Hepatitis Forums
Hepatitis C Main Forums => Post Hepatitis C Treatment => Topic started by: terih on July 13, 2015, 08:17:30 pm
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Well the Texas Liver Institute called today and I'm in the upcoming study for DAA relapses, there's the great news! So Yeah!! It starts the end of this month or the beginning of next month.
While I had the lady on the phone, I asked her about my fibroscan results, she said my score was 15.2, I have no idea what that means. Any help would be appreciated!
I also found out that I have the mutation that is Ledipasvir resistant, so after all these months of wondering, I finally have an answer to why I relapsed!
I'll try to post more as this begins, to share my treatment info with everyone.
Also congratulations to everyone who is cured! I'm so happy for each and every one of you!!!!! Teri
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I found this you may want your doctor to explain the meaning of your result
http://hepatitiscnewdrugresearch.com/fibroscan-results-the-scoring-card.html
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Thank you for the reply Lynn! I had found that chart and sort of was in shock at what it said about cirrhosis! I was hoping against hope it was wrong when I posted my question.
I spoke to the study coordinator and she confirmed it, also that I'm prequalified for the study. I have to get prior testing done and the only thing that would keep me from being in the study is if my liver enzymes are over 200. This is for the new triple therapy from Gilead. I'm so hopeful!
Thank you again Lynn and congrats on your success! Teri
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Are you saying they confirmed cirrhosis?
Sorry to hear that.
I am not quite there yet I was still not detected at 4 weeks post but 12 week post is in 2 weeks. Still holding my breath especially since I relapsed last year with Sov Oly but cautiously optimistic.
Where is the trial being done do you have the trial number? I imagine other folks who have been denied by insurance may be interested to see if it is available in their local area.
Best of luck
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Yes they said early stage and light scarring, so there's that. Funny but I'm not too freaked out, I feel like everything is going to be okay! Glass half full and all, ya know!
I'm hoping right along with you this is the cure for you!
What I know at this point about the trial is that it is in San Antonio, Tx. at the Texas Liver Institute. I don't know the trial number, this one is strictly for Harvoni relapses. I'll try to find out more info as I go along. I imagine people could google and call and ask them, they are very nice people there! Or it would probably be listed on Gilead's website! Teri
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I just checked the clinicaltrials.gov site and I think I found it
A Study to Evaluate the Efficacy, Safety, and Pharmacokinetics of ABT-493 and ABT-530 With and Without Ribavirin in Adults With Genotype 1 HCV Who Failed a Prior DAA Containing Therapy
ClinicalTrials.gov Identifier:
NCT02446717
https://www.clinicaltrials.gov/ct2/show/NCT02446717?term=hepatitis++c&recr=Open&state1=NA%3AUS%3ATX&rank=18
says study locations in Alabama, California, Florida, Louisiana, Michigan, New York, Tennessee & Texas
If it is the same one the meds are from AbbVie so probably not on Gilead's website
I was diagnosed with early cirrhosis in Jan 08 and I am still kicking! At least you have treatment to stop it here and now so no worries.
I did a fibroscan before I started this last treatment in case insurance wanted something more recent than 2008 biopsy. My score I think was 27
Good luck and go kick some dragons butt!
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Good detective work, Lynn! It is good to know AbbVie has a study too!
The coordinator is being pretty tight lipped here, but she did say Gilead and that it is 3 drugs with two of them only being listed by numbers, so I assumed it was GS5816 and GS9857. But there's that old saying about assuming. ;) I could be totally wrong but that is the only one I could find on Gilead's website.
Thanks for sharing your diagnosis date and number! I wish neither of us had this, but it is comforting to talk to someone with experience! So thank you!
For any Texans that need it, Texas Liver Institute has just opened a branch in Austin, both Doctors being certified Heptologists! I've had very good experiences with this facility!
And yes dragon but is exactly what I'm gonna stomp! Teri
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Good detective work, Lynn! It is good to know AbbVie has a study too!
The coordinator is being pretty tight lipped here, but she did say Gilead and that it is 3 drugs with two of them only being listed by numbers, so I assumed it was GS5816 and GS9857. But there's that old saying about assuming. ;) I could be totally wrong but that is the only one I could find on Gilead's website.
Thanks for sharing your diagnosis date and number! I wish neither of us had this, but it is comforting to talk to someone with experience! So thank you!
For any Texans that need it, Texas Liver Institute has just opened a branch in Austin, both Doctors being certified Heptologists! I've had very good experiences with this facility!
And yes dragon but is exactly what I'm gonna stomp! Teri
I don't know how to tell you this, but a 15 kPa is well into the cirrhosis territory, F4 confirmed, and likely to put you into a CPT B. I'm a 16 kPa and have already been decompensated with varices, bleeding, muscle wasting, etc. Don't take it too lightly. I hope you get to SVR with this new trial.
I'm also on the exact same treatment as you were. The fact that it was a fail for you is not particularly helpful for my emotional state right now, at 1.30am.
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From what I see on this fibroscan score card 15 is the border of F3 F4
http://hepatitiscnewdrugresearch.com/fibroscan-results-the-scoring-card.html
I had 27 on mine I have had varicies that needed banding and some edema so I take a diuretic but tha is it but our progression is different between each other.
Still though, I do agree borderline F3 F4 should be taken seriously
Good luck
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Just to add I am a child A meld 7 and was diagnosed with cirrhosis after being followed closely for 18 years in Jan 2008 on my 4th liver biopsy I was having them done every 5 years. Like I said we all progress differently it would seem
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Hi Lynn,
>>From what I see on this fibroscan score card 15 is the border of F3 F4 <<
I dont see that.. It looks clearly to me as though 15 is in the F4 range ; its in the lower end of the F4 range, but its in the range.
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Yeah sorry about that I just have my phone and no ruler. Agree just at the bottom for hep c readings.
I was more concerned about sickpuppies comments about being well into cirrhosis territory and possibly being a Child score B. Especially as my score is 27 and I am child A.
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Good Morning!
Sickpuppy, Thank you for replying and your concern! Believe me, I'm taking this seriously. I've known I have HCV since 1993 and have learned that if I let the fear run my life, I can't deal with anything well at all! So I just try and move forward as fearlessly as possible! But I'm not taking it lightly!
Lynn, thanks for your input and big congrats on your SVR! All I can think to say is, Hell Yeah Woman, way to go!!!!
Dragonslayer, Hi and thanks for your input too! I hope you are having a great HCV free life!
Now on to my news, I spent Friday afternoon being poked and prodded at TLI, I was told by the trial Doc, not officially cirrhosis, but advanced liver disease. I'll take what good news I can get! ;) She told me she didn't see anything that would keep me out of this trial, so yeah! It is exactly the drugs I thought it was, but some of us will get Riba added.
I have to wait a bit more, because my BP med (Mycardis) is a no-no with this drug, so I have to do a 21 day clean out.
I also found out why they were being so tight-lipped about this study, while it is run by Gilead, it is only being done at TLI and is only open to around 80 people.
I should know if I made it into the trial within 10 days, so cross your fingers for me! If I make it I'll try and post about how it goes for me!
Hope everyone is having a great day! Teri
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Good luck getting into the trial, Teri! Will definitely keep my fingers crossed for you. Six days ago, I completed a 12-week trial of Harvoni+ribavirin. And I have every reason to believe I am now cured - although of course must wait another 11 weeks to find out for sure. Hoping it all goes super for you!
best,
kim
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Hi Kim, best of luck to you! I want to share with you that I told the Doc that I felt IT come back and she asked me to describe what I felt like, after I told her she said yep, that's how it happens. The reason I say this is to let you know, if you feel cured, you probably are!
Again best wishes for you and my fingers are crossed for you!! I'll be watching for your good news! Teri
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Well the Texas Liver Institute called today and I'm in the upcoming study for DAA relapses, there's the great news! So Yeah!! It starts the end of this month or the beginning of next month.
While I had the lady on the phone, I asked her about my fibroscan results, she said my score was 15.2, I have no idea what that means. Any help would be appreciated!
I also found out that I have the mutation that is Ledipasvir resistant, so after all these months of wondering, I finally have an answer to why I relapsed!
I'll try to post more as this begins, to share my treatment info with everyone.
Also congratulations to everyone who is cured! I'm so happy for each and every one of you!!!!! Teri
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Need to know. Why do some patients take Harvoni plus Ribarin (spelling)?
After 4 weeks no detectable virus for me. Right now I have 4 more weeks to make total of 12 weeks.
My other question. .how many weeks AFTER that will I be considered cured?
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I was a 3 time null responder to interferon based treatment over the years.
6 months interferon monotherapy
6 months interferon ribavirin
6 months interferon ribavirin and a trial medicine
Last year I treated with Sovaldi and Olysio for 12 weeks I was not detected a week 4 and end of treatment but when tested 12 weeks post I had relapsed.
I was diagnosed with liver cirrhosis F4 on liver biopsy in Jan 2008
I treated for 24 weeks of Harvoni and later we added Ribavirin for the remaining 15 weeks of treatment. I was not detected at week 4 on treatment and at EOT. I was not detected 4 weeks post treatment and last Friday I found out I am still not detected 12 weeks after treatment.
Most doctors are calling 12 weeks post treatment officially cured some still prefer to call it cured at 24 weeks but if still not detected at 12 weeks post the probability of relapse is about 0.2%
I hope that answers both of your questions. Basically Ribavirin is used for patients with cirrhosis as we are more difficult to cure.
Good luck on treatment
Lynn
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I just did a Fibroscan and the nurse said I would have to wait for a week to get results from my doctor. But can anyone perhaps ease my wait by telling me if they know acting about the image I saw from it?
On the right hand side there were numbers next to 10 images all saying 1.2 to 1.8
In the middle was
VS Median 1.36
And below the
E median 5.1
Is the 5.1 my score?
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The E is "E (kPa)" on my results sheet, so yes, 5.1 is what you use on this chart: http://hepatitiscnewdrugresearch.com/fibroscan-results-the-scoring-card.html
Lucky you! You're in the lowest part of the chart: F0-F1 -- Congratulations!
Gnatty
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Nicole, I just saw this and wanted to congratulate you on coming out of this horrendous disease as unscathed as possible!
I hope you are feeling well and enjoying life! Teri
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Thank you so much Teri. That's very sweet of you. I'm so sorry about your relapse. When I relapsed from Interferon I couldn't even bear to think of anyone but myself. So I really appreciate that and anything I can say sounds trite perhaps but I do think it's just the beginning of really eradicating this disease. New drugs and competitive market for them. You will beat this!
All the best to you,
Nicole