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Hep C Discussion Forum -> On Treatment -> Treatment failed
Post Info TOPIC: Treatment failed
Grniiis


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RE: Treatment failed
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davesf wrote:

Hi Lori, so sorry to hear about the Setback on your journey to SVR.  But that's what it is, a temporary setback.  It's time to take a step back, enjoy the things and people that are important in your life and wait a short couple of years until the new "easy" drugs are ready to go.  That's definitely my master plan if I fail my bloodwork in a couple of weeks.

You're in my thoughts and prayers.  Dave

 Thank you Dave, you are probably right; I dont know how I will feell in a couple years...maybe I'll feel like fighting again but for now I want to do just that...enjoy the people around me. I will keep you in my prayers and thoughts too. Hugs ~Lori



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davesf


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Hi Lori, so sorry to hear about the Setback on your journey to SVR.  But that's what it is, a temporary setback.  It's time to take a step back, enjoy the things and people that are important in your life and wait a short couple of years until the new "easy" drugs are ready to go.  That's definitely my master plan if I fail my bloodwork in a couple of weeks.

You're in my thoughts and prayers.  Dave



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All Done Poisoning the Dragon that Used to Poison Me

Genotype 1b  Incivek Combo
DJ


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I seemed to have read that there are trails or testing on the use of triple therapy with genotypes 2 and 3.  Maybe that is something to consider when are are feeling stronger.  Here is an article:

 

http://gastroenterology.jwatch.org/cgi/content/full/2011/610/1

 

But I don't know anything other than what I have read on the internet and have no idea if insurance would approve it or if doctors would give it a try. 

I am hoping the new drugs come out soon. 



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Genotype 3.  Treatment started on 1/11/2013 with Ribavirin and Pegatron.  Week 4 UND.  Week 12 UND.  Ended treatment on 6/28/2013.  Six months post treatment 12/04/2013 SVR.
Grniiis


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Fajah, One more thing; Good luck to you Sweetie...I will be dropping in on you too to see how it is going. Maybe if it works for you it will give me some hope, you never know it could happen. Many prayers going up for you and hang in there...you have much courage my friend!!!



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DJ


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Thanks Lori.  And I am going to go through with it.  I am just really scared, but I have to try.   I hope you stay around the board and keep us updated on how you are doing. 

 



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Genotype 3.  Treatment started on 1/11/2013 with Ribavirin and Pegatron.  Week 4 UND.  Week 12 UND.  Ended treatment on 6/28/2013.  Six months post treatment 12/04/2013 SVR.
Grniiis


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197856_1316142758990_1693358344_558593_2746157_n.jpgMy first post to Fajah was meant to be for MALANI - Oops

 

For Fajah, Photo was not photoshopped but it is 4 years old...I was 46 there and I am 50 now. My hair is not as long and is still a bit thin but its coming back. The picture attached is last year in February...a bit blurry but still me.

Its not about the time I have left, its about the quality of time I have left. Before treatment I felt like I was 20...after treatment I felt like I was 70 years old...things have mellowed since and I feel pretty good but I still feel older now. As I said before this was a shock to my system but I am not in despair. Just need to talk to people that can identify. If someone worries to much about me I let them know it will be okay and that I am fine but when someone talks to me like I have arthritis instead of a deadly desease it makes really mad...here everyone knows exactly what it is. Thats comforting. Hugs to all of you  

~Lori



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Grniiis


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Hello DJ, You cant not "NOT" do the treatment because your afraid of relapse, Hep C can also kill you. My Mom also had hep c and she died December 9th, 2011...I started looking into treatment when she got so ill and I started my treatment on the same day she died...December 9th, 2011. The doctors did not want me to because of the depression but I already had my kit and was ready...I did not see any reason to stop...I thought the doctors just didnt want me to do treatment because of the expense (Kaiser) They misdiagnosed my Mom and the severity of her liver so I figured they didnt care if I lived either...that was my driving force. You need to try and get rid of the desease and if you have support you will be fine. Yes it sucks but its not impossible. Good luck to you and I will be checking in to see if you went through with it...love and prayers going out for you!

 

~Lori



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Grniiis


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Hi Fajah, I thought I was geno type 3 but I found paperwork that says geno type 2...I am going to ask to be checked again for my genotype because I feel like I had the best chance of success unless I was geno type 1. Anyway Thanks for the encouragement!!



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Cinnamon Girl


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Very sorry to hear this news Lori, and you too, Bev, it`s always so disappointing when tx fails, and I really feel for you both.

Take good care of yourselves and don`t despair...with the promise of much better tx meds coming along your time will come to clear the virus once and for all. 

We`re here for you anytime, don`t forget!  Hugs, from Jill xxx



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
K2


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Hi Lori, a kick in the guts is a fair assessment of what that news would have felt like. Sorry you have to continue facing this "dragon". This site is for everyone dealing with hepc, doing tx or not. Continue to seek support and friendship from the wonderful people here who can empathise with your situation. Chin up chicky.



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genotype 1a. started pegasus and riba on 25/03/2012 added victrelis after 4 weeks, treatment naive. CHC. 4 weeks UND & continue to be so far. Finish tx 6/10/12. Fingers crossed for SVR.
sungoddess


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I just found out on Oct 4th that my treatment was not successful. The virus is back and my viral load is also higher than ever. It is a punch in the gut after all the bs of tx. My heart goes out to you and I wish you well.

Bev



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Geno 1a, VL 289,000 at start of Tx Nov 2/11. Und after 4 wks on Interferon, Ribavirin, and Victrelis, Finished Tx June 25/12. Still und. Virus back Sept 2012 VL over 1 million.

Started Harvoni Sept 22/16. VL 2 million. F score 2.

10/24/16:HCV UNDETECTABLE. Alt 21, Ast 21.

EOT: Dec 14/16  

SVR: May 2017
DJ


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I am so sorry.  Your post was a slap of reality for me.  I am type 3 and am hoping to start treatment next month, and I guess I was so sure it would work that I have forgotten that it may not work.

I thought about you and your situation a lot last night and talked to my husband about it.  I guess we never know.  I hope new treatments come out very soon.  I feel like I am about to start on the path of my worst nightmare and who knows how it will end.

I did read something from someone else who did not respond to treatment and she said that even though it may not have worked you have given your liver a break which may help you stay well enough to be ready for the next line of treatments.

Take Care. 

 



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Genotype 3.  Treatment started on 1/11/2013 with Ribavirin and Pegatron.  Week 4 UND.  Week 12 UND.  Ended treatment on 6/28/2013.  Six months post treatment 12/04/2013 SVR.
Lindsay


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I'm sorry treatment failed for you and that you're having this dental nightmare. I hope that your symptoms will be few and who knows what options will be available in the future. Hang in there!

Lindsay

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Supporter for my fiancee LadyAlaise (Renee).  Where else would I be but beside her on this journey?!?
Fajah


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Grniis,

My first go round was in 04, I was a non responder after 12 weeks they called it a failure, like you with peg/ribo I had a big drop in viral load, not enough to call it a success.  I had never been as conflicted as I was the day the treatment ended, so sick of being sick but scared for the future as HCV is chronic.

This last year I started the Tx with incivek, am at week 18 of 48, the incivek finished 4 weeks ago and am just now feeling half ass-ed again, and believe me half ass-ed is good compared to how I felt during Incivek.  I understand your saying you will not go under treatment again however, unless your picture is photo-shopped or really old, it looks like you have a long life ahead if you can get clear of the HCV.

To me it would come down to the liver biopsy, what stage is you liver at, if you are F2 or low like that, maybe some time off, 1 or 2 years, would be a good thing and a gentle cure may be in the future.

Good luck

 

Fajah



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Fajah You know, the Father, Freaky Deaky Dutch

186,000 miles per second (299,792,458 meters/sec), not just a good idea, its the law.
Suz55


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Hello,

I am Suzanne and new here too. I am so sorry treatment failed for you. I have a similar story only did not stay on the Peg/Ribo as long-WOW, I don't know how ya did it! My retina detached in one eye and clusters of broken boold vessels in the other made laser surgery a must and prohibited any further treatment. I quit speaking to EVERYONE after it failed and am just now coming back to myself. 4 months later and my hair is about gone!

Everyone tells me that new treatments are on their way. Hang in there. I know the frustration of not going on. I would rather-than go blind, was my thinking. Your dental problems sound awful and when your mouth hurts the world hurts. I am sending good thoughts that you find out what is up w/ the tooth. Good luck and some love in your direction may help.

                                                                                                                                                                      Suzanne



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Suzanne Weinstein
Michaele


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Don't dispair, you are in our hearts and in our prayers.  Michaele



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MDodrow
mallani


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Hi Lori, sorry to hear the Rx failed. What a bummer! You say you are Geno 2 but your biography says Geno 3? In any case, the antiproteases like Incivek won't be effective. The newer drugs like GS7977 will be available soon, and you may be able to get on an Interferon-free protocol. Don't despair, the newer treatments have fewer Sx and better SVR rates. Look after yourself. Cheers.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
Grniiis


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disbelief My treatment failed...the sad part is that I had no doubt it Ihep c) was gone due to treatment. I have geno type 2, 140,711 viral load when treatment started adn I cleared 5 weeks into treatment..well I was under 615 4 weeks into treatment and so I think one more shot put me "non detectable although I didnt take another test until the end of the second month. Here it is 5 months after treatment ended and my viral load is 75,000, thats not high for hep c but anything higher then "0" after treatment is too high. I found out I still had it because I had an infection in my mouth...I had gum surgery and it seems there was a root left in a tooth that had a root canal 12 years prior. They cleaned it, cut the infected tissue and did a bone graph to fill in the part of bone that was lost to the infection...I did not lose a tooth and was very happy about that. Two days after the surgery my gum exploded with puss again, blew out the bone graph and my doctor was out of the country. When the periodantal dentist came back he had to do surgery again on my gums and he not only had to remove the bone graph but also more of the bone itself...so now my mouth is disfigured although you cant see it when I smile...he did say if it was still infected he would have to pull the tooth which was starting to make me think he was a butcher. I got nervous at all the bone he was removing and I called my doctor to tell them what was going on and they ordered blood tests...my alt and ast was elevated so they ordered the hep c viral count test... thats when I found out treatment wasn't succesful. What a bummer...those 6 months were hell..I wont do it again and even if I would it most likely wouldnt work...I would have to add the incivik probably and I cant imagine trying to deal with that along with the interferon and Ribaviran (sp?)

Anyway, thought I would stop by and say Hi...seems I cant think of one person I want to talk to other then my Mom but she is dead...then I remembered this site. I only found it the last month of treatment but thought I was done with hep c...guess I am not. I'm sure I'll be back soon...nobody can understand how you feel except someone in the same shoes.

Talk soon!!!



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