Bad News..Relapsed at 6 months

Hi everybody.  I know I haven't added any comments in the forum over the past 6 months, but I've still been reading here almost every day.

Well, yesterday I went for my 6 month doctor visit to find that I had relapsed.  I had prepared myself for either good news or bad news, but I was still shocked to get the bad news.  I was pretty upset and actually forgot to get a copy of my labs from him and never asked what my numbers were (from my January labs)  I guess I was afraid of my voice cracking and possibly starting to cry..so all I could say was a whispered "oh sh*t"  He sent me for more labs after. and I guess I can hold a false hope that maybe the January labs were wrong.;  I guess that's just the optomist in me.

Anyhow..he wants to put me on a year of Riba along with Consensus Interferon which would entail a needle every day for a year.  *heavy sigh*

Is anybody else, or has anybody else been on consensus interferon?  I like to hear the opinions on it if you have.  He said he wants me to wait 6 months (to give me a break)...I don't think he's realized that I have already been off the drugs for 6 months.  Anyway, I'm going to call him today with some questions.

Thanks in advance for anybody with any information they'd like to share.
-Eileen

[dperry10]

I am so sorry to hear this.. Was that the first PCR since finishing ?  or did you do one at 3 mos ?   That option he gave you , was the same one mine told me if I came back positive..   But that was at 3 mos, and I will go again in May., or of course said I could wait for the next best thing, since I was Stage 2/grade 2.   I don't remember what yours was .    That is such a shame.  I was so hoping you would be clear.    Maybe this next one will be and that first one was a false positive. You are in my prayers .....   Keep  in touch.

Dana

[nygirl7]

I wish you had remembered the number just so we could hold out hope it was like a 40 like mine was that time and it was a false positive. Can you call and ask?

I can't remember what geno you are. DebC is on Infergen (Consensus Interferon) she's doing 72 weeks of the stuff. Most of the guys have said it's really hard but she seems to be muddling through giving courage to those who need it.

Find DebC - she will help you.

Elaine, I'm so so so so so sorry. I know it doesn't help and there just aren't the right words to say how much we do mean it.

Debby

[Lady E]

Thanks for your encouragement & info.  I put a call into my doc this morning & he'll be calling me back this afternoon.  I have my question list!!  :)

Deb..yes, I did some research on the Consensus Interferon this morning and it does look like its (72 wks) as you said.  (adding that to my questions list)

all I can say is "ugh"  give me back my oar, I'll be boarding the ship again for another cruise.

[mikesimon]

I'm so sorry about this Eileen. I wish you better results next time. Good luck, Mike

[susan400]

Eileen,

I'm so sorry to hear your news.  I know it just breaks your heart when you get the news.  As you know, I've treated 9 times and I've been through hearing that news, 9 times.  So, I definitely understand how disappointed that you're feeling right now.  There are lot's of news drugs coming down the road.  And there is the Infergen.  I think that you have hope of an SVR sometime down the road, don't give up the fight...., I'm not.

Susan

[Deb_c430]

Hi there,

First I am so sorry to hear it is back, those words are so hard to hear.

I am on Infergen, I started in Nov, with a lower dose, ( I have had a hard time with all the blood counts) my VL actually went up at 4 weeks.

In Jan I started daily dose and in effect started over.  My VL went down 3 logs, so hoping this next one I will be UND, then I will go 72 weeks if my body can take it.

It is a tough treatment, harder than pegasyus I think, but so far it has been doable.

A lot of weird and new sides.   I am really stubborn tho also.  

I know a lot of folks are doing the alinia with peg, riba, but there isn't a lot in on it yet and it is pricey.

Best of luck in what ever you decide.  I do not think there is to many on here doing the infergen.

Deb

[Myown]

Lady E,
So very sorry to hear this. It really stinks to hear a doctor or NP tell us this. I can still remember my PCP telling me , yup, its 87,000. I knew it was back, but I so wanted to be wrong.

I know its hard, but know you are not alone in this and someday we will all be virus free.

wish you the best in whatever you decide,
MO

[anwaar]

I'm sorry for your relapse.  Hopefully, the treatment was kind to your liver and perhaps reversed some damage.  What were the results of your original biopsy?  I hope you're able to wait a long while before having to re-treat to receive a well deserved rest!  How are you feeling physically?  Mentally and emotionally you're obviously distraught.  Looks like you've got a good 'forum family' support - (I'm sorry to read this.)  

[charm27]

Im real upset to hear when someone relapses. I know how disappointed you are.
Please know there is hope and you have that to look forward to.

Again, Im sorry, Im hoping you get it right next time.

Peace

[Forseegood]

I second what Anwaar says, I really hope you can rest a while to come back to fight this another day....

[Deb_c430]

I like that statement so much anwaar!  I feel that even if it didn't make me svr,  it gave my liver a break! That is a blessing!

Deb

[frijole]

I am so sorry.  Having been where you are, all I can say is take it easy.  You have plenty of time to look forward.
frijole

[orphanedhawk]

Oh sheeeet, not you too!
I relapsed and haven't decided what to do about it. I'm taking some on HR's liverlover's supplements and have an appointment with my liverhead in April.
All I can say is, you are far from alone.

Hugs,   OH

[Lady E]

Thank you all for your responses, I don't really know how ANYBODY could get thru these treatments without having such a strong support system as there is here.
You...Me....we're all ROCK STARS!!!  :)

The nurse DID call me back this afternoon, but not with the answers I really wanted to know.  The only thing she could tell me was that my liver function from yesterdays draw was normal. The other info will come in about a week from now. My old nurse (from the first tx) has retired and I'm really going to miss her..she was an angel & so informed and had an answer for all of my questions...oh well.
Anyway, she's sending me my labs from January (my 6 month post tx tests) and I'll figure them out and come back with the info. My old labs from last year are all filed away in a bundle, so reluctantly, I'll dig them back out.  I think I still might be in some kind of denial and can't bring myself to go back to them. When I put them away..I was planning on forgetting about them.

I DO know that I am a 1a geno
and I believe was a stage 1 (at my last bx)

Ok..enough babbling..I need to git. LOL

OHawk.. (my namesake)..I am so sorry for your relapse as well.  I hadn't known about it.
((Big Hugs))
Eileen Ann

[can-do-man]

So sorry about you news, theres no way to prepare to hear those words, its like getting a swiff kick in the gut.

Hope you give yourself some time to recover before starting this again.

Cando

[ladywhy]

There are no words to say...other than I'm sorry and like the others said, hopefully your liver got a break and there is some reversal of damage. It seems you are taking this quite well and that's a good thing. I have been hearing alot of svr regarding infergen. Any route you go...I wish you all the best.
Here's a hug!

Yvonne

[jmjm530]

So very sorry to hear about your relapse. My heart and prayers go out to you in this difficult time.

I don't remember the details of your history, so I'll make this very general.

Daily Infergen (consensus interferon) and Ribavirin is a very difficult treatment. Since you have minimal liver damage (stage 1) I would strongly urge you to get one -- preferably more than one opinion -- before making any decision. Best person(s) to get that opinion from would be a liver specialist (hepatologist) who has no affilliation with your doctor of his hospital.

Again, don't remember your details, but there are other options to consider besides re-treating with Infergen.

One option might be to analyze what went wrong with SOC and make adjustments if weak-points in treatment could be found. Another is to take a look and possibly enroll in one of the newer PI trials like Telaprevir for those like yourself who have relapsed.

And a third, which at least to me seems most reasonable given your stage,  is to go into a "watch and wait" mode -- watching both your liver and what is going on with the newer drugs. As a stage 1 you do have time to wait.

Your doctor says you need a six-month break. Use that six months wisely to evaluate your options, speak to some more doctors and follow the newer trials going on.

All the best,

-- Jim

[Lady E]

Thanks for all of your opinions everybody.  I think I may consider getting another opinion.  Working Dog told me about his doctor in Portland, Maine, and I just may consider seeing him before deciding.

Again...I don't know what I'd do without you guys!

[Tallahassee]

I'm so-so sorry, Lady E... My thoughts and prayers are with you.

But do not give up!

Infergen brings SVRs too -- and these daily shots are not a big deal after all.

Have some rest, work up a treatment plan -- may be add some Alinia to the mix, add more Riba, etc...

All the best!!!

[Trish77]

I certainly don't have any wisdom nor experience to draw upon to offer to you...I do want to wish you good luck with determining your next steps and what is good for YOU.  Take good care of yourself this next while....you've surely earned it and you'll need to gather your mental strength about you once again.

Peace to you and best wishes.

Trish

[FloridaMouse]

I know how gut wrenching hearing the word "relapse" is.  Been there done that.   I'm really sorry.  Good luck to you with whatever you decide.

Mouse

[merlino]

So sorry to hear this - will keep you in my prayers.

[hippygem]

Very sad news, I know how you feel, same happened to me, but you sound like you are looking ahead.  Good luck.

Linda

[Lady E]

Again..thanks to all.  I've decided to get a second opinion and I also have my yearly physical next Monday, so I'll get my GP's opinion as well.  He is very familiar with my history.
Hope everybody has a sparkling day!
-E

[ponyshel]

I am so sorry to hear the news. Give your body a break and wait awhile before retxing. I wish you the best :) shelly

[dlr2007]

I'm so sorry to hear about each of your relapses. I remember both of you from way back and was so hoping you were SVR for good. It seems so unfair- it's such a hard fight and it just seems like everyone should be cured. But it is good that the liver gets a rest.
  Eileen, I also hope you take a nice break before doing another tx. I' also a Stage 1 and not nearly as brave as you- I'm waiting for the new med and hoping the damage doesn't suddenly accelerate.
  Best wishes and prayers to both of you.
Dee

[Lady Lauri]

Just saw this as I popped on (LATE) for a minute.......

I'm SO sorry :(  I hate seeing anyone post  those words :(
  I lean with jmjm's points, stage 1, some really good tx's coming up soon, other options to think of, get advice on. 72 weeks of daily shots, etc. sounds pretty rough. I'm sure you'll research, struggle with your choices and sorry you have to.
  As down as you are right now, do keep in mind those trials, triple therapys, shorter tx's coming up if you feel you can't go with the 72 weeks tx, in other words with little damage you still have a lot of options and hope.

Just saw your going for 2nd opinions....good!  Planning a new attack should help ease your mind some.

LL

[wyntre9]

there's no other way to say this, E.  that just stinks.  I haven't gotten to the post-TX waiting game jitters and i am not looking forward to it.  FWIW, I understand that just doing TX often improves your liver's health.  I'm a Stage 1, grade 1 as well, but after 65 weeks on TX, once I do get to 72, I doubt I would retreat any time soon in the event that i relapse.

you have a great attitude.  let us know what happens.
wyn

[sfbaygirl]

So sorry to hear this! It's the pits isn't it. I know the tx did help my liver a bit and I went down a stage. I am now on HR's supplement diet too. Hoping to keep that fibrosis low.  Do you think you are going to go on the Infergon? As a stage 1 you may have time to wait for new drugs, of course it isn't easy to wait. Tx was so hard on me, I have to wait!  

Best wishes!  Great to see you!

Linda

[troubleshooter1]

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[l-horn]

So sorry to hear this. Hang in there and stay positive.

[Andiamo1]

I must have missed this when you first posted.  I saw it for the first time just now.

I am very sorry to hear about the relapse.  I know the feeling well, since I treated 8 times.  I did manage to remain at stage 3 for 17 years by treating even though it failed.

So treat yourself well and take a break and have some fun.

eric

[Lady E]

Good morning everybody.  I do have an appt set for a second opinion, I'll be going April 7.

Troubleshooter..thanks for the info on the SCH503034.  I will definately make a note of that and inquire about it.

Andiamo-I had no idea you have treated 8 times. My gosh How can you not give up hope with treating so many times.  Finding out I had relapsed after the 1st time was pretty discouraging to me, and I can barely imagine doing it 8 times.  God bless you!!!

I-horn:  I know that you and I were neck n' neck with our treatments.  I hope that you are remaining UND bud!

I actually thought that my thread was lost somewhere down in the list here, but glad to see that you guys replied to this.  The support in this forum is phenominal!

-Eileen

[Liz50]

I read this post and bawled like a baby. Walrus is halfway done and just had another PCR (still UND) but I guess I am feeling very pessimistic these days....I just felt so bad for you guys and wonder if it will be us posting in 40+ weeks with the same kind of news. Damn this disease that robs us of peace and calm!!!! And I thought post TP was bad. That was a cakewalk compared to this. And I'm just the caregiver. (and a cruddy one at that!!)
Eileen--I will hope for better news with a second try....and I agree, how can some people treat over and over?? I mean, I had 5 pregnancies but at least I GOT something out of the 40 weeks of discomfort!
Liz