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Hep C Discussion Forum -> General Discussion -> Did my doctor make mistake on duration??
Post Info TOPIC: Did my doctor make mistake on duration??
news


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RE: Did my doctor make mistake on duration??
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Yeah, Joanne, my doctor increased my total treatment time to 36 weeks just because I was not UND at 4 weeks. THey didn't tell me until about week six, and I was so sick by then I didn't even care. I just nodded my head and thanked everyone and walked out of the office. Later, Malcolm and I were chatting with some others on this forum and it came to light that most doctors were going to 48 weeks for cirrhotics who were not UND at week 4. I asked my doctor about it the next time I saw him, and he flatly admitted that he would have gladly gone to 48 weeks if I had asked for it. I just looked at him and wagged my head. There was no way I could have known to request twelve additional weeks of misery. As it turns out the 36 weeks may have been enough. We'll see in January. But I admit I have had my doubts and wondered if I should have done the longer treatment.

Alan



__________________

Geno 1A  Started Pegasys/Ribavirin/Incivek Nov. 20, 2011 .  Completed July 28, 2012 (36 weeks). For a treatment history, see:  https://jshare.johnshopkins.edu/xythoswfs/webview/_xy-9921874_1

SVR on January 14, 2013!!
JoAnneh


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Oh Alan, we will ALL be mad at that doctor
If you don't get SVR! It's like who is the patient
And who is the doctor!!!!
Just think in few more weeks you can hopefully,
And Prayerfully post SVR by your forum
Name, until then we must enjoy the distractions
Of tx with the joys of Christmas!
We all go thru this together and care!
U been a great help to me so many times.
Merry Christmas and thanks for your reply!

PS. I can't get my photo up as I thought time
For a change... I will eventually. Lots going
On for Christmas..... It will help time past for us both


-- Edited by JoAnneh on Sunday 9th of December 2012 02:24:14 AM

-- Edited by JoAnneh on Sunday 9th of December 2012 02:24:54 AM

-- Edited by JoAnneh on Sunday 9th of December 2012 02:25:50 AM

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JoAnne

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

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


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Malcomb,
I am not sure about VL at 4 weeks
I will look and let you know.
I had my gallbladder removed 2 years
Ago and liver bio was taken.
I was between stage 1-2 in 2001.
I am very compensated but appears
The amazing organ is still functioning normally.
It explains the extreme fatigue I was experiencing
Before tx.
Thank you for the time and effort to educate me
On importance of 'giving the liver a break'.
It was very encouraging.
I figured the med damages the liver
As it is so strong!
I have had Hep C for 37 years.
U r such a great leader for us on
The forum. U even helped me see the
Importance of ultra sound every 6 months.
Thank you kindly Malcomb! Xxoo

__________________

JoAnne

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

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


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My NP told me she is fully aware of the data and has taken classes
About it. She said let her do the worrying
And me get thru tx!
I tore of the info and have moved on
Dear friends! Thanks again for all
The comments. Xxoo

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JoAnne

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

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


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Hi JoAnne, I am surprised that you don't think your liver is getting a break. Before Rx, you would have had up to a trillion viral replications a day. Imagine how your hepatocytes coped with this. The HCV cuts off bits of hepatocyte cytoplasm to replicate, causing damage and death, releasing cytokines that cause inflammation and fibrosis. All this has STOPPED. The liver has a remarkable ability to heal itself- old and dead hepatocytes are resorbed, new hepatocytes are formed and collagenases start repairing and resorbing the fibrous tissue. I believe that, in my case, my liver will revert to how it was 5 years ago, or even more. So, although SVR is the aim, I will not be distraught if it doesn't happen.

You were Undet. at 2, 6, 12, and 24 weeks. I would ignore the 4 week result.  Did you get a VL reading at 4 weeks?  Was it >1,000?  Unfortunately the 4 result has resulted in a longer period of Rx. Remember Alan ('News') had to do 36 weeks because he was not Undet. at 4 weeks- he is all but home! The Undet. shows you are sensitive to the drugs.

You have never mentioned how the diagnosis of cirrhosis came about. Presumably you had a liver Bx - do you remember the report? In a fairly young female, cirrhosis is less likely and I have always been surprised that you describe yourself as cirrhotic. Assuming you are, given the above results, your chance of SVR is excellent. Don't worry, you're doing great.



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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
Mary Jane


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JoAnneh wrote:

I am praying that 2wk UND helps me beat this
Virus!
I go to NP tomorrow for monthly check up
And going to give her print out as
She is so busy treating patients w hep c.
This forum is a research study in itself!
Thanks for all the care and support!
Xxoo, JoAnne

-- Edited by JoAnneh on Sunday 2nd of December 2012 09:21:21 PM

 praying for ya hang in there Joanne...MJ



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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
marktrux


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I think for partial responders and relapsers it is recommended to go the full 48 weeks. I understand that our Drs and NPs have a lot a patients and cant always remember every detail of our past, there are alot of details in my past that i cant remember, and i lived  it. Sometimes my Dr will mis-speak about some of the details of treatment and i just kinda look past it. I know he's doing everything he can. Thats why it's so important for us to educate ourselves and this forum is a great place to learn.



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KCCO

 

 
joe oil


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My NP told me I must do 48 beceause my ultr sound showed cir.just before tx. even though the boipsy did not, 6 mo. earlier.

I been und since wk 4, didn't do a 2 wk.  I go to a liver center, thats all they do, I trust them and compaired to what we all went through with the Incevik the rest is a cake walk. Your making the safest move.( my opinion)

 



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58yr m/G 1A/ VL 9,000,000 / F 3  / STARTED TRIPPLE TX (Incivek)7-14-12 / UND WK-4-8-12-16-20-24-36- 48- 12 weeks post tx UND. SVR 1-10-14
2willy


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I agree before taking me off treatment  the doctor said it is all guess work with the trx theraphy, I think he told me this as he was packing his golf clubs and going on a 8 day cruise afterwards with some drug company buddies.  This web site has been rated for information and experience by a number of practioners as # 1.  Sad part is that they are over worked not under paid and do not have time to research any no drug company data.

Bill and Family



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Geno type 1  rib and peg September 2012 , 5 weeks tripple and viral down to < 15 und april Aug 25 finished stay at peg 3 rib and eprex + blood transfussion finished treatment Aug 25 2013
12Step Guy


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JoAnneh, you go girl. Give'em H*ll. I'm all for it. Not sure if 24 or 48 is best for you or not. As always, we are stuck between a rock and hard place. How are the current outcomes from folks like us, being used? Are clinical studies the only indictors? And how much ******** are we being fed by the pharmaceutical companies using so-called promising information to attract shareholders?

 And what about folks who have had to stop Rx early because we came back Det or stopped for other health reasons? How much of our new health issues are related to Rx ?

 We should make them all spend a little time with Captain B. Rash. Those that didnt walk the plank, werent keelhauled or chained to an oar; would be used as shark detectors for the evening skinny dip hour.



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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.
JIme


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Hey JoAnne, How are you today? I agree that we know more about these new tx than many NP's and Dr's out there. In fact, my gastro Dr. said as much to me last year. He said he can not concentrate on just Hep C as he treats many other diseases in his practice. He encouraged me to go to a specialist and when I found my NP he was very supportive. I got lucky. I'm not sure about your situation but I remember my NP telling me to call the Incivek people directly if I had any questions at any time. I have the number here some where. I post it when I find it.

I do believe if your VL is zero and your liver is not dealing with the virus, it has to be good your your liver. ( My poor liver did not get a break for over 35 years....he was happy I was on tx........lol )

It seems you are resigned to doing the 48. I wouldn't get caught up in the details of what if's but hey your entitled to do what you like. It's a free country right?...........

God bless you and have a great day.

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jim

GT1a, St2 Lv2 last biopsy 2002, VL  11.4m,  start triple tx 9/30/11

VL 470 @4wks.....VL 22,000 @8wks  stopped tx

Round 2-  Started 3/16/12   PSI-7977, BMS-790052, Riba Undetectable day 14

Did 24 weeks Still UND 12 weeks post tx, SVR24!!!!!!! 2/14/13

 

 

 

 

 
JoAnneh


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I am praying that 2wk UND helps me beat this
Virus!
I go to NP tomorrow for monthly check up
And going to give her print out as
She is so busy treating patients w hep c.
This forum is a research study in itself!
Thanks for all the care and support!
Xxoo, JoAnne

-- Edited by JoAnneh on Sunday 2nd of December 2012 09:21:21 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!
JoAnneh


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Anyone on forum have DET at 4 wk on Invicek?? I was UND 2 wk, DET 4, UND 12, 24. According to the Invicek company website I should have been taken off all meds at 4 wk! Since doctors are still learning about these Treatments, I think it's important to be aware And ask your doc tor questions. I am previous partial responder 11 years ago, Have cirrhosis and genotype 1a! When I came back UND at 2 week, doctor Told me tx would be 24 wks. Naturally that changed to 48 wk after DET at 4 week. AGAIN, according to Invicek duration fact sheet: I should have NEVER been considered for anything but 48 weeks since I have cirrhosis. http://www.incivek.com/hcp/treatment-duration-treatment-history I am too far into tx to stop now 29 of 48 I am praying since I had 2 wk UND that it will Play in my favor. I am not one who believes by being on tx Gives my liver a break. I feel a responsibility to those behind me We need all education we can get! I promise u my NP doesn't study Hep C as much as we all do. She treats symptoms more than anything. She hasn't ever heard of Journal 7977 either! If anyone has achieved SVR on Invicek w Cirrhosis, and UND 2, DET 4 week please let me know! I will show my NP this fact sheet on my next visit. I will continue to pray for the miracle SVR! JoAnne

-- Edited by JoAnneh on Sunday 2nd of December 2012 02:37:05 PM

-- Edited by JoAnneh on Sunday 2nd of December 2012 02:37:56 PM

-- Edited by JoAnneh on Monday 3rd of December 2012 12:49:13 AM

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JoAnne

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

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