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.
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
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