Relapsed just 6 weeks post tx; don't know how to handle it

[hepcgetlost]

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.

[timlotus]

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

[hepcgetlost]

Hey Ina,
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

[Tallblonde]

This disease isn't going to take you.  It's definitely doing it's best to test you, but it will never take you.  Not you -- you're too strong, Scott.  Hang in there.

Susan

[hepcgetlost]

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.

Much love,
Judi :-)

[bon_vivant]

(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!
:)

[cuteus]

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.

[DRAGON SLAYER]

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,
LOVE.....
Ben

[Tallblonde]

I'm terribly sorry that your battle isn't over.  You're in my prayers this morning.

Susan

[LvdByGod]

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...

http://www.hepatitisneighborhood.com/content/in_the_news/archive_2329.aspx

GATHER COURAGE AND MAKE A WISE DECISION AND PLOW THROUGH THOSE CREEPY BUGS!!! LOOK AT TONYZ STORY BELOW!!! OUR STORY CAN STILL HAVE A HAPPY ENDING TOO...

i am going to be praying for you cause no matter what our resolve, this fall hurts...but we will get up again, i know!

i'm praying for your eventual clearance Judy and sharing your sorrow in this temporary setback, let's look for the rainbow to come out together...ok?

hugs to you Judy,

sandi

[doll face]

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 ***@****.

[jane777]

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.
Jane

[nyhepc]

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,
but rather,
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......

my prayers are with you

lorrie

[ral]

Dear Judi

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.

Take care of yourself and that grandson

With much caring and hope

Bob L

[Tony-z]

Judi

I can only say I know the feeling of hearing the words relapse.
I am at a lost for words right now and will pray that you will be comforted in this time of emotional upheaval.

  The one thing that really helped me both time I relapse was knowledge that the TX had helped my liver and most likely slowed the rate of liver damage.

      On a positive note there are new meds coming out in about 5 years..If you can get into a clinical trail it could be sooner.

Right now you need and deserve a well earned rest.

                 God Bless

                  TonyZ

[artgal]

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.

[carolhab]

I am so sorry, my heart aches to hear this news. It just is so unfair!!!! Please know you are in our thoughts.

[layla]

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

[DonL]

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.

[Califia]

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.

[omyst]

Hi Judi

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.

Bob

[TravelGrl]

I just feel so sad for you right now...what everyone has said pretty much sums it up...never give up and know that you will beat this virus somehow, someway and we will all be right her with you.  

I keep hoping and praying that these newer drugs, protease inhibitors will reach the market sooner than later... there are so many of us that need them.

Keep your head up and know that you WILL get through this.

Best Wishes Always,
Jodi

[Docsgold]

I am so sorry to hear that you relapsed after such a long tx time.  I hope tx has resolved any liver damage you may have had.  My prayers are with you.

[dutch_boy]

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.
Scott

[hepcgetlost]

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.
Much love,
Judi :-)