Aa
I relapsed...now what?
48 weeks of SOC and UND at 12 weeks, Geno 1A, Stage 3 probably 4. I stopped treatment Dec 9 and 2 months after it was back. viral load is 3 mil, my log is 6.5, ast is 80 and alt is 120. platlet count is 76k.
so i guess i'm a responder/relapser. with the problems i had with the anemia (HGB was at 7, and 3 transfusions) they say i should try to get into a trial. to say i am disgusted would be an understatement. all for nothing. i have an appointment with my doctor in april. they told me that a trial for responders/relapsers is underway now, and that they are participating in it....how lucky for me, wow don't i feel special. do i really want to go thru that hell again? boy am i on the fence over that one....this really bites. i was just starting to bounce back; eating, exercising and feeling terrific...now it's back to the procrit and zofran and the other junk....the hardest part was having to tell the kids...that suked.....i find myself just staring at the walls now...(insert funny comment here).....i'm fresh out.
so i guess i'm a responder/relapser. with the problems i had with the anemia (HGB was at 7, and 3 transfusions) they say i should try to get into a trial. to say i am disgusted would be an understatement. all for nothing. i have an appointment with my doctor in april. they told me that a trial for responders/relapsers is underway now, and that they are participating in it....how lucky for me, wow don't i feel special. do i really want to go thru that hell again? boy am i on the fence over that one....this really bites. i was just starting to bounce back; eating, exercising and feeling terrific...now it's back to the procrit and zofran and the other junk....the hardest part was having to tell the kids...that suked.....i find myself just staring at the walls now...(insert funny comment here).....i'm fresh out.
in 2005 i had treatment for hep c i was strain 1 my specialist said i would never relapse as i was a very mild strain even though the treatment nearly killed me within 3 months of my treatment,i took great care of my liver since ( i got hep c through a blood transfusion in 1991 ) in 2009 i was diagnosed with breast cancer which i cant be treated for as full blown chemo would kill me right out,in 2012 i was diagnosed with medium grade emphysema all of my blood test have been good up until the 4.1. 2013 my blood test has come back positive for hep c i am shattered and dont know how i have it again after being cleared of it for 8 years i dont do drugs nor alcohol,the only way i can think i may of got it is from my oldest daughter who has hep c and is a hard drug user by her using my razors and i have used it after her unbeknown to me that she had used it.I am totally in shock that my daughter could do this to her own mother and with not one ounce of guilt its worse than the cancer i dont know what to do as the treatment i had was worse then hell does anyone know when you relapse does it come back worse ? i dont know what to do im so scared of it i dont know who to turn too
Great attitude...
The Dude does Abide and I can only imagine your kids and family are very proud of you for your fighting spirit!!!
Ride On!!!
The Dude does Abide and I can only imagine your kids and family are very proud of you for your fighting spirit!!!
Ride On!!!
i just want to thank everyone that responded. ya know what the best thing is about getting hep c? all of you.....all of you are such good people. it means a lot to me to have you all behind me in this fight....i can't thank you enough. after i get over the shock of this relapse thing i'm sure i'll be able to endure it.
now that my whole family knows about it, i feel quite a bit better.
thank you all for your support...
(((great news micheall on your UND results...you deserve it)))
like Lebowski said, "the dude abides"....and so will I....
now that my whole family knows about it, i feel quite a bit better.
thank you all for your support...
(((great news micheall on your UND results...you deserve it)))
like Lebowski said, "the dude abides"....and so will I....
I've been working long hours and day haven't been on the forum. I am terribly sorry to hear your news. I Hope so much that things will change for you in the future. My deepest sincere positive thoughts are with you.
millie
millie
Just returned from dr appt.I am UND after 3 weeks of stopping 2nd tx.First I was a relapser on peg and rib..2nd on Incevek and complications set in on 11th week.Followup blood test showed UND.Hoping for SVU in 6 mos.I was unaware of the anemia setting in.Had to stop Incevek but lasted long enough to be UND.
I relapsed in '04 after 52 weeks of SOC, it was quite a bummer for a while. I am currently in the Gilead trial, SOC and 2 trial drugs for 24 weeks, then possibly another 24 of SOC after that, depending on response.
I've been reading about all these Incivek side effects, sounds like a horror story. The Gilead trial drugs have almost no sides for me at all, just a bit of drowsiness after I take them. Also, I cleared the virus at 4 weeks and still clear at 19. I didn't clear till 24 weeks the first go round.
I would suggest you look into the Gilead trial, they even pay you $44 a visit. There's also a Gilead trial SOC with 7977 that looks very promising, too
I've been reading about all these Incivek side effects, sounds like a horror story. The Gilead trial drugs have almost no sides for me at all, just a bit of drowsiness after I take them. Also, I cleared the virus at 4 weeks and still clear at 19. I didn't clear till 24 weeks the first go round.
I would suggest you look into the Gilead trial, they even pay you $44 a visit. There's also a Gilead trial SOC with 7977 that looks very promising, too
I am so sorry to hear this. I know it's going to be hard to think of doing more tx but they are really coming out with some great stuff to help kill this virus. hang in there.
Yo Dudeness:
What a bummer. Been there, done that. Treated & relapsed in 2003. Treated & relapsed in 2009. Currently on triple therapy (Incivek) and progressing well.
Lots of people who relapsed are doing well on triple therapy (I know, that may not be much comfort at the moment).
frijole has a chart posted on her profile listing how many of the people on this blog are doing with triple therapy treatment. You might check it out and glean some hope for the future.
http://www.medhelp.org/personal_pages/user/223152
Best, Sentinel
What a bummer. Been there, done that. Treated & relapsed in 2003. Treated & relapsed in 2009. Currently on triple therapy (Incivek) and progressing well.
Lots of people who relapsed are doing well on triple therapy (I know, that may not be much comfort at the moment).
frijole has a chart posted on her profile listing how many of the people on this blog are doing with triple therapy treatment. You might check it out and glean some hope for the future.
http://www.medhelp.org/personal_pages/user/223152
Best, Sentinel
Sorry to hear this, feels like a swift kick in the gut. Please give yourself some time to get over this before you make any future decisions.. Hang in there, trust me it will get better.
That really su*** big time. Like everyone else, just so sorry to hear this.
I relapsed twice myself after 2 - full 48wk attempts.I know the feeling. I'm on attempt #3 now. Maybe a little time off to regroup would be an option for you.
Best of Luck with your decision, and next move.
Gene
I relapsed twice myself after 2 - full 48wk attempts.I know the feeling. I'm on attempt #3 now. Maybe a little time off to regroup would be an option for you.
Best of Luck with your decision, and next move.
Gene
Darn, what everyone hates to see. I am so sorry for you. Today I get my blood draw see if I am UND and I am terrified. All has been said, you are in my thoughts......mo
UncleD I am so sorry to hear that. Take some time off to recover and then plot a way to start again with one of the newer drugs. SOC just never had very good odds attached to it (I know took me 72 weeks) but the newer ones really do.
It ***** either way you look at it, I'm just so very sorry. Hate this.
It ***** either way you look at it, I'm just so very sorry. Hate this.
I am more sorry than I can express here. I remember the same thing happening to me in 2008/09, it was New Years Eve. I know how horrible this can be. At the time I was advised to regroup, wait a year and try again. I said I would never treat again, then I hear about a new trial VX950
The only good thing I can offer is that I just finished the Incivek triple, have beginning cirrhosis and did the tx for 24 weeks. It was very hard but now I feel wonderful after only 3 weeks.
I am so sorry I know the shock, anger disappointment, depression etc.
The only good thing I can offer is that I just finished the Incivek triple, have beginning cirrhosis and did the tx for 24 weeks. It was very hard but now I feel wonderful after only 3 weeks.
I am so sorry I know the shock, anger disappointment, depression etc.
Sorry to hear of your relapse unc, never a good thing to read here.
As has already been said, take some time to recover, re-access and take it one step at a time. When was your last biopsy which determined the stage and grade? If not recent, that might be a good starting point in establishing a new plan for the future, whether approved or under trials. Yes there is a future, and your's would appear to be in need of the least anemia pron tx protocol you can find, ei Incivek would not be my first choice, judging by your first go.
Best of luck..Thursday might be bike riding weather
pro
As has already been said, take some time to recover, re-access and take it one step at a time. When was your last biopsy which determined the stage and grade? If not recent, that might be a good starting point in establishing a new plan for the future, whether approved or under trials. Yes there is a future, and your's would appear to be in need of the least anemia pron tx protocol you can find, ei Incivek would not be my first choice, judging by your first go.
Best of luck..Thursday might be bike riding weather
pro
Man... I really feel for you. It bites big time. Sometime th universe is so unfair.
I'm sorry to hear this.
My husband and I have been through this twice before with failed therapies, and we're waiting for a VL result this week that will determine whether or not he will be able to continue with triple therapy. He is f-4 and was UND at week 8 and week 12, but detected at <12 at week 18. If he's still detected, his hepa will probably recommend that he stop, even though he's not quite at 24 weeks yet.
We're praying, but preparing for the worst. I know he was really, really disappointed at the first two failed treatments, and I know he's really, really worried right now. So am I.
Hang in there. It's very difficult feeling like you've been through all of that and it didn't work.
As a relapser from SOC, your chances are very good with one of the triple therapies. You gave your liver a break while you were on SOC and that helps to slow the progress of liver damage. It's hard, but it's good to treat, when you can (when there are good treatment options available). It helps your liver out and your chances for SVR are better now while your liver is compensated.
Advocate1955
My husband and I have been through this twice before with failed therapies, and we're waiting for a VL result this week that will determine whether or not he will be able to continue with triple therapy. He is f-4 and was UND at week 8 and week 12, but detected at <12 at week 18. If he's still detected, his hepa will probably recommend that he stop, even though he's not quite at 24 weeks yet.
We're praying, but preparing for the worst. I know he was really, really disappointed at the first two failed treatments, and I know he's really, really worried right now. So am I.
Hang in there. It's very difficult feeling like you've been through all of that and it didn't work.
As a relapser from SOC, your chances are very good with one of the triple therapies. You gave your liver a break while you were on SOC and that helps to slow the progress of liver damage. It's hard, but it's good to treat, when you can (when there are good treatment options available). It helps your liver out and your chances for SVR are better now while your liver is compensated.
Advocate1955
I'm very sorry to read this. It is devastating news, to be sure. But you don't have to do anything today. Or tomorrow. Give yourself a chance to get stronger, weigh your options and make a decision when you are in a better place mentally and emotionally.
Hang in there, everyone is pulling for you!
Hang in there, everyone is pulling for you!
It is always disappointing when someone relapses.
However, it is very likely your liver is now in better condition than when you began.
The good thing about this,is it gives you time.
Give yourself time to recoup.
Then see what your options are. The new interferon free oral treatments currently in trial are very exciting.
Don't give up hope. Live your life and go forward.
Good luck.
However, it is very likely your liver is now in better condition than when you began.
The good thing about this,is it gives you time.
Give yourself time to recoup.
Then see what your options are. The new interferon free oral treatments currently in trial are very exciting.
Don't give up hope. Live your life and go forward.
Good luck.
I had the same results after 2 tx's but with a lower vl.I am also a 1a.Hard time with Incevek.Had to stop at week 11.I see my dr tomorrow to get the results of blood test.I am thinking clearer now.I was angry for a while.I am a relapser from the 1st tx.My 2nd the vl level was 750,000.I thought I had a chance at the 2nd at svr.I tripped at the finish line.I feel great right now and will start to practice prevention so I will not give hep to anyone else.I also thought of if anything positive came out of the last 2 years of off and on tx.I feel I did.Lost weight ,lowered my vl and I hope my liver somehow did some recovery.I will know more tomorrow.I will get back to you on that.let me know more about that trial.1a is difficult strain.I weakened it,but I hope tomorrow I did kill it.I have a slew of questions for my dr.I also feel I did 2 tx too close to one another.I should of taken more time off before 2nd tx.
I am very sorry to hear this. I know it must be devastating. As others have said, there are more options now and they have higher rates of cure, so hopefully one of them will work for you. I wish you the very best.
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