Hep C Discussion Forum

Members Login
Username 
 
Password 
    Remember Me  
Chatbox
Please log in to join the chat!
Hep C Discussion Forum -> Living With Hep C -> disappointment (rant)
Post Info TOPIC: disappointment (rant)
TazKat


Senior Member

Status: Offline
Posts: 479
Date:
RE: disappointment (rant)
Permalink  
 

now that u say that, I think the hearing in my right ear sucks now. but I did interferon in all 4 treatment I did. the sovaldi is the med that kicked its ass. keep chin up. right thing will be along for you...

Peace out

Taz



__________________

TazKat Genotype 1A null responder x 3 riba & iterferon twice, relapsed from Incivek 2012 with only 12 weeks left to do. stage 4 mild cirrhosis 4/25/2014/ started sovaldi riba & interferon.. finished treatment 7/17/14  results 7/25  cleared..

 

 
Zlikster


Guru

Status: Offline
Posts: 791
Date:
Permalink  
 

cheers Sandy, Malcolm!

i am not scare of any sx from interferon, except one that will further hearing loss/damage. I still haven't recovred my pre tx hearing :( I can get bald and skinny depressive wuss again. From all those aches, headaches were most unpleasant, but it's all bearable, i just can't afford more ringing in my head :/

I am slowly preparing to hit all those uk clinical trial sites and gamble with those arms...seems this is the last Sovaldi trial for GT3s! So 66% chance to get on arms w/o interferon, then one arm is cca 83% chance for SVR (24w) other cca 60% (16w), worth the gamble i think...still not sure what is Gilead's stance on RAVs from Sofosbuvir? I bet there will/are lots of relapses from GT3s on short Sovaldi (12-16w) tx?

btw, just got my (24w+EOT) PCR...i am back to pre tx viral load (32k IU/ml) YAY!. Seems hcv had some fun with massive replication in first few months post tx, now it's back to it's sloooow liver munching biz ;)





__________________

GT 3 dg. 08-2012 / FibroScan: 5 kPa F1 / FibroTest: F0-1 A1 / SoC TX: PegInt 120mcg+Riba 1000mg UND from w8 relapse EOT+4w
01-2016 Sof+Dac+Riba UND from w8, SVR24!
ucbgal


Senior Member

Status: Offline
Posts: 297
Date:
Permalink  
 

zlikster,

it's quite evident you're a fighter especially w/ all that's going on in your life.

wishing you all the best in getting into one of those trials.

sandy,ucbgal



__________________
mallani


Guru

Status: Offline
Posts: 3398
Date:
Permalink  
 

Hi Zlikster,

Man, go for it. You've got a 66% chance of missing Interferon, and even if you get it, Gilead will have Neupogen on hand to up the WBC's.  Sovaldi is worth all the hassle, and Trials will become harder to get in Europe.

Gilead want good results, and from your previous history, I'm pretty sure you would be 'randomised' onto one of the non-Interferon arms. Best of British luck!



__________________

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
Kellie


Senior Member

Status: Offline
Posts: 328
Date:
Permalink  
 

sending good thoughts to you zlik.



__________________

HCV 1A 1980. Dual tx 2003 -UND at wk 11-discontinued due to severe depression

Started Triple 4/16/13 for 24 weeks

UND wk 4,6,8,12,17 & 24

E.O.T. 9/29/13

EOT + 12 weeks=SVR, and EOT +26 weeks=Cured!
Zlikster


Guru

Status: Offline
Posts: 791
Date:
Permalink  
 

cheers folks!

i have explained my case to the program manager from Gilead...but he was strict that rule for this trial is random choice of patients for those 3 arms otherwise "it would not be scientifict" (DOH!). I will consult with my hepa when i see her. It's not easy, nor cheap, to get to UK with all documentation and to settle somewhere just to end up on interferon arm :/ there are no placebo arms on this trial. I presume it's just to check what it most effective for GT3 when it comes to Sovaldi (i thought VALENICA trial was final one for GT3s?)

Then again, it's 3 arms (hence 2/3 chance to get w/o peg). 24w would be best, 16w acceptable (oh well cca 60% SVR chance ain't that bad rite?), peg arm definetly not (or i shall gamble with my hearing once more). Also i must contact each trial site in UK directly and check will they accept me.

soon i will have my PCR result, then FibroTest and FibroScan...time to see whats damn liver muncher up to in post tx period, or as my hepa would say "post tx viral kinetics" :) then i will translate all that documentation and start "molesting" all those trial sites in UK.


PS: beers were ok (Paulaner from keg), next batch of beer when i am hcv free man :)






__________________

GT 3 dg. 08-2012 / FibroScan: 5 kPa F1 / FibroTest: F0-1 A1 / SoC TX: PegInt 120mcg+Riba 1000mg UND from w8 relapse EOT+4w
01-2016 Sof+Dac+Riba UND from w8, SVR24!
Tig


Admin

Status: Offline
Posts: 9270
Date:
Permalink  
 

Hey Zlik,

I'm in agreement with the others. If you agree and are accepted, there's a chance you would be on a non interferon arm and all would be fine. If you're selected for the interferon arm, an explanation to the trial staff about your past experiences with it would be sufficient reason for your refusal. I think if you told them that in advance, you may well be denied straight away but that's a decision you can make. It would be fairly obvious from the medications provided to determine what arm you were on. I haven't heard of anyone given an interferon placebo, have you? That doesn't seem likely and I don't believe they would go to that extent. I think they might take your past treatments into consideration as well. Why would they want to spend the time and money on a trial they already know might have a questionable outcome. They want results, like you do and as we all know, money is everything to them. I would look into it a little farther. It just might be what you're looking for. Good luck with that decision bud, we're here for ya.

Sorry about the other issues bothering you right now. This disease and the treatment to destroy it is hard on everyone. You've been a tower of strength and your attitude exemplary for all of us. If you need to rant and rave around here, dude, you've earned every syllable. Let it flow, we're all here to listen and not condemn a decision (most anyway!). I hope you enjoyed the beers. They'll be the last one's right? LOL! Come on man, hang in there!!

Best to ya,  Tig



__________________

Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

Signature Line Set Up/Abbreviations   Payment Assistance

 
suziq


Senior Member

Status: Offline
Posts: 327
Date:
Permalink  
 

Hi Zlikster,

Sounds like it is worth the gamble.  I was told which drugs/arm I was going to be on before I started the trial.  You can just say no and go home if the arm includes interferon.  My contract stated that I could stop treatment at any time.  Don't know about others.  And how often do they test post treatment?  My testing is just about an hour every month and go home and call if you need us or have questions during treatment and will be the same post treatment.

Sorry about all your personal issues. Life and its ups and downs can be difficult at times.  NO drinking--it does NOT help anything--especially your Hep C BUT thanks for sharing so we could scold you LOL. 

Happy New Year to you.

SuziQ 



__________________

Geno 1A  Age 82 Treatment naive Cirrhotic Told I had liver disease in 1966. Diagnosed as Hep C 1999.Started Merck clinical trial with Riba on 9/9/2013 Week 1 and 2 <25  Weeks 4, 8, 12,16,18 UND.  EOT Jan 14,2014  EOT +12 UND   JULY 1 2014 EOT+24= SVR
Karen


Senior Member

Status: Offline
Posts: 396
Date:
Permalink  
 

Hey Zlikster-No need to apologies for the rant...You have been through a lot.  Good to get it all out.

Glad to hear that Gilead has been in touch-got to go with your gut!...  When they say randomizing...they do put all your information into a system that spits you out on which trial you will partake.  I got to think that the system used is not as simple as a flip of a coin but does take into consideration all the information.  Don't know but for me, I either got lucky (would not be able to tolerate Riba) or the goal was to put us on the arm were we would be most likely to succeed.  Malcolm may know the answer to that...In any case, I hope this is your ticket to a hep c free 2014.



__________________

Geno Type A1- VL 16.2m - F1-F2 Moderate Fibrosis - Started treatment 4/16/13 Sofosbuvir/Ledipasvir 6 months -  UND week 4 (5/14/13) - EOT 10/1/13 - 12wk blood draw 12/20/13 UND - 24wk/final blood draw March 2014
Zlikster


Guru

Status: Offline
Posts: 791
Date:
Permalink  
 

Gilead responded to my email about it's clinical trial (http://clinicaltrials.gov/ct2/show/NCT01962441). 3 arms (Sof+Riba 16w, Sof+Riba 24w, Sof+Riba+Peg 12w) are strictly randomised, so i can apply, but if i end up in interferon arm, then it's a no go for me :(  I need to be for the full duration of trial there + 6 month post tx. So cca 1 year in UK. It's fine with me and i could afford that i guess (could work from UK via internet and i got lots of friends there). I am not sure is it worth all the money and time to invest just to end up randomly sorted into interferon arm...Shall i maybe gamble? Maybe God of probability will get me into 24w Sof+Riba? ;)

there are no more clinical trials for GT3s excluding interferon (there was one with Ledipasvir, but it's not recruiting anymore). Of course they ended up telling me how Sofosbuvir will be sold in EU pretty soon. Seems like they didn't read fully my email where i mentioned how i can't afford 168k $ for 168 pills...

in few weeks, they might offer me here retreatment Peg+Riba 24w, if i only knew that peg won't damage my hearing furthermore, i would go for it. Then again 12w of Peg in that UK trial doesn't sound that bad either.

pretty much in the dark mood lately...my relationship is falling apart, job is not doing that great, still can't sleep from tinnitus properly, buried 2 family members in last 6 months. I have to operate my badly jointed humerus asap (can't lift more than 5kg with left arm), but can't operate here since they do not have titanium plates. Situation in Bosnia is getting worse day by day. Good predispositions for proper depression i guess.

I had 2 beers for nye (first in 18months of absence!), feel guilty a bit. Next alcoholic drink will be when i become hcv free man.

happy holidays to all of forum members! Sorry about this depressive rant...i just feel bit down.




__________________

GT 3 dg. 08-2012 / FibroScan: 5 kPa F1 / FibroTest: F0-1 A1 / SoC TX: PegInt 120mcg+Riba 1000mg UND from w8 relapse EOT+4w
01-2016 Sof+Dac+Riba UND from w8, SVR24!
Page 1 of 1  sorted by
 
Quick Reply

Please log in to post quick replies.
Hep C Discussion Forum -> Living With Hep C -> disappointment (rant)
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.