Aa
no SVR for me
I am 3 months post treatment, I found out Monday (last monday) that the virus is back. the doctor told me it was a scarce amount and we would wait a couple of weeks to see if my own immunity could fight it. If not, my two options were to treat now with a combo or wait for new drugs. I already have cirrohsis so the new drugs might not come out in time. I told him I would not treat again at this time. the last few months were a nightmare ( i was literally in bed for 4 months) I have started feeling better physically, although i am still struggling with brain fog (more like brain dead to me.) my doctor has put me on some antidepressents ( I am already taking some, but he told me to take both kinds) I really don't have a question, but advice i can always use. I h ave been trying to get on this site since last Monday, I tried every day and med help finally emailed me today with a new password and I still could not get in. has that happened to anyone else? Someone told me to go to recovery in the control panel and do something there and then i got it.
Ah, sorry to hear you had such crushing news. It can happen to any of us treating, whichis why so many, like you stated, have treated 2 or 3 times, The Warriors.
I would like to suggest you get a biopsy. My ibroSure Test had me at 0.77, which, as can-do has illustrated up above, is consistant with cirrhosis. I had many signs of cirrhosis, from that blood test.
But when I had a biopsy, it showed I only had Stage 2 Fibrosis, which I feel was accurate.
Stay strong, my Doctor said the GS 7977 is
coming quicker than she originally thought. Make sure to recoup, and eat helathy,m exercisem etc. You can beat this~
I would like to suggest you get a biopsy. My ibroSure Test had me at 0.77, which, as can-do has illustrated up above, is consistant with cirrhosis. I had many signs of cirrhosis, from that blood test.
But when I had a biopsy, it showed I only had Stage 2 Fibrosis, which I feel was accurate.
Stay strong, my Doctor said the GS 7977 is
coming quicker than she originally thought. Make sure to recoup, and eat helathy,m exercisem etc. You can beat this~
Thanks for the clarification orphanedhawk. That is what I was trying to say, but didn't say clearly. Viral load isn't relevant (other than when measuring success of treatment) and doesn't equate with the amount of liver damage. Yes, the treatment may have helped bjack's liver. During the time that the viral load is decreased or UND, it is felt that the liver gets a break. I didn't know that having virus present doesn't necessarily mean that there is damage occurring. Thanks for that info OH.
Advocate1955
Advocate1955
"but it is really irrelevant because no matter what the viral load, it is damaging your liver. "
Viral load isn't relevant and doesn't equate with amount of liver damage.
However it doesn't necessarily mean that because it is there it IS damaging one's liver.
And the treatment itself may have helped bjack's liver.
This is indeed a confusing thread !
Viral load isn't relevant and doesn't equate with amount of liver damage.
However it doesn't necessarily mean that because it is there it IS damaging one's liver.
And the treatment itself may have helped bjack's liver.
This is indeed a confusing thread !
I am just wondering what your bloodwork results were at Weeks 4, 8, 12, etc. Did your viral load come back "Unquantifiable" or Undetected?
Since it has returned, my understanding is that you cannot treat again.
I am sorry that it didn't work out for you. With Cirrhosis, you should be looking into finding a transplant center. My husband tried treatment with a decompensated liver and only made it to Week 5 yet his viral load remained "unquantifiable" for 8 months. He too was in bed for the whole time he was on treatment. Hospitalizations followed for hepatic encephalopathy along with numerous blood transfusions. He finally had a liver transplant in June, 2012.
The virus has returned and we know the fight will go on. But at least he has a new liver now and hopefully he won't have to worry too much about it hopefully for a few years at least. New medications will surely be available in the next few years.
So my advice to you is get evaluated by a transplant center team and if eligible get listed. A new liver will buy you some more time to get rid of this virus sometime in the future.
I wish you the best.
Nan
Since it has returned, my understanding is that you cannot treat again.
I am sorry that it didn't work out for you. With Cirrhosis, you should be looking into finding a transplant center. My husband tried treatment with a decompensated liver and only made it to Week 5 yet his viral load remained "unquantifiable" for 8 months. He too was in bed for the whole time he was on treatment. Hospitalizations followed for hepatic encephalopathy along with numerous blood transfusions. He finally had a liver transplant in June, 2012.
The virus has returned and we know the fight will go on. But at least he has a new liver now and hopefully he won't have to worry too much about it hopefully for a few years at least. New medications will surely be available in the next few years.
So my advice to you is get evaluated by a transplant center team and if eligible get listed. A new liver will buy you some more time to get rid of this virus sometime in the future.
I wish you the best.
Nan
What you had was the fibrospect blood test, I also had one only it was fibrosure. And yes they do rate the stage and grade. On my test results >0.74 was stage 4 or cirrhosis and The grading was as followed.
.17 - .29 = A1
..29- .36 = A1 Minimal activity
.36- .52 = A1 - A2
.52- .60 = Grade 2 - moderate activity
.60- .62 = Grade A2 - A3
over. 62 = grade 3 - Severe activity
I also had a Biposy that also showed cirrhosis, with your score I agree with your doctor............ Most people here have never had either of these test so its understandable they are confused that there is stages and grading on those. Hang in there
.17 - .29 = A1
..29- .36 = A1 Minimal activity
.36- .52 = A1 - A2
.52- .60 = Grade 2 - moderate activity
.60- .62 = Grade A2 - A3
over. 62 = grade 3 - Severe activity
I also had a Biposy that also showed cirrhosis, with your score I agree with your doctor............ Most people here have never had either of these test so its understandable they are confused that there is stages and grading on those. Hang in there
dear bj59
i agree with the others who say your numbers are confusing. i never heard of stages for hep c either. maybe if you can give us clear info we can help-
maybe there will be more informative support if we know what you are dealing with. it does sound like you are in good hands but maybe need to know the right questions to ask.
correct me if i'm wrong hector, f-2 is not cirrhotic is it?
the best advice is to keep calm, rest, restore and get ready to go back in. i too had failure on both my SOC's even after being virus free. let's hope if you are dealing with cirrhosis, it is in a mild state until you can try the new protocol. i never heard of the virus clearing on its own post tx. one can always hope tho!
it is rough emotionally to deal with the lurkiness of the virus and how it just chomps away at our lives (and lively-hood in my case). i have been fighting depression for a while and i think there is a case to be studied as to whether the dang virus causes depression? i think eating healthy, being around positive people, finding something you can do in your state while you wait will help, and keep getting informed, be proactive! mild excercise and lots of water will keep your system flushing and moving.
it seems many of us fight the blues on this forum, but the support here is great and you can learn a lot. keep coming back around and i know all here will help the best they can.
i am now going to a research center to try to get on a trial. i can't take soc again due to my xtreme reactions, so i too await the new drugs in the pipeline. i will be letting everyone know any new info i find.
take care of yourself and hang on,
JA
i agree with the others who say your numbers are confusing. i never heard of stages for hep c either. maybe if you can give us clear info we can help-
maybe there will be more informative support if we know what you are dealing with. it does sound like you are in good hands but maybe need to know the right questions to ask.
correct me if i'm wrong hector, f-2 is not cirrhotic is it?
the best advice is to keep calm, rest, restore and get ready to go back in. i too had failure on both my SOC's even after being virus free. let's hope if you are dealing with cirrhosis, it is in a mild state until you can try the new protocol. i never heard of the virus clearing on its own post tx. one can always hope tho!
it is rough emotionally to deal with the lurkiness of the virus and how it just chomps away at our lives (and lively-hood in my case). i have been fighting depression for a while and i think there is a case to be studied as to whether the dang virus causes depression? i think eating healthy, being around positive people, finding something you can do in your state while you wait will help, and keep getting informed, be proactive! mild excercise and lots of water will keep your system flushing and moving.
it seems many of us fight the blues on this forum, but the support here is great and you can learn a lot. keep coming back around and i know all here will help the best they can.
i am now going to a research center to try to get on a trial. i can't take soc again due to my xtreme reactions, so i too await the new drugs in the pipeline. i will be letting everyone know any new info i find.
take care of yourself and hang on,
JA
As noted above, there is no such thing as a "scarce" amount of virus. 385,000 is considered, I believe, to be in the low range of viral load, but it is really irrelevant because no matter what the viral load, it is damaging your liver.
If you treated with triple tx with Incivek, to my knowledge you cannot treat again with either of the triple txs. So far a s I know, it is against the treatment protocol to retreat with triple tx with Incivek or to treat with triple tx with Vic. This is due to the fact that you have relapsed and these two drugs are similar, therefore you have developed a virus that is resistant to both.
I also don't understand what your doctor means when he/she says you are in stage 2 of the virus but you have Cirrhosis. Stage 2 is sometimes used to describe f-2 or fibrosis 2. Cirrhosis is stage 4 or f4 (fibrosis 4). If you had/have Cirrhosis, then the treatment protocol was for 48 weeks. If you didn't treat for 48 weeks, then your doctor didn't follow the treatment protocol.
Of course, if your doctor is a hepatologist who is familiar with the triple txs, He/she would know far better than me, as I am not a doctor.
Since you have Cirrhosis and you have relapsed following treatment with triple tx with Incivek, your top priority has to be getting rid of your virus and monitoring your liver for the possibilities of decompensated liver function and/or liver cancer. Since you have relapsed following triple tx with Incivek, to my knowledge there are currently no treatment options available to you. You could possibly qualify for a clinical trial involving one of the new oral medications that are being studied, but you would want to look carefully at the criteria to make sure that if you found one it would be a trial that would have benefit for you. Otherwise you will have to wait for the new medications to be approved in 2-5 years and hopefully your liver will stay compensated until you can treat again.
Because you have Cirrhosis, you should be under the care of a hepatologist who is preferably at a transplant center connected with a research university. This would provide you with the type of care you need. You should be having lab work done about every 3 months to check your liver functions, and you should be having some type of imaging or ultrasound done every 6 months to check for liver cancer. You should be seeing a hepatologist every 6 months to a year to monitor your liver and that person should be advising you on what you should be doing at home to keep your liver as healthy as possible until a new treatment or a clinical trial is available to you. A hepatologist at a transplant center/research university would have access to doctors who are running trials that may be appropriate for you.
Best wishes, and keep us posted.
Advocate1955
If you treated with triple tx with Incivek, to my knowledge you cannot treat again with either of the triple txs. So far a s I know, it is against the treatment protocol to retreat with triple tx with Incivek or to treat with triple tx with Vic. This is due to the fact that you have relapsed and these two drugs are similar, therefore you have developed a virus that is resistant to both.
I also don't understand what your doctor means when he/she says you are in stage 2 of the virus but you have Cirrhosis. Stage 2 is sometimes used to describe f-2 or fibrosis 2. Cirrhosis is stage 4 or f4 (fibrosis 4). If you had/have Cirrhosis, then the treatment protocol was for 48 weeks. If you didn't treat for 48 weeks, then your doctor didn't follow the treatment protocol.
Of course, if your doctor is a hepatologist who is familiar with the triple txs, He/she would know far better than me, as I am not a doctor.
Since you have Cirrhosis and you have relapsed following treatment with triple tx with Incivek, your top priority has to be getting rid of your virus and monitoring your liver for the possibilities of decompensated liver function and/or liver cancer. Since you have relapsed following triple tx with Incivek, to my knowledge there are currently no treatment options available to you. You could possibly qualify for a clinical trial involving one of the new oral medications that are being studied, but you would want to look carefully at the criteria to make sure that if you found one it would be a trial that would have benefit for you. Otherwise you will have to wait for the new medications to be approved in 2-5 years and hopefully your liver will stay compensated until you can treat again.
Because you have Cirrhosis, you should be under the care of a hepatologist who is preferably at a transplant center connected with a research university. This would provide you with the type of care you need. You should be having lab work done about every 3 months to check your liver functions, and you should be having some type of imaging or ultrasound done every 6 months to check for liver cancer. You should be seeing a hepatologist every 6 months to a year to monitor your liver and that person should be advising you on what you should be doing at home to keep your liver as healthy as possible until a new treatment or a clinical trial is available to you. A hepatologist at a transplant center/research university would have access to doctors who are running trials that may be appropriate for you.
Best wishes, and keep us posted.
Advocate1955
I have always been confused! I did not discover this site until treatment was almost completed and I was flying in the dark. I found my 1st bloodwork and on the last page it says "test results" 1. Fibrospect II index of 98. 2. consistent with metavir F2-F4. Below the doctor circled F-2 to F-3, did not circle F4 cir. This was done in 8/2011 - In10/2011 I was told i had stage 2 cirr. I did not realize there was not a stage 2 cir until I started reading this site. I asked him about it and he said that he meant the virus was stage 2 and yes i did have cirr. He originally said I would treat for 48 weeks but decided I could do 6 months. I was in really bad shape from the tx and would have never lasted. the 48. I don't know if that had something to do with it or not. He did say since I was UND at an early stage we could do that. He is a hepatoligist. My last test was in July. He said I had 2 options. Treat again with a combo (i thought he said the shot and incivek, I told him I had read you can not treat again and he said since it was my first tx that I could) or he will moniter me and try to wait for the new meds coming in 2014. My vl is now 385000 (does not sound like a scarce amount) I am doing another test on the 15th of this month - he wants to see if my immunity is trying to fight it. Oh by the way, i never had a liver biopsy. My ALT started at 72 and AST was 159. The last report last month was ALT 57 and AST 56. Platelet count was 89.
Hi Marilyn,
I'm glad to hear your son has a good doctor. Waiting for three months to start treatment is reasonable. It seems unlikely to me that he will be able to clear the virus himself, since he has had it for almost a year, but three months is a short time to wait in terms of treating for Hep C. It takes awhile to do all of the tests, determine a treatment plan, and get medications approved.
By the way, it would be best if you go back to your original post and continue your thread there instead of here on someone else's thread. People on the forum will get confused. It's easier to keep information straight if you either post on your original thread or if you have a new question or comment start a new thread.
Best wishes,
Advocate1955
I'm glad to hear your son has a good doctor. Waiting for three months to start treatment is reasonable. It seems unlikely to me that he will be able to clear the virus himself, since he has had it for almost a year, but three months is a short time to wait in terms of treating for Hep C. It takes awhile to do all of the tests, determine a treatment plan, and get medications approved.
By the way, it would be best if you go back to your original post and continue your thread there instead of here on someone else's thread. People on the forum will get confused. It's easier to keep information straight if you either post on your original thread or if you have a new question or comment start a new thread.
Best wishes,
Advocate1955
My son is 50 and was scheduled for a scan this past week. He has a very good doctor. My son told me that the doctor (he is the doctor for his
HIV) wanted to wait three months before he starts treatment. My son said
That the doctor thought it was a possibility he would revertbac to negative ashewas recently infected. I find that hard to comprehend.
HIV) wanted to wait three months before he starts treatment. My son said
That the doctor thought it was a possibility he would revertbac to negative ashewas recently infected. I find that hard to comprehend.
If I remember right this happened to NYgirl and a few others but the numbers were very low.
Hi bjack59,
I am sorry to hear about your recent relapse following triple tx with Incivek. That is very difficult news to hear, I'm sure. My husband has been through three failed treatments. During the first two, he was a partial responder, and during the third (triple tx with Incivek), he had a viral breakthrough somewhere around week 20-24.
My husband's side effects were similar with each of his three treatments, although each treatment was different. Typical side effects with all three treatments: fatigue, nausea, anxiety/depression/irritability, anemia, and rash. I wouldn't say the side effects improved each time, because each treatment was a little different. Treatment #2 (daily Infergen injections and increased dosage of riba) was definitely the most difficult of his three treatments. The depression that follows the news of a failed treatment has been rough on my husband each time, the feeling that he went through all of that "for nothing", the fear of his liver decompensating or failing sometime in the future, the anxiety about becoming ill and being a "burden" to me and our children (his thoughts) are all pretty overwhelming during the first few weeks after a failed treatment. It usually takes him about 8 - 12 weeks to regroup, build his counts back up, get some energy back, and feel better. As his counts come back up, he starts to feel like he can do more, and his spirits come back up too. There is still the fear and anxiety around not having any other treatment options and knowing that the Hep C virus is still present and still harming the liver, but we just keep moving forward, following doctor's orders, and waiting for the next treatment. The more time that passes following a failed treatment, the better he feels physically, which helps his mental outlook.
If I were you, I would ask your doctor how he/she determined that you have Cirrhosis. So far as I know a biopsy is the best way to know the status of your liver. If you do have Cirrhosis, it will be important for your doctor to monitor you for liver cancer while you're waiting for the next Hep C treatment to become available. It will also be important for your doctor to follow you to make sure that your liver stays compensated. That may mean lab work every 3 months and ultrasounds or other imaging every 6 months.
I think it's important to know for sure if you have Cirrhosis.
I have never heard of the body's immune system being able to clear chronic Hep C virus. I guess there's always hope, but it seems more likely that your next PCR will show that your viral load has gone back up from the small amount that was detected at the last PCR. That is to be expected with a relapse. I believe that your relapse probably means that your virus has developed some resistance and your body doesn't respond well enough to Interferon. Willbb or Hector, please correct me if I'm misspeaking. As Hector said, you will need to wait for either a clinical trial or the new medications that will be available in 2-5 years.
I know that it's hard to even think about another treatment when you've just completed and failed one, but if indeed you find out that you have Cirrhosis, time is not on your side. You will want to treat either in a clinical trial or when new meds become available before 1) your liver becomes decompensated, or 2) you develop liver cancer.
In my husband's case, because of his age, length of time since contracting Hep C, and risk factors (family history, etc.), we believe that time is not on his side. We are hopeful that he can get into a good trial soon, or, if not, that the new medications will come out sooner rather than later. We believe that his risk for becoming decompensated or developing liver cancer within the next five years is high, so his hepatologist is monitoring him very closely, and we are working to stay optimistic.
Advocate1955
I am sorry to hear about your recent relapse following triple tx with Incivek. That is very difficult news to hear, I'm sure. My husband has been through three failed treatments. During the first two, he was a partial responder, and during the third (triple tx with Incivek), he had a viral breakthrough somewhere around week 20-24.
My husband's side effects were similar with each of his three treatments, although each treatment was different. Typical side effects with all three treatments: fatigue, nausea, anxiety/depression/irritability, anemia, and rash. I wouldn't say the side effects improved each time, because each treatment was a little different. Treatment #2 (daily Infergen injections and increased dosage of riba) was definitely the most difficult of his three treatments. The depression that follows the news of a failed treatment has been rough on my husband each time, the feeling that he went through all of that "for nothing", the fear of his liver decompensating or failing sometime in the future, the anxiety about becoming ill and being a "burden" to me and our children (his thoughts) are all pretty overwhelming during the first few weeks after a failed treatment. It usually takes him about 8 - 12 weeks to regroup, build his counts back up, get some energy back, and feel better. As his counts come back up, he starts to feel like he can do more, and his spirits come back up too. There is still the fear and anxiety around not having any other treatment options and knowing that the Hep C virus is still present and still harming the liver, but we just keep moving forward, following doctor's orders, and waiting for the next treatment. The more time that passes following a failed treatment, the better he feels physically, which helps his mental outlook.
If I were you, I would ask your doctor how he/she determined that you have Cirrhosis. So far as I know a biopsy is the best way to know the status of your liver. If you do have Cirrhosis, it will be important for your doctor to monitor you for liver cancer while you're waiting for the next Hep C treatment to become available. It will also be important for your doctor to follow you to make sure that your liver stays compensated. That may mean lab work every 3 months and ultrasounds or other imaging every 6 months.
I think it's important to know for sure if you have Cirrhosis.
I have never heard of the body's immune system being able to clear chronic Hep C virus. I guess there's always hope, but it seems more likely that your next PCR will show that your viral load has gone back up from the small amount that was detected at the last PCR. That is to be expected with a relapse. I believe that your relapse probably means that your virus has developed some resistance and your body doesn't respond well enough to Interferon. Willbb or Hector, please correct me if I'm misspeaking. As Hector said, you will need to wait for either a clinical trial or the new medications that will be available in 2-5 years.
I know that it's hard to even think about another treatment when you've just completed and failed one, but if indeed you find out that you have Cirrhosis, time is not on your side. You will want to treat either in a clinical trial or when new meds become available before 1) your liver becomes decompensated, or 2) you develop liver cancer.
In my husband's case, because of his age, length of time since contracting Hep C, and risk factors (family history, etc.), we believe that time is not on his side. We are hopeful that he can get into a good trial soon, or, if not, that the new medications will come out sooner rather than later. We believe that his risk for becoming decompensated or developing liver cancer within the next five years is high, so his hepatologist is monitoring him very closely, and we are working to stay optimistic.
Advocate1955
Wow I am so sorry to hear this. I can imagine what a huge let down it must be. Like Hector I am a bit confused about the stage of fibrosis you are. Sorry in advance if this sounds nosy it's just if I thread the facts in your prior posts together accurately than I believe it is possible you may have been misinformed - or are perhaps misinterpreting your diagnosis.
In your 02 July post you mention that you were cirrohsis stage 2 when you started treatment. I was wondering if you happen to still have your physical copy of your biopsy. The text portion usually reveals the condition of your liver (well, a cross section) in addition to the stage of fibrisos you are.
I hate to offer hope if your situation is different than what it is but if you are (well, were) treatment naive and Stage 2 Fibrosis rather than cirrhotic then you might have all kinds of time on you side. Plus you are young.
Anyway, I could be wrong about all this but something seems off about your diagnosis. Either way I know treating can be a real strain and even though you have been off the meds for some time I hope you continue to heal and get your life back on track. I am sure you hear this all the time but it is true: there are many different (less harsh) HCV meds that will be out within the next few years so hang in there!!!!
In your 02 July post you mention that you were cirrohsis stage 2 when you started treatment. I was wondering if you happen to still have your physical copy of your biopsy. The text portion usually reveals the condition of your liver (well, a cross section) in addition to the stage of fibrisos you are.
I hate to offer hope if your situation is different than what it is but if you are (well, were) treatment naive and Stage 2 Fibrosis rather than cirrhotic then you might have all kinds of time on you side. Plus you are young.
Anyway, I could be wrong about all this but something seems off about your diagnosis. Either way I know treating can be a real strain and even though you have been off the meds for some time I hope you continue to heal and get your life back on track. I am sure you hear this all the time but it is true: there are many different (less harsh) HCV meds that will be out within the next few years so hang in there!!!!
Sorry to hear this but I'm holding on hope with what your doctor said as if the amount is detectable but below the range of the test then all might not be lost.......... Just hang in there, wishing you the best
So sorry to hear this. I know what its like not to SVR. Did the riba/inter. in 08-09 48 weeks. Relapsed in the 3mo. after. Now, doing the triple threat, on week 11. Praying for SVR this time and will be praying for you also. I know one other person who became UND and then DET. But now they are SVR! Praying it was a fluke! Hang in there!
Hi.
I am sorry to hear about your recent relapse.
....I just saw your latest post after writing my response. Now I have to revise it as your last post contradicts everything I had assumed previously.
Okay, you are genotype 1.
You say you were on "on triple with Incivek for 6 months".
If this is true, you can't retreat with either Incivek or Victrelis or any PI and treating with only peg-INF and ribavirin would be pointless.
So you treated for 24 weeks because you never treated before and didn't have cirrhosis correct?
Last year at this time I was F/2-F/3, so I guess it just turned to cirr after August.
You can NOT go from stage F/2-F/3 to F/4 in one year. So either one or the other stage was incorrect.
If you were cirrhotic in August, why didn't you treat for 48 weeks as all patients with cirrhosis should?
Who says you have cirrhosis? Your GI? Based on what?
What does your most recent biopsy say?
When was it done?
What was your platelet count before you started treatment?
What were your ALT and AST counts?
If you don't have cirrhosis then you can wait for new interferon free treatments to be available. If you do have cirrhosis then your only option for treatment would be to wait for a clinical trial that excepts cirrhotics. Or wait a few years for your viral resistance to clear from your previous treatment and then do 48 weeks as all cirrhotics should.
In order to assess the status of your liver disease we need real data. Numbers, quotes from reports such as you biopsy, scans etc. You can get copies from your doctor. I am sorry but the information you have provided is contradictory so it is impossible to determine the true status of your liver disease and what you should do after recovering from your previous treatment. If you can provide some real data then we can tell you something more than generalities.
Good luck.
Hector
I am sorry to hear about your recent relapse.
....I just saw your latest post after writing my response. Now I have to revise it as your last post contradicts everything I had assumed previously.
Okay, you are genotype 1.
You say you were on "on triple with Incivek for 6 months".
If this is true, you can't retreat with either Incivek or Victrelis or any PI and treating with only peg-INF and ribavirin would be pointless.
So you treated for 24 weeks because you never treated before and didn't have cirrhosis correct?
Last year at this time I was F/2-F/3, so I guess it just turned to cirr after August.
You can NOT go from stage F/2-F/3 to F/4 in one year. So either one or the other stage was incorrect.
If you were cirrhotic in August, why didn't you treat for 48 weeks as all patients with cirrhosis should?
Who says you have cirrhosis? Your GI? Based on what?
What does your most recent biopsy say?
When was it done?
What was your platelet count before you started treatment?
What were your ALT and AST counts?
If you don't have cirrhosis then you can wait for new interferon free treatments to be available. If you do have cirrhosis then your only option for treatment would be to wait for a clinical trial that excepts cirrhotics. Or wait a few years for your viral resistance to clear from your previous treatment and then do 48 weeks as all cirrhotics should.
In order to assess the status of your liver disease we need real data. Numbers, quotes from reports such as you biopsy, scans etc. You can get copies from your doctor. I am sorry but the information you have provided is contradictory so it is impossible to determine the true status of your liver disease and what you should do after recovering from your previous treatment. If you can provide some real data then we can tell you something more than generalities.
Good luck.
Hector
thanks for the concern - i am type 1, am seeing a hep - he is sending for another blood test on aug. 15th. He wants to see if my own immunity is trying to fight it - i have never heard of that. i was on triple with Incevik for 6 months. He will moniter me to see if i can wait for the new drugs. Last year at this time I was F/2-F/3, so I guess it just turned to cirr after August. Maybe after the severe depression goes away, I will find the strength to fight again. I know many of you have have treated 2 or three times. That is truly amazing. Did you really have it bad with the symptons or did it get better the second time around?
This is tough news. Makin me cry. the thought of starting 48 weeks again sounds exhausting. If your dr (a liver transplant specialist I hope) thinks you can take a rest and go for it.....
My dr and I had already talked about if I failed. We were gonna try it again w the new drugs. I was on triple w Incivik.
Don't give up on your dreams. Try and keep yourself mentally boosted by thinking about the future. With all the new options? You've got a lot of living to do. It's hard living w/ cirhossis. Take it easy on yourself.
Karen :)
My dr and I had already talked about if I failed. We were gonna try it again w the new drugs. I was on triple w Incivik.
Don't give up on your dreams. Try and keep yourself mentally boosted by thinking about the future. With all the new options? You've got a lot of living to do. It's hard living w/ cirhossis. Take it easy on yourself.
Karen :)
As miserable as TX makes you feel, there's nothing as debilitating as getting the news that your TX failed!! My relapse sent me into a tailspin that lasted several days! That was back in 2003 when there were no other options. You do have options today!! Give yourself time to grieve and deal with this news. Be kind to yourself!! Then, weigh your options, and do what you have to do!! We are all here for you and you've received some great advice above.
Hugs,
Janette
Hugs,
Janette
So sorry to hear you relapsed. This happened to me the first time I did tx.
I would encourage you to get up and get moving. Take walks~ no matter how short or far. Movement helps both our bodies and our brains.
As afar as not getting into medhelp~ that happened to me a few months back.
It was a major pain. Since then I make sure to copy my password and put it in a folder in my documents.
Will made a good point~ why not get another PCR? just to make sure.
I hope you're seeing a good hepatologist experienced with cirrhosis.
The only other advise I have is to drink lots of coffee~ 4+ cups daily is supposed to help keep the virus from replicating. Do a search also into curcumin, the active ingredient in turmeric and Vitamin B. None will rid you of hep C but if you can help keep the virus from increasing, that should be a good thing.
You might consider taking milk thistle since you aren't on treatment, or look at hep tech's products to assist you.
Best of luck~
OH
I would encourage you to get up and get moving. Take walks~ no matter how short or far. Movement helps both our bodies and our brains.
As afar as not getting into medhelp~ that happened to me a few months back.
It was a major pain. Since then I make sure to copy my password and put it in a folder in my documents.
Will made a good point~ why not get another PCR? just to make sure.
I hope you're seeing a good hepatologist experienced with cirrhosis.
The only other advise I have is to drink lots of coffee~ 4+ cups daily is supposed to help keep the virus from replicating. Do a search also into curcumin, the active ingredient in turmeric and Vitamin B. None will rid you of hep C but if you can help keep the virus from increasing, that should be a good thing.
You might consider taking milk thistle since you aren't on treatment, or look at hep tech's products to assist you.
Best of luck~
OH
Sorry to hear of this. I have also treated once before with having a failed attempt.
You say your PCR showed a viral load a":scarce amount" Possibly a re-test would be in order if not already done as we have heard numerous times her about lab anomaly's.
My best wishes to you....
Will
You say your PCR showed a viral load a":scarce amount" Possibly a re-test would be in order if not already done as we have heard numerous times her about lab anomaly's.
My best wishes to you....
Will
That truly *****- I'm so sorry. I would definitely keep an eye on clinical trials- there are lots of rules on most but there must be some trials for ppl with cirrhosis. A good long talk with your Dr. might help you decide what your next move will be. Again, I'm so sorry- it just isn't fair, esp after such a rough tx.
Dee
Dee
I am very sorry to hear that the virus did not clear for you. I know it must be devastating.
I know you need time to rest and recover and I know you said you do not want to treat again at this time. I don't know which Genotype you are or which medications you treated with but, if you are Genotype 1 and treated with just Interferon and Ribavirin, you could try the new treatment for Genotype 1 (Interferon, Ribavirin, and a protease inhibitor (Incivek or Victrellis). The cure rate is much, much higher when one treats with the Triple med treatment as opposed to just doing Inf. and Riba. It is just something to think about after you have had time to recover.
Because you have cirrhosis, you should be under the care of a Hepatologist who is affiliated with a large medical center/liver transplant center. Hepatologists are the only doctors who have the knowledge and expertise to appropriately treat and manage the care of people with cirrhosis.
There may be some trials/studies with new meds that include cirrhotics. You might try posting here with a new heading which includes the word cirrhosis and/or you could post on the cirrhosis forum.
http://www.medhelp.org/forums/Cirrhosis-of-the-Liver/show/1390
Hector can give you excellent information concerning your situation and treatment options.
Best of luck.
I know you need time to rest and recover and I know you said you do not want to treat again at this time. I don't know which Genotype you are or which medications you treated with but, if you are Genotype 1 and treated with just Interferon and Ribavirin, you could try the new treatment for Genotype 1 (Interferon, Ribavirin, and a protease inhibitor (Incivek or Victrellis). The cure rate is much, much higher when one treats with the Triple med treatment as opposed to just doing Inf. and Riba. It is just something to think about after you have had time to recover.
Because you have cirrhosis, you should be under the care of a Hepatologist who is affiliated with a large medical center/liver transplant center. Hepatologists are the only doctors who have the knowledge and expertise to appropriately treat and manage the care of people with cirrhosis.
There may be some trials/studies with new meds that include cirrhotics. You might try posting here with a new heading which includes the word cirrhosis and/or you could post on the cirrhosis forum.
http://www.medhelp.org/forums/Cirrhosis-of-the-Liver/show/1390
Hector can give you excellent information concerning your situation and treatment options.
Best of luck.
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