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ginvlk
New Member


Date Joined Jul 2010
Total Posts : 3
   Posted 7/1/2010 12:37 PM (GMT -7)   
I am new to this forum, and am looking if anyone has been on the clinical trial with Boceprevir along
with the PEG and riboviron therapy.
I am 6 weeks into therapy and the SE or rough, so looking for some support.
Diagnosed 10 yrs ago with HCV Genotype 1. Always felt good, no issues with the dx, but Dr felt I should try to rid self of the virus.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/1/2010 2:39 PM (GMT -7)   
Hello, Ginvlk, and welcome to the forum! I don't believe anyone here is on the existing trials. I am waiting for the Vertex treatment using Telaprevir to gain FDA approval. I'm told that one of the treatments should be available next year. Are you in the U.S.? I was told that the other trial is mostly being done overseas. Have you had any positive response yet? I think it's a very good idea to try to rid yourself of the virus. I was diagnosed in '93 and wasn't able to tolerate the interferon (the only treatment available then.) Subsequently, the hep C caused cirrhosis and liver cancer. I received treatment and surgery for the cancer in '07 and am stable, but if I can rid myself of the virus, it's the best insurance against the cancer recurring. I hope I will be able to tolerate it. Hang in there, if you possibly can.

Hugs,
Connie
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


ginvlk
New Member


Date Joined Jul 2010
Total Posts : 3
   Posted 7/1/2010 4:42 PM (GMT -7)   
thanks Connie for you response.
I am in US.....actually Pa. and the research hospital I live near opened up the clinical trial
a couple of months ago using the PEG/ribavirin/Bocepravir and then looking at anemia. So they are actually looking at giving Procrit if the Hematocrit levels fall too low. So I am guaranteed the 3 drug. The boceprevir is very similar to the Teleprevir by Vertex. I think similar results.
I started out with VL of 8.555 mil. and came down to 484,000 in 2 weeks. I will get 4th week results tomorrow. I have been on the 3rd drug, boceprevir for only 2 weeks, so will  have blood drawn tomorrow to see how that has hopefully slammed the virus.
This trial is for 48 full weeks, as they think the full 48 weeks will be the recommended therapy time once this drug is released. My doctor says it is the best way to rid the dx  with no relapse.
I am so fatigued, cannot work, and hate medicine as I have always sought out alternative ways. I cannot express how hard this is for me to cope, but I try to hold out hope that by next April I could be healed. I guess reading the posts on this site, that it is worth trying to beat this.
Hope to hear from more folks, as I know there has to be more people who have been on this trial.
Thanks again,
Gin

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/1/2010 6:40 PM (GMT -7)   

Gin, well that's kind of depressing to hear it would be for 48 wks.  With the Vertex version, it is supposed to be the first 12 wks. with the trio and the last 12 wks. with just the combo, for a total of 24 wks.  That is all that my hepatologist has discussed.  My last viral load in Dec. was 68,000 and I actually had normal enzymes at that time...which I think was a fluke, as they haven't been normal in 20 yrs.  My doc feels that my HCV is not aggressive, which is why she didn't put me on the trial and said to just wait until it is approved.

It does sound like it's working for you, since your viral load has decreased significantly.  I hope you will be able to handle it and that it is successful for you.  We do have a couple of people who have been through treatment with just the combo, and found it difficult to get through but either made it or were taken off.

Good luck with your 4-week bloods!

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 931
   Posted 8/4/2010 12:15 PM (GMT -7)   
hi all,  Saw a news segment on Bocepevir this morning on CNBC. Merck plans to ask FDA for approval asap. Highlites were, 66% of  past responders who relapsed had a sustained virologic response. At this point, they only have data for 6 mos. after treatment. Treatment was for 48 weeks.      be well ppm guy

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/4/2010 3:51 PM (GMT -7)   

Thanks for the input, PPM guy.  I just read an online NY Times article about the same thing.  However, I don't think any of these new treatments will be available prior to next year.  Do you have hep C or liver disease?  I see you post in the MS forum.

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 931
   Posted 8/5/2010 10:04 AM (GMT -7)   
hi Connie,   Yes I have hep C.    I believe i contracted this virus back in the late 60s or early 70s(hippy era). I was dxed with ms in 95. I post on both boards in order to coordinate the two monsters.  I believe that the immune response from hep c is driving my ms(autoimmune). On the other side of the story, my ms meds, which are quite toxic exacerbates the hep c.  Both are chronic and progressive. I need to keep my liver as healthy as possible in order to handle any possible cure or halt progression. Can you imagine a cure comes along and your liver can't tolerate it(ms cure).  The ppm guy comes from my ms dx, primary progressive multiple sclerosis(ppms) a rare form of ms.  all the best   ppm guy

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/5/2010 11:16 AM (GMT -7)   

Ppm guy, that is certainly a double whammy!  Thanks for the explanation and much luck to you.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 8/5/2010 9:23 PM (GMT -7)   
Hello ginvlk and ppm guy. I just want to welcome both of you to the Hepatitis forum. Sorry, I can't be of any help concerning trials. I don't have any experience with them. Hopefully someone else will come along that does. Take care......thoughts and prayers...
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.

ginvlk
New Member


Date Joined Jul 2010
Total Posts : 3
   Posted 9/13/2010 8:47 AM (GMT -7)   
Just an up date as I am now in week 17 with the trial of Boceprevir along with PEG and ribovirin. I actually cleared the virus at week 6 which my Dr thinks is very encouraging. I continue with nausea, and after each PEG injection I feel sick for 2 days after. I have lost most of my hair which psychologically is devastating to deal with. I had hair to my waist and beautiful thick hair. I have lost 20 #s and have little appetite. I am not sure I c an hold out another 31 weeks, but take a day at a time.
I asked my Dr why I must do 48 weeks while other studies are recommending 24 only. He strongly feels the FDA once this is released will go for the 48 week period. He says the longer you can clear the virus the better the chance to stay clear.

Of those of you who have done the Ribaviron and PEG only.....have you had major hair loss?

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/13/2010 10:36 AM (GMT -7)   

Ginvlk, thanks for the update!  I don't recall anyone losing all their hair on the combo...maybe a little thinning.  Your hair will grow back.  That wouldn't be a big issue for me, as I wear mine very short, anyway.  What WOULD be an issue is having to do treatment for 48 wks.  I just don't think I can do it that long...although I could stand to lose 20 lbs.

I do know that there are now a number of pharmaceutical companies working on similar treatments, but the two with telaprevir and boceprevir are further along with their trials than the others.

I'm glad you are responding thus far.  Try to hang in there!  And please come back and give us updates.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 9/13/2010 2:41 PM (GMT -7)   
My hair came out by the handful while doing the interferon/ribavirin therapy. After it was over, the hair came back, not quickly, but within a few months.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/13/2010 4:18 PM (GMT -7)   

I guess everyone experiences different things on treatment.  My friend didn't lose hair, but got skinny as a rail.  She looked like she was dying of AIDS.  She put weight back on after she finished treatment.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland
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