Not a good day........ relaped

Hi guys,  Just got the news and it wasn't good.  Before tx --
VL  318,000
geno 2B
stage 0
grade1
UND  12weeks  AST 24  ALT 13
Now, relaped VL - 4 million  HGB 10.8  AST and ALT still low.  Doesn't make sense to me and Doc said can't go to 48 weeks because my HGB couldn't handle it.  He said there is a new drug due out in 2 years or less, that doesn't bring down the HGB and it has been used on HIV.  I was so up set, I didn't ask the name of the new drug or anything else about it.  I guess it wasn't in the cards for me.

Beagle

[jmjm530]

Don't know what to say but sorry. You have been such a trooper and so much support for everyone here. While a very long shot -- given your viral load is back in the millions --  I'd have them re-run the test just in case there was some sort of lab error. I do agree with your doctor that given your problems with hgb (and your zero liver damage) taking a good rest from these drugs makes the most sense. Hopefully, the next generation of drugs will be better and kinder.

All the best.

-- Jim

[azgrl]

I am so sorry to hear about that.  I was keeping up with everything you went through on tx.  I don't even know what to say.  relapsing is our worst fears.  I am truly sorry.

deb in az

[NYgirl]

I can't write right now, I'm just too upset I need to step away.  I wll be back when i get my head around this. I don't know what to say. I just KNEW you were OK.  I mean I KNEW it.

This Geno 2s are LUCKY stuff is the biggest BS I've ever seen.  I mean it looks to ME like it's 80% - 20% that they relapse.

I will be back I have to go.

[mkeela]

YIKES!!!! I AM SO SORRY...how terrible. Prayers for you today...keep your chin up there's a miricle commin' your way! As a fellow 2b, the relapse rate is crazy. I just wish they would study all about this...sometimes I swear my docs don't know anything , but I must trust them (I have a male and female hepatologist team), because they are supposedly the best in town, and I can't afford anyone else etc. etc. Please keep the faith and know you are a very speacial person. Love and hugs to ya, Mkeela.

[KAMO]

I'm so sorry to hear about your relapse.  I don't know much about you and your trials with this stuff, but I do know about relapse.  My thoughts and prayers are with you and I hope the meds that come out next work for you and others in your same situation.

[FlGuy]

Disappointing news Bob. I'd suggest take a couple of days and be bummed out - it's ok. You seemingly have time and with time you'll have options.  I'm glad the hgb is creeping up to near normal for you and I hope you continue to feel better. You are a true nice guy and a gentleman Beagle, you can handle this news and come up again.

[avidreader]

I'm so sorry. I know you went through major life changes to accommodate treatment--it just doesn't seem fair because it isn't. I've been following our posts forwever and I've always enjoyed them. Please enjoy your time off treatment, re-group and don't let it get to you too much. I'll be thinking about you a lot today.

[Algernon]

If love from this community could have cleared your virus, you would be home free.

I am so so sorry.  

I know you'll have to grieve this one for a bit.  But keep your eye on the prize--the people you love and the life you live each day.

Electronic hug to you.  Algie.

[Gonna beat it]

I'm so sorry to hear about your relapse, I think with no liver damage you have plenty of time to wait, your in my prayers take care now!



Diana

[miked]

sorry

[NYgirl]

I can't even begin to know what you are going through and I wish more than ever before that there was SOMETHING I could do. I just knew if I willed it hard enough YOU would make it. I just didn't see this one coming, at all. And I have to feel like if I didn't - wow how much this must have hurt you to find out.

You've been such an incredible support in here.  Such a great friend. Such a spectacular human being you are. You know I had very little faith in "men" when I first joinned this board (having had the ex I did) and in here is where I really learned that there were a lot of loving, caring, decent, wonderful men in the world. You have helped me so very much. And now I sit here thinking "there is nothing I can do for him".

I've never felt so impotent in my life. I am just SO sorry.

Take this time to be bummed out. Thank God at least your liver isn't in very bad condition. Any chance you can see Dr. J?  Maybe do less Riba and add a Vertex for their short course or something for your hemo problem.  If anyone he would have the right discussions.  

HE is the one who told ME about the tremendous geno 2 / 3 relapse rates after all.

Maybe you could help each other out and he if anyone I think he would have the right way to go.

And then maybe I could come down and meet you and Mrs. Beagle over lunch or something.  Since I'll seemingly be on treatment forever and ever....I could make an appt to go see him no sweat ;)

I love you Bob you are a great friend and a wonderful person and I just am rambling but I don't have the magic words.  I sure wish I did.  

Debby

[mikesimon]

I am so damn sorry about this. I relapsed once and my viral load soared to the highest it's ever been and then decreased by half in a matter of one month so I'm thinking that yours will settle down too. It's very encouraging that your liver is in good shape. You'll fight and win another day. Good luck. Mike

[amommy]

NO NO NO!!!!!  This can't be.  I'm so sorry Beagle.  I don't even know what to say to you.  You know that we are all here for you through this.  I have been sticking around this week, looking for your post, and boy did it just knock the wind out of me.  I'm so upset for you.  But, one thing I do know is that you are an amazingly positive strong person beagle, and you WILL beat this.  Your turn is coming.  
Beagle, did you have a 4 week post tx pcr?  I can't remember.  
Anyway, I sure hope you are going to stick around here.  You are so grounded and level headed and such a major, positive contributor to this board.

[Kalio1]

I know there is nothing I can say to help but I am so sorry and I do know the feeling. DO NOT DESPAIR. You can find another doctor who will work with you if that is what you want or you can wait on the PI's. I am sure the treatment did your liver some good so it wasn't a waste. Hang in there, you are such a sweet, supportive man and I just hated hearing this news. Please stay positive! You will find a way to do what is right for you.

[GrandOak]

Sooooo sorry to hear about your relapse.

Personally I kinda know how you must be feeling right about now.  I'm guessing it's much the same as I felt a little over a month ago when I heard that my VL went from 1.8 mil at wk 12 to 2.9 mil at wk 24.  The difference for me is that because of the muck up on my riba reduction by my first doc, my current doc still provided a carrot of hope that we (sh-t what we, I since I'm the one dealing with tx and sx's) would go another 12 wks after regaining the full riba dosage and take it from there.  Especially since I seem to be weathering the usual sx's of the tx.

I realize that words probably aren't enough to comfort you at this point, but take heart in knowing that we are here for you, and some of us may very well also be here with you trying to take heart and hope that help may be forthcoming.

I fully agree with nygirl that the generalizations and catagorizing that is placed upon the Geno and stage aspects of this insidious disease is a load of B as in B, S as in S.

If you happen to find the name of the drug in the pipeline to which you refered, please pass it along as there are others for who it may also hold a ray of hope as well.

Take care and stay connected, if nothing else at least with us here who know and share in your disappointment.

[beamishboy]

Bad bad bad news-sh!t i am speechless,except for expletives.....Flguy said it best,my v humble sympathy alround...

[cigaso]

Beagle,

Sorry about your news. Hey, you've got plenty of company. I'll wait with you for the next wave of tx. Keep your head up and don't worry.

[52TELE]

I like others Beagle , dont know what to say. No one is exempt from the terror. It could be anyone of us , none of us or all of us in the same situation. I'm so sorry it was you.

I wish I could give you a hug.

Mark

[MissMiss]

I am shocked at your news.  You fought this fight so hard, it just makes no sense.  I am so very sorry for you and agree with Algernon.  It just should have worked for you.  Period.  

miss

[anise]

OH NO!!!  I am fighting back tears.....  This is absolutely awful.  I'm incredulous, I can't believe it.  Like Jim said get another pcr done!  This makes no sense.  I am so shaken.

Like nygirl said, she thought you were SVR and so did I.  I am not looking forward to my 3 month post PCR.  At least you have time to wait as you are a 0/1.  Gads, I am a 2/2 :(

[tonybuck]

Sad to here the news. I can't say much from experience of relapes but I feel there is some emotions that you are feeling that are uncomfortable and they must be felt and shared with others, before you begin planning your next journey to success. All my best to you and thankyou for your support.

[Mister beagle bailey]

Thank you all so much, I don't really feel like doing much of anything at the moment and I'm sure others in my shoes will contest.

However, what I don't understand is how did I go from a VL of 318,00 to UND to a 4 million VL and 4 weeks ago my ALT was 13 and my AST 24.  I had a PCR done the day before my 23 shot to make sure I was still UND and I was, if I would have been detectable they would have continued treatment.

The treatment my DR talked about this morning was not the Vertex-950 treatment.  It's something else in the pike and some how connected to HIV treatment.  He said it will be out in 2 years or less.  I just can't believe I didn't ask the name, guess I was in shock over the news.

Has anyone else heard of this type of treatment, having to do with HIV patients?

Beagle

[dyce]

Beagle buddy , the dyce's heart is broken. Your the 1st person on the forum I talked too. There are way too many 2's and 3's relapsing.  Your a long way from any liver damage ,so  you have time too recover and hit it again. Your a heck of a guy bb, hang in there!! Get the ford out and pull some holeshots!!

[can-do-man]

I read this in shock beagle.

Good news is little or no damage. Bad news is, well we all know what that is...... Hang tough, i'm sorry for you buddy.

[Moniker]

Stage 0, grade 1, genotype 2b is still not such a bad position to be in. I was genotype 1a, stage 2, grade3 before my last treatment.

I did monotherapy about ten years ago (interferon, no ribavirin). I relapsed after monotherapy. I finished my second treatment with Pegasys and Ribavirin about three months ago. It can take more than one try.

I think that your doctor is right; there are some new, better treatments coming along. You're doing ok. Enjoy life. You'll beat the dragon yet. I know it.

Bob

[cajunlady]

I just don't know what to say.  I am just lost for words. Can do man said it well, I am in shock.  Well I am sure will battle again.  Until then take the needed break and sort things out.  Your grade and stage are good so you have time for right now.  

You fought so hard, with so many obstacles and always had a good attitude. Helped so many.  I can not even imagine how you feel right now. You and the wife take some time and enjoy life for awhile; get your mind off of things.  

Then, I think NYgirl's suggestions sounded good.  Make an appt. to see her doctor.  Stay Strong things will be alright in the long run.  Stay Positive.

Love Hugs and Kisses
to you and your wife

Lanette

[NYgirl]

WHERE HAVE YOU BEEN?  Beagle has been looking for you for the longest time!

At least we see you!  :)

[Snookmiester]

<strong>DAMN</strong>
I am truely sorry for your disappointing news, and wish you only the best moving forward. This freekin disease is a toss up? Who clears, who doesn't, there's no ryhme or reason!! It's just plain ole luck!!
Good thing is you have no liver damage, so retreating isn't a necessity. I believe your in Florida, so if you want to get an opinion from the UM group, I can direct you to their contact info.

[can-do-man]

says...........This freekin disease is a toss up? Who clears, who doesn't, there's no ryhme or reason!! It's just plain ole luck!!

Snook is so right with this virus. Beagle had a low VL, little damage and geno2. All the studys and all the best hepos would had him clear.

[stangshelly]

I am without words. I feel that its all in the luck of the cards with this disease. I think you are a great inspiration to us all and there is always hope in future...big hug >:)))xoxoxo keep faith you will heal shelly

[goldyn]

im so sorry this happened to you, this up and down ride sure does wear on ones soul, Beagle let there be one set of footprints in the sand for a while and rest your heavy heart and mind, until you feel strong engough to make the decision that is best for you.
                      Blessings for you and your family
                                     Angie

[Mister beagle bailey]

Yes, could you please send me info on the UM group.

Thanks

Beagle

[Magnum]

My heart goes out to you, but having been through this devastating disappointment four times myself, I feel you should not dwell on this but instead keep searching, keep trying. No doubt your doctor is talking about Protease Inhibitors, which will be my last chance. After that, it's in God's hands.

Don't be discouraged while there is always hope. Hope is eternal. There is no doubt in my mind that even if the Protease Inhibitors don't work, there will be something else, possibly somthing better yet.

The good thing now is that the race is on with the pharmaceutical companies to finally come up with a 100% cure. In conjunction with doctor's findings and clinical trials becoming more and more funded and active in different parts of the world, we will wake up one morning in the not too distant future and read this in our local paper "A cure has finally been found for Hepatitis C".

Best of luck and keep fighting...

Magnum

[GoofyDad]

Such a huge dissappointment. As others have said, take some time to come to grips with this new reality. There's no hurry. I'd try to relax for a couple years and watch what unfolds with the new PI drugs.

So sorry for you Beagle.

[cuteus]

oh no! these are not the news I expected to hear!  I did not even give it a thought that you would relapse, not one doubt that you got that SVR! darn!  didn't you have a post tx pcr at wk 4? I thought you did and it was negative?
no sense! all these geno ones reporting SVR and a two relapsing, go figure!
one clever virus this is!

[donAlfonso]

Ah shite, Beagle, that really sucks.  Be good to yourself, let others be good to you.  A luta continua.  Peace, love,

dA

[rochammer]

Mister beagle bailey

Horrible news I am a geno 2 also relapsed I understand the disappointment and pain

My best to you

Rock

[Snookmiester]

Well, the office number I have for UM is [phone]..
That is Schiffs office. He is currently not seeing any new patients, but what I found is that if you truely plead your case, they might slip you through. The person to speak with about getting an appointment with him is Rita. Tell her your story, and see what she can do. If not, I highly recommend Dr. Jeffors. He has more office time so to speak, as Schiff is usually traveling or conducting research. FLguy goes to Jeffors, so if he sees this and knows any better ways to get in to him, he'll probably chime in.
They are currently conducting alot of trials, but as you know, they are one of the leading hepatology centers in the world for second opinions. They can review your labs and history, and set forth the proper plan of action.
I wish the best man, and if there's anything else I can help ya with, just let me know...

[rearfang]

I am so sorry to hear about this bad news. For what its worth, at least your liver is in decent shape. Hopefully that will be a plus in the next treatment. Again, I'm so sorry.

[Forseegood]

Mr. BB, youre such a good, kind man and an example to all here, I like what NYGirl said when she pointed out all the guys with a lot of decency and compassion here, and youre right up there...you always help the board get back to civility and support when it goes astray...I would love to be able to shake your hand...like everyone said, gather your troops and regroup, plan another strategy.....you'll be alright, this is just a setback and I'm certain that you'll find your way...healing vibes to you...

[friole]

Oh, Beagle.  My heart goes out to you.  There are no words -  I was so sure you had this beat.   You are one of the good guys.  I don't know which new drug it would be - time to do some more looking.
kathy

[Myown]

So very sorry. My heart goes out to you. I'm a geno 2 waitng to start treatment. This news is hard. It seems geno 2's aren't as easy as we have been told.

In my prayers...

[merlino]

I am so very sorry to hear this Mr. Beagle. Will keep you in my prayers.

[texas tornado]

So sorry to hear of your news.  I agree with what Jim said about having labs done again, in case there could have been a mistake.

Hang in there.  You're in my prayers.
Kim

[GrandOak]

Ditto what tornado and Jim have suggested on mulligan for labs.

That's the first suggestion my doc had when they seen my HGB has now dropped to 9.3 in yesterdays labs and wondering if Procrit is even working anymore.

[Alady1620]

I'm so sorry.  Don't give up!  Keep researching and perservering.  You'll make it through this.

[neptune235]

Drat!  Really crappy news...so very sorry to hear this.

Sending good thoughts your way...

[miss moneypenny]

I am so sorry to hear you have relapsed, this virus is so infuriating. My tx nurse also says that the new drugs should be ready in the next couple of years, and also mentioned the drug used for HIV - don't know it's name though.

My thoughts are with you, I know from my own bad news this week that it is so disheartening, but I suppose we are the lucky ones, as the new drugs are so close.

Take care

xx

[strator]

Aw man, this is a shocker. There is absolutely no consistency to this dragon. I hope you may come to as peaceful and helpful a decision on this as you have shown to all of us in your posts. I just don't know what to say.
Be Blessed Mr Beags,
Don

[roaming]

Sorry to hear this news. There is also a research group in brandenton I think. Their names are listed on studies for 2 of the new drugs. One being tarvicin (that has a new name now) and I think vx950. I saw it when I looked at the clinical trials being done in florida. I wish you well!!