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.
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.
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
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."
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.
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!
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.
"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.
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.
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.
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~
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.
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.
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.
Bee, given that you failed Vic leaves you with a mixed bag of emotions, understandably so but the one statement you made: "doubt that I will be running out in 2014/15 and be one of the 1st to treat with the approved new meds" is concerning because even though your blood test are within range regarding liver function it doesn't necessarily mean you don't have advanced liver disease. All my test blood tests that relate to liver function were normal, including liver enzymes and biopsy showed I had advanced liver disease.
In my opinion, I think a biopsy or even a fibroscan would give you the best diagnosis regarding the health of your liver and will be the determining factor as to whether you can wait to treat after the new drugs are released in 2014/15. It may be that you can't wait and if so standing in line to be one of the first to treat may be the wisest thing to do. Again, I'm very sorry you did not succeed this time but there are a lot of good things in the pipeline and one of those new treatments might just have your name on it.
There is no urgency for treatment decisions now so take some time for yourself Bee, eventually the disappointment will wear off, you'll get your groove back on and life will return to whatever the norm is for you.
You fought a good fight Bee, no one can ask for anything more.
Bee, I would like you to consider the advise of Coraggio. I am not trying to interfere in your personal affair or decision but I care for your well being and think it is time for you to get a biopsy after full recovery from tx. As you know blood test result is not a perfect indicator of liver damage.
When I was first diagnosed I had a platelet level of 125,000 (below standard range) and wbc 2.5. When I met with my doctor he said its very likely I have cirrohsis and ordered a biopsy and my biopsy result came out to Grade 1 stage 0-1 knowing that biopsy itself is not always exact we researched further and then I made him aware that I have been a vegan for 18 years, haven't eaten any animal product for that long, so he was able to figure it out.
I think your treatment time decision should be guided by the level of your liver damage, your age and the availability of new and better drug for African Americans. I don't think you rushed the Vic treatment. I think the vic did its job but the interferon was understandably weak. It is my opinion that a good doctor after a clear viral breakthrough at wk12 should have advised for tx extension to 48 wks according to the standard protocol. Breakthrough at wk 12 overrides und at wk 8. So for a doctor to base his decision based on wk 8 instead of wk 12 is still a surprise to me. I am really sad about this news. Sorry if I may have gone a little bit far to vent out but I think about you, I pray for you and I want you to get it right the next time.
Lots of love,
There will be something better coming along very soon for you. I posted in another thread that apparently Gilead saw great data in their 7977+riba trial for AA's. It was through the NIH and it was for 24 weeks. I take note of these things, as I have African American sons.
Going in for oral surgery today, but I'll send you a message in the week. i have the doctor's email at the NIH that was running the trials. A very nice man and would answer your questions.
Don't panic about the liver bx right now. You've been through the war and need to regroup. Keep the faith!!!!
Hey Zako :0)
Appreciate you (and everyone here) looking out for me. With reference to the <43.....my doctor and tx nurse were confident that it was due to the RIBA reduction. At EOT....we discussed this at length, to ensure we understood the correct protocol. Even though I didn't "want" to do 48 weeks, I would have if that was the result. Gotta stand up for my docs and nurses. They really did monitor me closely.
Thanks so much again everyone! I am reading ALL of your responses here, as it helps to hear all sides. As for the biopsy.....once I can exhale again, I will check into it further. But isn't the Fibroscan non-invasive?? I haven't researched yet but I will.
Thanx for sharing with us about your post tx disappointment. I'm really sorry tx didn't work for you. We're all hoping for the best, and everyone here starts to feel like family. So, I hope the future offers you some different results and that you be well in the meantime.
Sorry to hear that you relapsed Bee :o(
As a 3 time relapser myself, I can definitely relate.
It's sounds like from everyone's comments that you did what you were supposed to aand I know that after the shock and disappointment that you will be right back doing what you need to to keep on keepin' on!
Keep your head up and as my doctor says "go live your life" and as John Lennon said "life's what happens to you while your busy making other plans" so don't forget to live it every single day. Don't know about you, but my day starts of much better when I remember to give thanks for another day to fight on.
Today I was walking my 5 yo home from kindergarten and he said "Dad, if you could wish for anything, what would you wish for?" I told hime that's a tough one and he said "well, I know one thing you would wish for, that you weren't so sick and you could play with me more" That brought tears to my eyes because that is one of the things that really bugs me about this disease. But just him saying that, let's me know that he loves me no matter what. Definitely a God moment for me.
Hang tough and stick around because you been through a lot and you have the credability to help the next person to need help!
Dear Bee, you and I started on the same day, you on Vic, me on Inc
I am heartbroken for you. You tried so hard, did everything they told you to. You have been a real trouper.
After I relapsed the first time Dr Dietrich advised me to rest, recuperate my body and soul, wait a year and see what was out there.
Again, I am more sorry than words can say. I am in shock.
bee, I want to tell you how grateful I have been to be on the board when you were here. You have started many threads that have brought out issues that I have had too. You have brought much humor to the board (and I love your VIC raft) and it has been a pleasure to know you.
That said, there are two disturbing sentences in your posts:
...I believe at some point I was told that the docs could tell from comparing my labs whether a biopsy was absolutely necessary
Bee, you know I have early cirrhosis. Yet, my ALT and AST have always been in the 20s. My platelet count exceeds 200. My other labs which might indicate cirrhosis have always been in range. I encourage you to get a biopsy to be informed. Firbroscan? Don't know much about them. Not available in Dallas but maybe you can do one in LA. The biopsy although invasive is just not all that big of a deal.
...Appreciate you (and everyone here) looking out for me. With reference to the <43.....my doctor and tx nurse were confident that it was due to the RIBA reduction
This should have been a giant red flag. If your undetectable status teetered on the edge of detectable and a mere riba reduction could have thrown you into detectable status, I would think your doctors would have changed course at that time.
I am sorry you will have to treat again, my dear. I hope the meds are kinder when that happens.
So sorry to hear of your relapse, hopefully you dont have much damage to your liver and you can wait for something new, dont rush take your time and good things will happen for you. Again very sorry to hear this. Take care of yourself, Chin up....
I just started incivek triple tx but your post broke my heart. I hate hearing this. I'm hoping for the best, but it's never certain for any of us. So heartbreaking for us all.
Thanks for sharing and allowing us to respond to you. All our prayers will stay with you and hopefully give you strength to go through treatment again. I'm not sure if I'm doing 24 or 48 as yet so hoping for 24 but maybe it's a mixed blessing and 48 is best.
thanks again for sharing with us that are also going through what you have been through.
Bee, as Bean mentioned, I feel a kinship with you as I started on September 1st.
I am still in shock over your news. I know from experience it is a hard diagnosis to wrap one's brain around. I know how terrible the news of relapse was for me after the 48 weeks.
I wish there was something I could do other than tell you how sorry I am
I am with you in spirit. Even as I congratulate those with SVR you are always on my mind
Very hard to read this! I couldnt even respond last night.. My prayers are with you! I have been reading your journal and you have been through so much on this treatment. This just isnt fair!!!!
You dont sound like the type of person that will throw in the the towel.
You have been a blessing to me and many others during treatment . I will look forward to reading more from you. Im so glad you are keeping that journal . Keep it going!! When the time comes, The last entry of your journey with HCV will not only say THE END, IT WILL SAY SVR!!
Lot of love to you
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