks!

 (P.S.  I am Geno type 3 and live in the US)

 

 

 



-- Edited by DJ on Tuesday 30th of October 2012 03:44:22 PM



-- Edited by DJ on Tuesday 30th of October 2012 04:00:12 PM

__________________

Genotype 3.  Treatment started on 1/11/2013 with Ribavirin and Pegatron.  Week 4 UND.  Week 12 UND.  Ended treatment on 6/28/2013.  Six months post treatment 12/04/2013 SVR.
Page 1 of 1  sorted by
 
Quick Reply

Please log in to post quick replies.
Hep C Discussion Forum -> On Treatment -> How do you find out info about trials?
Legal Disclaimer:

THIS FORUM, IT'S OWNERS, ADMINISTRATORS, MODERATORS AND MEMBERS DO NOT AT ANY TIME GIVE MEDICAL ADVICE AND IN ALL CASES REFER ANYONE HERE TO SEEK APPROPRIATE MEDICAL ADVICE FROM THEIR DOCTOR.