Aa
After completing my 24 weeks doctor now says they can extend it
I'm genotype 3a, age 57, and have had Hep C for about 40 years. I have stage 4 cirrhosis. I'm being treated by the specialist at the Lair Center here in Vancouver.
They did not do a viral load test before treatment. I had my first pegatron injection on Jan 13. I was unable to work because of side effects especially severe fatigue, so I made arrangements to take some time off and return to work on July 16.
After 4 weeks of pegatron, my viral load was still detectable at 44. I had a positive/negative test at 8 weeks and the result was negative (undectable).
People at this site said it might be a good idea to extend treatment past 24 weeks. Some research I did confirmed this, so in early March I asked the Hep C nurse if it might be possible to extend treatment. She said "no", the provincial guidelines here don't permit them to extend treatment past 24 weeks for genotype 3's.
I had an option to apply for financial assistance (it takes some 6 weeks to process) but I decided my savings were sufficient to carry me through until July, but not longer. So because I believed the treatment could not be extended and I could return to work in July, I choose to not apply for financial assistance. Without any money at all coming in, my savings disappear quickly, and I need to be careful because I'll need some money when I reach end stage in a few years time.
I had my 24th injection on Friday June 22. Yesterday I woke up feeling happier than usual believing it's nearly over except for a few ribivirin. I made a call to touch base with the Hep C nurse to confirm my final appointment on Friday, leaving a message. She returned the call with a message saying that they can extend my treatment after all, because they have some "compassion drugs" at the Lair Center.
Now I'm confused. I spoke to the doctor today and after I explained WHY it would be financially and otherwise very complicated at THIS point to continue treatment, and it might even put my job at risk, he replied "so you've decided to not continue the treatment past 24 weeks". I said had I known previously it might be possible, I would have been prepared to do it.
There have been many mistakes.
- They failed to do a viral load test before treatment.
- The doctor said before treatment started I would have a 80-85% chance of SVR. I did some reading and learned that with advanced cirrhosis, it's likely closer to 50%. When I asked him the second time telling him about what I've read, he was more honest and said "actually a bit better than 50%".
- They kept forgetting (3 times) to fax or e-mail the requisition form to the lab where I was to take the hemo blood test, so when I showed up at the lab it wasn't done.
- They were supposed to send my family doctor a copy of all my blood test results during treatment, but didn't do so except for the initial Jan 13th tests. Even after I told the Lair Center nurse my family doctor had not been receiving those results, they still failed to send them and I had to remind them a second time.
- The nurse at The Lair Center keeps missing my veins when she takes my blood (as the other Lair Center nurse did back in 2003) but it's never happened a single time anywhere else (I've been having blood tests since the 1970s).
I'm confused - anybody have any thoughts about this?
They did not do a viral load test before treatment. I had my first pegatron injection on Jan 13. I was unable to work because of side effects especially severe fatigue, so I made arrangements to take some time off and return to work on July 16.
After 4 weeks of pegatron, my viral load was still detectable at 44. I had a positive/negative test at 8 weeks and the result was negative (undectable).
People at this site said it might be a good idea to extend treatment past 24 weeks. Some research I did confirmed this, so in early March I asked the Hep C nurse if it might be possible to extend treatment. She said "no", the provincial guidelines here don't permit them to extend treatment past 24 weeks for genotype 3's.
I had an option to apply for financial assistance (it takes some 6 weeks to process) but I decided my savings were sufficient to carry me through until July, but not longer. So because I believed the treatment could not be extended and I could return to work in July, I choose to not apply for financial assistance. Without any money at all coming in, my savings disappear quickly, and I need to be careful because I'll need some money when I reach end stage in a few years time.
I had my 24th injection on Friday June 22. Yesterday I woke up feeling happier than usual believing it's nearly over except for a few ribivirin. I made a call to touch base with the Hep C nurse to confirm my final appointment on Friday, leaving a message. She returned the call with a message saying that they can extend my treatment after all, because they have some "compassion drugs" at the Lair Center.
Now I'm confused. I spoke to the doctor today and after I explained WHY it would be financially and otherwise very complicated at THIS point to continue treatment, and it might even put my job at risk, he replied "so you've decided to not continue the treatment past 24 weeks". I said had I known previously it might be possible, I would have been prepared to do it.
There have been many mistakes.
- They failed to do a viral load test before treatment.
- The doctor said before treatment started I would have a 80-85% chance of SVR. I did some reading and learned that with advanced cirrhosis, it's likely closer to 50%. When I asked him the second time telling him about what I've read, he was more honest and said "actually a bit better than 50%".
- They kept forgetting (3 times) to fax or e-mail the requisition form to the lab where I was to take the hemo blood test, so when I showed up at the lab it wasn't done.
- They were supposed to send my family doctor a copy of all my blood test results during treatment, but didn't do so except for the initial Jan 13th tests. Even after I told the Lair Center nurse my family doctor had not been receiving those results, they still failed to send them and I had to remind them a second time.
- The nurse at The Lair Center keeps missing my veins when she takes my blood (as the other Lair Center nurse did back in 2003) but it's never happened a single time anywhere else (I've been having blood tests since the 1970s).
I'm confused - anybody have any thoughts about this?
"I believe my chances of SVR are still not very good, maybe 40% at best"
**************************************************************
Peter 40% is better than 0% so hang in there. You are doing great!
Have a nice day!
Jules
**************************************************************
Peter 40% is better than 0% so hang in there. You are doing great!
Have a nice day!
Jules
I am completing my 28th week of treatment as of today. I just took my last ribivirin.
The British Columbia government did not approve funding for extending my treatment past 24 weeks.
However, the Lair Center provided me with four more weeks of pegetron (for free).
I believe my chances of SVR are still not very good, maybe 40% at best. However I think I have a somewhat better chance now after 28 weeks than if I'd ended treatment at 24 weeks.
The British Columbia government did not approve funding for extending my treatment past 24 weeks.
However, the Lair Center provided me with four more weeks of pegetron (for free).
I believe my chances of SVR are still not very good, maybe 40% at best. However I think I have a somewhat better chance now after 28 weeks than if I'd ended treatment at 24 weeks.
Yes, I'll be continuing to try to find a way to continue treatment for as long as possible (up to 36 weeks).
Thanks for posting the info about the studies in Pakistan.
It sounds like you have really been researching and looking at all options.
It is good to hear you have found a way to extend treatment. Hopefully that will give you better odds for cure.
I am sure you have already thought of this, but is there any way you could work part time or shorter hours. If so, it would give you some income and yet you would still be able to continue treatment.
It sounds like you have really been researching and looking at all options.
It is good to hear you have found a way to extend treatment. Hopefully that will give you better odds for cure.
I am sure you have already thought of this, but is there any way you could work part time or shorter hours. If so, it would give you some income and yet you would still be able to continue treatment.
I had my appointment at the Lair Center today, and I'm extending my treatment for 4 more weeks to 28 weeks. They've given me a month's supply of pegatron for free. I will decide at that time at the end of July whether it will be possible to extend it longer.
I've been complaining about mistakes in my treatment by the Lair Center, but I should be grateful for having been given the extra month's supply of pegatron.
I'll never have a better chance to get rid of the virus than right now. So even though this will be very difficult for a number of reasons, I've decided without a doubt I need to extend treatment no matter what.
I believe because the 4 week viral load was detectable but low at 44, the drugs were working, but more slowly because of my cirrhosis. It was UND at 8 weeks, but I think I may actually have been UND at 5 weeks, there was just no way of knowing.
I've done a lot of reading, including from sources provided here, and I've come to some conclusions. If I had stopped now I think my chance of SVR would have been about 25%.
Everything carefully considered, even just extending from 24 to 28 weeks will bring my chances of SVR from 25% to about 40%. Further extending to 36 weeks would bring it up to about 50%. It would be impossible for me to extend it to 48 weeks, so that's out of the question. I don't think the SVR chances at 48 weeks for genotype 3a with cirrhosis would be much different than at 36 weeks anyway.
I've been complaining about mistakes in my treatment by the Lair Center, but I should be grateful for having been given the extra month's supply of pegatron.
I'll never have a better chance to get rid of the virus than right now. So even though this will be very difficult for a number of reasons, I've decided without a doubt I need to extend treatment no matter what.
I believe because the 4 week viral load was detectable but low at 44, the drugs were working, but more slowly because of my cirrhosis. It was UND at 8 weeks, but I think I may actually have been UND at 5 weeks, there was just no way of knowing.
I've done a lot of reading, including from sources provided here, and I've come to some conclusions. If I had stopped now I think my chance of SVR would have been about 25%.
Everything carefully considered, even just extending from 24 to 28 weeks will bring my chances of SVR from 25% to about 40%. Further extending to 36 weeks would bring it up to about 50%. It would be impossible for me to extend it to 48 weeks, so that's out of the question. I don't think the SVR chances at 48 weeks for genotype 3a with cirrhosis would be much different than at 36 weeks anyway.
Results of an Indian/Pakistani study that looked at genotype 3 SVR after 24 weeks when detectable at 4 weeks:
>50 IU 44% SVR
>600 IU 33% SVR
I couldn't find the <50IU results (I was 44IU), and the study doesn't take cirrhosis/no cirrhosis into consideration.
>50 IU 44% SVR
>600 IU 33% SVR
I couldn't find the <50IU results (I was 44IU), and the study doesn't take cirrhosis/no cirrhosis into consideration.
I've been looking at the results of research in Pakistan today: http://www.tropicalgastro.com/articles/30/4/Sustained-virological-response-to-pegylatedinterferon-and-ribavirin-in-patients-with-genotype3-HCV-cirrhosis.html
According to that website, genotype 3a is by far the most common genotype in Pakistan.
I notice a major difference in the SVR rates for people with "Child A" and "Child B" cirrhosis (they don't treat people with decompensated cirrhosis "Child C").
According to that website, genotype 3a is by far the most common genotype in Pakistan.
I notice a major difference in the SVR rates for people with "Child A" and "Child B" cirrhosis (they don't treat people with decompensated cirrhosis "Child C").
I don't know if Hector will see your post and question. I may be going out on a limb here because I know little about Genotype 3, but I can see at least 1 difference and possibly 2 between your case and Peter's.
Peter was still Detectable at 4 weeks. You were Undetectable at 4 weeks (you had an RVR, a rapid virologic response). That makes a big difference.
I looked back at your profile and posts but I cannot find what your liver fibrosis stage is. That makes a difference. Peter is at Stage 4 (cirrhosis) and people with cirrhosis are more difficult to treat than those without cirrhosis.
From Hector's quote:
"Patients with genotype 2 and 3 infections who fail to achieve an RVR (mostly patients with HCV genotype 3 infection with high viral loads and
bridging fibrosis or cirrhosis) have poor SVR rates with 24 weeks of therapy and may benefit from longer duration of treatment, but this has not been prospectively evaluated."
I hope this helps.
Peter was still Detectable at 4 weeks. You were Undetectable at 4 weeks (you had an RVR, a rapid virologic response). That makes a big difference.
I looked back at your profile and posts but I cannot find what your liver fibrosis stage is. That makes a difference. Peter is at Stage 4 (cirrhosis) and people with cirrhosis are more difficult to treat than those without cirrhosis.
From Hector's quote:
"Patients with genotype 2 and 3 infections who fail to achieve an RVR (mostly patients with HCV genotype 3 infection with high viral loads and
bridging fibrosis or cirrhosis) have poor SVR rates with 24 weeks of therapy and may benefit from longer duration of treatment, but this has not been prospectively evaluated."
I hope this helps.
i was reading your Advice to Peter. I am type 3 but und at 4 weeks and 14 go back monday for blood work I took last shot on this past Sat. is my case diff
Thanks, Pooh.
At the moment I'm considering returning to work while on treatment. I can't think of any other way.
Problem with that is I'll be somewhat incompetent and less productive because the job requires quick thinking and clear, articulate speech. I'm in a bit of a mental fog on treatment, and my voice is weak and slightly slurred by times. And I'm very tired all the time.
At the moment I'm considering returning to work while on treatment. I can't think of any other way.
Problem with that is I'll be somewhat incompetent and less productive because the job requires quick thinking and clear, articulate speech. I'm in a bit of a mental fog on treatment, and my voice is weak and slightly slurred by times. And I'm very tired all the time.
Thanks for the answers.
Back in March, having read that my chances of SVR would be better at 48 or even 36 weeks, I made inquiries about the possibility of extending my treatment. At that time I was told by the Hep C at the Lair Center that it would NOT be possible to extend treatment for a genotype 3. So I eventually accepted that it could not be extended, and made preparations to move on with my life, thinking I had done my best whatever the outcome of treatment.
After carefully considering all the known facts, I realized extending the treatment even for a few weeks might make a difference. Although there is a difference in success rates between 24 and 36/48 weeks, I haven't seen any evidence anywhere that extending it 48 weeks from 36 would make a difference.
(although I was at 44 and not UND at 4 weeks, I may have become UND soon afterwards. I had great difficulty in persuading them to do the positive/negative test at 8 weeks, and ideally it should have been done at 5 or 6 weeks. Also, if I knew what my viral load was before treatment began, it would help to determine exactly what my chances are.)
In March, when I decided I would try to find a way to extend treatment, the Lair Center nurse said they've never extended treatment for Genotype 3. But why did she wait until after my last injection to NOW tell me it is possible after all? Then the doctor said yesterday they in fact sometimes HAVE extended treatment for people with cirrhosis and genotype 2/3.
Then, I could have made arrangements that would have made it possible to continue. But now, it will be very complicated financially as I mentioned before, and for other reasons which I haven't mentioned. I have no family or living relatives within 5000 miles. What's even worse than having a decompensated liver (end stage) is being BROKE and having a decompensated liver. I'll be rather helpless at that point, and without money it would be even worse.
Back in March, having read that my chances of SVR would be better at 48 or even 36 weeks, I made inquiries about the possibility of extending my treatment. At that time I was told by the Hep C at the Lair Center that it would NOT be possible to extend treatment for a genotype 3. So I eventually accepted that it could not be extended, and made preparations to move on with my life, thinking I had done my best whatever the outcome of treatment.
After carefully considering all the known facts, I realized extending the treatment even for a few weeks might make a difference. Although there is a difference in success rates between 24 and 36/48 weeks, I haven't seen any evidence anywhere that extending it 48 weeks from 36 would make a difference.
(although I was at 44 and not UND at 4 weeks, I may have become UND soon afterwards. I had great difficulty in persuading them to do the positive/negative test at 8 weeks, and ideally it should have been done at 5 or 6 weeks. Also, if I knew what my viral load was before treatment began, it would help to determine exactly what my chances are.)
In March, when I decided I would try to find a way to extend treatment, the Lair Center nurse said they've never extended treatment for Genotype 3. But why did she wait until after my last injection to NOW tell me it is possible after all? Then the doctor said yesterday they in fact sometimes HAVE extended treatment for people with cirrhosis and genotype 2/3.
Then, I could have made arrangements that would have made it possible to continue. But now, it will be very complicated financially as I mentioned before, and for other reasons which I haven't mentioned. I have no family or living relatives within 5000 miles. What's even worse than having a decompensated liver (end stage) is being BROKE and having a decompensated liver. I'll be rather helpless at that point, and without money it would be even worse.
An IL28B Polymorphism Determines Treatment Response of Hepatitis C Virus Genotype 2 or 3 Patients Who Do Not Achieve a Rapid Virologic Response
http://www.gastrojournal.org/article/S0016-5085(10)00841-3/abstract
"..... among patients who failed to attain RVR (VD24 SVR rates: CC, 87%; CT, 67%; and TT, 29%....."
Results of an IL38B test might help you determine length of tx, taking other things like finances and side effects into account.
(i.e. a CT result might encourage you to grit your teeth and hang in there for 48, CC might help you make the decision whether you go on or not at 36, and TT might allow you to discontinue - now or later - and wait a couple years to see if any better tx is releasd, if finances or other matters start to become problematic.)
These %s are all probably worse for a cirrhotic, but give you a rough idea of the relative probbilities.
http://www.gastrojournal.org/article/S0016-5085(10)00841-3/abstract
"..... among patients who failed to attain RVR (VD24 SVR rates: CC, 87%; CT, 67%; and TT, 29%....."
Results of an IL38B test might help you determine length of tx, taking other things like finances and side effects into account.
(i.e. a CT result might encourage you to grit your teeth and hang in there for 48, CC might help you make the decision whether you go on or not at 36, and TT might allow you to discontinue - now or later - and wait a couple years to see if any better tx is releasd, if finances or other matters start to become problematic.)
These %s are all probably worse for a cirrhotic, but give you a rough idea of the relative probbilities.
Hallo,
don't make a mistake to treat only 6 months. Unless you realy get ill. I did the same (have also 3a, and I am 56years) and the virus was back after two months. I am sorry that I did not treat the first time 48 weeks. And I see more people around me by who de virus came back after 24 weeks treatment. And they have to treat again and for 48 weeks. Don't worry abouth work and material things There are many ways to chose in life if you are healthy.
Good luck to you
don't make a mistake to treat only 6 months. Unless you realy get ill. I did the same (have also 3a, and I am 56years) and the virus was back after two months. I am sorry that I did not treat the first time 48 weeks. And I see more people around me by who de virus came back after 24 weeks treatment. And they have to treat again and for 48 weeks. Don't worry abouth work and material things There are many ways to chose in life if you are healthy.
Good luck to you
Sorry your doctor's office is like that. My doctor's office has it's share of frustrations as well. Sometimes you have to be your own mediator. The labs we need are usually pretty predictable. Your doctor's office could give you your labs slips in advance so you could hand carry them to the lab yourself. I mean why fax the lab when they can just give you the original.
There is usually a place on the lab form that indicates the lab can forward your labs to another provider. At least LabCorp is like that.
In the beginning I misunderstood and I thought I only had to treat 24 weeks so I planned accordingly. I later realized I am supposed to treat 48 weeks. Gah. I had so much reorganizing to do.
Good luck to you♫.
There is usually a place on the lab form that indicates the lab can forward your labs to another provider. At least LabCorp is like that.
In the beginning I misunderstood and I thought I only had to treat 24 weeks so I planned accordingly. I later realized I am supposed to treat 48 weeks. Gah. I had so much reorganizing to do.
Good luck to you♫.
I also would do 48 weeks if giving the choice.
Failing treatment when you have cirrhosis could have a life long outcome that is more more dire than your current income situation could ever be. If you are unable to clear the virus and need to retreat later with the same treatment you would not have as good of chance of SVR as you do now. Your best chance for success is now. When you haven't treated before (treatment naive). There is also always the chance that if you fail treatment your liver disease could progress to decompensation before you can successfully treat it. At that point you will no longer be able to treat your hepatitis C and will need a transplant to continue living. This is something you should want to avoid at all costs as your life will never be the same once you decompensate.
From the AASLD Practice Guidelines for the treatment of hepatitis C says..
"Patients with genotype 2 and 3 infections who fail to achieve an RVR (mostly patients with HCV genotype 3 infection with high viral loads and
bridging fibrosis or cirrhosis) have poor SVR rates with 24 weeks of therapy and may benefit from longer duration of treatment, but this has not been prospectively evaluated."
Because you have cirrhosis and did not become undetectable until week 8 you are risking a lot by stopping now.
It is unfortunate that the doctor you are seeing is very unorganized and have made mistakes. But making the mistake of stopping early and relapsing would be the biggest mistake you could ever make. I would suggest you really understand what you are risking by stopping now. While it may make this difficult having End-Stage Liver Disease will make all you current problems seem small compared to what you will be facing.
I wish you all the luck. I am not saying this is an easy decision by any means but I can tell you from my position where I have End-Stage Liver Disease and need a transplant in the next 6-9 months I envy your chances of beating you hepatitis C once and for all. Also remember even with a life-saving transplant patients with hepatitis C induced liver disease still need to rid themselves of the virus or it will destroy their new liver too. Hepatitis C must be defeated sooner of later. Sooner is always better.
Best of luck to you. I hope with all my might you obtain SVR and no relapse.
Hector
Failing treatment when you have cirrhosis could have a life long outcome that is more more dire than your current income situation could ever be. If you are unable to clear the virus and need to retreat later with the same treatment you would not have as good of chance of SVR as you do now. Your best chance for success is now. When you haven't treated before (treatment naive). There is also always the chance that if you fail treatment your liver disease could progress to decompensation before you can successfully treat it. At that point you will no longer be able to treat your hepatitis C and will need a transplant to continue living. This is something you should want to avoid at all costs as your life will never be the same once you decompensate.
From the AASLD Practice Guidelines for the treatment of hepatitis C says..
"Patients with genotype 2 and 3 infections who fail to achieve an RVR (mostly patients with HCV genotype 3 infection with high viral loads and
bridging fibrosis or cirrhosis) have poor SVR rates with 24 weeks of therapy and may benefit from longer duration of treatment, but this has not been prospectively evaluated."
Because you have cirrhosis and did not become undetectable until week 8 you are risking a lot by stopping now.
It is unfortunate that the doctor you are seeing is very unorganized and have made mistakes. But making the mistake of stopping early and relapsing would be the biggest mistake you could ever make. I would suggest you really understand what you are risking by stopping now. While it may make this difficult having End-Stage Liver Disease will make all you current problems seem small compared to what you will be facing.
I wish you all the luck. I am not saying this is an easy decision by any means but I can tell you from my position where I have End-Stage Liver Disease and need a transplant in the next 6-9 months I envy your chances of beating you hepatitis C once and for all. Also remember even with a life-saving transplant patients with hepatitis C induced liver disease still need to rid themselves of the virus or it will destroy their new liver too. Hepatitis C must be defeated sooner of later. Sooner is always better.
Best of luck to you. I hope with all my might you obtain SVR and no relapse.
Hector
I agree with cando completely that with a chirrotic liver and not attaining a Und. status at week 4 doing 48 weeks is certainly advisable.
Best of luck...
Will
Best of luck...
Will
Your doctors odds are a little high for someone that is cirrhotic, being your a geno 3 with cirrhosis without an RVR 48 weeks should be the norm. If I was you I would do 48 weeks........ Hang in there.
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It is really unfortunate that the doctor and nurse did not tell you all of the treating facts, including the truth in terms of extending to 48 weeks, at the beginning of treatment or at least in April. I know that complicates your financial picture.
However, I would sure hate to see you stop treatment at 24 weeks and relapse. Then you would have to do treatment all over again and your chances at SVR would not be as high. Plus, your cirrhosis could get worse while waiting for future treatment.
You are concerned about, "What's even worse than having a decompensated liver (end stage) is being BROKE and having a decompensated liver. I'll be rather helpless at that point, and without money it would be even worse. "
I have to agree with you that being broke and having a decompensated liver is not an enviable position. However, think of it this way. If you treat now for 48 weeks you will hopefully attain SVR and not have to worry about or deal with decompensated liver disease in the future.
I guess I would encourage you to continue treatment if at all possible. Sometimes when in a bind, we can get creative and inventive, tighten the belt, and push through the obstacles. I do not mean to sound flip or trite. I know you are concerned about the finances. But in the long run treating now and attaining SVR will make your entire future mush less complicated and much more secure in every way.
Best of luck.