Does Everyone Here Believe In Treating ASAP

[betteblue49]

I was diagnosed in 1995, when after my biopsy I was told I could wait since I only had mild inflamation (inflammation) of the liver. I was also told by my dr at the time, that I could wait until I was sicker, hmmm. I choose not to wait until I was sicker, Mono-interferon was the only drug available back then, and the protcol was 6mths. I did not respond and was labled a non_responder

I found another dr. and he put me back on for 1 year and I did respond, however, 7 months post tx I relapsed. To say that it was discouraging would be putting it mildy. However, I licked my wounds and went for my 3rd round, which was 18 months. Many times, I wonder what if I would have accepted being labled a non-responder, what condition would my liver be in now...

Happy to say, my tx journey ended in 1998 and May 16, 2007 I reached 9 years of being cured, yes I dare to use to "C" word.  

Getting back to my question, do must of you feel that tx is necessary and that you should not wait....

[alagirl]

Its always encouraging to hear from someone who has SVR'd and maintained that status.  Your case is particularly encouraging because it gives hope that there is still a light ahead for non-responders.

The to treat or not to treat issue can leave a lot of people arguing.  For me, there was no question at all.  To treat and treat immediately was more how I felt.  But then, I had a brand new acute infection that was documented as being brand new.  I can't say though that I would do it differently otherwise.  I'm a pretty agressive person.  I would probably treat anyway, although a lot of folks are going to disagree.  Certainly, its a personal decision.

[betteblue49]

Oh, I know this can be a hot topic, and I don't understand why. I mean if we were told we had cancer, I don't think we would say, oh, I'll wait until a better tx is available.lmao

Thank You, I try to encourage as many as I can. It did take me 3 years, wasn't easy but my mantra is no pain, no gain.. Did you clear? I hope so:)

[alagirl]

I'm in my fourth week.  They'll pull a viral load from me on Thursday and of course, I won't get the results for a couple weeks probably so we'll see if I'm UND yet then.  Cross your fingers, and not behind your back either! :)

I'm a geno 1b and my doctor has already told me I'll be treating for 48 weeks.

[betteblue49]

hey, I'll even cross my eyes.. It truly makes me happy when I hear someone is doing well on tx and I'm over da moon when someone is a SVR.. I am sending good happy vibes your way.

Gentle Hugs,
Bette

[autumnhope]

I found out in Aug. I had HepC & stage 3 Liver. I am in 3rd week of tx. I dont know if I would be on tx if my Liver was ok.

[betteblue49]

For me, it was a no -brainer.. If I had a disease why not treat it.. Happy I did because I didnt have any liver damage and it still took me 3 straight years of tx to clear.. If I had waited till I did have liver damage, I might not be here posting.. I wish you much success with your tx..

[ladywhy]

Would you please explain th last tx...18 mo.s? Pretty much everyone on this board thinks I should stop txing now. my 25 wk pcr was not significantly, but higher than my 20 wk. I have yet to see UND. MY hep dr. advised double dosing pegasys and 1 1/2 x Riba for weight based SOC.  I am gonna do another PCR early this week...hopefully it will be UND? I really feel betwixt and between. Any advice?
I'd appreciate it.
Yvonne

[veggie]

Everyone's situation is different. Some people have other health issues. Some people need to tx right away and others can wait. There are other factors also, like age, insurance, etc. I waited 3 1/2 years before I treated. Dr. Cecil pushed me into tx when he said, "If you want to live another 20 years you better treat." Geno 1a, stage 3, 65 years old, I treated for 51 weeks with PegIntron and Riba.

[PSP-n-Me]

I am so glad you posted your stats in here - you may also want to let people that you are the owner of a very successful and highly recognised HCV Forum -

luv ya girlie - Veggie *the orignal*

[jmjm530]

bette: Does Everyone Here Believe In Treating ASAP
-------------------------
The short answer is "no" -- and in fact, this discussion group is very split on the issue, in terms of those with little or no liver damage. Most everyone agrees of course that those with signficant liver damage should treat.

If you check our achives you can see arguments both ways, and these are probably one of our most heated topics.

I didn't plan to start the week on a "treat or not to treat" thread, but you seem to asking more about what is the consensus here, as opposed to why people feel the way they do -- so again the answer is that this discussion group is divided.

-- Jim

[goldenrule]

When i was diagnosed, i knew that i had only been infected for 3-4 years. Dr did not do biopsy sice there would be no way that my liver could of been affected in such a short period of time.  I was only 29 years old and just had a baby. I also had another son(age 10). I was devestated to say the least. i was consumed with fear that my children would use my toothbrush or get ahold of a razor. I got extremely depressed when i read about how people with liver failure die... I thought to myself, in 20 years i would be 49..... thats young,, too young to start having liver failure.. I wanted to be around to see my grandchildren...Treatment was rough, but i feel that i probaly had it better than most due to my age, gender, and fitness... Iwas lucky to be deemed RVR and lately i was deemed "CURED".
I no longer worry about my children having the same fate, and i have been able to put this behind me.. Its no longer weighing me down, and it seems like my life is back on track. As far as post tx sx, they have diminished.... Once in awhile i still have a dull pain in my joints(hips) .I used to be a heavy sleeper but now i am not.. But thats all on that note....

[PSP-n-Me]

I believe the same as you "if you got it cure it!"  I didn't always feel that way (got side tracked by a few people and things along the way to making the decision) but you have and always will be a big inspiration to me...You're defiantely a great role model for HCV successes and a true advocate - Hey we also have another great New Yawker in here - her name is NY Girl - she did 72 weeks and has achieved SVR - you NY gals are tough cookies!!

[dlr2007]

I was dx'ed in 96, while I was pregnant with my 1st child. When he was about 18 months old, I tx'ed on mono therapy. My LFT's were crazy high and iron was building in my blood- I guess the dr's didn't like how my body was doing with the Hep C. Well I did respond but not enough. (Note- I always thought I was a nonresponder, but my doc told me recently I was a responder- that's good I guess). After that I just got on with my life, had another kid, and somewhere along the way slipped into denial about my Hep C. About a year ago I found this forum- it taught me aLL about Hep C and gave the courage to get another bx. I'm still a Stage 1, Grade 2- in 96 I was Stage 0. So I'm gonna chill for a few years til the next tx comes out. Even though I had no sx at all on my tx back in 96, I just don't see the point of tx'ing now when my liver is OK and better meds are so close on the horizon. I also have a hubby who probably needs to tx more urgently than me, two busy kids and a 7 day a week job. Just not a good time to feel like sh$t! I pray that I don't regret this decision... but it's the best I can come up with for now.
Best wishes,
Dee

[alagirl]

The reason I feel the way I do about tx has to do with my personal belief that hepc affects other organ systems than the liver.  So.  *I* feel, and this is only me, and there are EXCELLENT arguments the other way as well, that it leaves a lot to chance in terms of other organ systems (like the kidneys and the brain, both of which have current research to suggest that hepc affects them negatively), not to treat just because the liver is not at a certain stage.  In fact, and I am going way out on a limb here, I think the cumulative effects of hepc on the body will someday be known to be far far greater than that of which we are now aware.  This is THEORY though, based on a few studies and pieces of research, but I feel strongly enough about it that my course was clear to me.

Also, quality of life issues are important.  Can you live with an autoimmune disease?  It's a very real possibility during and after tx.  What do you want in life, quality or quantity?  Of course, most of us want both, I know that's true of me.  But.  I'll take quantity if I can have any semblence of reasonable quality at all, even if I'm on painkillers for the duration.  In other words, I'd hold on kicking and screaming, scratching tooth and nail to the bitter end.  I'm the kind of person who says, NO, don't unplug me!  They may have a cure for brain death in twenty years! ;) LOL

However.  It's not a decision I really had to make based on my finding out I had hcv so fast after exposure AND being acutely ill.  Due to these factors it wasn't really an option not to treat in my mind.  Its almost not even fair for me to have an opinion about it.

[PSP-n-Me]

very good point about effecting other organs and tissues - I am in a study for Insulen Resistance - the first has eof the study is complete - 20 people that are all GT1A have successfully treated and reached SVR after a 6 month PCR - all of these people were insulen resistant before starting tx - now 6 months post they are all insulen sensitive - so yes, it does effect you in many ways...

[dancegirl54]

I have not treated yet, I do have some other issues and very little damage which has caused me to hold out for a bit for an "easier softer way".  I have infected 2 of my 4 children. My son (now 19) finished tx this summer - he was UND from week 2 - praying for SVR - he had significant liver damage.  My daughter(21) is in fairly good shape (though why my liver is less damaged than theirs I dont know) and has only now begun to discuss the HCV. I did not want to tx until I was assured that my kids were OK, I am a little more open to it now, but my experience on this board (off and on for a few years) has been that it's divided - more pros I think.  

[PSP-n-Me]

wow - I had no idea 2 of your kids were infected, that a tough one I am sure...is your daughter going to treat?  how old is she?  Bless your sons heart for tx'ing I pray for his SVR too!

[dancegirl54]

She is 21, I dont know what she is going to do - she is only covered by insurance for a few more years so it is a concern, but she is listening. we see the same specialist but she goes to her appts alone as she is in college. The doc tells me to leave her be and he will take care of her - I think he has her in mind for a trial. My son also has special needs and he never,ever complained all through tx. He is my hero!

[PSP-n-Me]

Bless your heart!  what a wonderful Momma you must be - Your son sounds amazing!!  I remembe you posting a few years ago - As I recall you are from Boston?

[betteblue49]

I am not trying to fire up your week.. However, I have a HCV forum over 7 years, which I shall not name, because I am not here for that reason. I asked that question because I have seen too many people die, waiting to errrrrrrrrrr get sicker or wait for a tx that was kind & gentle. HCV effects us all in our own way, some progress in warp speed, while other may die of old age.  Guess I should have posed it another way. Why do people feel they can wait to tx HCV, when if you were diagnosed with another illness you would treat.

[dancegirl54]

Thats me!

[betteblue49]

I shall keep your children in my prayers. You did the right thing, our kiddies always come first. Once, you know they are ok, think of yourself.

Gentle Hugs,
Bette

[betteblue49]

All 3 years were done only with mono-interferon.  In 1995, riba and peg were not available. However, at one point during those 3 years it was available, but I since I knew interferon well, kinda felt like the poster child for schering plough, why try another drug. I was used to the sides and was not looking for any more, lmao

[betteblue49]

I think this is a topic that needs to be spoken of more and more. I also feel strongly that people need to know there are many SVR, not just me.. Nice seeing ya here, veggie

Smooches,
Bette

[PSP-n-Me]

how's Boston these days?  I am orignally from Boston (Dorchester) but haven't been back there in years - Although since I got sick I wish I were back there for the benefit of New England Medical Professionals...and I miss the seafood

Is the big dig fixed yet?

[betteblue49]

BRAVO... I am so happy that you use the word cured. I have been forum bashed many times for using the "c" word, but I still use it:)

[PSP-n-Me]

smoochies back at ya LOL  (people are gonna think we are lovers YIKES!!!  LOL)

how's da hippy dog?

[betteblue49]

Oh we aren't lovers?  Hmmm, when did we break up, lmao
Thank you for your kind words, it's just a no brainer for me. When my first doc said well you can wait till you are sicker, even this New York Blonde thought that's dumb, lmao... Take lefty for instance, she waited so long, and when she finally did it she didnt respond, and she tried I think 3 or 4 times. She is now stage 4.. Cindy aka who passed, if you read her memorial on my webpage, dictated from her hospital bed what her message was; and that was to treat asap. Although she cleared HCV, which she was very poud of, her liver was so diseased she had liver cancer. That is why some people call me a tx nazi, lmao.. But thnk of any illness that you might be diagnosed with, you would not hesitate to address it. That is why the HCV community baffles my mind...

Hippydog is fine, heard she has been seeing ya cat, lmao

[PSP-n-Me]

you stay away from cat you mutt!  lol

OMG I didn't know Lefty was S4 - I thought she was a 1 last year, did she progress that fast??

[betteblue49]

Yes, that is my point... She went to stage 4 in warped speed. She also has varcies...

[PSP-n-Me]

omg that is terrible - I am so saddened to hear that - What are her options?

[betteblue49]

I think she will soon be listed for a TP, however, after TP, you need to go on tx to get rid of the HCV or it will infect the liver.  Don''t know if her doc will put her on tx again:(

[PSP-n-Me]

oh no :(  that is hard to take - poor gal...hearing this sure makes all my troubles seem so insignificant...please tell her I was asking about her and if there is ever anything I can do to help her out all she has to do is ask or email me...I wonder if she will be a candidate for the new meds - did she have trouble with Intereron or Riba or is she just a non responder? I don't htink there is any trial she would be elegible for (they want a clean slate so to speak) but maybe if she can hold off uand hope they hit the market like planned....wow - I am speachless this is awful news...But thanks for telling me - If Lefty agreed maybe you should do a thread in here for those that are on the fence about holding off on trx'ing - from stage 1 to stage 4 in one year!!  wow

[betteblue49]

She was in a few studies, nothing seems to be working...

[PSP-n-Me]

that's a real shame...My Hep Doc told me that some people just do not respond to Interferon - hopefully those new drugs with the combo of Interferon Riba and the magic bullet will be better suited for the non responders...I think there were a couple people on this board that did the Vertex trial for non rsponders and as I recall they cleared but I do not remember the details - but that trial is over and done with...too bad Lefty couldn't of got into that one...

[betteblue49]

She might have, I know she was in an infergen study.

[PSP-n-Me]

very sad :(   I hope people read this thread instead of dwelling on name calling in the other thread - it just goes to show you the power of the virus...I hate this bug

[jmjm530]

BB:Guess I should have posed it another way. Why do people feel they can wait to tx HCV, when if you were diagnosed with another illness you would treat.
-------------------------------------------------------------------------
If you've run a HCV forum for seven years, then I don't have to tell you the answer. You may not agree with the reasons, but you know them, cause they come up in every one of these "treat or not to treat" type of threads. At least they do in this forum, as a quick search of our achives will show.

Seems in general three types of people are in these threads. Those who believe in treating very early; those who think you should 'watch n' wait' with little or no liver damge; and those undecided.

Obviously, you've had plenty of time to form your opinions (as have I) so neither of us are in the undecided group. And since many in the -- let's call it the 'decided' group, have done a lot of research on this -- I think I can speak for both of us here that we've done our research -- neither of us are about to convince the other. Hopefully we can therefore agree to disagree. I certainly give both credit and support  to those who decide to treat early, but in general that would not be my choice for all the reasons that I'm sure you know.

All the best,

-- Jim

[betteblue49]

Thank you for your response. I know the more people see that people have cleared from doing tx, it might give them some hope. Thank God for forums, when I was treating in 1995, I didnt have access to the internet. Although, my family, friends and co-workers were supportive they did not understand my feelings.  When I relapsed after being VF for 7 mths post tx, it was worst than first being diagnosed.   It's just a close friend from the internet recently died, although she cleared, she asked me to continue bringing up the subject of early treating. By the way, have you treated?

[jmjm530]

I'm on a public computer -- out of town -- that is  closing down in a few minutes, so this will be brief.
Yes, I treated agressively for 54 weeks. I'm SVR for over a year. But I waited until I was stage 3 -- actuallly told a bit past. This is consistent with what I believe, in general. Watch n' wait with little or no liver damage. Treat agressively (within reason and personal tolerance) if you have significant liver damage. Again, not very original, just one point of view. Computer shutting down in a few minutes, so as the bunny says....that's that's all folks ...for tonight at least.

-- Jim

[betteblue49]

Congrats on your SVR. You were very lucky that you cleared first time out. It took me 3 years to clear, so if I had waited, I might have been plum out of luck.. The bottom line is people should get the best dr that can and listen to him or her.

[TexMikel]

I think it is up to each of us.  Me  I could not treat when I was DXed at stage 4/4 it is very dangerous at any time.  This liver I started at 2/2 failed at 3 months post TP.   I am able to tolerate the TX more easily. But it took a very short time this time 9 months to go from perfect to 2/3.  We can not count on time always being our our side.  I would hate to steer some one wrong.  This is life and death.  From that alone I say the healthier your liver is the better chance you have to treat and clear.  I have cleared and am continuing to stay that way. That is just my experiance.  My two cents.  

[PSP-n-Me]

another thing to think about too - just becasue you have low liver damage does not automatically say you can wait to treat - I have 30% fatty liver and Insulen Resistance - the fatty liver speeds up the progression of fibrosis and the IR can in instances cause SVR to have less odds - but even with that in mind my Hep Doc said I should not wait to treat cause of the Fatty liver...There are too many variables to consider to make a blanket statement of *low liver damage wait for new drugs*

[ladywhy]

[betteblue49]

That was why I treated when I only had mild inflamation (inflammation). I was in great shape, if I was not   diagnosed  during a rountine medical check up,  I would have never known. I was in the best shape I ever was in. I was going to the gym 3 times a week. Why wait until you feel sick. Many people go from stage 2 to 4 in warp speed,  some down.. I just dont much like playing russian roulette..

Have a great night sweetie, send my love to your wife..

[betteblue49]

I had no damage and it took me 3 longgggggggggggg years to clear. I rest my case..

[PSP-n-Me]

you're truly and inspiration to all

[betteblue49]

Thank You. I just believe, especially those of us who have treated and cleared have a responsibility to encourage others to treat, who are able too. Many Cannot treat due to other medical conditions. My mission is to give Hope. There is life after HCV.

[PSP-n-Me]

I agree - there is life after HCV but you will never know what it is unless you get rid of it first

[nygirl7]

I mean if we were told we had cancer, I don't think we would say, oh, I'll wait until a better tx is available



LOL excellent point.  I had decided that I was going to treat regardless WHAT my biopsy said.  I just didn't want this in me getting WORSE.  I treated for 72 weeks as aggressively as possible and am SVR only 9 months now so THANK YOU for your post.  9 years........now THAT to me shows how worthwhile treatment is.

But it's only my opinion.

Great topic.

[PSP-n-Me]

bette is from NY too and I think she had the Doc you went to see when you decided to do 72 weeks
veg

[betteblue49]

Hey another smart New Ywaker, lmao.. Congrats to you... I live in Brooklyn.. Well actually 9 years and 5 months, but who's counting, lmao

by da way, ya opinion was fab:)

[honey11]

Hi Betteblue,,,,I knew you had been SVR a long time but didn't realize it was 9 years now!  That is wonderful and I'm like you,,,,like the word Cured better.  I know when I found out I had it,,,,I wanted to treat,,,my husband also,,,we prayed that we could both reach SVR and feel better about having no virus at all.  It's such a gamble on never knowing when the damage is going to hit from one year to next and of course lots never have much liver damage at all and die one day from something else but you just never know.  Well,,,how do you feel now after all these years?  Any problems and do you still see a dr yearly?  I always wondered how often people continue going after reaching SVR?  Good to see you here!

[betteblue49]

Yep  May 16, 2007 made 9 years..I did tx from 1995 till 1998... Thank you for your kinds words, I feel great, never had any after effects from tx. I I'm on Lipator and need to have my liver functions checked every 3 to 4 mths, so I tell my doc, throw in the PCR, lmao.
How did you and your husbad do?

[EarthMan]

You feel great because the old ifn is like baby aspirin compared to real aspirin. You sure brag a lot dude!!!! In the real world of today, you wouldn't even be able to handle the current soc. treatment meds.

[EarthMan]

you make it sound like you treated for 3 straight years when in fact you did not. You also make yourself sound as if you were the poster child for hepatitis c. In fact its all about you, you, you! You actually believe that in your mental midget mind. And PSP-N-YOU has her nose so far up your butt that i don't even know how she breaths. Forum for 7 years? It must be that clown forum that you speak of cuz it sure isn't a support forum. Are you under attack again??????? Ya numbers are dropping so its about that time eh? rotfl

[alagirl]

Actually its my understanding that the old IFN was WORSE than today's pegylated IFN's?  Hard to imagine anything being worse at the moment since I'm treating right now, but still... that's what I'd thought, that you had to take the IFN more often before it was pegylated and that it was a harsher med to the system?

[betteblue49]

I did treatment  for 3 straight years, and been cured for over 9 years.  Why are you so hostile Andy, when your girlfriends forum has been dead for years. You both have been exposed on delphi as the frauds you are. Before long, the people will see you as the snake you are. You have never ever been supportive of the HCV Community and should be banned by all. The only clown that came to my forum was you and I banned you for starting trouble with people on tx.  Yes, my forum was attacked by you and the rest of your village idiots. ,However, I always make a point of throwing out the trash. EH?

P.S. Medhelp does not tolerate troublemakers like you
and I'm sure your days here are numbered.

[betteblue49]

Thank you alagirl. Doing mono-interferon 3 injections a week for 3 straight years was no piece of cake. I do know that Riba is no fun either. Earthman is actually an illegal alien, which is kinda funny that he calls himself earthman on here. He uses many many names, I believe he is also Mr. Liver. He has been banned by many forums for bashing people who are struggling with tx. If I were you, I would keep an eye on him,  He has many serious problems. By, the way, nice meeting you alagirl.

Bette

[ladywhy]

For Goodness sakes, let this useless thread get buried already. GOODBYE Betteblue.

[betteblue49]

You might think it's useless, not everyone does. I don't appreciate earthman who I know to personally attack me. If you knew him, like I do, I'm sure you would respoond to him too. There is no need for you to be rude to me. You don't have to agree with my views on treatment, but the last time I looked, I lived in the USA and I have the right to voice my opinion without be attacked by that fraud earthman.

[Xquizit]

Does the name bubbles ring a bell?

[betteblue49]

Bubbles rings a bell, so so does earthman the alien