Author Topic: Relasped (Read 29258 times)

crysmel · « **on:** January 08, 2015, 07:38:08 pm »

3 month blood work and my Hep C is back, am very disappointed, wonder what the % is? I was on S/O. I can not remember my viral load but it was pretty high. not sure I will do anything else. Just trying to get my head around all this.

petra · « **Reply #1 on:** January 08, 2015, 08:42:34 pm »

Crysmel,

I know that time will take the edge of this hard news. Everyone here as imagined being in your position and will hurt right along with you. Grieve and rest and then when you find the strength to regroup you have the alternative of Harvoni now.

I will be thinking of you,
Petra

badbradley · « **Reply #2 on:** January 08, 2015, 09:48:38 pm »

Irene,
Sorry to hear you've relapsed. It's definitely a dose of reality. I hope for you a better treatment and successful outcome. Sad news, thoughts are with you!
Brad

Mike · « **Reply #3 on:** January 08, 2015, 09:54:05 pm »

Sorry this happened Crysmel.

I know you're bummed out There's lot's of new things around the corner.

You're in my thoughts and prayers, Mike

kate0b1 · « **Reply #4 on:** January 09, 2015, 06:40:28 am »

oh I'm so sorry for you, its a tough day to hear that, let your body and mind heal for now then regroup. There is so much new stuff here/coming.

crysmel · « **Reply #5 on:** January 09, 2015, 08:33:21 am »

Thank all for the encouragement, I am 72 and was hoping I would have a few years of a better life than what I have had. Yes it is disappointing, and a bummer and yes I am depressed.
I have Cirrhosis and wonder if that is the reason it did not work.

Doluska · « **Reply #6 on:** January 09, 2015, 07:01:31 pm »

Sorry to hear sad news, I am on S/O, in 1 week finishing my 12 weeks and so frightened ! Don't know, should I treat another 12 weeks with Harvoni. Should I wait and see? My head is spinning. I know, that I will continue to fight, if I will relapse. Hurd to get disappointed after 12 weeks of waiting....Be strong and do not stop! Fight back, we have resources now! Keep your thoughts positive, make a plan and continue treatment! D

Red Hen · « **Reply #7 on:** January 09, 2015, 08:09:08 pm »

That is sad news. Sending you wishes for strength in this hard time. Wait awhile. Think about trying one of the new drugs that are being approved almost every month. But, don't blame yourself. Not every treatment is successful.

sunrise · « **Reply #8 on:** January 09, 2015, 10:34:07 pm »

Dear Crysmel
I am so sad this has happened, but the bright side is there is harvoni, and even better DAAs being produced as we speak. I myself have finisbed S/O Dec 21. My labs are UD but waiting for 4 ans 12 week post tx tests. I think I can honestly tell you I understand, and support you emotionally. I was told by my doctor that chirrotic livers do not respond as well with shorter txs. Probably want to dixuss with your doc 24 week harvoni as that is new guildlines for your situation. Take a nice bath take deep breaths and know there are more options... Blessings Sunrise

BattleTheBeast · « **Reply #9 on:** January 10, 2015, 01:52:00 am »

Crysmel,

First off, I am so so sorry you relapsed.

Just because you are 72 it doesn't mean you should keep pushing to beat this creep. I have been on S/O and now on Harvoni and I can promise you that Harvoni is much easier than the S/O combo for me. I've had minimal if any sides since on Harvoni and even the depression I felt when I was on S/O is almost gone now. It's been 5 weeks today since I switched.

Remember that they do know more every month about how long we should be on the treatment and what will work with the highest % of SVR. Today, if you had been prescribed S/O it would have been for 24 weeks not the 12 you got.

More and more medications will be approved this year and you deserve to be HEP C free like all of us.

Mel

crysmel · « **Reply #10 on:** January 10, 2015, 02:18:45 am »

Thanks everyone for the support and suggestions, right now I have to take some time off and not think about another treatment. I am doing my research on the new drug and will make a decision after I have some surgery I am going scheduled for in Feb.

trapper · « **Reply #11 on:** January 10, 2015, 11:11:13 am »

crysmel sorry to hear you relaspsed on s/o. Its one of my fears right now. I have 3 more days of 12 weeks on s/o treatment. I got approved on the previous protocol which called for 12 week treatment. I'm f3 with chirosis, high viral load, which now calls for 24 weeks of s/o treatment. I was undected at week 4, at week 8 they took blood but didn't do viral load. Went back to dr and asked him about it, and he didn't think it was anything to worry about. I tolk him I wanted to get it done to see because i'v heard of people being undetected at 4 weeks and relapse at 8 weeks, so I'm waiting for results. I've heard that if you are undected at 4 weeks its a 94% chance you will be cured post treatment in clinical trials. Seems that 94% is reduced some out in the real world of treatment with s/o for someone in my condition. My thing with it is I don't want to relaspse and if they call for 12 more weeks, I want to make sure I get rid of this crap. I asked him how bad s/o treatment is on your body and organs and he said it shouldn't hurt anything but don't cause long term effects are not known. If I relaspe then I will have to fight with ins co. to approve another treatment. Even if I put in for another 12 weeks of s/o I don't know if they will approve it for being undected at 4 weeks. My 8 week labs were good but no viral load till Monday the 12th. Dr says I will be undected at 8 weeks but ordered test for piece of mind. I hope I'm undected.
crysmel. did you miss any doses of s/o while on treatment cause that may cause relapse? Don't give up. You are not to old to keep trying. Good luck Trapper

BattleTheBeast · « **Reply #12 on:** January 10, 2015, 01:08:14 pm »

Hey Trapper,

It's only your starting viral load that counts so I would ask for the extra weeks if that's the new protocol that matches your numbers and fibrosis level. Many of the people on 24 weeks showed Undetected at 4 weeks but they are still getting 24.

If it was me I would try and fight for it now before you run out, get on the phone and make some noise on Monday! Maybe you can get 12 weeks of Harvoni added on.

Either way I will be praying you get that SVR24!

Mel

crysmel · « **Reply #13 on:** January 10, 2015, 04:16:36 pm »

I was undected at a month after I was off the treatment, it showed back up in the 3 month blood work.
No, I did not miss any dosages of the drug. Will have to decide what I am going to do.
Thanks for the responses.
Crysmel

BattleTheBeast · « **Reply #14 on:** January 10, 2015, 05:53:42 pm »

Just sending you a hug crysmel

I am so sorry the treatment failed for you

Mel

Lynn K · « **Reply #15 on:** January 10, 2015, 07:10:08 pm »

Hi Trapper F3 is near cirrhosis F4 is cirrhosis

Fibrosis

Any chronic attack on the liver will cause inflammation, which then leads to the formation of fibrous scar tissue in the liver, creating hepatic fibrosis. This fibrosis is therefore a scarring process that will replace damaged liver cells. The extent of this fibrosis can vary, and it is described in several stages. A normal liver is at a stage between F0 and F1. Stage F2 denotes light fibrosis, and F3 is severe fibrosis. 'Cirrhosis' is defined from stage F4, when scar tissue exists throughout the liver.

http://www.myliverexam.com/en/liver-fibrosis-and-steatosis.html

So that is why 12 weeks should be appropriate for you so no worries OK? You can always ask your doctor about the 12 additional weeks never hurts to ask but that is why you are only prescribed 12 weeks not 24.

When you say UND at 4 weeks and relapsing at 8 are you talking about while on treatment?

Everything I have seen says once you become UND on treatment you will stay that way it is only after you complete treatment you relapse there have been no relapses (breakthrough) while on treatment to the best of my knowledge.

The odds if you are clear at 4 weeks post treatment you are highly likely to stay that way at 12 weeks post treatment.

There is no correlation between 4 week UND while on treatment and remaining that way post treatment.

Crysmel

Hi Crysmel

I also relapsed after treating with Sol Oly March to June 2014. I am a null responder to three tries with interferon based treatments GT 1a with cirrhosis for 7 years now. I was very excited to see I was undetectable at 4 weeks of treatment and my lifer function tests were in normal range that was something I had never seen before since I was diagnosed in 1990 with hep c

I was also, needless to say, sadly disappointed when I relapsed at the 12 week post treatment test in Sept. I did not have a 4 week post test.

I saw in November they changed the recommendation for those with F4 Cirrhosis from 12 weeks to 24 weeks did you treat for 24 weeks? If not that could be why you relapsed. I am currently on Harvoni for 24 weeks just finished week 8 with 16 to go. Trying to have my doctor add Ribavirin to the treatment to give me the best chance at a cure.

Sending a hug to you sister

kate0b1 · « **Reply #16 on:** January 11, 2015, 07:08:22 am »

Lynn, is that an option to take the riba with harvoni? I'm not sure I could do it again, you are a braver woman than I for sure.

kate

sunrise · « **Reply #17 on:** January 11, 2015, 10:11:24 am »

Hi Lynn
Thank you sooo much for sharing your knowledge and experience with us. Its reassuring to hear from a warrior that has been thru the battles. I hope this time you WIN the war!! I will keep you up on my progress with labs. Get my 4 week post tx on the 20th. Sure hope I get my results faster than the eot tests. Sending healing energy.... Sunrise

lporterrn · « **Reply #18 on:** January 11, 2015, 12:05:52 pm »

Hi Crysmel,
Sending a virtual hug along with the compassionate messages others in the Forum sent. When I relapsed (after 48 weeks of PEG + ribavirin), some things that helped me were:
1) The knowledge that I didn't waste my time - my liver got some benefit during treatment - it was a reprieve from HCV's constant assault.
2) I was told that when the virus comes back, it will be exceptionally high for awhile - this is normal and insignificant, so don't freak out - so I didn't freak out.
3) I refused to beat myself up. At first I wondered if I had missed a pill, or if I should not have done ribavirin dose reduction when I was anemic - I was making myself crazy. Finally I told myself that statistically, some people just don't respond, and I was one of them.

In hindsight, I can see other "benefits" from my relapse - benefits that may be too soon for you to see, or you may not have at all. The biggest one was that if I had not relapsed, I would not be here as a fellow traveler - I might have made a career change. I certainly would not have written 2 books about hep C. And most of all, I would not be here shoulder-to-shoulder with you.

Doluska · « **Reply #19 on:** January 11, 2015, 12:19:31 pm »

Thank you, Lucinda! I am so scared of relapsing, analyzing in my head what if??? I will try to remember your words, and look forward with brave attitude. D

BattleTheBeast · « **Reply #20 on:** January 11, 2015, 12:53:34 pm »

Thank you Lucinda,

I think we are all scared of relapse and when I see that someone has it just breaks a little piece of my heart. I know in the past with the previous treatments relapse wasn't as unusual but I think with all the % we keep hearing from the clinical trials perhaps we are a little too confident that these new medications will work, I mean over 90% sure does give me a ton of hope.

I spoke with my ID doc about this and he broke it down for me like this:

1. 100 people are on a treatment that 90% attain SVR which leaves 10 people
2. 10 people are on the next treatment that 90% attain SVR which leaves 1 person
3. 1 person is on the next treatment that 90% attains SVR

Worst case scenario is that I would need to go through 3 treatments and I would attain SVR.

The thing with the cost also makes you realize something, if they are attaining these really high cure rates then Hep C will be a distant memory soon. They have to get as much as they can as fast as they can before that 5 year mark when it's most likely going to be eradicated; it's a hurry up and get as much as we can as fast as we can for the Pharma's.

We are all going to beat this thing, maybe not today but 90% are going to and we need to support the 10% that don't so that they are strong when they go through their next battle. I hope we attain SVR this round and we have a great chance that we will but if we don't I know we have all of these amazing people supporting us.

For me if I am one of the fortunate who attain SVR this time then I will stay and support that 10% who didn't. I'm in it to win it, not just for myself but for all of my fellow warriors.

Mel

P.S. I know most of the clinical results were higher than 90% but I feel like this is a more realistic number now that so many of us are in treatment vs. the small numbers before. I think we will have a much more realistic SVR rate by the end of 2015 and then they will have more new medications for us to use if we need them.

Lynn K · « **Reply #21 on:** January 11, 2015, 11:48:06 pm »

Just wanted to add that Sovaldi Olysio for GT 1 null responder with cirrhosis the 22 people in that cohort (my cohort) was about 84% So small sample size and not quite as high percentage, although 84% is still better than anything I had heard before, probably wont be what is found once more people actually use the meds real world.

kate0b1

They did add riba in some trials and per the AASLD for gt 1a cirrhotics there is an option for 12 weeks harvoni with riba. So how about 12 weeks Harvoni plus 12 weeks Harvoni with riba.

http://s318638489.onlinehome.us/files/aasld2014/

I saw this presentation by Dr's Mark Sulkowski, Nezam H Afhal, K. Rajender Reddy & Fred Poordad. They were presenters at the recent AASLD conference in Boston last fall. They seemed to agree that for a GT 1 cirrhotic to give those patients the best chance to eradicate the Hep C virus would be to throw everything we have at the virus that being Harvoni with Ribavirin assuming the patient would tolerate the Ribavirin part of the treatment.

Given my treatment history and cirrhosis not so much thinking it as the brave choice but the prudent one. I am concerned about running out of options again, and running out of time......

kate0b1 · « **Reply #22 on:** January 12, 2015, 06:15:35 am »

Jezz Im getting paranoid about everything this morning, missing pills, missing the fedex guy and now riba. I could never decide which med was worse, the riba or the interferon. I was on incivike for 12 weeks to start and thought after that it would be manageable. I was so happy to not have to be on either this time, but i guess i see shy they might want to add it in, I'm hoping that the reason i relapsed is because i only made it to 22 weeks last time.
kate

Lynn K · « **Reply #23 on:** January 12, 2015, 07:01:38 am »

Kate

Your case is not mine right?

You don't have cirrhosis is that correct that makes all the difference in the world.

Have faith in the method you will be cured believe it!

sunrise · « **Reply #24 on:** January 12, 2015, 11:42:34 am »

I agree with Lynn
we must have faith no matter how hard it seems. So many days I was OCD about taking my pills. Counting them almost every time to make sure I did not miss a beat. Just be sure that the doctors know what they're doing, and we will beat this thing. Just think a year ago we wouldn't even be in this miracle time. Blessings... Sunrise

Bob V · « **Reply #25 on:** January 12, 2015, 12:22:05 pm »

Crysmel
I'm so sorry, nothing to say but that sucks. You've got some good advice so I won't try and add anything. And yes it's a dose of reality for sure.
Again sorry

kate0b1 · « **Reply #26 on:** January 12, 2015, 06:40:36 pm »

Thanks Lynn and sunrise, Do you think you guys will still be here to help me manage my OCD for 8 more weeks? oh and the 12 week wait for final labs lol. I promise to take up yoga or something, maybe give up coffee.

kate

sunrise · « **Reply #27 on:** January 12, 2015, 07:06:13 pm »

Lol yes Kate
I plan on being around for some time. I would not have gotten thru mt tx without this forum, I'll tell you that. Anytime you need support we are here for you..Blessing...Sunrise

sunrise · « **Reply #28 on:** January 12, 2015, 07:07:19 pm »

Oh and don't worry about coffee, its good for your liver :-)

BattleTheBeast · « **Reply #29 on:** January 12, 2015, 07:11:14 pm »

I think we are all happily stuck with each other. The best thing that came out of me having Hep C was "meeting" all of these amazing people!

I don't know where I'd be today if I didn't have them lifting me back up!

BTW we have some MIA people, where are JillLynn and Rubye?

Mel

sunrise · « **Reply #30 on:** January 12, 2015, 07:26:05 pm »

True Mel haven't seen them online here in awhile. Also im real curious about "just willie g" he's due for his 12 week post tx labs.

BattleTheBeast · « **Reply #31 on:** January 12, 2015, 07:27:15 pm »

Sunrise,

You are right! I think JillLynn is looking at Owls but Where's Willy G? It's kinda quiet without him!

How are you doing sister?

Mel

sunrise · « **Reply #32 on:** January 12, 2015, 07:34:05 pm »

I can't complain, but I will lol. I actually felt crummy this weekend. Tummy issues. I think I am going to stop all pharmacuticals as I feel I don't need them anymore. I slept 2 nights without ambien and my anxiety level is way lower since I finished tx. I feel better today thanks for asking. And you Mel how are you doing? Grandson back at school?

crysmel · « **Reply #33 on:** January 12, 2015, 07:42:58 pm »

My Doctor wants me to do the Havoni-Riba treatment, I have decided to go ahead I feel I have nothing to lose. THe Dr’s office will work on getting me financial aide.

kate0b1 · « **Reply #34 on:** January 12, 2015, 07:46:06 pm »

crysmel, that is the best thing I've read this evening, you go girl

kate

Doluska · « **Reply #35 on:** January 12, 2015, 07:56:33 pm »

Good choice! You will reah SVR, looking forward to hear those news! D

Bob V · « **Reply #36 on:** January 12, 2015, 07:57:36 pm »

Wow Crysmel, good luck!

Long_Haul · « **Reply #37 on:** January 12, 2015, 08:20:55 pm »

Good choice Crysmel. I am on day 11 of Harvoni and Ribavirin I am tired sometimes. having minimal sides. Some occasional fog and one side from Ribavirin is itching. Lotion and lots of water is keeping it minimal.

Good luck with the finances and chin up, you can do it!

AL

sunrise · « **Reply #38 on:** January 12, 2015, 09:36:22 pm »

Best of luck on that Crysmel
I'm glad you decided to go on with your treatment. I hope that you have success with this next one. We're here to cheer you on... Blessings... Sunrise

CE · « **Reply #39 on:** January 12, 2015, 10:25:09 pm »

Good luck, Crysmel! How wonderful that your doc is helping you! I wish you much success! God bless.
Chris

Lynn K · « **Reply #40 on:** January 12, 2015, 11:34:31 pm »

Kate

I am on Harvoni for 24 weeks so I wont even be done with treatment till May 4th with 12 week post EOT not till late July so I expect to be here for quite awhile.

Still waiting to see if I can add ribavirin. My doctors office said they sent it, Express Scripts say they don't have it

kate0b1 · « **Reply #41 on:** January 13, 2015, 06:16:21 am »

@lynn k, good morning, I'm glad/sad that there are so many great people along for the ride with me. Just think though by the middle of summer we will feel amazing. My EOT labs are for june 5th (i already have my ex's for them lol). I love that my doctor has not doubts about this. I am have some trouble with caremark this week, I was only preauthorized for 8 weeks at first, then my doc appealed it (relapser), yesterday i got my 2nd bottle and it said no refills (WTF), when i called they said they did not have a script for the last 4 weeks, even though last week someone called me about my insurance info for it. I am going to call my docs today to see if they can straighten it out, i know i have 28 days to do this but its making me nervous.
kate

Red Hen · « **Reply #42 on:** January 13, 2015, 11:13:23 am »

Crysmel, Good for you to get back in the fight so soon! Sounds like you have a good doctor advocating for you.

crysmel · « **Reply #43 on:** January 13, 2015, 11:55:40 am »

Thanks all, I do have a great team of Dr’s, I like that my Dr. calls me personally and does not leave it up to a nurse or a PA.

CE · « **Reply #44 on:** January 13, 2015, 12:06:00 pm »

I last talked with my LD in September. I have to call for my blood work results, only get to talk to the nurse. Never asks how I feel. My primary doc had me in last week, said he never recieved a letter or report from the LD! I don't think the LD really gives a crap about me. Giant Eagle Specialty Pharmacy calls me every month to set up my med shipment, they always ask how I am doing and if I have any questions for the pharmacist. Thank God for them and this forum, otherwise I would be totally in the dark.

BattleTheBeast · « **Reply #45 on:** January 14, 2015, 08:44:36 pm »

Crismel,

Bless you and your strength! I am so happy you are going to continue to fight the beast and this time you are going to win the battle!

We are all here to help you and each other through this. You are going to beat this and I am so glad you have such a supportive doctor helping you along your journey! I just know before 2015 is over you will be SVR for good!

Mel

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