Aa
Just as I thought,relapse
It was too good to be true-finally after doing every study known to mankind since the 80s and I mean a shot of 3 million interferon everyday,and then on to the 5 million everyday and when that failed it was 10 million everyday.And everything else that came after with failure after failure.And finally sovaldi and olysio come along and I finally find a hero,finally negative and just in the nick of time.Geno 1a-stage 4 cirrhosis complete with every possible side effect that makes me want to say the hell with it sometimes.Today I go and get my 1 month after Tx bloodwork and the first thing I see is Hepatitis C quantitation 694,770.Ast and Alt ballooned from normal range to 200 and 159.I had to sit down on the bench outside the office,no way I could drive cause I had no legs.I had a feeling something was wrong because I was so itchy and still having leg cramps but I hoped it was the cirrhosis.Naturally my docs first available was in two months so once again its back to the drawing board.The lady who takes my blood told me she had two yesterday on the same treatment that also relapsed.I just cant believe or accept the amount of Hell you go through only to end up on a treadmill that takes you nowhere.
Good luck to you all Glen
Good luck to you all Glen
And to All:
In a recent Clinical Care Options article Mar Sulkowski, MD was talking about Cirrhositcs and the new treatments. Here is [part of what he said:
"Some fine-tuning of therapy may still be needed in this group of patients. In the phase III ION-1 study of sofosbuvir/ledipasvir in untreated patients, there appeared to be some drop off in response rate among cirrhotic patients who did not receive additional ribavirin compared with those who did (94% vs 100%, respectively). In the phase III ION-2 study of the same regimen in previously treated patients, cirrhotic individuals appeared to benefit more from the 24-week regimens than from 12 weeks of therapy (100% vs 82% to 86%, respectively). And in the phase III TURQUOISE-II study of the 3-drug regimen plus ribavirin in cirrhotic patients, previous null responders with genotype 1a infection also appeared to do better with 24 weeks of therapy compared with 12 weeks (93% vs 80%, respectively)."
And another quote from the same article:
"..... a course of sofosbuvir and simeprevir, a potent once-daily regimen. The final results of the phase II COSMOS study that evaluated this regimen were hard to beat for cirrhotic patients with genotype 1b HCV: All genotype 1b patients were cured, as were most cirrhotic null responders.
The response rates in this study for patients with genotype 1a infection were also quite good, although a number of patients with this subgenotype receiving the 12-week regimens did experience viral relapse, whereas those treated for 24 weeks did well: SVR rates in the 12-week arms were between 88% to 100% across arms vs 100% in both treatment arms for the 24-week regimens. Use of ribavirin did not appear to make a difference to SVR rates, but this is not definitive. I know that some of my colleagues are adding ribavirin to the regimen for patients with genotype 1a infection who are receiving sofosbuvir plus simeprevir, on the basis that other studies have demonstrated some benefit from this approach. While I understand the limitations of the COSMOS study—it is a small phase 2 trial—currently, it is the best option for HCV cure for this cirrhotic patient who has been waiting a long time for treatment."
In a recent Clinical Care Options article Mar Sulkowski, MD was talking about Cirrhositcs and the new treatments. Here is [part of what he said:
"Some fine-tuning of therapy may still be needed in this group of patients. In the phase III ION-1 study of sofosbuvir/ledipasvir in untreated patients, there appeared to be some drop off in response rate among cirrhotic patients who did not receive additional ribavirin compared with those who did (94% vs 100%, respectively). In the phase III ION-2 study of the same regimen in previously treated patients, cirrhotic individuals appeared to benefit more from the 24-week regimens than from 12 weeks of therapy (100% vs 82% to 86%, respectively). And in the phase III TURQUOISE-II study of the 3-drug regimen plus ribavirin in cirrhotic patients, previous null responders with genotype 1a infection also appeared to do better with 24 weeks of therapy compared with 12 weeks (93% vs 80%, respectively)."
And another quote from the same article:
"..... a course of sofosbuvir and simeprevir, a potent once-daily regimen. The final results of the phase II COSMOS study that evaluated this regimen were hard to beat for cirrhotic patients with genotype 1b HCV: All genotype 1b patients were cured, as were most cirrhotic null responders.
The response rates in this study for patients with genotype 1a infection were also quite good, although a number of patients with this subgenotype receiving the 12-week regimens did experience viral relapse, whereas those treated for 24 weeks did well: SVR rates in the 12-week arms were between 88% to 100% across arms vs 100% in both treatment arms for the 24-week regimens. Use of ribavirin did not appear to make a difference to SVR rates, but this is not definitive. I know that some of my colleagues are adding ribavirin to the regimen for patients with genotype 1a infection who are receiving sofosbuvir plus simeprevir, on the basis that other studies have demonstrated some benefit from this approach. While I understand the limitations of the COSMOS study—it is a small phase 2 trial—currently, it is the best option for HCV cure for this cirrhotic patient who has been waiting a long time for treatment."
You might want to consider the Abbvie drugs which should be approved before the end of the year. I am geno 1a, failed very treatment available including injecdting 15mcg Infergen daily. I have had cirrhosis since my first biopsy in 1991.
I did the Abbvie turquoise trial in the 24 week arm and have been clear since Lagte February 2013. I just recently got my 1 year clear since end of treatment. I had virtually no side effects.
Good luck to you. Don't give up.
I did the Abbvie turquoise trial in the 24 week arm and have been clear since Lagte February 2013. I just recently got my 1 year clear since end of treatment. I had virtually no side effects.
Good luck to you. Don't give up.
Sorry ..cut off. Hector is right that you gave it all you had. The next go round I'm sure they are going to hit you will all they've got. As Hector mentioned he's going to do the same with the added Riba. Will tell you this, I did the Riba/Sovd combo, and from the posts that I read while treating, it sounded like the Oys/Sovd had more negative sides. I have no doubt that you will get thru treatment with less issues.
We will all be rooting for you Glen.
Be well, and stay strong.
...Kim
We will all be rooting for you Glen.
Be well, and stay strong.
...Kim
Glen. My heart just skipped another beat....I really feel for you and so sorry for the unfair results. i guess when we all started this journey, we were naive to realizing that some would not get there. Was not really expecting this treatment to not work on so many. We all started about the same time, and now the results. I would agree that the Riba should be a consideration for follow up treatment, if advised.
I know it's not easy, but at least the newer meds will be available as Nan said, in 4 months. I understand you must be worried with the enzymes going up so quickly. We have all had this disease for so long, that a few more months should not make a difference.
I know it's not easy, but at least the newer meds will be available as Nan said, in 4 months. I understand you must be worried with the enzymes going up so quickly. We have all had this disease for so long, that a few more months should not make a difference.
Glen,
I am sorry to hear of the treatment's failure. That is a tough blow to take.
Please give yourself a break and take the time you need to recover from this setback. Lick your wounds and be good to yourself. You fought the good fight. The combo of Cirrhosis + hepatitis C can make life an emotional roller coaster for sure. Sometimes we can be so up only to be shot down the next. You gave it your best shot. That is all any of us can do. Remember you didn't fail the treatment, the treatment FAILED YOU! Unfortunately there are no guarantees in this business, no 100% anything especially for folks with cirrhosis. Hopefully someday in the not too distant future we will see a cure, we just ain't there yet.
If it makes you feel any better I did 48 weeks of Sovaldi + riba and was undetectable for 47 of those 48 weeks yet relapsed within a month of stopping before my transplant. So now my recurrent hep C is messing with my new shiny stage 0 liver. Grrr! That makes me very unhappy to put it mildly! I will be back in the ring at the end of August going for the crown for the third time this time with Sovaldi + Olysio + riba. Will it work? Who knows? I'm not holding my breath I can tell you that. All I can do is give it my best shot. The rest is out of my hands. I am learning acceptance. If I fail the treatment then I will move on to the next latest and greatest treatment. With my new liver I have time thankfully. I am sorry that you and others have cirrhosis which makes time an important factor. Living with cirrhosis, which can be like living with a ticking time bomb is a very stressful situation to deal with. So many unknowns.
I know you will rebound in your own time and do battle again. Try to hang in there as best as you can. You are doing all you can so don't beat yourself up over it. One day I am sure you, me and a lot of other "hard to treat" folks will beat this thing once and for all.
Unfortunately when one has cirrhosis + hep C smooth sailing is usually not in the forecast. But...
"We may not be able to control the winds but we can adjust our sails"
Hang in there. Better days are ahead.
Hector
I am sorry to hear of the treatment's failure. That is a tough blow to take.
Please give yourself a break and take the time you need to recover from this setback. Lick your wounds and be good to yourself. You fought the good fight. The combo of Cirrhosis + hepatitis C can make life an emotional roller coaster for sure. Sometimes we can be so up only to be shot down the next. You gave it your best shot. That is all any of us can do. Remember you didn't fail the treatment, the treatment FAILED YOU! Unfortunately there are no guarantees in this business, no 100% anything especially for folks with cirrhosis. Hopefully someday in the not too distant future we will see a cure, we just ain't there yet.
If it makes you feel any better I did 48 weeks of Sovaldi + riba and was undetectable for 47 of those 48 weeks yet relapsed within a month of stopping before my transplant. So now my recurrent hep C is messing with my new shiny stage 0 liver. Grrr! That makes me very unhappy to put it mildly! I will be back in the ring at the end of August going for the crown for the third time this time with Sovaldi + Olysio + riba. Will it work? Who knows? I'm not holding my breath I can tell you that. All I can do is give it my best shot. The rest is out of my hands. I am learning acceptance. If I fail the treatment then I will move on to the next latest and greatest treatment. With my new liver I have time thankfully. I am sorry that you and others have cirrhosis which makes time an important factor. Living with cirrhosis, which can be like living with a ticking time bomb is a very stressful situation to deal with. So many unknowns.
I know you will rebound in your own time and do battle again. Try to hang in there as best as you can. You are doing all you can so don't beat yourself up over it. One day I am sure you, me and a lot of other "hard to treat" folks will beat this thing once and for all.
Unfortunately when one has cirrhosis + hep C smooth sailing is usually not in the forecast. But...
"We may not be able to control the winds but we can adjust our sails"
Hang in there. Better days are ahead.
Hector
Thank you Newbie for the encouraging words.Coming on this forum and hearing all this informative information has really given me hope.I go back to see my doc on August 27.Hopefully he will have my final answer so that this will be my last heartbreak.Thanks again and good luck to you.
Glen
Glen
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