Aa
Relapsed
After 24 weeks of INF, Ribavirin, GS5885 and another Gilead, UND by week 6, then straight into another 24 weeks of INF and Ribavirin, my PCR shows HVC RNA at week 12 EOT. HCV-1a. CC. Very tough year of tx with lots of sides. What now? Hepa says no more INF. Sofobuvir (GS7977) not doing so well with 1a and 1b and not yet tested on relapses. I'm 62, moderate fibrosis prior to tx. I'm tired. What to do?
Sorry to hear that your fibrosis has moved from level 8 to Level 9. Even that's bad it could be worse. 40 years is a long time. Nice to hear that you're trying to live Your life doing what you want and are working. I must say I'm impressed! A lot of People would be very depressed. (That doesn't help...)
I have had hep C for 20 years, have genotype 1a and suffer a bit because of it. Stomach-pain, swollen fingers and feet, headaces and nausea.
I really hope for a New interferonfree treatment is coming soon!
I hear that some say it will take 2 years and some say 5... Hope it will be available within 2 years!!! Many lives is depending on it.
Meanwhile we have to make the best of it. Trying to live our lives and do the things we really want.
Please update me on how things are going. wishing you all the best.
K
I have had hep C for 20 years, have genotype 1a and suffer a bit because of it. Stomach-pain, swollen fingers and feet, headaces and nausea.
I really hope for a New interferonfree treatment is coming soon!
I hear that some say it will take 2 years and some say 5... Hope it will be available within 2 years!!! Many lives is depending on it.
Meanwhile we have to make the best of it. Trying to live our lives and do the things we really want.
Please update me on how things are going. wishing you all the best.
K
Thanks. How kind you are. My fibrosis has moved on ... From Fibroscan level 8 to 9. It's to be expected. I have had chronic HCV infection for nearly 40 years. And I often don't feel well these days. I can't do interferon again and even if I could, the side effects of Boceprevir or Telaprevir would be too much for me. So I wait for an interferon-free tx for Genotype 1a. I realize it may not come soon enough, so I try to do all the living and working I want to do in case I get too sick.
I'm so sorry to hear about Your relapse too. Treatment is hard, I know! I was treated with interferon,ribaverin and victrelis for 28 weeks from august 2012 to March 2013. The virus was undetectable week and trough treatment, but finally now in august 2013 I too relapsed... My hepatologist gave me 95% chance of SVR.
Don't know what to do now. Since I had a lot of sideeffects during treatment I think I will wait for New drugs. Maybe take a biopsy to see if I can wait.
For how long have you had hcv? I'm curious to hear about the resault of Your New biopsy (or was it fibroscan?) And if you are going for treatment again now.
Wish you the best - you deserve to be virusfree!
Kirsti
Don't know what to do now. Since I had a lot of sideeffects during treatment I think I will wait for New drugs. Maybe take a biopsy to see if I can wait.
For how long have you had hcv? I'm curious to hear about the resault of Your New biopsy (or was it fibroscan?) And if you are going for treatment again now.
Wish you the best - you deserve to be virusfree!
Kirsti
Thank you so much, Dee. It has been hard, but I am resilient and try to be compassionate with myself too. I tried my best to get well and it didn't work. Now, some rest, repair, reflection.
More importantly, it worked for you, and knowing that puts a little smile on my face.
Vivian
More importantly, it worked for you, and knowing that puts a little smile on my face.
Vivian
I am so sorry to hear about your relapse, I know how devastating that can be. I relapsed the first time, maybe because I was on the old SOC as well as a trial drug so that Inf and Riba were reduced. Perhaps if I had just done the Inf and Riba I would have done better
As a relapser I was able to do 24 weeks, with the Incivek. I feel very lucky that it worked for me. It was very difficult however I did make it through to SVR.
Take a break, relax, renew your soul, then try again
All my best
Dee
As a relapser I was able to do 24 weeks, with the Incivek. I feel very lucky that it worked for me. It was very difficult however I did make it through to SVR.
Take a break, relax, renew your soul, then try again
All my best
Dee
Great questions and remarks!
The Fibroscan score was in September/October, 2011. I started tx with INF, riba, GS5885 and a placebo at the beginning of Dec 2011. Given the long period of UND, I'm hoping for at least no change up from 8. And yes Fibroscan 8 is equivalent to Metavir 2. I will do the Fibroscan again in March, though I am having a spiral CAT scan tomorrow for mesenteric lymphoma and they tell me that will show them a lot about the hepatic blood supply which in turn gives some indication of how the liver is doing overall.
Yes, 10 is the mark for hgb, though of course some say the worse your anemia is, the more likely you are to SVR :-)
My bone pain was very effectively managed by the pain clinic at the hospital where I go for HCV. It took a couple of weeks and experiments to find a combination of analgesics that worked, but we did. I could not have continued tx without them. The downside was that at EOT I was physically dependent on the pain meds and getting off them was really tough. But I did it :-)
The hepa says no more interferon, but the fact is, if I say I want to do it and we agree on a protocol for sx, then he will do it and watch me like a hawk, as will his nurse. The only other condition I have is mesenteric non-Hodgkins lymphoma, caused by 40 years of CHC infection, very small so far and hopefully not progressing (tomorrow's CAT scan). The protocol is to treat the HCV first, then deal with the NHL.
My main concern with my team is that they can be a bit slow to get the message that the sx are serious. With the pain, the liver team put me on the Australian version of prescription strength Tylenol with codeine. No relief, and when I told them they dithered. So too, with the outrageous vomiting and neutropenia episodes. Once they get the message that I'm feeling serious, they act and try everything.
What I do know is that I can't try triple without having a support system that keeps me treating at the appropriate dosage for as long as it takes!
The Fibroscan score was in September/October, 2011. I started tx with INF, riba, GS5885 and a placebo at the beginning of Dec 2011. Given the long period of UND, I'm hoping for at least no change up from 8. And yes Fibroscan 8 is equivalent to Metavir 2. I will do the Fibroscan again in March, though I am having a spiral CAT scan tomorrow for mesenteric lymphoma and they tell me that will show them a lot about the hepatic blood supply which in turn gives some indication of how the liver is doing overall.
Yes, 10 is the mark for hgb, though of course some say the worse your anemia is, the more likely you are to SVR :-)
My bone pain was very effectively managed by the pain clinic at the hospital where I go for HCV. It took a couple of weeks and experiments to find a combination of analgesics that worked, but we did. I could not have continued tx without them. The downside was that at EOT I was physically dependent on the pain meds and getting off them was really tough. But I did it :-)
The hepa says no more interferon, but the fact is, if I say I want to do it and we agree on a protocol for sx, then he will do it and watch me like a hawk, as will his nurse. The only other condition I have is mesenteric non-Hodgkins lymphoma, caused by 40 years of CHC infection, very small so far and hopefully not progressing (tomorrow's CAT scan). The protocol is to treat the HCV first, then deal with the NHL.
My main concern with my team is that they can be a bit slow to get the message that the sx are serious. With the pain, the liver team put me on the Australian version of prescription strength Tylenol with codeine. No relief, and when I told them they dithered. So too, with the outrageous vomiting and neutropenia episodes. Once they get the message that I'm feeling serious, they act and try everything.
What I do know is that I can't try triple without having a support system that keeps me treating at the appropriate dosage for as long as it takes!
I was more than content if I could keep my Hemoglobin at 10. 10 is usually the value where intervention is considered (dose reduction) though some people can continue to treat at this level without dose reducing. It just depends on the person & their medical particulars.
_____________
I see you are having another Fibroscan. How old is that Fibroscan of 8 you mentioned. Is that -= to a Metavir stage 2?
The thing is didn't your Hepa tell you No more Interferon? If that is the case then I am not sure what to say. I'm not sure if you have other conditions so forgive me if I am out of line here but it is sounding like you might be able to adhere to triple treatment duration with perhaps maybe more effective side management.
Bone pain and Neutropenia are known potential side effects of Peginterferon. As mentioned, dose reduction is one course of action. However based on the posts I have seen here, and what i have read elsewhere in addition to people I know personally who have treated there are ★Many★ approaches to effective management of averse events ~ especially pain.
I agree with others that so much of what you have said indicates you responded well to the meds in the past. If (IF) you decide to treat again I would find a way to plan in advance with a doctor (or doctors) differently versed in side effect management with triple therapy. You deserve a fighting chance to tolerate the treatment and maintain some type of quality of life in the process.
Treatment Duration
Thought there are some caveats, the gist is:
As a relapser if you treat with Incivek and are UND on weeks 4 & 12 you would be eligible to treat 24 weeks; if not, treatment duration would be 48 weeks.
It's a little trickier with Boceprevir so here's a chart:
http://www.medhelp.org/user_photos/show/284656?personal_page_id=1282072
Best of luck
★¸¸.☆Take your very well deserved break first and heal.★¸¸.☆
★¸¸.☆Think about all this stuff later★¸¸.☆
_____________
I see you are having another Fibroscan. How old is that Fibroscan of 8 you mentioned. Is that -= to a Metavir stage 2?
The thing is didn't your Hepa tell you No more Interferon? If that is the case then I am not sure what to say. I'm not sure if you have other conditions so forgive me if I am out of line here but it is sounding like you might be able to adhere to triple treatment duration with perhaps maybe more effective side management.
Bone pain and Neutropenia are known potential side effects of Peginterferon. As mentioned, dose reduction is one course of action. However based on the posts I have seen here, and what i have read elsewhere in addition to people I know personally who have treated there are ★Many★ approaches to effective management of averse events ~ especially pain.
I agree with others that so much of what you have said indicates you responded well to the meds in the past. If (IF) you decide to treat again I would find a way to plan in advance with a doctor (or doctors) differently versed in side effect management with triple therapy. You deserve a fighting chance to tolerate the treatment and maintain some type of quality of life in the process.
Treatment Duration
Thought there are some caveats, the gist is:
As a relapser if you treat with Incivek and are UND on weeks 4 & 12 you would be eligible to treat 24 weeks; if not, treatment duration would be 48 weeks.
It's a little trickier with Boceprevir so here's a chart:
http://www.medhelp.org/user_photos/show/284656?personal_page_id=1282072
Best of luck
★¸¸.☆Take your very well deserved break first and heal.★¸¸.☆
★¸¸.☆Think about all this stuff later★¸¸.☆
In September 2011 before tx, my Fibroscan score was 8, sort of low end of bad fibrosis. The good thing about Fibroscan is that it's not invasive and it looks at a lot of liver tissue. The bad thing is that while it is very accurate at assessing low and very high fibrosis, it's not so reliable in the 7-8 range. Biopsy is more accurate across all ranges, but it only takes a tiny, tiny sample which may not be representative. One would hope that after 11 months of UND, my liver is no worse than before tx, but with this virus, who knows? Thanks for your kind words. Love your blog.
Dear pooh,
Thanks for your good advice. My main problem with the INF was severe bone pain. My hemoglobin went down to just below 100 (100 equals 10 in your system, I believe?) But then it crept up a tiny bit to just over 100, so there was no talk of dealing with it. Fact is, I don't know what they do here if the hemoglobin goes lower than 98. I did have a ribavirin reduction in the last 3 months of tx, from 1200 to 600. This was because I had two episodes of neutropenia and extreme vomiting for days on end which put great stress on my heart and esophagus. I also lost weight over the course of treatment and went down to the weight at which 600 ribavirin is recommended. But I agree with you, if I am going to put myself through this again, I need to know I can stay on the drugs and the therapeutic dosages no matter what. I also need to keep on working, which I pretty much managed to do during last tx. In the meantime, stage the liver again, rest, think, go to NZ for my birthday in a couple of weeks, go to Japan, Cape Cod, NH, Seattle and Thailand for work and family and island rest in May-June, then maybe try again.
Thanks for your good advice. My main problem with the INF was severe bone pain. My hemoglobin went down to just below 100 (100 equals 10 in your system, I believe?) But then it crept up a tiny bit to just over 100, so there was no talk of dealing with it. Fact is, I don't know what they do here if the hemoglobin goes lower than 98. I did have a ribavirin reduction in the last 3 months of tx, from 1200 to 600. This was because I had two episodes of neutropenia and extreme vomiting for days on end which put great stress on my heart and esophagus. I also lost weight over the course of treatment and went down to the weight at which 600 ribavirin is recommended. But I agree with you, if I am going to put myself through this again, I need to know I can stay on the drugs and the therapeutic dosages no matter what. I also need to keep on working, which I pretty much managed to do during last tx. In the meantime, stage the liver again, rest, think, go to NZ for my birthday in a couple of weeks, go to Japan, Cape Cod, NH, Seattle and Thailand for work and family and island rest in May-June, then maybe try again.
"Usually when one fails tx. with one of these new medications,the reason is from their lack of sensitivity to the Interferon."
Yeah. No, I responded to the INF, the ribavirin, but it was probably the GS5885 that brought the VL down so low so quickly. In monotherapy trials with GS5885, it always decreased the VL really fast and really low but only for a short time. Response was not the issue. Relapse was. I should have been UND at week 4, but didn't reach UND until some time between W4 and W6. I'm betting that if I'd had the PI I would have had VEVR. My hepa said clearly that I had >85% chance of SVR if I reached UND at W4 or before. When I did not, he said my chance of SVR had reduced to ~60%. The telaprevir and boceprevir studies for old SOC relapsers without cirrhosis put the SVR rate at >85.
Of course, all this partly depends on sx. I did very badly on INF and had 2 major adverse events in the last 3 months of tx which necessitated reduction of ribavirin, though not INF. I hear awful things about sx on triple tx, so I need to think about what I can stand and how urgent it is to treat (restaging liver now)
Thanks all for your advice and support.
Yeah. No, I responded to the INF, the ribavirin, but it was probably the GS5885 that brought the VL down so low so quickly. In monotherapy trials with GS5885, it always decreased the VL really fast and really low but only for a short time. Response was not the issue. Relapse was. I should have been UND at week 4, but didn't reach UND until some time between W4 and W6. I'm betting that if I'd had the PI I would have had VEVR. My hepa said clearly that I had >85% chance of SVR if I reached UND at W4 or before. When I did not, he said my chance of SVR had reduced to ~60%. The telaprevir and boceprevir studies for old SOC relapsers without cirrhosis put the SVR rate at >85.
Of course, all this partly depends on sx. I did very badly on INF and had 2 major adverse events in the last 3 months of tx which necessitated reduction of ribavirin, though not INF. I hear awful things about sx on triple tx, so I need to think about what I can stand and how urgent it is to treat (restaging liver now)
Thanks all for your advice and support.
I agree with Karen (crossroads) and Can-do, go for it. You had a good response to the Inf and Riba. It if was me, I would treat as soon as I could or, at least, as soon as I recuperated from the previous Tx.
One thing to keep in mind is that the PIs do usually cause a drop in Hemoglobin. You take Incivek for 12 weeks whereas you have to take Victrellis for 24 weeks. Might be something to discuss with your doctor which drug would be best for you in your situation since you had an anemia problem with the last Tx. Also, I know you are in Australia. Do they use rescue drugs like Procrit and Neupogen? I know your Riba was reduced last time, I believe you said down to 400 mg from 1200 mg. That is quite a drop in Riba dose. And was your Interferon reduced too? These are all things to discuss with your doc to see if they can try to keep you on the drugs so that you will have the best chance possible for SVR.
Being that you are in your 60s, liver fibrosis progression will probably speed up. It is better to treat before one advances to the higher fibrosis stages. One has more complications and also the SVR rate is lower with more advanced fibrosis.
Best of luck.
One thing to keep in mind is that the PIs do usually cause a drop in Hemoglobin. You take Incivek for 12 weeks whereas you have to take Victrellis for 24 weeks. Might be something to discuss with your doctor which drug would be best for you in your situation since you had an anemia problem with the last Tx. Also, I know you are in Australia. Do they use rescue drugs like Procrit and Neupogen? I know your Riba was reduced last time, I believe you said down to 400 mg from 1200 mg. That is quite a drop in Riba dose. And was your Interferon reduced too? These are all things to discuss with your doc to see if they can try to keep you on the drugs so that you will have the best chance possible for SVR.
Being that you are in your 60s, liver fibrosis progression will probably speed up. It is better to treat before one advances to the higher fibrosis stages. One has more complications and also the SVR rate is lower with more advanced fibrosis.
Best of luck.
"Usually when one fails tx. with one of these new medications,the reason is from their lack of sensitivity to the Interferon."
Not quite sure I understand that as if one still had the other 2 new drugs and relapsed what would make it any different without the Interferon???
Not quite sure I understand that as if one still had the other 2 new drugs and relapsed what would make it any different without the Interferon???
I agree, go for it. You had a great response to just Riba and interferon being you were und at week 6. Add one of the PI's to the mix and you should be good to go...... Depending on your stage of liver it looks great for a short course......... Hang in there.
Go for it! What relief you must feel. How is your liver disease? I have a bad memory. Will you go 48 or 24? Happy happy for you! Karen:)
Wow!!! My hepa talked to Gilead and they unblinded me. I got the placebo and not the GS trial protease inhibitor. This means I can retreat with PI. Now doing a new Fibroscan, CT for lymph lesions, and talking about whether I can survive INF again. For us HCV 1 people, INF still seems inevitable. Sofosbuvir (spelling) is now looking not so good for genotype 1 alone or with GS5885. I could start Telaprevir on Boceprevir in July, if I want. What do you think guys?
Hey frijole, I was UND at 6 weeks with INF, Ribavirin, and the two GS trial drugs, one of which may have been a placebo. Trial protocol was that if I went UND at Week 4 or earlier, tx would have ceased at Week 24. If UND later than Week 4 then trial drugs stopped at Week 24 but the old SOC of INF and Ribavirin continued to Week 48.
I responded to INF and the nearly catastrophic side effects were from the INF because they continued, even worsened, after the trial drugs stopped. Given my Fibroscan level of 8, gender, CC allele, and overall excellent health, we were all surprised when I dragged my feet with UND and then relapsed after tx ended. HCV-1a is a tough one, and I'm pretty sure I got the placebo rather than the GS trial protease inhibitor because while all the other pills had distinctive chemical smells when I opened their bottles, the PI just smelled like salt. I once chewed one and it tasted like sodium bicarbonate.
But Gilead should unblind me now so I have choices in July, when I will have had 6 months of rest and maybe ready to try again. I am going to put pressure on them.
I responded to INF and the nearly catastrophic side effects were from the INF because they continued, even worsened, after the trial drugs stopped. Given my Fibroscan level of 8, gender, CC allele, and overall excellent health, we were all surprised when I dragged my feet with UND and then relapsed after tx ended. HCV-1a is a tough one, and I'm pretty sure I got the placebo rather than the GS trial protease inhibitor because while all the other pills had distinctive chemical smells when I opened their bottles, the PI just smelled like salt. I once chewed one and it tasted like sodium bicarbonate.
But Gilead should unblind me now so I have choices in July, when I will have had 6 months of rest and maybe ready to try again. I am going to put pressure on them.
The good news as far as I can see is that you didn't have Sofosbuvir (7977) and that the next time around you can treat with it. I have great faith in this drug and a different combo will be a whole different story. I'm not surprised that combo failed you. NO more interferon. The next time around will be a more gentle treatment! I wouldn't take any trial that had a placebo. Gilead may very well offer you something else with 7977. Second piece of good news is that you gave your liver a well deserved rest from being attacked from this ugly virus. Keep your chin up....there really is good news on the horizon.
Gilead won't unblind you for a year and a half? Wow, that is one of the things that scares me so much about trials. If it doesn't work, and they won't unblind the study, then it may impact one's ability to participate in another trial or use the next approved treatment. Best wishes, and keep us posted. I think willbb is waiting for his previous trial to be unblinded too.
Advocate1955
Advocate1955
Wow. I am so sorry. Been there with relapse too and know how difficult it is. Was the UND at week 6 considered late with this trial? Why was it determined that interferon was your problem, not the trial drugs - so much so that the hepatologist said you could not do INF again?
I agree with you to stay away from trials wher you may be given a placebo. The risk of a waste of time is too great.
I am unclear about your treatment. Were you UND at week 6 with only the two gilead trial drugs and then went on to 24 weeks with only Riba and Inf?
frijole
I agree with you to stay away from trials wher you may be given a placebo. The risk of a waste of time is too great.
I am unclear about your treatment. Were you UND at week 6 with only the two gilead trial drugs and then went on to 24 weeks with only Riba and Inf?
frijole
I'm just so sorry you are having to go through all of this! But I am glad you will have a biopsy done to accurately stage your liver. That is probably the best thing you can do right now for yourself.
I can't imagine how taxing emotionally this must be on you but when your feeling better go out and play, have fun, enjoy life. There is nothing you can do about tx at this point and time in your life. So go out and live it up and worry about tx when the time comes.
Jules
I can't imagine how taxing emotionally this must be on you but when your feeling better go out and play, have fun, enjoy life. There is nothing you can do about tx at this point and time in your life. So go out and live it up and worry about tx when the time comes.
Jules
Thank you all so much. Many hours with my hepa today. No tx options at this time. Pointless and dangerous to repeat INF, he says, as although I cleared,I relapsed and ended up in ER twice with INF side effects. And even if I could tolerate anther round of INF, the second Gilead trial drug was a protease inhibitor or placebo, Gilead wont unblind and tell me if I got the protease inhibitor until the whole trial is over a year or s down the road, so no protease inhibitors for me for now. Hepa says, must treat again within 5 years. Thinks a tailored multi-drug approach based on Sofusprevir (spelling? GS7977) will be the way to go. How many times have I been told a new effective treatment is just 5 years off? Gonna Fibroscan and biopsy to accurately stage where my liver is at now. Work out what to do or not to do about the T-cell NHL in the lymph nodes near my liver, and live right. Mostly I'm just sad that the emotional and spiritual burden of having HCV has not passed from me.
I am very sorry that you have relapsed and my thoughts are with you. I know it must be devastating.
I agree with Advocate and Jules, and my thinking is along their lines of thought. Hopefully you have an experienced and knowledgeable Hepatologist who will manage your care until you can treat in the future with some of the newer drugs.
Please do let us know how you are doing from time to time. Best to you.
I agree with Advocate and Jules, and my thinking is along their lines of thought. Hopefully you have an experienced and knowledgeable Hepatologist who will manage your care until you can treat in the future with some of the newer drugs.
Please do let us know how you are doing from time to time. Best to you.
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