what a day!

[charm27]

Im Tulips! I had problems getting on with tulips so I am charm 27. Now that Im out of work I figured no sense in waiting till X-mas. I had made dr. appt. and went to U of M today. I was told that I couldnt be in trial because I HAD HEP B years ago and cleared it on my own. Trials will not allow you to have had hepB. I dont have it anymore. Im sort of upset doc told be that if I wait for new drugs to come out in approximately 4 years (which was my decision) I could NOT do SOC now. You cannot do SOC now and then if you relapse at some point you cannot take new drugs in 4 years because you would be immuned and it wouldnt work. In addition  thought when your on SOC the virus stops attacking your liver while on treatment he said that is not true.??
Im starting within 2 weeks I have my blue bag and ready to go. )pegasys and riba.
Im disappointed in that I cant do new drugs in 4 years if this doesnt work. SHould I be thinking of this now? I should just take one week at a time right. Thanks guys & Girls!!!! In addition I know I shouldnt be thinking of relapsinf or being a non-responder since I havent even begun yet. Been a helluva day. Your comments would be appreciated. He also gave me paper work to go to the lab for blood work 2 weeks after starting  tx, 4 weeks and then 6. The lab papers say only that I should be tested for CBC nothing mentioned about VL testing. I have such a tension headache.  lol thanks.

[charm27]

Really?? Im so glad for this forum. I learn everyday.

Thanks your wonderful.
I know everyone tells you that!! hahaha

Hope your doing well.
Be good.

Well now that Im starting tx within 2 weeks..I wont need it for now. Will keep it on the back burner.
BUT WILL DEFINTELY READ THE CLINICAL TRIALS. Have a great weekend. How cool!

[FlGuy]

go to www.clinicaltrials.gov  .  When you get there, in the search area, key in 'hepatitis, miami' (without the quote marks).   Take a look at it every few weeks.  It will give you an idea of some of the trials going on and what it takes to be included or excluded.  It will give you a feel.  You'll see that a wide variety of trials happen at UM.  The fact that you are a patient there means that they'll keep you in mind.  They've called me for a couple, but not the right thing at the right time.   Need to be a little choosey, though.

[charm27]

I was at the hepatololgist yesterday. While I was there he called down to the clinical trial study dept. at U of M. He just told me no can do they wont accept me. However I dont know if that was just for that particualr study or all studies. My labs just show past exposure. I dont have it anymore.
SO MANY IF AND OR BUTS IN THIS ILLNESS. FAR FROM CUT AND DRY.
take care

[PSP-n-Me]

yeah the "reactionary stage" of finding out you have a potential life threatening illness makes us all a bit nuts LOL - I try not to offer too many opinions on here either,but somedays I can't help myself, especailly when "some members"  take out the scare tactics cards regarding treatment - Those of us who have been in treatment know exactly what the sides are - what possible good would it do to text them on a forum full well knowing new people that are scared and looking for some kind of reasurrance come to read...But what do I know - I am just a *dip*  LOL

Hope you're feeling stronger these days

[frijole]

psp -- you are right.  We can really scare ourselves to death over the  side effects we think we will have.  These drugs are not fun but treatment is not absolutely terrible for some of us either.  You are a lot calmer on treatment than you were when you first came on board.  I think we all change.  I used to rattle off reasons to treat no matter what.  Now I don't (except sometimes when it seems appropriate).

charm - I find what you said about having Hep B making you ineligible for hep C trials interesting.  I have never seen that listed as an exclusion in any of the trial recruiting summaries I have read on the net.  I tested reactive for Hep B too.  As my doc explained it, I don't have antibodies -- no immunity -- so it may have been a real mild case.  I don't remember it. I am on one list for research.  Now I wonder if I would be eligible anyway.  
frijoel

[charm27]

since I was sick in 84 I think I went 2 stages in 23 years. Diagnosed in 1992.
(diagnosed in *$with chronIC PERSISTANT HEP.)

[PSP-n-Me]

you went two stages in less than 10 years if I am reading that correctly - that makes perfect sense according to the hypothethical theories - 5 years per stage...

Last bx I was grade 1 stage 1 - and I know when I got infected because it was a blood transfusion  back in 69 - so in 38 years my fibrosis is only 1 so that goes totally against the theory LOL

I think liver damage is non linear - my hep nurse told me about one of patients that was beginning ESLD - on a transplant list and she did 12 weeks of SOC - she had to quit ( but cleared) due to life threatening sides - that was 5 years ago and she is clear of the virus still - and her fibrosis has gone down almost a stage and she is off the TP list - go figure - everyone is different

[charm27]

I was sick 1984 two years bed-ridden- COuldnt even feed myself. Iwas diagnosed at that time as chronic persisent hepatitis. Had biopsy then it showed slight inflammation in 84. In 1992 I was told I had Hep C. Had no idea what the heck it was and the doctors at that point in time didnt know much the test for HepC had just come out I thinkit was 1992. I was got the courage two months ago to go for biopsy it showed 2/2. I start tx in 2 weeks.Im grateful my damage is not severe.
Otherwise healthy no other health problems.

[PSP-n-Me]

how long have you known you have HVC?

Oh I totally agree about getting off the boards - I only spend an hour or so a day on my computer - and most of that time I spend on my graphics...I was falling into the trap of letting the virus become who I am - not a part of me....Not a good thing to do - Hopefuly once my treatment is over, and I am blessed with SVR (praying hard for that) I can back to work, back to my usual routines and put this nightmare behind me...I haven't exercised in 8 months - gosh how miss that...Or spend a day at the beach without worrying I will get cancer from 5 minutes in the sun - (be careful of sun while on tx) or ride my bike, canoeing - how I miss my life -

Better times are ahead for us all - *dip*

[charm27]

ii agree with ALL you have said . Especially digesting everyone's stories trials and tribulations. It can become overwhelming and cause fear. You get a good doc and listen to him.

Sometimes you need to get off the board stop reading and just focus on yourself for awhie. I did that for about 2 years 2 years ago.


We will all get thru this one way or another.
AND YES DRINK DRINK DRINK!!

[PSP-n-Me]

okay I am out of my corner - had to go Pee  hehehe

Digesting information is exhausting - I found out I was HCV active 3 years ago - I had no idea what HCV was back then - so I did a 24/7 research - google was smoking I was on it so often LOL  I spent one year researching and gathering info on the Net, going to all the Hepatitis Forums and Boards, and blogs...I saw several differnt Doctors till I found the right one..It was overwhelming - I found you really really have to take people's own antecdotal stories as just that - If I were to give each of you any advice, which I do not like to do becasue I am not a Doctor, nor am I in the Medical Profession - it would be this :  Find a medical team you are comfortable with, a research team if at all possible - Sounds like Charms has a good one in Fl - listen the them carefully but do not be afraid to ask questions and question their advice if needed...I wasted almost 2 years of my life not treating - because some people on the Net had me scared silly about their horror stories with sides - That was me though - I guess I fell in the trap of listening and taking what people say as gospel...You two ladies seem to be pretty level headed and strong individuals - Heck you both olive alone - that makes you very strong people...I think you will be fine - Watch your labs and make sure you eat even if you don't want to...And #1 top rule in treatment DRINK PLENTY OF WATER - it helps flush the toxins

*dip*

[Trish77]

No ruffled feathers!!!  I just wanted charm to know she had a bit of company in this particular situation.  You're telling it like it is and I particularly value that in this forum and it's important that you shared your opinion. I WANT to know the reality here and I'm glad that you and others are here and telling us that.  I have been reading through the forums and educating myself and able to make a much more informed decision BECAUSE of people like you and I'm bloody grateful for all of you.   So you come on out of that corner now please!!!  :)  Your information to me on another topic was ever so helpful and I apologize, I just haven't been posting lately, more like digesting so I'll get to it.  

[Trish77]

Thanks charm... see?  We're already not alone. :)  Finding this forum and the amazing people here has been a godsend.  Yes..keep in touch and keep posting. :)

Trish

[charm27]

dont be silly you!!!!! You didnt ruffle my feathers whatsover!!!
No standing in the corner!!!  We all alll learning and comprehending and sometimes especially on the internet its Hard to determine in which tone the person is speaking.

Im the kind of person that does not take things personally.
BESIDES YOU SAID NOTHING WRONG.

:} :} :}

[PSP-n-Me]

wow I sure didn't mean to ruffle any feathers by saying it will be hard to tx while living alone - I was only going by my own experience...these are "top gun" drugs, not to be taken lightly - the sides can be huge or minimal - everyone is different - I had somewhat of an easy go of it - and I can remember days when I was shaky and dizzy my husband had to hold me while I showered...It is not only a physical thing with sides - many people suffer depression while on these drugs - some people get dillusional, and some people do just fine - It's a **** shoot...

Best of luck to both of you - I'll go stand in my corner now HAHAHA

*dip

[charm27]

we will both be fine dont know when but we will. Hopefully your bx results will show no damage or very minimal. Good Luck.


Keep In Touch and we can keep each other posted as well.

I live alone Im not worried about that--theres nothing I can do.
I cant manufacture people to live with me.
I will make the best out of it.

[Trish77]

Well, depending on my bx results, I'm going ahead with tx as soon as I can get all the pieces in place and I live alone.  All factors considered, this is probably the best time in my life to do this. I know I don't know what I'm getting into yet, this totally seems like pulling a wildcard to do tx...but I'm getting the picture from reading things here daily and it's not at all something I'm taking lightly..some of your experiences are nothing short of brutal and I can see why this is called slaying the dragon.  I have the option to live with a girlfriend (god bless her) if it gets really bad but it'll be a last resort for me. If I proceed with tx, I'm going to have a girlfriend come stay with me the first weekend because I'm a bit scared of what'll happen.  I do have friends who will stay in touch with me and my kids who live away will keep tabs on me to as much of a degree as I'll let them (that's a whole other issue to sort out!).  So living alone doesn't mean going through it alone.  At least...that's my mental attitude about it without having done it so maybe that's not worth much.  I'm just in the same boat of having to decide tx while living alone.  I'm genotype 1a/1b so it's 48 weeks...just waiting for those bx results to make the final decision.

[PSP-n-Me]

I think those that are involved in "double dosing" it is with Interferon - Not riba - ( I believe Roche has a trial going on doing that ) One of our members here (when in treatment) did some messing around with higher than prescribed doses or riba and now has long term side effects quite some time after completing treatment - Riba is weight based and if your weight requires more than that it's fine - but you are not overweight - In my most humble opinion I think you are just asking for trouble - I recently felt the horrors of severe anemia and I am onl;y on 800 of riba - Just my 50 cent worth

*dip*

[charm27]

Im sorry I didnt answer your question. I have antibodies 20years later. Just shows I had it. It is not active and hasnt been active.

[charm27]

Yep thats the reason for be not being able to participate in trials regarding had the Hep B years ago.

Im rooting for you too!! The best!!

[charm27]

oh thank you so much for asking your doc. Thats very kind of you. I have NEVER heard of that before either. 72 weeks is an option for me if I have to go that route. As far as Riba I told him I would like to treat this aggressively if possible.....he agreed 1200 and I will stay on that thru tx.
If tx doesnt work or cant continue I will be eligible for SOC in 2011. If I go 48 or 72 he said I cant. Questioned it 3 times. Got the same answer. Very confusing. As Friole said I will worry about it in 2011. First things first. ( From what I gather some people have had luck double dosing) I am not that educated to speak about that.

Thanks so for your good wishes.

[Trish77]

A question regarding your Hep B.  You say you cleared it by yourself...do you mean that you got better all on your own with no treatment?  I also got Hep B, back in late 70's.  Mild case, abdominal pains and mild jaundice my only real symptoms, I was lucky.  Mine also turned out to be non-contagious and makes me immune, determined by the properties of the antibodies I have.  Thankfully, I was told then that I can't ever give blood and never have... or I would have many times over and my Hep C would have come in about that time also or in 1984 with the blood transfusion.  

Anyway...the antibodies remain in my blood permanently even though I don't have any illness from Hep B and never will and won't ever require treatment.  Perhaps this is your situation and perhaps, if it truly does preclude you from the trials.. this is why?

Good luck to you.... it's alot of information to take in and alot of factors to weigh.  I have my biopsy Monday and I've been weighing my own factors and it's a rollercoaster ride... just stay buckled in and hang on....rooting for you.

[PSP-n-Me]

hmmmm your doc said new drugs in 2011 - that's what mine said too - I wonder why people seem to think 2009 - Interesting

I have a question - why did he recommend 72 weeks if you haven't even started tx yet?  Is that the new protocol for high viral load?  Also, you're not overweight and under 150 pounds so why so much riba?  I don't like telling people what to do but I have to say riba is one nasty drug, if I were you I would question his reasons for the high dose..I see my liver Doc on Wednesday and I will ask her why he would say you are not eligible for any Interferon based meds if you fail SOC, I have never heard that before...

It's scary when you start treatment and things start changing in your body - but it sems you have got a good amount of information on here about the sides and what to expect...Best of luck to you - In my opinion the most difficult thing for you will be to do it while living alone - I could never do it if I didn't have such a wonderful caregiver...

PS: I am very happy with your choice to treat this demon while you're still young and healthy enough to - Kudos to you girl!

*dip*

[charm27]

Thanks much for your reply. Very helpful.

Have a great day.


P.S:: Aldo thanks for answering question of VL. I know I had asked Fl?guy same question twice=my mistake didint see his reply. Again...thanks.