Relapsed just 6 weeks post tx; don't know how to handle it
Sad and unbelievable, but true. After 72 weeks of tx--53 of which I've enjoyed undetectable status--it's back. I was almost ashamed to post this, because I was so SURE I had beat this darn thing. It's a disappointment, and I haven't figured out how to deal with it emotionally. Since getting off treatment, 7 1/2 weeks ago, I have felt great. except for my sore joints and muscles, which I'm learning to live with. I felt free and happy and so optimistic for the future. I refused to believe that relapse was even a remote possibility. Silly and naive of me, but it was so great to finally start feeling normal again. I don't know how I feel now. On the one hand, I just want to run away from this whole thing and just live my life happily. On the other hand, I feel like the fight isn't over and I have to do everything possible to rid my body of this nasty persistent little bugger. This thing has been living inside me my entire adult life--since I was 20--I'm now 57. I'm sad and angry and I don't know how to handle it. I feel I did everything I possibly could to succeed and here I am, not exactly at square one, but something like that. I wanted SVR so much. Any words of wisdom would be appreciated. Much love to all, Judi.
I Just posted about you to Honey in the down under today & asked her to get in contact with you for me.....
My daughter checked my e-mail for me & said I had recieved a letter from you... said I got some pictures of a very pretty lady, an adorable baby (I am assuming Connor) & a grandaddy ...... I haven't seen them yet but I was stunned to say the least when I heard the news!
DAMN This Virus!
I am so, Soooooo very sorry to hear this & I know how heavy your heart must be... I cried uncontrollably for days & even found myself mad at God... I accussed him of punishing me for lack of faith when I had depended on him to heal me.
I cried like a baby for days.... my last round was such a spiritual, & emotional journey... that I was just devistaed...
I realise that was wrong of me, & that God certainly was not punishing me, & that I was just lashing out... but it dang... that one really hurts...
Sweetie... I will always be here for you... together we'll pick up the pieces & go forward... I know this is not easy... I am only sorry that I wasn't able to contact you earlier...
I'm trying to walk out the door & Rob is getting impatient with me.... but I am gonna take my laptop, & try & find someway to contact you later... still early evening here...
I had a gut feeling you were not holding up to well.... simply because that one is more difficult news to recieve than the shock of the original diagnosis...
Please know that I extend my heart & prayers to you, That I Sincerely Care... & That this is not the end of it...
I know this doesn't help, but I'll be thinking of you this afternoon & saying special prayers that somehow your heart can be lifted to help ease the pain.
I am just so sooo very, very sorry... & it just breaks me heart each & everytime I hear this news from someone... I KNOW how I felt, & I never want any of my fellow heppers to have to experiance what I went thru...
Come in here & talk about it... & I will contact you off board as soon as I can.... Hang in there Judi!
Judi, it's just a delay of your inevitable svr. I am 57 also and have had this disease since my early twenties. I relapsed after a mere 48 weeks of tx. You gave it a serious run. Now you need to rest, recover from the meds and regain your perspective. Life continues and people who reach for life win.You are a winner. The answer of "what next?" will come. My heart is with you. frank
Judi,,,,Frank and Vicki said it so well! I hate to hear this. There shouldn't be a word called "relapse". You have been through so much and you definitely need the break. I'm sure you benefited from the meds all these months so that is a positive thing. Take your time and you know,,,,we are here for you!
Thank all of you so very very much for your kind words and your hard-won wisdom. I am so grateful to have my hepc family here to pour my heart out to. I do need some time to rest and recover and regain my perspective, which is somewhat skewed right now. I wish I could turn my mind off and just not think about this for awhile, but that's just not realistic. When I'm not busy, it's all I can think of. I guess I need to talk it out and this is the best place to do it.
Vicki, I have no words to express my appreciation and gratitude for your loving support. Thank you so much for everything you shared. You've been through so much too. It's so good that we can be here to help each other out.
Frank, I've been away for a while and can't remember if you are now on tx, post tx and whether or not you went back on tx after the 48 weeks. Please tell me your story. I loved what you said: "Judi, it's just a delay of your inevitable svr." I have to think about that, because the idea of going back on treatment now is so completely out of the question; I'm not sure I'll ever be able to commit to that again. Then again, everything changes in life, doesn't it? At some point I might be deranged enough to do it again. (I can be a mighty crazy girl sometimes...) Anyway, I sure do like that you called me a winner and that the answer of "what next?" will come eventually. I believe that too.
And Honey, you're so right...there shouldn't be a word called "relapse." I gave my liver a wonderful gift--an 18 month break from being attacked by the virus. And now I get to have break. I earned it for sure. Thanks for being here.
I am always here for each one of you too. Sending love to you all,
Judi, I'm 1 year post tx from peg-intron/1200mg riba for 48 weeks.Never had a biopsy.I told the doc when I relapsed that I won't treat again-the depression about did me in cause I would'nt take AD's.I'm a recovered/recovering addict and have a problem with any drug that changes my thinking.Unfortunately peg/riba change my thinking too. Since finishing tx I've got my old self back and WILL consider txing again AND taking an AD IF biopsy warrants my treating. If I can wait I will. I'll see the doc july22 and discuss this with him then. You will adjust quickly to no svr YET. It sucks but there is purpose to our struggles beyond our sight. I am as sure of that as I am that you ARE a Winner. frank
Sorry, sorry, sorry. It is with a clumsy and faltering grasp that I reach out to find the words that might ease your pain, but any attempt on my part is likely inadequate under the circumstances you now find yourself in.
I can however say that I am intimately aquainted with your disappointment since receiving news that my husband relapsed. He relapsed after being undectable post treatment for 1 year. I guess he's just one of the unlucky 2% that relapse after the 6 month mark.
I also hesitated to post the news for fear of frightening the others, but in the end my need to be "comforted" won out against my sensibilities and so it was comfort I sought and, comfort I got. This is one place I know for certain where misery does "not" want company and I knew everyone would understand.
I'll say this; I wish you were celebrating, I wish this wasn't so, and I wish that wishing it could make it true. Stay strong.
Judy, i am so sorry to read this. it just makes me cry. i too had a similar sad reality happen to me when i heard i had a viral "breakthrough" (when the hepc came back while i was still on treatment after showing clear for months).
i was so shocked that it just took the breath away from me. i really should have prepared myself better but i hadn't...i know how you are feeling with that angry disapointment, that heart ache... i felt so lost for a while. but i have come through it now...stronger!
we tried so hard! it's just terrible! 72 weeks for you!!! that is a long time to be on treatment like this. i actually never stopped tx after the breakthrough at 7 months, and i have kept going on full dose in hopes of still clearing despite the poor odds.
i did get a reading of clear again so i will try to go off tx this October for the first time, to see if it stays gone after stopping. there is'nt a great chance but it is something. since now it will be a true miracle if i stay clear. i think it's only 15% chance for a breakthrough patient...i hope i'm wrong there. but i'm not one to give up if i still have a chance. we're fighting for a good cause!!!
you know you definately bought yourself some time. it wasn't a total waist because your liver is in alot better shape than it would be in if you had not treated at all. so i hope you can encourage yourself with that knowing that your liver had a nice rest from damage.
perhaps when you're ready, you may consider doing maintainance until you decide what's best for your next step. it is a GOOD THING to be able to slow down or even stop the liver destruction like can be achieved through maintainance...
this is now my stratagy, so i'm not looking at it as a loss to have been on treatment now for a year and a half, two years in October...yuck! if it comes back it will be maintainance for me until God tells me otherwise. I will be listening!!! and let's hope that will be a new treatment that is 100%!!!
i just refuse to let this virus get in there and start killing my liver full blast again. anything is better than that thought for me.
perhaps if you go on full meds for a few weeks until you are undectectable again and then just half the pegasys to keep them there. then you will have time to wait until you feel the strength to go for it again full blast with something new?!?
there is always hope for us i know Judy. we just can't give up...giving up is just not in our dictionary...right? and there will be advancements in treatment for us i know! i am looking at the valadictabine...as well as other hopefulls...
I am truly sorry to hear your news. I know also from experience how devastating it is. Especially when you have tried everything, the extended tx, great attitude, and everything it took to get you through.
I myself, went through a serious depression and was overcome with dread, and doubt that I could do it again. It took so much out of me the first time, and I didn't want to have to go through that twice, But after a week or two I picked myself back up and said let's do it again.It took almost 8 months before I could get started again, but I did.
I'm sorry but I forgot what meds you were on? did you have to take procrit or neupogen?
You need to give yourself some time, then decide what YOU and your doctor think is best for the next step. Whatever that my be, I am behind you. God Bless.
I would love to see that picture of such a beautiful woman, is it posted anywhere? If you need to talk you can reach me at ***@****.
Nothing you can do but feel down for now. It would be abnormal to react otherwise. Treat yourself well, go on a vacation or an adventure if you can. There are many new tx's around the corner. Hold up till then.
i"m not sure this applies here, but i've often found comfort reading this when I"m down.
"life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body,
to slide in broadside, thouroughly used up, totally worn out and loudly proclaiming 'wow, what a ride!!' "
i can only imagine the shock to hear this news. take comfort in knowing that while this virus didn't disappear, you certainly made it's life miserable. they say that God doesn't give us more than we can handle and for the most part i believe that, altho sometimes......
I am so sad and sorry about your devastating news. Please know you are in my thoughts. It is clear that you are a very strong person -- 72 weeks of this treatment and you came out of it feeling good. This strength will carry you forward and one day in the not too distant future SVR will be yours. Not a day goes by for me on this treatment (I'm only at shot # 8), that I do not think of people like you and admire the amazing strength and power of self that you possess to have endured this treatment. You will succeed and hep c will get lost for you. Much love and thoughts your way.
I am at a loss for what to say to you. This is such sad news and gives me a heavy heart today. My thoughts are with you and I am sorry you will continue to have to deal with this terrible disease. At least I hope you will be feeling better being off tx. LL
Sorry to hear about your news. I relapsed 3 months after 48 weeks of tx. I went through pretty much everything you describe. I intend to treat again, but I cannot do it just yet. I have some lingering sx from tx and am trying to appreciate all the good in my life and the good I can do for my family, friends and the world at large. No wisdom for ya, but heartfelt support and wishes for strength.
I am so sorry you have to experience this. I went thru 72 wks also and ended up with the same news. You will as time goes on come to except this and then find the reserve to do what you have to do. I decided to take a break and live a little and and enjoy life.
As a result of all the strain of tx, my emotional ups and downs, our custody battle for our grandson, my Dad's passing away, my wife's parents and my relapse I think it was all my wife could take of my life and me. But we who have this disease have no choice we have to learn to except it and move on.
The yr off tx has been good for me, inspite of what I have been thru and has given me time to recflect on my life. I try to just enjoy the momemt now and now understand more and more what that really means and the true meaning of really living this way.
God Bless you and I hope that He brings peace to your heart.
There is still life to live with or without this disease, I guess how we choose to face our lives is key here.
Words can not express how deeply sad I feel by your news. I've been so emotional since reading this news from you. You have been MY genotype 4 "role model" as I too am a geno 4...so few of us here. I have felt a connection with you since my first posting here when you so beautifully touched me with your kind supporting words.....and now I feel so terribly inadequate to help YOU through your diffictult time. I know how hard you worked for that SVR status....you certainly deserved that peace of mind after all you have been through. I DO know one thing is certain....you are such a strong person and I hope you find some peace of mind knowing you challenged yourself and YOU succeeded through the maze! You are stronger for all you've been through and life's challenges are difficult but we become more incredible for going through these roller coasters of life. I believe you will know what the next step will be for you at the RIGHT TIME. Things have a way of presenting themselves when you need it and are open to it emotionally. You helped your liver by all you have gone through and confirmed just how strong you are by getting through such a long treatment! Taking the time you need to decide what is best for you next is critical. So many above have given you such beautiful words of support and wisdom it would be redundant for me to even try...but one thing is for sure....you have touched so many peoples hearts and you need to know that you are loved and cared for by so many here ......Thank you for all you have done to support others in thier struggles with this Hep C challenge and it is your turn to let all these wonderful people sooth your pain and worries. I will be thinking of you....you still are my "role model" of strength....SVR or not.
Oh my God, Judi. Wisdom? I have absolutely none to offer you. Sometimes it seems that all of human life is an attempt to assign higher meaning to suffering. I don't understand at all why your hard efforts were not rewarded. I do know that it's brutally unfair, and that I wish your terrible struggle with this beast were over. Maybe it's time we all reread the Book of Job, as it is everyone's story. There's such hard comfort to be found in it.
But I do believe that your 72 weeks of treatment were not in vain. The virus may have been so weakened that what's left of it will have only a negligible effect on your future life. Your liver might have been healed considerably, buying you years of time. What I do know with certainty is that you're a real mensch, Judi. And that somehow you will find a way to go on and hold fiercely to life, in all of its aspects. You have all my love.
You may not remember me, but I remember you, a couple of months ago I came to this board very frightened when my ALT shot the roof. I'm now on my third week also genotype 4
You spoke some strong and kind words to me, as I am sure you have said to others who walk this road. Then I could sense your strength as your sicere words reached out and calmed my spirit. I am so sorry you have relapsed, but I know a person like you will find your way through these tough times.
To all of you: Vicki, TonyZ, artgal, scruffy, honey, monte, Debbe, lorrie, sandi, doll face, jane777, chevy, tallblonde, ral (hope I didn't miss anyone, but if I did, it's only because I'm sleepy right now)
All of you wonderful souls have warmed my heart and are making this much easier to bear. I have much to say to each of you individually about the stories you have shared. Now is not the moment, because I need to take a long walk and do some thinking. But in the meantime, dollface, when I get back I'll email you a message with the pics and CHEVY, I have lost your email address. Please send me a message so that I have it again.
Thank you thank you thank you to all,
You have such big hearts and much wisdom to share.
Thanks to you I feel stonger today.
My family & I are emotionally moved by your relapse. No words of wisdom here just unfaltering support for another family member that hasn't responded to Tx. I'm sure that in no time your current disappointment will reverse into an even stronger resolve to beat this beast. I intend to be here when it happens & we'll celebrate your VICTORY in the Sinai along with Britpete as we have planned sometime ago.
Pls stay well & recuperate ASAP.
Best regards to you & your lovely family,
I have not been at the computer too much since Friday, My daughter told me you called and there was an email...I rushed to read it, but the letters that spelled relapse, were not sinking in. They had an evil tone to them, and I could not allow them in my brain. Not you too. Not after so long and so much discomfort and so much finacial hardship, the sacrifice, NOT YOU TOO!
But I guess yes, you. I now envy(sounds crazy) that you have been chosen to extend your personal experience with hep c further than mine, you will be able to reach to others that I can't, understand them better, with more strength and determination, all because your battle has been extended, but not ended.
Your music will offer you solace(do not cancel that event, please) and it will flourish and expand to accomodate the next phase of your battle. You have been chosen to reach a level I will never know.
I wish you were SVR, with all my heart, but someone spiritually higher than us has decided you are needed to travel a different path, reserved for selected few.
At some point, this so called setback will make sense to you.
Rest assured that many are praying for you, and that you are loved dearly.
feel free to call me anytime, even at work.
I'm so moved by every single message from each and every one of you.
Frank, your belief that "...it's just a delay of your inevitable SVR" is so powerful. Like you, I will now take my time to get the best advice and opinions, and do what I need to do when the time is right.
Debbe--your words were not inadequate at all. Thank you so much for sharing your own pain. I went back into the archives and read your post as it was happening and remembered reading it then. You've been through so much, and I appreciate your reaching out to comfort me.
Lorrie, I loved your reading, since that is probably how I will end up...and it certainly is one helluva ride for sure!! Thank you for your prayers too.
Sandi, You and I will both get up from our setbacks. I'm rooting for you and please keep us all posted every step of the way. You are in my prayers too.
Lin, As always, you have found the right words and given me tools that will come in handy as I figure out what to do next. You've given me much in the last year and a half, and I can't adequately express my gratitude that you are part of my family here.
artgal, thanks for the support and encouragement. I hope your tx goes as smoothly as possible and SVR will be yours quickly. Are you doing 24 or 48 weeks?
Layla, You have been such a mentor and support for me and made treatment so much easier to bear. Please don't let your heart be heavy. One way or another, I am going to beat this thing, and I want you to be there cheering for me not only when I reach SVR, but as I go through the hard steps to get there.
Califia, you are quite a mensch yourself!!!! And you have all my love too.
Don't forget-- you said that when I emerge triumphant again, you want me to sing while Chev fiddles and you dance like a wild thing! You're on!!!!!
Scott (dutchboy) and Bob (omyst)--I feel a tremendous connection with both of you too...thank you so much for your beautiful words. I'm sure I don't need to say this but I will anyway: PLEASE DO NOT ASSUME THAT JUST BECAUSE I (another G4) RELAPSED, YOU WILL TOO. Keep up the fight and believe that you will be SVR. I believe I will be too--not just yet, but I will, I'm sure of it. Together we will beat this nasty little bugger.
Jodi (Travelmom) I'm holding my head high and thinking of you!!!
Ben (DRAGON SLAYER), What can I say except I can't wait to be in the Sinai with you and Britpete! How is he doing? I hope you're doing well. My love to you and your wonderful family.
cuteus, I'm touched by your belief and faith in me. You are very wise and nurturing and I'm so lucky to know you. hey...everything you said was great, but that envy thing is just a little over the top, don't you think? But I think I understand what you mean...anyway, I love you!
Vicki (bon vivant) you're absolutely right, this is a very moving thread. All of us have really opened our hearts to each other and it's amazing. I guess you're right. We're special and we are winners in the long run. Well said.
Revenire, docsgold, Donl, tallblonde, Carolhab, I'm so grateful for the prayers, love and words of support.
Gosh I hope I didn't miss anyone, but if I did, know that you are in my heart despite the omission due to my foggy brain.
I am humbled by this outpouring of support and don't know how I can ever let you know how much all your words mean to me. I am blessed to have found this place and all of you.
(someone spiritually higher than us has decided you are needed to travel a different path, reserved for selected few)
That was beautifully put.... That's what I had to come to terms with & accept... it was the only way I could look at it & continue to go forward.
This is a very moving thread....
They say the Good Lord NEVER puts on us more tha we can handle, & those things that don't kill us.... just makes us that much stronger....
Now I wasn't nessicarily convinced about that at the time.... but I went thru so many drastic, emotional, spiritual, & life style changes, That NOW I look at it as a learning curve... & that all these changes were actually a Blessing... so whom was I to question what my higher power had in store for me...
I had lessons to learn, & adjustments to make.... & it just wasn't my time.... It took some spiritual guidance for me to realize that the answer to my prayers were NOT "NO".... but rather a "NOT JUST NOW... Wait, you will become a better person due to your experiances"...
I realize that not everyone has spiritual beliefs, but re-evaluating my Faith is what got "Me Personally" thru those devastating days (when I heard those words none of us ever want to hear) & helped me to make the decission to retreat even if it was against my families wishes...
Judi... it's not easy.... but look at it this way... we are SPECIAL.... & our higher power must have some pretty special plans in our futures! We are not loosers... we are WINNERS in the Long Run!
I'm glad you posted. As I recall, you are doing 2 or 2 1/2 years??? please correct me if I'm wrong. I was told that if I were to treat again, it would have to be for at least 2 years, preferably longer, for any chance at success. I was also advised against it at this point. Taking time to think about all this. Thanks so much for your input and wishing you the best of luck this time!!!! Judi
I am new here (18 weeks into Tx, geno 3a) but I just wanted to post to say how much I feel for you Judi and how sensible the comments seem to me which your friends and yourself have made.
I just want to say something to Scruffy - I am pleased that you may reconsider another go - I know dozens of recovering addicts in the UK (I work in the field) who have had qualms about taking ADs, and some have done without, but I haven't known ANY who did choose to have them relapse to alcohol or other drugs OR have any problem stopping the AD after a few months. Actually you may find that half the normal dose (say 10mg of Citalopram per day) is enough to keep the mood up without sides or any noticeable mood alteration.
Hope this helps
This link may be useful: http://www.markelliot.com/naillness.html#Medication%20in%20Recovery
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