Virus, virus went away...has come back, but not to STAY! INFERGEN ??????

[shebee]

We had bad news:

After hubby being clear since week 12 >5 copies, the virus has returned.  It is around 300,000.  He was a 2b, so his doctor would only treat him for 24 weeks.  We felt that he needed to be on a bit longer.  

Hubby was dx at 4,2 (cirrhosis), 2b.  His viral account was around 900,000 before tx. He also has a problem with low platelets. (51)

He is going to start infergen 3x a week; the doctor said with ribavirn?  Is anyone else on infergen????

I am so sad; I have had a very hard posting lately.  I just couldn't bear to tell everyone that tx did not work.  WEll, it did...but not well enough.

On top of everything else, hubby was laid off.  We now have 6 months of insurance.  I think that it is going to be hard for hubby to find another job.  Brain fog in his business is NOT an option.  The last months peg "took a toll."


...and our dog is sick, oh yea, and our little daughter.
WHAAAAAAAAAAA!    

Life seems to give us one blow after another.  eh?


Gee, I sm feeling awfully sorry for us right now, with tears streaming down my face.



Ok, before you guys start crying, too.  I will tell you that I always bounce back.  After a cup of coffee, I always feel better...except today, I have already had one and I still feel like shi*.  LOL!  

on the bright side, ....My honey-do list will get done!

I love you all and thanks for just being here.

your,
Shebee

Please pray for us today.

[mikesimon]

That's tough news all around. I think susan400 may be on infergen. Someone is - I'm pretty sure about that. It might be Amanda but I think she may be on double dose peg. Or TravisB - gee my mind is in a fog. Anyway, I hope that things work better this 2nd time around. I know it is hard to start back on this **** again. One step at a time I guess. Good luck. Mike

[Revenire]

Gee, that's tough news. I'm sorry to hear it.

Still, the tx did help his liver and now he will try something different. I've seen things -- can't remember where -- that said studies were going on that showed tx can reverse fibrosis and maybe cirrhosis. HALT-C?? I believe that is one of the current trials going on.

I am praying for you and your family Sheebee. You've always been so UP and POSITIVE.

I think Mike is right: one step at a time, one day at a time.

[scruffy]

Prayers are us 4u. Change is inevitable and you are due for positive change.

[lizzee]

WOW...I FEEL SO BADLY FOR YOU BOTH......HES A 2B..WHATS WITH 2BS GETTING THIS BACK?
I AM SURE THE SECOND TIME AROUND HE WILL KICK THIS DRAGONS A**!
KEEP US INFORMED,
BE WELL,
LIZE

[willing]

sorry about the setbacks - it's gotta be tough. No matter how emotionally prepared you try to be for relapse, it hits hard. At the moment you sound so shell-shocked, it's probably wisest to just lay low for a bit. However, looking forward, your husband's got a couple of aces up his sleeve for his next battle - as a responder, his odds on retreatment will be  better and as a 2 his odd of svr are so high that a slightly more intensive treatment might be all that's needed to get over the top.  

As Indiana reminds us, it's always important to be stylishly dressed for the occasion, so I asked around and found an item  all fashion-conscious relapsers will be wearning this fall (<a href="http://www.pillagedvillage.com/pvonline/ShSometimes.html">shirt</a>

The insurance problem is going to be a hassle, but as Billy has pointed out, there are ways of getting the meds without going though insurance. You've really got to wonder about a health-care system that covers you only  as long as you're well enough to keep working.

[meandhepc]

I just want to say that my heart goes out to you and your family. We are all here for you and Hebee, see what happened? You voiced your pain and here we are, but as the saying goes, Everything happens for a reason, why?!!!!!!! We don't know, but we are all in this together and we will walk beside you and yours. I am in my 11th month of tx, and I had my days, Keep us posted, we really DO CARE.

[fullofhope]

Keep your head up - we are all here for you.  I will say a prayer and keep your husband and family in my thoughts.

[doll face]

My dad was on infergen but I think he was 1a.,not sure but anyways it is a little bit rougher that the once a week shots but he cleared after 12 weeks and is still clear after 2 years.He only was on it for 6 months so hopefully your insurance will be around long enough, if not I would start looking into getting some kind of medical assistance, there should be someone who is willing to help so as not to stop his treatments. Good luck and god bless. We are all praying for your family.

[ts2010]

What a shock this must be.  Everything seemed to be going well.  As some of the others have pointed out, things happen for a reason and we need time to find out what that reason is.

Also pointed out above is the possibility that hubby is a responder so maybe he just needs a little more time on the tx.

As far as the insurance, are you elegible for any type of COBRA benefits?

Be strong for you and your family and may it all work out for the best.

[Galen]

I was so sorry to read your news.  You have always been so positive and cheerful around here.  We are all pulling for you and your husband.

[TravisB]

Hey Shebee:  I am sorry you guys are going through this.  I am 2a and tested clear after 24 weeks only to test positive again two months later.  I know how it is to think you made it and then get gutted like that.  I don't know much about Infergen ( I guess it's in the interferon family right?) but I sure hope it does the trick for him.  He is soooo lucky to have you and I hope he knows it.  Best of luck on round two. Travis

[MajNeni]

Hi, Sheebee,
I'm so sorry to hear of your troubles.  That's a bundle.
Hopefully your little girl and dog will mend fast.  
For Heebee: it seems I read here recently that patients who had a viral response and then relapsed have a very good chance of beating it with more aggressive tx.
Hope you can get COBRA or disability.  If he has to be off work, this might actually work in favor of health recovery right at this time.  Getting laid off is very seldom convenient.  I can remember when "laid off" meant something temporary, and after a slow time people were called back... the good old days.
Best wishes to you and your family.  
Maj Neni

[Sablerae]

Hi Sheebe
Don't feel bad it didn't work for me the first time and I don't know if it is going to work this time. We just have to hang in there and pray things get better. I felt bad when I did not clear the virus after 6 months with the peginteron now Im trying pegasys. So hang in their.......
God Bless
Sablerae

[aaapattie]

Gee girl!  You are certainly having a bad ... hour ... day ... week ... But God can help!  You MUST think positive.  Just wanted you to know our thoughts and prayers are with you.  GOD BLESS YOU AND YOURS!  Pattie

[BillyV102]

That's alot to take in one lump.  I too thought I was healed after 24 weeks.  In my mind I was a little cocky, only to find out type 2's can get a positive like 1's. See if you are eligible
for Cobra insurance or check Roche Pharmaceuticals at www.Rocheusa.com/products/pegasys/index. Once you get on Roche then click on programs and then click on patient assistance. For Schering call 1-888-HEP-2608.  Then ask for Commitment to Care.  Tell them about your problem with no prescription coverage. Both have some questions that you must answer. They are strictly confidential.  Anyway they say they are. It's a little place to start. Remember if you have questions, anyone here will try and help if possible. God bless you and hubby.  Oh yeah also your little daughter and Rover.

[susan400]

I'm so sorry about all you're going through.  Mike Simon mentioned my name above.  I've been on Infergen in the past a few years ago.  I was on high daily dose induction and then after the first month, they switched me to 3 x a week.  I was also on Riba then.  Unfortunately, I did not get a remission, stayed detected the whole time.  But, that's been my story straight along.  I'm on my 5th round of treatment.  Currently, I've had the best viral load drop ever with a very controversial therapy.  I'm on high dose interferon which consists of daily regular interferon shots of 9 mu, plus Riba, plus Peg-Interferon.  I know this sounds extreme, but it's worked better on me than anything else has so far.  That and all the prayers from lots of people!  I sure hope that Infergen works well for you.  Susan400

[madbyron]

I admire your and your husband’s mental toughness in the face of such news. I know everybody on this board was pulling for his success and will continue to do so. COBRA could be the answer to continuing health insurance until he or you get another job that offers coverage. I know it's not cheap, but it's better than shelling the full cost of meds out of pocket. My best thoughts go with you as you persevere through this together.

[harley dude]

I guess we all know the odds when we go into this, I know the best thing to do is think positive, but it's just human nature to always doubt the outcome. I guess if it does happen it won't be a total schock, I'm 2b and still a little skeptical, I keep a positive outlook, but way back in my mind I know it could not go exactly the way I want it. I'm actually preparing myself for that just incase it would happen. Keep your head up, I know it's hard but you still have him and will probably have him for a long - long time to come, make the best of what you have at the present. Good Luck, And God gives a person only as much as he, or she can handle. -- HD

[shebee]

You guys...are the greatest!

No one in our family knows that hubby has hep.  We also chose not to tell any of our friends.  So far for us, that has been a good decision.

Even our kids don't have a clue at this point, so all of you have been my support.  Hubby is a brick wall; I have never seen a man with such a good attitude or one so strong.


I felt ok this morning when I woke up, but now find myself an emotional mess.  LOL!  Here I sat reading your wonderful post.  Then, I started crying again...that is until I saw willing's shirt...then I started laughing hysterically!

So there I was laughing & crying at the same time.

Boy, I look great!   LOL!  



Ok, the dog is better, and has a few month?/years? left.

Our little girl is doing better and temp. is down.
  I took her to the dr. last week, and she was put on another couse of anit-biotics.  She has been having reoccurring unexplained fevers & strange symtoms.  I also requested a hep test...just to make sure.  (I am not really worried about this.)  The doc say, "no way."   However, just to be on the safe side, I insisted on testing.  I wondered if he had hep, if he would insist on testing for his family...just to be on the safe side. ?????


Ok, Good News!!!  

YES we will be elligable for Cobra, so we will have insurance for an additonal 6 months with co-pay.  Last year even with good insurance, we had over 20,000. out of pocket.  If we could just sell my son's cd collection, we could pay for everything!  Including future treatments!



I am feeling much better this morning.  I think?

I couldn't quite decide if I should have vodka or coffee this morning, but opted for coffee first.
I think that I am going to be ok, now.

On the bright side, the tx has really helped hubby's liver.  Before tx, he was looking terrible, and going downhill rapidly.
On tx, he felt horrible, but somewhere along the line, I noticed that he was doing better.  Post tx, he quickly regained muscle mass & a tan (LOL!) and is mentally sharp once again.

I got my resume together yesterday, and am going to work for a while.  Hubby has been working non-stop without a vacation for years.  He needs a rest...at least for a while.

I think it would be in hubby's best interest to start infergen and for him to stay at home for at least the first month.  
If this stuff hits him as hard as the Peg...nobody will hire him anyway. :)

He will be on infergen 3x a week, plus riba. ( I did not realize that they used these together.???)

We spoke frankly to hubby's doc & told him that hubby has 6 months of insurance, so he'd better do everything that he can.

Doctor said that he could just sit back and do nothing.  Ha!  
Yea, at cirrhosis level...he could just sit back and die?  Right?  

He did make an appointment with another doc...which will be happy to see hubby in February of 2004!
This doc will evaluate him for a transplant even though his is no where near needing one.  However, at least the plimanary test will be out of the way AND PAID FOR.  He will also look into trial studies.  The trial studies are great, but with cirrhosis, he does not have the time to take a chance that he will be the one who just gets interferon and nothing else.


Thank you all for your wonder responces & prayers.  Both have made a difference.  The best gift that each of you have given to me is this:  "DON'T STOP TRYING, DON'T GIVE UP."
(that is until you die...LOL!)

Your,
Shebee

[Minttwist]

Sheebee.  I just love you; you are such an inspiration.  My husband and I will we going through this soon.  It's been 2 years and he's still not eligible for tx; I assume he's on the transplant list, and he even gets worse and worse everyday; today he has yellow eyes.  You remember your remark about raising money...selling everything just in order to keep your hubby on tx.  You gave such inspriration and so many ideas that I know that I will be strong and able to pull myself and my hubby through this, and you will be strong as well.  Don't forget I too am on tx going through this (*&^ , but BOTTOM LINE, I'm sorry you have to go through this, but SHEEBEE You Can DO This.  During trouble times (which we know we will have) hang on to these guys online.

[shebee]

This is from my HeBee,

To everyone,

May God Bless you especially.


I will continue to fight the good fight and keep getting up no matter what.  I wish to thank all of you for your support and your kind words and fellowship with my wife.  You don't know how much it means to me...To know that she has someone to talk with.  

It's not for myself that I hurt; it's for my family.  And you are right...everything happens for a reason.  I can't predict God, but I can trust in Him.  All will be revealed in the end.

Much Love,
Mr. Shebee

[simpleman]

A few years ago I was laid-off. I had just bought a new house and had my second daughter and a month later I was out of work. I sure didn't know it at the time but it turned out to be the best thing. I started my own business which I would have never taken the chance of doing if this hadn't happened. Even though things have been hard it has been the best thing for my family. Even the Rolling Stones know you don't always get what you want, but you get what you need. Maybe you can confide in your kids or one good friend so both of you don't have to be a "brick wall". I'll pray for your family,with my family, every day. Good luck.

[BethUK]

Oh Sheebee, I'm so sorry to hear about your hubby's bad news.  How long after he finished treatment did you find out?

You seemed to suffer as much as he did during that 6 months - I remember your posts, they were really from the heart.  We're all here with you and hope this second round will be easier for both of you.

[oldhippiechick67]

Take care, one day at a time, and it was nice to hear the hubby speak up! Good luck in your job search Shebee and glad you found the Cobra will cover you 6 more months!  All for now, just wanted you to know Im thinking and pulling for ya!!  
OHC

[Eyedeas]

i know what it's like to have them say it didn't work.  But all that means is it didn't work THIS TIME.  Hang tough.

By the way, was this a general layoff, or did it have to do with his tx.  You may want to see if there is something you can do with a lawyer.  Talk to one anyway.

Kim

[TravelGrl]

Just want to say how very sorry i am to hear of your hubbys news.  Amanda has been on daily infergen now for almost 4 weeks..I just got in and it is extremely late, so I will fill you in with the details to date tomorrow.  Hang in there! We are all praying for him..
Jodi & Amanda

[kathyf]

Sheebee, I am so sorry to hear about your husband. He was doing so well. Keep that positive attitude of yours going and everything will work out. Like Simpleman said, sometimes these things work out for the best and he'll find a job that's even better than what he had. I am so sad that his Hep is back, but maybe the 3X per week will do it? My thoughts and prayers are with you both.

Kathy

[fatboy]

I'm sorry to learn of the return of this disease to your lives - you do have my prayers.

Infergen 3x a week is a poor option for a relapser. Daily is far superior, 2x daily even better (until their pegylated juice comes out). Higher dose PegIntron 2x a week is a good option. Pegasys for a year is good. Any regimen should be for 1 year at this point.

[fatboy]

There is a lot that can be done do deal with sides. Here's my drug pusher self: ritalin, dextroamphetamine, provigil, synthroid, etc. have been used successfully to augment anti-depression medications AND help with the sluggishness caused by treatment.

[cc2]

I'm so sorry to hear about your hubby and family.  Both of you sound very determine so he needs to continue and he will beat this virus.  I had heard that 2's that have alot of damage should do 48 wks.  Hang in, sending prayers.

[kennedge]

awww ****

really sorry about the news and all.....and there really is a hebee..(you should let him on the computer more often) in fact if he is taking time off he just might get bored enough to join us here...

anyway the bright side is ...we will hear from you alot more now...

thanks for your sunshine

we are all thinking of you guys... wishing you the best

ken

[Jim55]

May the Good Lord keep you and lift you up on high.
My prayers are with you always.

God Bless You, always.

[lizzee]

HI SHEEBEE,
I JUST READ CC2S COMMENTS. I AGREE WITH HER. I AM A 2B.
A STAGE 3, WITH BRIDGING FIBROSIS. I DID 46 WEEKS.
H.M.M.M?
OK...GOOD LUCK.. WE ALL R HERE FOR YOU AND HEEBEE!
BE WELL,
LIZE

[olittle1]

You've been positive and supporting of so many on this forum and a frequent contributor, I'm sorry to hear the news of Heebee's tx results. I also am a 2B. I've been off not quite a month and won't get my first post tx results until mid Sept. Dr. Cecil said if I don't respond he would want me back on tx for a year. That is to disappointing to think about right now. But as they told me at U of M Hosp before I started "this isn't the end of the world", I wasn't so sure, but they were right then, and I suppose they would be right now. I hope that his tx will be effective this time and I would also check out some other tx options/protocols for non-responders and make my own decision how I want to go. Sounds like Infergen is just one option. Which ever way you go I wish you both the best and prayers for you and your family.  Peace. Larry

[whybabe]

Dear Shebee:  DRY THOSE TEARS AND KNOW IT WILL BE OK!!  HE will KILL the dragon! I understand that if the virus doesn't clear that the tx is still helpful, it lessons our chance of cancer, so good things are happening. Hand in thier kid!!!
GOD BLESS!
Deb

[cmurphy]

Dear Shebee and Hebee - I am so sorry to hear your news.  You have been a great support for everyone on this site, so stick with us and give us a chance to give back to you guys.  I hope the next round of tx is a big success.

[shebee]

Thank each and everyone of you.  I am so encouraged by your kind words.  I have finally dried my tears and am ready to fight again.