Aa
Null responder needs advice.
I am a null responder with early cirrhosis- liver function so far is quite good. Have been waiting patiently for telaprevir approval and just received devastating news from my consultant that for people like me telaprevir is very disappointing- only 14% chance of SVR ( based on data released at EASL 2011).
This very depressing news was given alongside warnings about viral resistance and potential exclusion from other trials further down the line because of failure with a protease inhibitor (if I do fail).
My consultant was talking about quad therapy like the Roche trial now in phase 2 and believes quad therapy is the future treatment of choice for null responders. The Roche phase 3 quad therapy trial won't come around until the end of 2012. I can't wait that long, but nor do I want to be excluded from more promising treatments that are on the horizon.
I feel utterly stuck and damned either way- any advice or alternative ways of viewing this situation would be really welcome.
I now have to try to glean information from those who know and also keep watching how other people choose to deal with these difficult decisions and try to make some sort of informed choice. Can anyone lend a hand as I can't think straight now !
Hope everyone's well.
Thanks
Paul.
This very depressing news was given alongside warnings about viral resistance and potential exclusion from other trials further down the line because of failure with a protease inhibitor (if I do fail).
My consultant was talking about quad therapy like the Roche trial now in phase 2 and believes quad therapy is the future treatment of choice for null responders. The Roche phase 3 quad therapy trial won't come around until the end of 2012. I can't wait that long, but nor do I want to be excluded from more promising treatments that are on the horizon.
I feel utterly stuck and damned either way- any advice or alternative ways of viewing this situation would be really welcome.
I now have to try to glean information from those who know and also keep watching how other people choose to deal with these difficult decisions and try to make some sort of informed choice. Can anyone lend a hand as I can't think straight now !
Hope everyone's well.
Thanks
Paul.
I am not sure where you got your figures from but this is what I find according to documentation submitted to the FDA.
http://www.natap.org/2011/HCV/050311_01.htm
cirrhosis: 23-27%; prior response: relapsers: 52-55%, null responders: 27-28%, partial responders: 18-20%.
As we all know the less diseased the liver is the greater the chance of SRV. Since you are "early cirrhosis" you may have time to wait for newer meds but it could be a gamble. Each individual is unique in how their liver disease progresses. I was stable for years and then had an operation that the anesthesia damaged my liver and caused me to decompensate.
"The diagnosis of early cirrhosis should not be considered a fatal diagnosis. Most patients will continue to do well for decades. There is no reason to refer a person with cirrhosis to a liver transplant center unless the cirrhosis is advanced (CPT class C) or complications from cirrhosis have developed."
27% or 17% is better then about 0% in the case of SOC. I will be try treatment (as a former null responder) as this may be my last chance before transplant. I figure I have nothing to lose and all to gain. We have to accept our health status and do what we can given the circumstances. Sure it is disappointing when we hear the 80% SVR rates but that unfortunately that is not us. We do what we can with what we have. You can choose to look at the glass half full or half empty. Both are true. But for me I have to be optimistic. What can I do throw my hands up in the air and say this isn't fair. It is not fair. What is happening everyday to our fellow suffers of liver disease isn't fair either.
In the big picture we have it easy. We have cirrhosis yes, but we are not experiencing life threatening complication or a regular basis like so many are as they wait for a donated liver to be available. If you want to feel better go to the nearest transplant clinic and visit and talk to a patient there. You will walk out thinking you have it made and will feel fortunate and lucky to be so healthy. We can still walk, talk, take care of yourselves, have a normal life and not be bed ridden as we suffer and fight for our lives every day.
No cirrhosis is no bed of roses... even without symptoms, we know are livers are scared progressing toward failure every day. It is all relative as Einstein said.
Hang in there. All hope is not lost. A Yogi Berra said "It ain't over 'til it's over". Take it one step at a time. Do what is right for you and your values. Enjoy everyday of life and realize how precious it is. None of us are gonna live for ever. "No one get out alive". One day it will all be over, so enjoy yourself now. If you want to do something do it now. Don't put it off. You don't want to have regrets. Do something foolish or crazy but with a sense of respect toward others. Who cares really? This is your one and only life. Make it the best you can while you can. Do what makes you happy. It doesn't matter what anyone else thinks about it. It is your life not theirs. As Hendrix said 'I'm the one that has to die when it's time for me to die, so let me live my life, the way I want to."
Okay...sorry I'm getting off my soap box now....whew...
Cheers!
Hector
http://www.natap.org/2011/HCV/050311_01.htm
cirrhosis: 23-27%; prior response: relapsers: 52-55%, null responders: 27-28%, partial responders: 18-20%.
As we all know the less diseased the liver is the greater the chance of SRV. Since you are "early cirrhosis" you may have time to wait for newer meds but it could be a gamble. Each individual is unique in how their liver disease progresses. I was stable for years and then had an operation that the anesthesia damaged my liver and caused me to decompensate.
"The diagnosis of early cirrhosis should not be considered a fatal diagnosis. Most patients will continue to do well for decades. There is no reason to refer a person with cirrhosis to a liver transplant center unless the cirrhosis is advanced (CPT class C) or complications from cirrhosis have developed."
27% or 17% is better then about 0% in the case of SOC. I will be try treatment (as a former null responder) as this may be my last chance before transplant. I figure I have nothing to lose and all to gain. We have to accept our health status and do what we can given the circumstances. Sure it is disappointing when we hear the 80% SVR rates but that unfortunately that is not us. We do what we can with what we have. You can choose to look at the glass half full or half empty. Both are true. But for me I have to be optimistic. What can I do throw my hands up in the air and say this isn't fair. It is not fair. What is happening everyday to our fellow suffers of liver disease isn't fair either.
In the big picture we have it easy. We have cirrhosis yes, but we are not experiencing life threatening complication or a regular basis like so many are as they wait for a donated liver to be available. If you want to feel better go to the nearest transplant clinic and visit and talk to a patient there. You will walk out thinking you have it made and will feel fortunate and lucky to be so healthy. We can still walk, talk, take care of yourselves, have a normal life and not be bed ridden as we suffer and fight for our lives every day.
No cirrhosis is no bed of roses... even without symptoms, we know are livers are scared progressing toward failure every day. It is all relative as Einstein said.
Hang in there. All hope is not lost. A Yogi Berra said "It ain't over 'til it's over". Take it one step at a time. Do what is right for you and your values. Enjoy everyday of life and realize how precious it is. None of us are gonna live for ever. "No one get out alive". One day it will all be over, so enjoy yourself now. If you want to do something do it now. Don't put it off. You don't want to have regrets. Do something foolish or crazy but with a sense of respect toward others. Who cares really? This is your one and only life. Make it the best you can while you can. Do what makes you happy. It doesn't matter what anyone else thinks about it. It is your life not theirs. As Hendrix said 'I'm the one that has to die when it's time for me to die, so let me live my life, the way I want to."
Okay...sorry I'm getting off my soap box now....whew...
Cheers!
Hector
Paul, Mike's post reminded me that my NP has put me on Milk Thistle (175mg) 3 X day, Apha Lipoic Acid, total of 600 mgs broken in to 3 doses a day, and Lecithin 3 X day. Also, I love Hector's attitude. I have had cirrhosis since my first biopsy in 1992. I am still well compensated and look how long it has been. You will be here to try many things if the PI's don't work.
Far be it from me to try to one-up your NP, but:
Pure PPC (polyenyl-phosphatidylcholine) is better than lecithin, of which it is the active extract. Lecithin, which is basically cleaned-up soy oil, has some bad stuff in it. Sure, pure PPC costs more, but so what? Why take a lot of lecithin when it's been proven that the part of it that's active in protecting the liver is the PPC? Check out Phoschol and Hepatopro. I take the Phoschol, myself.
Ditto re milk thistle. The silibin phytosome (Siliphos, Ultra Thistle, etc.) works better and faster. A lot more of the active part of the thistle gets to work in you when it's in the phytosome form. This also has been proven in tests.
Re ALA, please allow me to suggest taking it between meals, if you don't already do that. ALA is not easily absorbed, and in fact most of it never gets to where it should (those places where it can reduce natural but oxidized glutathione). Taking it on a near-empty stomache helps for it to get used. There is even now an ALA time capsule, so that it hangs around inside you all day.
Vitamin E is another good antioxidant. Many normal people don't get enough, especially older people, and it helps to slow down the oxidation in the liver that causes fibrosis. It has synergy with Vitamin C, too.
There's a ton of info in earlier Medhelp threads on all this.
Sorry if I sound like a wiseguy. Just trying to help.
Mike
Pure PPC (polyenyl-phosphatidylcholine) is better than lecithin, of which it is the active extract. Lecithin, which is basically cleaned-up soy oil, has some bad stuff in it. Sure, pure PPC costs more, but so what? Why take a lot of lecithin when it's been proven that the part of it that's active in protecting the liver is the PPC? Check out Phoschol and Hepatopro. I take the Phoschol, myself.
Ditto re milk thistle. The silibin phytosome (Siliphos, Ultra Thistle, etc.) works better and faster. A lot more of the active part of the thistle gets to work in you when it's in the phytosome form. This also has been proven in tests.
Re ALA, please allow me to suggest taking it between meals, if you don't already do that. ALA is not easily absorbed, and in fact most of it never gets to where it should (those places where it can reduce natural but oxidized glutathione). Taking it on a near-empty stomache helps for it to get used. There is even now an ALA time capsule, so that it hangs around inside you all day.
Vitamin E is another good antioxidant. Many normal people don't get enough, especially older people, and it helps to slow down the oxidation in the liver that causes fibrosis. It has synergy with Vitamin C, too.
There's a ton of info in earlier Medhelp threads on all this.
Sorry if I sound like a wiseguy. Just trying to help.
Mike
I forgot to mention that for inspiration and ideas on what you can do, check out the Medhelp threads from Gauf and HR from a couple of years ago. Gauf is one of my heros. With advanced-stage liver disease, he finally cleared the virus on his fourth (or was it fifth?) Tx, using a formula he himself put together, a combination of modified standard therapy plus a regime of alternative meds. This is a guy who knew he was going to win and did, by relying on himself and taking action.
I think those threads are still available in the Medhelp archives by doing a search. If not, there are people here who have saved them as files in their computers.
Mike
I think those threads are still available in the Medhelp archives by doing a search. If not, there are people here who have saved them as files in their computers.
Mike
Not a wiseguy at all. I really appreciate the advice and will look for the forms of milk thistle you recommend. So the Phoscol is the extract of Lecithin that is better? Did I understand that correctly? I will ask my health food guy if he has it. I do take the ALA between meals.
I posted a link to the TAG HCV Pipeline for you in a post entitled To Mike & Others.
Have an Answer?
You are reading content posted in the Hepatitis C Community
Learn about this treatable virus.
Getting tested for this viral infection.
3 key steps to getting on treatment.
4 steps to getting on therapy.
What you need to know about Hep C drugs.
How the drugs might affect you.
These tips may up your chances of a cure.
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
-- PIs (protease inhibitors like Boceprevir and Telaprevir) are not the only game in town. There are all sorts of other drugs now in trials. One of the more promising (to my mind) is Globeimmune's GI-5005 immunogen, which has recently reported some trial success with null responders (see the news articles at Globeimmune-dot-com), and also particularly with people who have the IL28B T/T genotype.
-- Have you tried to find out why you are a null responder? Knowing the cause of a condition is the first step in dealing with it. Cause and effect is the basis of all knowledge, and knowledge is power.
-- Trying to get rid of the virus is only half the fight. The other half is keeping up your liver function. There are things you yourself can do for that. Some are: diet, exercise, and alternative meds (silibin, PPC, ALA, Vitamin E, SAMe, Lactoferrin, etc., and especially the immune system boosters). Believe it or not, some of them do work.
Maybe you know all this stuff. If so, I apologize for wasting your time. However, I'm a firm believer in self-help. It keeps you from slipping into a dependence syndrome. Taking action is one of the best medicines around.
Good luck.
Mike