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Post Info TOPIC: Doctor stopped my treatment
HazeySask


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RE: Doctor stopped my treatment
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John & Bill,

I'm sorry to hear about your stumbles with treatment.
New drugs are on their way though, lets hope they get here sooner than later and you guys get that cure.

We're here for you. Take care,

Brad

__________________

Genotype 1 :: Treatment Started 09-JAN-2013 :: Ribavirin - Peginterferon - Telaprevir :: VL UND Week 6
hrsetrdr


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Bill,

The first time I read this thread I didn't grasp the fact that you also had to stop tx, that is a disappointment that we all feel.    You should be starting to feel the "life forces" ebbing back into your body soon, that is a huge consolation in itself, and the fact that better treatments are on the way soon is unprecedented in HCV treatment.   We'll all be here for you & with you for the next round of tx, when it comes.

Take care,

Tim



__________________

"hrsetrdr"=Tim

Treatment halted on Aug.8,2012 due to vision problem.  6 month post tx labs

Aug.2013 SVR

Be strong when you are weak, brave when you are scared, and humble when you are victorious.
- Unknown

 

 
Bills


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Thank you all so much you all mean alot to me. And this is waht I mean by I couldn't have been able to handle this If I didn't find this forum.

For 1 I would have been in the dark on what would happen next.So much information here. I could never even have thought to ask things I learned here.  It's hard to get the doctors time to really understand what's going on outside your visits and your own symptoms. I wouldn't know about other trials.  I admit the first thing I thought was Big ass bottle of wine. I didn't pick up. That was close. I feel safe for now and glad I could stop treatment for a while. It's like holing your breath every time you breath. I know everyone dosen't have the option to wait. and if I had to I would do another trial.  I'm to afraid to do this again right away. I had 74 weeks strait of interferon and the rest.   I Thank you all again. You've made this much easier.  

BillS    



__________________

Bills

Harvoni started 12-12-14 for 24 wks PrevTX Geno 1 stage 3 cirrhosis - non resp Int/ ribv. Started Trial  in Aug 2011 -July 2012 into Incivek relapsed  Feb 2013 Had 72 weeks on interferon & Riba.

Cinnamon Girl


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Bills, I`m so glad you found this forum too.  Since you first joined us you`ve very quickly become part of this wonderfully caring community and we`re here for you any time.  Take good care of youself.  ~ Jill



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
Mary Jane


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Posts: 523
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Bills wrote:

I stumbled on this discussion forum and it has turned my doubts into action. ALL THE PEOPLE Here are some of the best people Ive ever known some half way around the world. I would not have tried 3rd  TX if I didnt find this and get the support it offers  I got the bad news 2 weeks ago and didnt know how to post this. At end of round 3, me and the dragon are tie. Im not finished yet. Ill go the distance I just need to rethink my strategy.  Im still cheering the dart club on Ive seen many achieve SVR in my short 6 months here and expect all of you close to the finish to finish a winner   

I was afraid to put this out for a few reasons  but 1 I didnt want to cause someone else who may be questioning treatment and not sure if they should start TX  to back out.  Please  Keep asking questions and rely on your doctors advise or get a second opinion it is doable and you can be cured.  Although Ive had 3 attempts and virus still broke through Im a smaller percentage of the infected. There are more passing here than failing. I accept this outcome for me and Im glad I have closure on the question will it work for me?  I decided I wouldnt do another treatment with Interferon and Ribavirin. The triple I did last year w/DEB 025 was working until the DEB 025 was pulled by FDA  and 2012 I Was UND  for almost 6 months on Incivek . So I believe it is possible.  My feeling ( only a guess ) Interferon and ribavirin doesnt do it for me but other drugs did.

Im taking a break Im told my liver function is good and always has been and they see no problem with me waiting for interferon free TX  Ill still be posting as I have and trying to be of help and encourage the people who venture here

So I leave with this for now

 

(( hugs )) Bill your still tuff as nails a true warrior...  lol enjoy  your sense of humor... great song... hang in there I  keep sayin & believin the push for the new drugs is commin... baby boomers aren't going to take this lyin down.. re-group..  all the best MJ



-- Edited by Mary Jane on Tuesday 5th of February 2013 03:30:02 PM

__________________

Do not go where the path may lead, go instead where there is no path and leave a trail.Ralph Waldo Emerson

1a - VL 22 million  F2- IL28B- CT / Inck-Riba- Peg triple therapy 9/15/12 UND 4/8/14  8 wks BT ..3/1/2013 done! 3wks Post UND
mallani


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Hi Bill,

Understood. Take a break, you deserve it. Get all that poison out of your body, and rethink it.

We'll be here for whatever you decide.



__________________

Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
Bills


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LOL that does sound confusing Sorry

Yes I had a positive Viral test and a second to be sure so I'm sitting the bench. I am very disappointed and sick over all this time I spent in TX But I'm getting re focused. This forum is like a movie I can't stop watching. all the great advice and encouragement I got here I have to see the end and by that I mean You MJ Vern Joanne and and all the others to many to name get free of this trap. I May not have started round 3 if it weren't for this forum and I know I would be in really bad shape with this out come If I didn't  have you guys here. Gotta step out for now I be back tomorrow.

And John We always say to people we're not alone and I'm so sorry anyone has got to be in the same boat with me. So we're not alone now. You sound like a real fighter I hope to travel again down this road Maybe I'll see you there.

Bill S



__________________

Bills

Harvoni started 12-12-14 for 24 wks PrevTX Geno 1 stage 3 cirrhosis - non resp Int/ ribv. Started Trial  in Aug 2011 -July 2012 into Incivek relapsed  Feb 2013 Had 72 weeks on interferon & Riba.

mallani


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Hi Bill,

My brain is obviously mush as I'm not certain what you mean. Have you stopped Rx? Did the PCR become +ve?

You obviously don't get much joy from the Interferon, based on previous results. That's a bummer, as you need it to control the RAV's.

Whatever you do, we're here and want to help. Good luck mate.



__________________

Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
hrsetrdr


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Posts: 940
Date:
Permalink  
 

John,

I'm so sorry to hear of your stopping tx, I know what that's like.   God seems to have other plans, perhaps the upcoming "pill only" treatments coming down the pike are what he has in mind.   

The timing is about right to start planning that garden, eh? 

Best wishes, take care.

Tim



__________________

"hrsetrdr"=Tim

Treatment halted on Aug.8,2012 due to vision problem.  6 month post tx labs

Aug.2013 SVR

Be strong when you are weak, brave when you are scared, and humble when you are victorious.
- Unknown

 

 
JoAnneh


Guru

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Posts: 1077
Date:
Permalink  
 

Bills,
Thank you for your support!
I am going to finish this tx.
I am getting strength from you.
I will get rested and have a much
More positive attitude! I just
Pushed myself too much last few weeks
Trying to be all things to all people.


I hope u have a good break.
I have never known any soldier fight Hep C
Harder than you. Ypu are a great Warrior.

Enjoy feeling better.
Keep that positive attitude and easier 
 tx is on the way.
Xxoo



-- Edited by JoAnneh on Tuesday 5th of February 2013 12:21:54 PM

__________________

JoAnne

Genotype 1a, Triple therapy w/Invicek started May 19, 2012

DET 4 wk. UND 2,6,12,24 48 treatment. Achieved SVR 2013!
Bills


Guru

Status: Offline
Posts: 648
Date:
Permalink  
 

I stumbled on this discussion forum and it has turned my doubts into action. ALL THE PEOPLE Here are some of the best people Ive ever known some half way around the world. I would not have tried 3rd  TX if I didnt find this and get the support it offers  I got the bad news 2 weeks ago and didnt know how to post this. At end of round 3, me and the dragon are tie. Im not finished yet. Ill go the distance I just need to rethink my strategy.  Im still cheering the dart club on Ive seen many achieve SVR in my short 6 months here and expect all of you close to the finish to finish a winner   

I was afraid to put this out for a few reasons  but 1 I didnt want to cause someone else who may be questioning treatment and not sure if they should start TX  to back out.  Please  Keep asking questions and rely on your doctors advise or get a second opinion it is doable and you can be cured.  Although Ive had 3 attempts and virus still broke through Im a smaller percentage of the infected. There are more passing here than failing. I accept this outcome for me and Im glad I have closure on the question will it work for me?  I decided I wouldnt do another treatment with Interferon and Ribavirin. The triple I did last year w/DEB 025 was working until the DEB 025 was pulled by FDA  and 2012 I Was UND  for almost 6 months on Incivek . So I believe it is possible.  My feeling ( only a guess ) Interferon and ribavirin doesnt do it for me but other drugs did.

Im taking a break Im told my liver function is good and always has been and they see no problem with me waiting for interferon free TX  Ill still be posting as I have and trying to be of help and encourage the people who venture here

So I leave with this for now

 



__________________

Bills

Harvoni started 12-12-14 for 24 wks PrevTX Geno 1 stage 3 cirrhosis - non resp Int/ ribv. Started Trial  in Aug 2011 -July 2012 into Incivek relapsed  Feb 2013 Had 72 weeks on interferon & Riba.

Mary Jane


Guru

Status: Offline
Posts: 523
Date:
Permalink  
 

John.. bummer. hoping you''ll  back to yourself soon.. the new drugs will be here before ya know it.. stop in from time to time and let us know how your doing .. all the best peace and love MJ



__________________

Do not go where the path may lead, go instead where there is no path and leave a trail.Ralph Waldo Emerson

1a - VL 22 million  F2- IL28B- CT / Inck-Riba- Peg triple therapy 9/15/12 UND 4/8/14  8 wks BT ..3/1/2013 done! 3wks Post UND
Cinnamon Girl


Guru

Status: Offline
Posts: 5629
Date:
Permalink  
 

Really sorry you`ve had to stop tx, John, I know you must be so disappointed but it just wasn`t meant to be this time round.  Time now for some well needed rest and recuperation and then you can look forward to getting out and tending to your garden again.

Look after yourself and try and stay positive...your time will come.  All the best, Jill



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
12Step Guy


Senior Member

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Posts: 413
Date:
Permalink  
 

John, sorry to hear about the turn in events. Hope you check in from time to time. Same thing happened to a friend of mine. He got worse and then got better. Who knows what the plan is for us.

Hang in there - help is on the way.

Vern



__________________

Genotype 1a, IL 28 = CT  Interferon and riba 48 wks in 99, Daily Peg and Riba 18 months in 2007, Started Incivek, Peg, Riba 6/21/12. 4th stage cirrhosis. Last Dart will be May 23 2013.
GodsGrl


Senior Member

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Posts: 113
Date:
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Ahh John I am sad to hear this, may the Lord bless you brother. I will stay in touch! Thanks for your support!

__________________

Geno Type 3A  Double TX 1-30-13 2 1/2 week labs VL >43 Lab error on 12 week VL no result

 
Slick Rock Red


Member

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Posts: 7
Date:
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This was round 2 for therapy this time with the Incievk in the mix. I went to the doc yesterday, and she stopped my treatment. She said that the idea is to kill the virus, but not the patient. My ammonia level is at an intolerable level. My skin and eyes are yellow, the brain fog is incredible. I can't remember long enough to string two thoughts together.

I was really hoping to beat it this time. But GOD has different plans at the moment. I will continue to have my blood work done, every 3 months. The U of U is working on a new treatment that will be side effect free, in comparison. It should be available in 1 or 2 years.

Within a month I should be clear headed, and in 2 months or so, I will be back to "normal" Just in time to start thinking seriously about my garden.

I wish you all success in your journey. I enjoyed my short time on this  board, and will highly recommend it to anybody going through the struggle.

Thank you for your unconditional concern and help

God Bless you all

John aka Slick Rock Red



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