Hep C Discussion Forum

DJ · Senior Member

RE: I have had enough, quitting at 36 weeks

rotting to the core · Member

This truly is great news, SVR is fantastic to read. In one hour I will inject # 40. Have many times wanted to quit. And yet I know if I did and do not reach SVR I will beat myself up for along time. God has placed me in a situation where I have been able to remove myself from the world. Have had a pretty rough go, but have truly started to be happy with myself for pushing through so many side effects. Never been a gambler, just can't place that bet, and subject myself or family to another year of this. I know this is an old post, as always late to the party.

Again congratulations.

2willy · Senior Member

I finished last week and had same problems as you along with a few major marriage problems ie divorce etc. try to keep on going, on the third blood transfussion I wanted to give up but I figured no I have lost so much to this virus that it was not going to beat me

Bill and his dogs

Cinnamon Girl · Guru

Hi Dougie and Bill, just wanted to mention that John (Fajah) started this thread back in Feb this year, and has since had some very good news.

This is what he wrote on 21st Aug...

"FYI to everyone on this thread. I have SVR at the 6 month post treatment mark. I feel like a rock star. I know I quit the program at 9 month instead of the full 12 and happy that I am cured."

So everything worked out well in the end!! smile

Butcheeyboy · Veteran Member

Fajah wrote:

I have passed every futility test point and was undetectable at 2 weeks....pretty rad for a non responder....and every futility point since then. I am about to turn 60 in June, I have a s2 liver (a lot of good liver left), so I am going to go against the recommendations of the drug manufacturers as I feel certain they have a HUGE "cover your ass" margin in everything they do.
I am loosing muscle mass through the inactivity brought on by feeling pretty bad nearly all the time now. In the first few months, I did great, I was going to the doctor and fielding all his questions about sleeping, emotions, constipation, and things in general and I was able to answer nearly all them with "no problems here". Thinking to myself that these must be the symptoms that mere mortals feel, not me. Boy, did that ever catch up to me...riba rage, flu like symptoms, constipation, depression, and in general, just plain crappy.

Oh please think about your decision.

Yes it is rough near the end. I was asked many times by my Dr. if I wanted to stop but I felt going as far as I have that I gotta stick it out and finish. I had blood transfusions and was feeling so weak and crappy, some days I didn't even want to get out of bed. Every thing you describe, I felt and then some.

I am now gaining the weight back that was lost, my body is beginning to feel 'normal' @ 6 months post-treatment. Hoping you have a good support person at home can really help you get through till the end smile

dustbear · Senior Member

I'm so happy for your results John!

Zlikster · Guru

congrats John :)

SVR medal for u !

mallani · Guru

Hi John,

Congrats on your SVR. Shortening your Rx time was risky, but it has paid off. As you said, RVR was a big factor in your decision. Go out and prosper, young man. Cheers.

TeddyTrout · Senior Member

That's great news bro. for those of you thinking of quitting early, consider reducing you interferon to 145, and Riba by one a day. This was doctor approved to me . he insisted that statistic show that after week 36 there doesn't appear to be any difference in the SRV rate. in reducing the meds. I'm not a doctor by any means but am well read and self educated in this area. If your doctor is insisting that you stay the coarse and your thinking not a chance, I'm quitting. conciser the alternatives. I'm in for the full 48 and, yes I'm really sick and couch locked for the most part, force to us a wheel chair with other doing the driving but I'm still not going to quit. at 61, this is the last kick at the can. Damn the torpedoes' all engines ahead full.

Hang in the best you can.

Dillo · Senior Member

That is great news. I'm glad your decision worked for you. I was wore out with anemia after 24wks on mine. 36 or 48 would have been extra tough for me.

Bills · Guru

Great news

I'm happy all it worked out for you, Took a leap of faith and made it Happy SVR

BillS

Cinnamon Girl · Guru

Hi John, what fantastic news this is, so pleased for you! Congrats!! biggrin

It can`t have been an easy decision for you to stop early, but you had already struggled through a long stretch of 36 wks and the odds were in your favour.... and that has now been validated!

Wishing you all the best in your new healthy and virus-free life!

Biggyb · Guru

That's great news John, i did 48 weeks but at 36 i was ready to quit, mainly because i was und since 8 weeks. Oh well it is over now and moving on in life..

Fajah · Member

FYI to everyone on this thread. I have SVR at the 6 month post treatment mark. I feel like a rock star. I know I quit the program at 9 month instead of the full 12 and happy that I am cured.

Everyone keep at it, and it will all seem like a bad dream when it is over.

Fajah · Member

Scout wrote:
First time round I was blown over by symptoms. RA set in about 6 months in treatment and I could barely roll myself over in bed. I was feeble as all hell and knew I would die soon(drama). I was treating with Interferon and Riba. THis time through I treated with Incevik, Pg, Riba and made it through pretty much unscathed. Yeas I felt like crap on a biscuit, my numbers plummeted, I was anemic, bloated, RA kicked in again and I wanted to quit. Some how I made it through the 6 months and Im now coming up on 6 months post. My RA has actually gone in remission, I've been UND since week 2 of tx, I feel great and I look forward to being even healthier than I was prior to the virus.

It's amazing what we can get through.

-- Edited by Scout on Sunday 10th of February 2013 05:45:30 PM

It sounds like you would not be considered treatment naive. So how did you get the 6 month program?

We have had the same und schedule.

John

Butcheeyboy · Veteran Member

Fajah wrote:
If I had been treatment naive, I would have been done 3 months ago.
I have passed every milestone for the 24 week program, but because of my non-responder status, they say I must go 48 weeks. I don't feel I can go another 3 months, this has really taken a toll on my physical health, not to mention mental heath.
Anyone out there quit early with success?
There were times I was ready to just walk away. I have another 7 weeks to go and 48 complete.
I have had 2 blood transfusions recently and they really made me feel so much beter as my body
just couldn't take it any more. I had forgotten what it felt like to have energy and motivation.
Don't know what your blood counts are but see if you are in need of a 'boost' with your blood.
It made all the difference for me and keeps me going.
Good luck.

-- Edited by Fajah on Friday 8th of February 2013 03:09:27 AM

mallani · Guru

Hi Faraj,

Treatment duration is up to you. You've done 36 weeks which is no mean feat. If you've had enough, quit.

As you say, your results have been excellent and you're only doing 48 weeks because of your previous non-responder status. If you were F3 or F4, I'd try to convince you to do longer. As a cirrhotic, I don't have a choice, and must do the 48 weeks.

Good luck with your decision.

12Step Guy · Senior Member

I'm not a big fan of one-size fits all treatments. And we never really know if having a SVR at 36 weeks and not waiting till 48 to quit will make a difference. To some the 48 weeks might and others it might not or it might not matter if it's 36, 48 or 100 weeks. We all have different drug resistances. For me Im going with the 48 weeks, since my past two attempts failed; this time Im all in. I try to keep myself inspired with DVDs, songs, readings and people. Ive got 13 weeks left and come hell or high water Ill make it if I can, but cant fault anyone for their choices.

When I was in the CD field, half the guys I thought would make it didnt and some of those who escaped into the night showed up at meetings working it a day at a time. Go figure. This whole thing is about loving and supporting each other as much as we can.

Vern

2ndTimeAround · Member

Fajah wrote:

I have passed every futility test point and was undetectable at 2 weeks....pretty rad for a non responder....and every futility point since then. I am about to turn 60 in June, I have a s2 liver (a lot of good liver left), so I am going to go against the recommendations of the drug manufacturers as I feel certain they have a HUGE "cover your ass" margin in everything they do.
I am loosing muscle mass through the inactivity brought on by feeling pretty bad nearly all the time now. In the first few months, I did great, I was going to the doctor and fielding all his questions about sleeping, emotions, constipation, and things in general and I was able to answer nearly all them with "no problems here". Thinking to myself that these must be the symptoms that mere mortals feel, not me. Boy, did that ever catch up to me...riba rage, flu like symptomes, constipation, depression, and in general, just plain crappy.

i have posted many times here, that i am still hitting the gym, working full time and today i refereed 3 soccer games, 2 - 25 minute halfs each. dude, in the interest of maybe helping someone else, i take depression medication, see a counselor once a week and also am taking medications for arthritis and high blood pressure. i take a total of 19 pills a day. i go to church as regularly as i can.

here is a story. i got caught in a rain storm on my motorcycle once. i was wet and cold, and about 25 miles from home. each mile i stuck it out, (no cover was available), brought me a mile closer to home. each day brings you one closer to being cured.

if you have the means, get counseling. find a support system..i wish you the best.

Bills · Guru

hi Fajah

I do understand exactly how you feel. I had to make the same choice and I seem to agree with go on as far as you can to the end of (48) I just relapsed 3 weeks ago +/-. I'll try to make it easy I have taken a total of 74 weeks of Interferon and Ribaviran ( strait ) and relapse. I started in Aug 2011- a trial I was almost there week 45-in trial I relapsed (#1) . so I went right into TX with Inciveck ( this was their Idea and because I failed 2nd time and had low virus ) I wanted to quit at 72 weeks but, I kept getting UND blood tests being half way I decided would be going all the way, I was heading for 96 strait weeks. I made up my mind to keep going week by week etc. It was SVR or bust I thought I was home free but bamm (#2) another relapse @ week 74 ( just 2 weeks later) But now I know Its the drugs not working for me. IF I had quit and relapsed I would have blamed myself. And I would have beat myself to death. I'm glad that's over for now. So now I can choose to do something else now like wait for the new interferon ribivarin free cures and do other things to say as healthy as possible I'm worried about permanent side affects but whats done is done now and I have to keep believing I'll be OK I just wanted to share my last but current results with you I hope you make it either way you decide to go. I as was said please keep us informed on how you do.

-- Edited by Bills on Monday 11th of February 2013 06:33:10 AM

Bloomster · Senior Member

I agree with Davesf. Don't make your decision at your lowest point. You want to make a great decision for yourself. We have got your back and are here for you.

britlitkaren · Senior Member

Dr. stopped me at 43 weeks due to a varices bleed out. I'm 9 mos SVR now. I was worried, but since I was undetected from week 4, that helped my odds. The transplant hospital gave me now option. The bleed and banding was their cue that my body had all the treatment I could endure.
It's tough especially when you are making progress w/ UND. You don't want to give up too soon. Best wishes to you while working through it.. Karen:)

Marky · Member

I do shot 40 early next week.

At my last dr appt., my nurse asked me how I was feeling. I responded, "****ty...same old, same old".

She sat quietly reviewing some written material. I asked her what see was doing and she said, "I'm wondering how much benefit there is to you continuing with treatment. Typically, low hemoglobin means your responding to treatment. Your hemoglobin has been rising. You're stage 2, grade 1, BMI is good, non smoker, you were in very good condition at the start of treatment (marathon runner). I've spoken with some Dr's who think your 4 week viral load was likely a lab error (< 15IU/mL and thus the exact value cannot be calculated)...so I'm wondering how much benefit there is to you continuing treatment."

I reminded her I had a high viral load to start treatment (6.85E+6 IU/mL). She agreed and commented that according to the protocol, the longer you stay on treatment, the better the odds of a SVR...but questioned, in my case, the diminishing benefit. She said, "Can you make it to week 40 (at that point, was two shots away)?.

We then discussed that assuming I achieve SVR, my liver should regress to grade 1, stage 0. If I don't achieve SVR, there will be less toxic treatments available 2 years from now.

So based on my situation, I'm stopping at 40 weeks. I believe my CBC levels might be suggesting toxic effects of the drugs in my system had reached a point greater than it's benefit. On the one hand, I believe there is some truth to the drug companies looking out in their best interest....that is, ensuring the protocal be as long as possible. On the other hand, I'm sure there are those who would benefit a great deal by going beyond the 48 week treatment protocal.

We'll see.

Scout · Senior Member

First time round I was blown over by symptoms. RA set in about 6 months in treatment and I could barely roll myself over in bed. I was feeble as all hell and knew I would die soon(drama). I was treating with Interferon and Riba. THis time through I treated with Incevik, Pg, Riba and made it through pretty much unscathed. Yeas I felt like crap on a biscuit, my numbers plummeted, I was anemic, bloated, RA kicked in again and I wanted to quit. Some how I made it through the 6 months and Im now coming up on 6 months post. My RA has actually gone in remission, I've been UND since week 2 of tx, I feel great and I look forward to being even healthier than I was prior to the virus.

It's amazing what we can get through.

-- Edited by Scout on Sunday 10th of February 2013 05:45:30 PM

davesf · Senior Member

Is it your physical health or more the mental game? We all have/had days when were more beaten down mentally than others. If you decide to quit early, make sure you decide on a normal day, not a really down one. I would forge ahead with the plan that you may not make it 48 weeks but you are going as far as possible to maximize your chances. Then take it one more week/day/pack/pill at a time. And post here on the days you are feeling beaten down and watch as the love and support come back at you to help you go on.

2willy · Senior Member

You just described my symtoms except for constipation and I have the other. It is like a balanceing act, should I take my pills, should I eat before I go out, where are the closest donut shops with a washroom. Just got up after last post because I was so tired, we are in the midst of a very large snow storm and wind chill, but you know I will beat this and I will feel better sometime in the future, I look down the road at my neighbor who is 58 high bracket income, travel all winter and he let waited to long for check up and know has one year to live. Cancer. So I guess all I am try to say is you have come so far and so far the results are so good. It is your decision and I pray you will be comfortable with it
Bill and Family

Fajah · Member

I have passed every futility test point and was undetectable at 2 weeks....pretty rad for a non responder....and every futility point since then. I am about to turn 60 in June, I have a s2 liver (a lot of good liver left), so I am going to go against the recommendations of the drug manufacturers as I feel certain they have a HUGE "cover your ass" margin in everything they do.

I am loosing muscle mass through the inactivity brought on by feeling pretty bad nearly all the time now. In the first few months, I did great, I was going to the doctor and fielding all his questions about sleeping, emotions, constipation, and things in general and I was able to answer nearly all them with "no problems here". Thinking to myself that these must be the symptoms that mere mortals feel, not me. Boy, did that ever catch up to me...riba rage, flu like symptomes, constipation, depression, and in general, just plain crappy.

2willy · Senior Member

I have looked at these treatments many times and have come up with, if I have a detected viral load in March they will take me off treatment at week 24, this is my first treatment attempt but have gotten much knowledge about it before I started.... if taken off I will be doing cartwheels in August since that is when drugs will come out of me, if not I will be doing probably 54 wks because of the problems I had with blood levels, so I will be doing cartwheels in March 2014... I a 62 and I do not know how long I live but I have come to believe that anything I go through I can share with others to help them. Life sucks sometimes but I know if I keep putting one foot in front of the other and rest after 12 steps life will be ok, besides at some of the meetings I go to some of the young nurses get all kind over an old fart so it helps the ego also.

bill and family

GodsGrl · Senior Member

I always say dont quit before the miracle happens! Pray about it, talk to your doctor and gather as much info as possible. Then you wont spend a lifetime of what ifs, after you make your choice. I know treatment is hard and ugly at times, but a liver transplant is worse. No matter what your decision we are here to support you in this.

DJ · Senior Member

JoAnneh wrote:
I take shot #39 tomorrow!
I have come too far to stop now.
If you stop and virus returns, u may always wonder if you
Stay on med 48 it would have worked.
That's how I think!
I am ready for it to stop too....very ready
Hope u will hang on! U r almost to single digits!
You have come so far....and we can't live
Without a liver. My prayer time helps me cope
But some days are just harder than others.

This is how I think too.....if I don't do it and do all of it, and things go badly (virus comes back) I will always wonder....what if... And all of those weeks up until now would have been for nothing. But everyone has to decide for themselves about their own treatment. I hope everything works out for you. Why not go one more week and give yourself more time to think about it. Take one more dart and go one more week on the medicine and take time to consider all of your options.

KMMM · Member

This is the first time my husband has done treatment.

So far, the doctors are pretty encouraging that he will be done at 28 weeks.

It has been pretty hard, and quite honestly, I don't know if he could tolerate a week over 28 weeks.

You did great to get 36 weeks done!

Ronna

DJ · Senior Member

I am so sorry. This is my first time and I am only 4 weeks in. But Judy on this board had to quit early. You may want to look at her posts. I believe her virus is back and she is waiting for the new medicines to come out before trying again. I hope things work out for you.

JoAnneh · Guru

I take shot #39 tomorrow!
I have come too far to stop now.
If you stop and virus returns, u may always wonder if you
Stay on med 48 it would have worked.
That's how I think!
I am ready for it to stop too....very ready
Hope u will hang on! U r almost to single digits!
You have come so far....and we can't live
Without a liver. My prayer time helps me cope
But some days are just harder than others.

-- Edited by JoAnneh on Friday 8th of February 2013 05:26:45 AM

-- Edited by JoAnneh on Friday 8th of February 2013 05:28:56 AM

Fajah · Member

If I had been treatment naive, I would have been done 3 months ago.

I have passed every milestone for the 24 week program, but because of my non-responder status, they say I must go 48 weeks. I don't feel I can go another 3 months, this has really taken a toll on my physical health, not to mention mental heath.

Anyone out there quit early with success?

-- Edited by Fajah on Friday 8th of February 2013 03:09:27 AM

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