Relapsed

[sfbaygirl]

Hi everyone!  Haven't been around for awhile. Between the fire move in and out and being in the hospital twice for internal bleeding, I haven't been here much.  Hope you are all doing well. I found out today that I replapsed. My viral load is 6.5, which I think is high?  I am NOT ready to do this again. The ischemic colitis could have been caused by the interferon, which I stopped at 47 weeks, although I planned on going to 72 weeks due to my not clearing at week 12. I am not sure what to do now.  My energy is pretty low, but I got out of the hospital 2 weeks ago. I am depressed now, of course. I really want to dump my dumb a$$ dr and get the Gish group, but haven[t sent in the appeal to there rejecting from my ins.  I know if I were to do this tx again I would double dose, and do everything full speed, but I really am not ready to get back into it again. I have been so sick since tx that I can hardly go a couple of weeks without something happening. Not sure all of this is related to the hep C or tx. I had the fibroscan which showed stage 1 or 2.  I am 55 and I just don't know what to do. Anyone have some suggestions?  I have been away long enough to forget some stuff and know new things are up and coming. Are there vertex trials for relapsers?  Apprieciate any comments and HI to all my friends from the past and HI to all you newcomers!

LInda

[sfbaygirl]

My bleeds were GI, colitis, not my liver.  I am concerned about retreating given the fact that the bleeds could have been from the Interferon.  Most tx's are with interferon. Do I take a chance this could happen again?  I don't think so. Most likely I need to get another fibroscan, see where I am and if I am not progressing, why tx now.  

I am now at UCSF with the hepatologist in charge...he knows the Gish group well and talks with them regularly.  If I find out about the PI trials, I will let you know.  

Thanks for your concern!
Linda

[merryBe]

were you internally bleeding from your liver or the colitis?
I'd definitely try to clear that kind of stuff up before trying tx again.
You can't afford to have bleeds and leaky bowel during this tx.

If you find out when Gish is doing the PI trials let me know please.
Hang in there!!!
MaryB

[sfbaygirl]

Thanks for the good wishes!  I hope you both have a great new year too!

Kat;  How long have you been off tx?  I lost 30 lbs off of tx...think I gained on tx with all the ice cream I ate.  Yeah, I am tired all the time too. What is your tx plan

Hugs!
Linda

[katerika]

I am currently on a tx. vacation. (call it denial.) I won't see my Dr. again until March. My homework is to lose weight, quit smoking, exercise. duh!  i am fighting to keep off the weight I lost during tx. It feels great not to think about the Hep C and being sooo very tired. My Hemeglobin jumped back to almost normal. I  will start Tx. again & plan to be very agressive with meds.
My only advice is to enjoy today.
Happy New Year to you.
Hugs
Teri

[Myown]

hey sweety,
Just wanted to say hi before I run out the door and also to wish you a Happy New Year. Hoping its a good new year for us all.

Hugs and peace to you too,
MO

[sfbaygirl]

Just read this thread again and was so thrilled to see all my support from you all. It's not often that we find such a great group.  I am amazed rereading this thread all those that were there, and still are, for me.  Thanks and hoping for us all to have a Happy New Year!!!!  Especially all the SVR's

Hugs and Peace for us and the world.
Linda

[Myown]

So sorry to hear this. We're in the same relapse boat. I was supposed to be that geno -2 -0 damage shoe in, but its a cr@p shoot no matter how you look at it. I hope you start to feel better real soon. This disease stinks for sure. You have had a tough ride and you are so strong. I'm a little baby next to most of you guys - even had the 24 week baby course so I have no right complaining. I had a very easy time on tx so though it's crumby to relapse, I shouldn't feel sorry for myself when I see what alot of you guys have gone through.

I know John must be really bummed out. My husband looked like he was going to cry everytime he looked at me when this first happened. I was getting the feeling I wasn't going to svr so I was preparing myself mentally, my husband was 'so positive' I was going to svr, so it was harder on him than it was on me. Then when the relapse happened, I actually felt it. I don't know if you experienced that, but I had night sweats so bad and not just at night, during the day too. I also had alot of numbness in my lips, tongue and hands.Now my tongue just has slight numbness and my hands aren't bothering anywhere near the way they were and the sweating hasn't happened at all for at least a week or so.

I don't know where I will go from here. I'm hoping I don't have cryo. If I don't have cryo, I will probably not treat again and just keep an eye on my liver. Hopefully the fibroscan will be available in the near future. I hope you feel better real soon.

In my prayers.....

[dyce]

Sorry bay girl to hear this!! Haven't browsed thru for a few and I didn't know. Hope the best for ya.

[Valtod]

You can send me a personal message on this forum with your email address. I just left you a message with my email address too.

[sfbaygirl]

  All of you helped me so much!  I know I have forgotten a few,  but I could have never made it through tx without the help from this forum.  Thanks to you all for your posts!  

Terrylee, Andiamo, jmjm530,  child24angel, pretty poisonNoMORE, GrandmaA, , Goldyn, Goofydad, Forseegood, Ladybug52, dancegirl54, Dperry10, FloridaMouse, Mikesimion, Flguy, Zaaaa, Orhanedhawk, Psp-n Me, purplecat, ponshel, debbevadam vtbtre9,  ladywhy, Whastri, I-horn, Ocean Liver, beamishboy, Katerikea, CIRQDUSOLIEL, Tallahassee, BayAreaWoman, Sunspot, Nygir7, CRAZYCANUCK, Tonybuck,  Fishdoc, Valtod, Mremeet, Frijole, and whoever else I forgot,

Thank you all so much for your well wishes on my relapse. I can tell you that you guys and girls have made it so I am not so down as I was and with the support from all of you I feel loved and part of our community. As we all know, it is hard for our family and friends to understand what we go though.  The support I have recieved here is invaluable and I apprieciate it so much!  I know I couldn't have made it through this without all your support and caring.  Newcomers, please take note that this is the BEST rescue drug before, during and after tx. The support from these people and many others.  Thanks so much!

Love to all!
Linda

[sfbaygirl]

Fishdoc!!! I was thinking about you lately woman!!! How are you???  I hope you have cleared and are doing well.  You made this board so fun and happy,  I miss you and glad you responded.  Yeah, what a drag I relapsed. I did sort of expect it after the hospitalization, but sure was hoping for SVR anyway!  Don't be a stranger,  do you have my email?  Still on the other board?  I was so sick post tx, I could hardly lift my head....starting to feel better.  Hope you are doing well. I think of you often...
Love, Linda

Valtod
Of course I remember our shared experiences on tx. What a trip it was, huh?  So sorry to hear of your post tx sides now.  I went through hell for six mos. post, I can only imagine going the 72. Luckily, many of the sx have gone after the six mos post. I know what you mean about not doing tx at all. I have felt the same way at times. Especially since I didn't achieve SVR. I didn't expect to really, since I couldn't continue. Since you did, I think you have a much better chance than I did.In some ways it seemed that the sx after tx were worse for me than tx. I suffered a lot for quite a while afterwards, with NO reward.  You going the full 72 weeks have such a better chance of clearing than I did!  Those awful sx mostly go away....it may take awhile and hopefully none will be permanent.  Going that distance you will most likely get that SVR and that was our goal, huh?  I really feel your pain and can tell you I went through hell and back, but at least yesterday and today, I feel pretty good and am off the fentanyal patches and feel better, not great, but better.  God, there are so many times I wish I had never done tx, but I know that it helped my liver. I try to stay positive about it, as awful as it was and is relapsing.  Not sure I will ever do tx again, but I am not ruling it out.. I wish the best for you and hope you keep me posted on how you are doing in the aftermath of the toxins and torture it was and is, post tx seemed almost harder than tx.  Do you have my email?

Love to you!   Linda

PS.  Please newbies, don't take this as a message to not treat.  I am glad I did, even though I relapsed. My liver benefited from my tx.

[Forseegood]

just so sorry to hear your dealing w/ so much, as you have seen, so I'll only reaterate, many people had soooo many different sides that extended, and they were sure they'd never go away, my friend Ina for example, and many more, but eventually they did clear up...I wish this for you....

[Valtod]

Linda, I'm sorry to hear about your relapse. Probably, you remember you and I started at  approximately the same time, both delayed responders and were supposed to do 72 weeks. You had horrible SX and stopped at 47 weeks... Well, I continued to the 72 weeks finish line with autoimmune SX getting from bad to worse in the last 3 months. Now 3 weeks off Tx, the SX didn't get better, the pain in the liver area really bothers and scares me, fatigue worse than any day during Tx, digestive problems I didn't really have before Tx, I feel my whole body is destroyed, my immune system in disarray and my liver more damaged than before.

If you regret you couldn't continue 6 more months, I start to regret I didn't stop when you did. Or even earlier - when I didn't clear by  week 12. Actually, I wish I never did this second Tx. If I could go back to Feb 2006, when I never had rashes or eczema, or  constant liver pain, or lungs that feel like punctured, and somehow I could get just for 30 min in my post-Tx body today, I'd NEVER start the Tx.

Yesterday my GP sent me for 12 different blood tests to see what's wrong with me. My AST/ALT are increased to the level of week 12 when I still had the virus, the total protein is above normal (for the first time in my life), monocytes and eosinophils are way above the norm, suggesting autoimmune disorder and /or HCV relapse. I'll have the results of my viral load by the end of next week. If it turns out that I've relapsed so fast after being UND for more than a year, in addition to being poisoned to a degree where I don't have any semblance of normal life, I don't think I'll be able to handle it very well. Frankly, I don't see how to deal with this bleak post-Tx reality at all.

During Tx, despite the depression and worsening SX, I was able to push further and further, week after week, only because I  was constantly dreaming about the proverbial "light at the end of the tunnel".  Well, now it seems the tunnel ends up in a meaningless and fractured horror movie of endless torture and body mutilation, directed without a script or sense of purpose and mercy.

So, if it's any consolation, 72 weeks of Tx by no means secure SVR, but for sure bring more severe SX and long-term post-Tx damages.

Val

[fishdoc]

I echo beamers comments.  I'm so sorry this happened to you.  It just seems like considering what we have to endure, we are entitled to be SVR.  One of these days someone needs to have a talk with the woman upstairs.  I truly hope better treatments are around the corner,
consuelo dos gatos (now its 4 cats!!)

[sfbaygirl]

Yes,  I see your point. about the sx vs. SVR.  It seems to work out here, doesn't it?  Won't it be a great day when our odds go up in the SVR department?  Vertex seems to be doing fairly well, perhaps in a few years we will see cocktails like with HIV that at least keep us going much longer. I knew the odds weren't great when I started. I knew the odds were worse when I couldn't extend. The longer we are here, learning about what those studies are the better odds we have I think.  I sure wish the best for you in your decision of which tx you will do.  It does seem like a real live **** shoot, doesn't it?

[Forseegood]

I take your point, but I've seen a whole lot of people with bad sides SVR here, and I just haven't seen a lot of people w/ hardly any sides SVR...I hate to say things like this, because if there are patients out there treating w/ no sides, I sure don't want to predict their fates...cause I can't...I just see things that are interesting...I guess one day soon, most people will SVr, the vast majority, won't that be a happy day!!!!

[sfbaygirl]

And how about us that have horrible sides and relapse?  I agree I have seen many here with no sx and no SVR, but also horrible sx an no SVR.  I guess it is anecdotal as we certainly aren't doing a study here. All I know is I had a 50% chance as a 1a and after no clear at 12 weeks at about 30% chance of SVR going 48 weeks. Has anyone seen a study on sx on tx meaning SVR, I doubt it. But it does seem to play out here a lot of the time.

[Forseegood]

I'm sorry, but I've seen a lot of words which are far more obscene then c-r-a-p go through the censor, that is about the most benign bad word there is!!! WHATEVER!!! LOL...

[Forseegood]

hey guy, I agree w/ you...I try to always think that one person's truth does not make a universal, but hey, we've both been here long enough to make at least some guesses at a possible generality, lol...

over and over again when I hear that someone does not have hardly any side effects all through treatment, i figure uh oh...but I do remember that a few people I've heard of had very few side effects but svred anyway....

even some of my friends, 2Irish for example, relatively very few side effects, didn't SVR...so great, I have to get kicked in the butt, whatever..

.I'm not making this out to be a for sure deal, cause how would i know for sure? the docs and scientists don't seem to know much for certain either...

but I do think there is something interesting there...then of course, inversely, just because you do experience a lot of side effects, doesn't mean you'll SVR either...all a **** shoot unfortunately, prob has a lot do with genetic makeup...

I've mentioned this before a few years ago and got roundly trounced...(it was a rowdier, more aggressive culture back then too)I might of been too emphatic about it, now I'm none too emphatic about anything to do with HCV....be well...

[sfbaygirl]

I remember your first post neighbor!   I love S. Tahoe too, although haven't been for a while.  I felt awful for 6 mos post tx. Only now am I feeling a bit better. So it may be awhile, but you will eventually feel better. Thanks for the nice words, I was glad to be there for you. I am hoping for your SVR!  It is such a rough road, but you made it. Post tx can be really hard, it sure was for me, but I think I am starting to feel the better side of it, thank goodness. Things seem to have gotten better for me, although I never thought they would.  Good luck to you (in gamblng and SVR)  I like craps! When I felt like them I couldn't even play!  Money is tight from not working, but I love South Tahoe and hope to go soon.  

[BayAreaWomen]

I believe my 6 mos PCR is October 24th. Don't  you see a doc in S.F.?
I am so sadden about your situation, you are such a beautiful person. You were the first person that gave me info here. I was so terrified about the TX  in Aug. 2005 when I first signed on here.  You made me fill much better and I thank you for it. Everyone else did too.  Its only been a month since my last shot and taking the riba. I fill so bad and if I am still on the meds. The doc said it takes 2 wks before it all out of your system, but I don't know if that's true. Because I feel the same, just lousy and I told you about the hip surgery.

I in S Lake Tahoe as I write this to you. I love gambling, but I am in the Resort and not at the casinos with my husband. You know I feel lousy.  But enough about me, you are feeling worst and I will keep you in my prayer daily.

[sfbaygirl]

It was great talking to you today. Helped make my day much better. You are a special lady.  That picture is awful.  John wants me to take it down, so I will. He looks so much heavier a few years ago. I am thinking of putting up one of me and my kids soon. My family being so special. They stuck by me and I have not lost a lot of friends, but lost touch with a lot during tx. Looking forward to more days like today.  You helped make it good for me.  Your pic. is great!!

Love ya'
Linda

[sfbaygirl]

So So sorry you relapsed too. Yes, we were close in dates of tx. I always enjoyed interacting with you. I guess we join the relapse club, we were of course had a 50% chance. So much more studies show that that 24 hr, and especially 4 week PCR show whether we should continue or not.....or extend. Now we need to be even more diligent on how we proceed with re-treatment. Perhaps double dosing, Vertex etc.  At least there are options....one of them being nothing. For the moment that is what I am choosing. Maybe I am one of those that dont' progress. Knowing that the trials wouldn't be good for me, b/c I NEED rescue drugs, I most likely will get a BX and wait and see how the Vertex comes out and on the market. Hope you are doing well and not concentrating on the depressing thought about us relapsing.  I had a good day today and am hoping for the best. I hope for the best for you and all of us relapsers.  We are now in a new club, huh?.  

[sfbaygirl]

Yes, I saw Hossini, he agreed with my doc and was friends with him. I wanted more than SOC at that point.  He actually agreed at the end of the appt. to MAYBE extend me due to my knowing more about the cutting edge stuff than he did. Kind of abrasive, but at the end of the visit willing to comply, sort of.   When do you do your 6 mos. PCR?  Hope you get your PCR.  White blood count didn't make me as tired as Red..

Yes, it would be nice to meet for lunch!  Let me know...