Aa
6 Months Post, African American
Geno 1, female, African American. Triple therapy with VIC. Sept 2011 - March 2012.
No SVR for me. I am devastated. I am shocked. There are no guarantees but things had been going so well during tx, I felt for sure I would kill this dragon. But in turn, it seems like I only silenced it for awhile. Like fleas -- if you kill all of them but 2 -- before you know it you have a house full again. My nurse said the all orals will be out in 2014 but I am not rushing to ne a guinea pig, again.
From July 2011 - March 2012, my MedHelp buddies kept me going. I just knew this would be a distant memory. Instead, I feel like I have been tossed in the Hep C blender (again). That vortex of emotions and anxiety about the now, the tomorrow and the future. Thankfully, I have strong faith in God and am still on the AD's.
Anyway, for those of you who shared my journey, I posted some of my labs so I could see the patterns. I achieved UND 4 times. I am so glad I journaled about my symptoms, side effects and remedies. My faith is still strong as ever. I am blessed not to be in pain. Wishing everyone else here all the best.
Bee
No SVR for me. I am devastated. I am shocked. There are no guarantees but things had been going so well during tx, I felt for sure I would kill this dragon. But in turn, it seems like I only silenced it for awhile. Like fleas -- if you kill all of them but 2 -- before you know it you have a house full again. My nurse said the all orals will be out in 2014 but I am not rushing to ne a guinea pig, again.
From July 2011 - March 2012, my MedHelp buddies kept me going. I just knew this would be a distant memory. Instead, I feel like I have been tossed in the Hep C blender (again). That vortex of emotions and anxiety about the now, the tomorrow and the future. Thankfully, I have strong faith in God and am still on the AD's.
Anyway, for those of you who shared my journey, I posted some of my labs so I could see the patterns. I achieved UND 4 times. I am so glad I journaled about my symptoms, side effects and remedies. My faith is still strong as ever. I am blessed not to be in pain. Wishing everyone else here all the best.
Bee
Oh Bee I am so very sorry, this virus can be so tenacious !
I'm sitting here with my mouth wide open from shock.
Relapsing is always such sad news.
The one good thing to remember is although the virus is still with you, your liver has had a break. Many who do treatment and relapse discover that their fibrosis has improved during tx.
I know you will take good care of your liver and yes, before we know it interferon tx will be replaced by the very promising all orals.
With great empathy,
OH
I'm sitting here with my mouth wide open from shock.
Relapsing is always such sad news.
The one good thing to remember is although the virus is still with you, your liver has had a break. Many who do treatment and relapse discover that their fibrosis has improved during tx.
I know you will take good care of your liver and yes, before we know it interferon tx will be replaced by the very promising all orals.
With great empathy,
OH
So sorry. All I can say is that even better treatments are around the corner and they will be more effective and I believe easier as well.
It could be that treating has allowed the liver some repair. some people experience better health following even unsuccessful treatments.
Very sorry, but you'll get it this next time. : /
willy
It could be that treating has allowed the liver some repair. some people experience better health following even unsuccessful treatments.
Very sorry, but you'll get it this next time. : /
willy
Hi BB. I am so sorry that you relapsed after stopping treatment. Of course you must be more than disappointed. You definitely worked the program for all it was worth while seeming to have experienced about every side effect along the way. You definitely need to take a break after this ordeal.
I tried to find out what stage liver disease you by going through your posts but I never found it.(?) The good news is that the new oral treatments should have shorter treatment durations with out all those nasty side affects and servere blood level issues.
Those of us that have been or are on treatment with GS-7977 (over 2,000) are seeing amazing results without the downsides of interferon based treatments. Unless something has been missed, new oral treatments will be available in the near future. For most people with hepatitis C, waiting another 2-3 years will not make a huge difference as far as the liver disease is concerned.
August 08, 2012
"Gilead's GS-7977 with genotype 2/3 is an easier one to treat Hepatitis C and the drug, in combination with generic ribavirin, could get its initial approvals next year. In an equity research note to clients, S&P Capital IQ equity analyst Steven Silver viewed, "We see GS-7977 being combined with GILD's internal candidate GS-5885 in the more challenging genotype 1, including those patients who failed on previous treatments, in 2013. If successful, we expect the regimen to be filed for regulatory approval in 2014, and launched in 2015.
The first company to get approval for the next generation drug for treating Hepatitis C will have a major first mover advantage in the market. This is because physicians are progressively deferring to treat patients with available, approved drugs.
This was quite evident when Vertex Pharmaceutical's (Nasdaq: VRTX) Incivek witnessed 8.1 percent downside in U.S. sales during the second quarter. The drop in sales of Incivek is close to 30 percent when compared with the fourth quarter's $457 million in 2011. Interestingly, Vertex management blamed the demand downturn to more Hepatitis C patients being warehoused for future treatment with newer regimen such as GS-7977. The treatment period in the new drug candidate is shortened to 12 weeks versus 24 – 48 weeks standard time."
Hang in there, BB. Give yourself a break. Progress is being made every day.
If someone like myself can still treat after at least 5 years of cirrhosis and needing a transplant within the next 6 months, surely new options will be coming along for others in much better health.
Best!
Hector
I tried to find out what stage liver disease you by going through your posts but I never found it.(?) The good news is that the new oral treatments should have shorter treatment durations with out all those nasty side affects and servere blood level issues.
Those of us that have been or are on treatment with GS-7977 (over 2,000) are seeing amazing results without the downsides of interferon based treatments. Unless something has been missed, new oral treatments will be available in the near future. For most people with hepatitis C, waiting another 2-3 years will not make a huge difference as far as the liver disease is concerned.
August 08, 2012
"Gilead's GS-7977 with genotype 2/3 is an easier one to treat Hepatitis C and the drug, in combination with generic ribavirin, could get its initial approvals next year. In an equity research note to clients, S&P Capital IQ equity analyst Steven Silver viewed, "We see GS-7977 being combined with GILD's internal candidate GS-5885 in the more challenging genotype 1, including those patients who failed on previous treatments, in 2013. If successful, we expect the regimen to be filed for regulatory approval in 2014, and launched in 2015.
The first company to get approval for the next generation drug for treating Hepatitis C will have a major first mover advantage in the market. This is because physicians are progressively deferring to treat patients with available, approved drugs.
This was quite evident when Vertex Pharmaceutical's (Nasdaq: VRTX) Incivek witnessed 8.1 percent downside in U.S. sales during the second quarter. The drop in sales of Incivek is close to 30 percent when compared with the fourth quarter's $457 million in 2011. Interestingly, Vertex management blamed the demand downturn to more Hepatitis C patients being warehoused for future treatment with newer regimen such as GS-7977. The treatment period in the new drug candidate is shortened to 12 weeks versus 24 – 48 weeks standard time."
Hang in there, BB. Give yourself a break. Progress is being made every day.
If someone like myself can still treat after at least 5 years of cirrhosis and needing a transplant within the next 6 months, surely new options will be coming along for others in much better health.
Best!
Hector
Bee: I am sorry about your relapse.
I can imagine how devastated you must be. Whenever the new treatment is available it is bound to be less problematic than these PIs are!!
_________________
WEEK 1, Schedule and What I have learned
Sep 10, 2011 - Journal entry
http://www.medhelp.org/user_journals/show/313273/WEEK-1--Schedule-and-What-I-have-learned
no liver biopsy (doctor's decision since I agreed to triple tx
____________________________
What nerve for Vertex to phrase the decline in sales this way,:
Interestingly, Vertex management blamed the demand downturn to more Hepatitis C patients being warehoused for future treatment with newer regimen such as GS-7977. The treatment period in the new drug candidate is shortened to 12 weeks versus 24 – 48 weeks standard time."
___________________--
I can imagine how devastated you must be. Whenever the new treatment is available it is bound to be less problematic than these PIs are!!
_________________
WEEK 1, Schedule and What I have learned
Sep 10, 2011 - Journal entry
http://www.medhelp.org/user_journals/show/313273/WEEK-1--Schedule-and-What-I-have-learned
no liver biopsy (doctor's decision since I agreed to triple tx
____________________________
What nerve for Vertex to phrase the decline in sales this way,:
Interestingly, Vertex management blamed the demand downturn to more Hepatitis C patients being warehoused for future treatment with newer regimen such as GS-7977. The treatment period in the new drug candidate is shortened to 12 weeks versus 24 – 48 weeks standard time."
___________________--
Sorry to hear this, no words can make it feel better right now but trust me it does get better in time, and you will fight on....... Only the best to you.
Oh Bee, I am so sorry. You were my role model, having been the first contact I made on this forum, and I've followed your progress and your posts, and was so sure you had beaten this monster. This is heartbreaking news. I hope you can keep all that good personal strength going while waiting for the next (and much improved) treatment to be approved. I do hope that your liver got some good R&R during this last tx and that you go into the next one both stronger and healthier. I'll be sending all my best wishes your way.
Please Keep Strong and get ready for the next round in the future. You will beat this monster.
Sorry to hear this Bee. We will go at this again with different results.feel free to send me a message anytime you like ....
Will
Will
I was so shocked in reading all of your recent posts. I hope you can find some way to stay strong and go 110% again for the next round. Thank you for posting your chart as I think this could help others in the near future. Take good care of yourself!
Jules
Jules
Very sorry to read this. There are more effective treatments in the pipeline and I wish you success going forward.
Unfortunately, there are some factors with triple therapy that can negatively impact on SVR. I don't know your history or degree of side effects or if extending treatment to 48 wks total would have been an option.
Would of, should of, could of doesn't matter, it really doesn't matter at this point but as indicated below, certain groups can benefit from a longer treatment duration.
Abstract
"Over time, HCV therapy with pegylated interferon and ribavirin has evolved from a fixed duration strategy to one of response guided therapy and this has enabled us to optimize treatment duration. With the evolution of protease inhibitor based therapy, the paradigm of response guided therapy has further helped in decreasing treatment duration in greater number of patients and which then translates into shorter duration of adverse events. However, several population groups have done better with extended duration therapy as opposed to response guided therapy despite early viral clearance. These include the Black population, and those with cirrhosis, decreased interferon sensitivity, and unfavorable IL28B genotypes. The proper identification of those who might benefit from extended duration HCV therapy will undoubtedly lead to optimal care and outcomes.
http://www.ncbi.nlm.nih.gov/pubmed
Unfortunately, there are some factors with triple therapy that can negatively impact on SVR. I don't know your history or degree of side effects or if extending treatment to 48 wks total would have been an option.
Would of, should of, could of doesn't matter, it really doesn't matter at this point but as indicated below, certain groups can benefit from a longer treatment duration.
Abstract
"Over time, HCV therapy with pegylated interferon and ribavirin has evolved from a fixed duration strategy to one of response guided therapy and this has enabled us to optimize treatment duration. With the evolution of protease inhibitor based therapy, the paradigm of response guided therapy has further helped in decreasing treatment duration in greater number of patients and which then translates into shorter duration of adverse events. However, several population groups have done better with extended duration therapy as opposed to response guided therapy despite early viral clearance. These include the Black population, and those with cirrhosis, decreased interferon sensitivity, and unfavorable IL28B genotypes. The proper identification of those who might benefit from extended duration HCV therapy will undoubtedly lead to optimal care and outcomes.
http://www.ncbi.nlm.nih.gov/pubmed
I am so very sorry to read this post. I think we all thought you had it made. You started within the same week that I did and I feel a kinship to you. We are still learning about the PI's and what they are and what they are not. The doctors have stuck to the guidelines provided by the drug companies on this one - and that has meant a lot of dose reductions that I wonder if have been justifiable. It will be interesting to see overall,
I hope you can regroup and wait for the new round of drugs. Results are promising. Meanwhile perhaps you can get a biopsy and have the geno test done to determine if you are a CC, CT or TT.
My heart goes out to you. I as well as many here have had this happen to us and know exactly how you feel right now.
bean
I hope you can regroup and wait for the new round of drugs. Results are promising. Meanwhile perhaps you can get a biopsy and have the geno test done to determine if you are a CC, CT or TT.
My heart goes out to you. I as well as many here have had this happen to us and know exactly how you feel right now.
bean
I am so sorry about this devastating news. I am hoping and wishing for a new cure for you soon. My thoughts are with you.
Hi Bee,
It was a very painful news and one that relates to me personally. Like everyone has said, all hope is not lost. Newer drugs will have better result for African Americans. The same view is my hope if I fail my tx.
After dealing with this sad news, I would advise you to review the expertise of your doctor and determine whether he made the right calls for you. If not, please plan to get a new and a better doctor who understands your peculiar tx needs as an African American. Please realize that this is just a temporal set back. I know and I am sure that with your strong and positive attitude and the power of the new drugs, you will prevail over the virus.
It was a very painful news and one that relates to me personally. Like everyone has said, all hope is not lost. Newer drugs will have better result for African Americans. The same view is my hope if I fail my tx.
After dealing with this sad news, I would advise you to review the expertise of your doctor and determine whether he made the right calls for you. If not, please plan to get a new and a better doctor who understands your peculiar tx needs as an African American. Please realize that this is just a temporal set back. I know and I am sure that with your strong and positive attitude and the power of the new drugs, you will prevail over the virus.
so sorry to read your post. you gave it your best shot and were an inspiration to so many, including me.
i was diagnosed with cirrhosis in 2007. i finished 48 weeks of treatment 3 weeks ago. at the end-of-treatment talk, one of the docs said that if i do relapse all is not lost because a more powerful drug will be available in 18 months.
many blessings
eric
i was diagnosed with cirrhosis in 2007. i finished 48 weeks of treatment 3 weeks ago. at the end-of-treatment talk, one of the docs said that if i do relapse all is not lost because a more powerful drug will be available in 18 months.
many blessings
eric
This broke my heart, to read, Bee
You have learned a great deal from this experience, and you are all the wiser for it.
The new PI's are causing hemolytic anemia in so many of us.
I think your Doctor was looking out for your over-all health.
Do you have any plans to have a biopsy done? There is a good chance that your liver is in good shape, and it may make you feel better, to know what the tissue in your liver looks like, the procedure did make me feel better, just so there was no mystery involved.
You are doing a great job, taking care of yourself, and hopefully we will not all have to play this Russian Roulette game, with our Tx's, next time around, in a few years to come. It will be nice to have a cure that is 100% effective, in from what I understand, that cure is right around the corner.
Stay strong, you have such a beautiful spirit, which shines thru,
on this Forum~
You have learned a great deal from this experience, and you are all the wiser for it.
The new PI's are causing hemolytic anemia in so many of us.
I think your Doctor was looking out for your over-all health.
Do you have any plans to have a biopsy done? There is a good chance that your liver is in good shape, and it may make you feel better, to know what the tissue in your liver looks like, the procedure did make me feel better, just so there was no mystery involved.
You are doing a great job, taking care of yourself, and hopefully we will not all have to play this Russian Roulette game, with our Tx's, next time around, in a few years to come. It will be nice to have a cure that is 100% effective, in from what I understand, that cure is right around the corner.
Stay strong, you have such a beautiful spirit, which shines thru,
on this Forum~
Hello Cyber People,
It is such a help that you can identify with this "temporary" shock. Thank you all so, so much for your kind comments. This would bring me to tears, but I'm on Zoloft and I can't seem to cry while I'm on it. A good and bad thing.
I never had a liver biopsy, as Idyllic mentioned (thanks!) above. Correct me if I am wrong....I believe at some point I was told that the docs could tell from comparing my labs whether a biopsy was absolutely necessary. Don't remember. All I know is that I refused to do it, and by the time I did consent, I had already agreed to treat, so we didn't do one. I did ask my (new) doc if I would need one in the future, and again -- if I understood correctly -- not unless some abnormal fluctuation. Regardless, everyone's situation is different, private and there are a lot of decisions to be made, through a large part of this process.
My docs took the best care of me they knew how. Do I think the reductions had something to do with me not reaching SVR?? Maybe. But, according to protocol, I achieved UND at the right weeks, which made my treatment time only 6 months instead of 12.
The result saddens me greatly, but I move forward knowing that many of you made it thru more than once. I doubt that I will be running out in 2014/15 and be one of the 1st to treat with the approved new meds. Only time will tell which path I will take. So many of you reached SVR, so I am not blaming the drugs. They seemed to be doing what they were supposed to do -- fighting!! Ultimately, they lost this battle but not the war.
Grateful for each of you listening to me ramble. It's part of the process.
Hugs,
Bee :0/
It is such a help that you can identify with this "temporary" shock. Thank you all so, so much for your kind comments. This would bring me to tears, but I'm on Zoloft and I can't seem to cry while I'm on it. A good and bad thing.
I never had a liver biopsy, as Idyllic mentioned (thanks!) above. Correct me if I am wrong....I believe at some point I was told that the docs could tell from comparing my labs whether a biopsy was absolutely necessary. Don't remember. All I know is that I refused to do it, and by the time I did consent, I had already agreed to treat, so we didn't do one. I did ask my (new) doc if I would need one in the future, and again -- if I understood correctly -- not unless some abnormal fluctuation. Regardless, everyone's situation is different, private and there are a lot of decisions to be made, through a large part of this process.
My docs took the best care of me they knew how. Do I think the reductions had something to do with me not reaching SVR?? Maybe. But, according to protocol, I achieved UND at the right weeks, which made my treatment time only 6 months instead of 12.
The result saddens me greatly, but I move forward knowing that many of you made it thru more than once. I doubt that I will be running out in 2014/15 and be one of the 1st to treat with the approved new meds. Only time will tell which path I will take. So many of you reached SVR, so I am not blaming the drugs. They seemed to be doing what they were supposed to do -- fighting!! Ultimately, they lost this battle but not the war.
Grateful for each of you listening to me ramble. It's part of the process.
Hugs,
Bee :0/
Oh BB-I am so sorry to hear this and your battle wasn't in vain. You have recd a gift of time and I will pray for you, as I pray for myself and others. I'm 1 month awayfrom my 6month VL/labs to see if I SVR. I don;t know what to say but Hector says it best. God Bless. BTW-I lurk here but don't really know too many people so I'm silently rooting you all on.
Oh, no! I'm so sorry Bee. I really thought that you had made it, too. Hope that it is some comfort that there are better therapies around the corner. Sending hugs from So. California.
Oh Bee, I am so very sorry. I stare at your post and know that my words will be inadequate. So I am sending cyber hugs and prayers to you.
A very sad thing to hear, I'm sure every one that has done treatment feels your pain . I know I'm only on week 20 of 48 with Vic and that possibility crosses my mind to often. Like everyone says there are more options coming. You gave your liver a hard earned break but I'm sure you will beready for the next round. Bless you and good luck. Ray
I think one of the more experience members of the Forum, can do a better job at addressing your question, concerning your need for a biopsy~
My personal story is; I've known I have had Hep C, for 23 years, and didn't have a biopsy, until last yeaqr, when I was 49 yrs old.
I had my biopsy because my Labs suddenly changed for the worse, and became "out of range". Like, for instance, my platelets dropped below normal, which is a warning sign.
If you have a knowledgable Hepatologist, they can tell an awful lot about how your liver is functioning, from these blood tests. I am glad your labs are all still normal. And I am glad that we have a place where we can talk about this stuff with each-other, and we all understand the kind of shock and stress that this treatment entails.
My personal story is; I've known I have had Hep C, for 23 years, and didn't have a biopsy, until last yeaqr, when I was 49 yrs old.
I had my biopsy because my Labs suddenly changed for the worse, and became "out of range". Like, for instance, my platelets dropped below normal, which is a warning sign.
If you have a knowledgable Hepatologist, they can tell an awful lot about how your liver is functioning, from these blood tests. I am glad your labs are all still normal. And I am glad that we have a place where we can talk about this stuff with each-other, and we all understand the kind of shock and stress that this treatment entails.
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