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Hep C Discussion Forum -> Clinical Trial Participants -> A journey through the twists and turns of Sofosbuvir/GS-5885 Fixed-Dose Combination ± Ribavirin
Post Info TOPIC: A journey through the twists and turns of Sofosbuvir/GS-5885 Fixed-Dose Combination ± Ribavirin
Biggyb


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RE: A journey through the twists and turns of Sofosbuvir/GS-5885 Fixed-Dose Combination ± Ribavirin
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Nope sunny and nice 82, for awhile. You know Michigan, if you don't like the weather just wait a few minutes it will change.



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58 yo..Relapsed in 99 and again in 2004. Started triple therapy with Victrelis July 22,2012.  genotype 1a. week 8,12,16,24 VL Undetectable..E.O.T -- 6-22-2013,,,EOT + 24., UND. 

SVR !!!

 

~Bob~
Karen


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Hey Bob..How are you doing?  Getting a lot of rain your way?  Basements under water over here!



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Geno Type A1- VL 16.2m - F1-F2 Moderate Fibrosis - Started treatment 4/16/13 Sofosbuvir/Ledipasvir 6 months -  UND week 4 (5/14/13) - EOT 10/1/13 - 12wk blood draw 12/20/13 UND - 24wk/final blood draw March 2014
Biggyb


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Hang in there Karen, you gonna beat this thing. Just go with the flow, sit back and enjoy our great state of Michigan. Good Luck !!



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58 yo..Relapsed in 99 and again in 2004. Started triple therapy with Victrelis July 22,2012.  genotype 1a. week 8,12,16,24 VL Undetectable..E.O.T -- 6-22-2013,,,EOT + 24., UND. 

SVR !!!

 

~Bob~
Karen


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Hi RH...read on another post you are now UND!!!  Congratulations

Hi Jill....You have always been a wonderful support...Always the right words at the right time. Thank you

Hey Matt...Love a good story-This one was spot on!  Thank you.  Last year I drove from MI across country to Oregon with a perfect stranger...Your story reminds me of this trip...It was one of the best, an amazing journey. Thanks for this.

Oh Jim...You have been my inspiration.  The first to try treat w/Gilead and document the journey. You have also had my back several times-as I can get out of line once in awhile.. LOL!  I am actually doing well...Really focused on trying to stay peaceful - Little edgy these days...Ouch!

Dillo..The mind is certainly the enemy right now...Sitting cross legged practicing my "OM"'s ...

Zlikster...Thanks for your support. You did have a tough road in comparison.  A real trooper-an example of courage.

Ckncail..Thanks for the kind and supporting words.  For the first time- I have started to count the weeks..cannot wait until I am counting the days!



__________________

Geno Type A1- VL 16.2m - F1-F2 Moderate Fibrosis - Started treatment 4/16/13 Sofosbuvir/Ledipasvir 6 months -  UND week 4 (5/14/13) - EOT 10/1/13 - 12wk blood draw 12/20/13 UND - 24wk/final blood draw March 2014
Ckncali


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Hi Karen, Congratulations on hitting the half way point. That sure is a long trial you are on but at least you don't have to do the RIBA. And with 24 weeks you should be almost guaranteed a cure. Hang in there and know the road is all down hill from here. Take care.



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GT1A, Currently on 8 weeks Sof/Led with RIBA (ION3) 
Zlikster


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go Karen! half way there



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GT 3 dg. 08-2012 / FibroScan: 5 kPa F1 / FibroTest: F0-1 A1 / SoC TX: PegInt 120mcg+Riba 1000mg UND from w8 relapse EOT+4w
01-2016 Sof+Dac+Riba UND from w8, SVR24!
JIme


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Way to go Karen. How are you feeling?



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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

 

 

 

 

 
Dillo


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Congrats Karen.

Love the description Matt "It mostly will be a battle of the mind from here to the finish"  I think mine has been winning the battle more than me lately...a good nap does help sometimes.

Onward through the fog.



__________________

GT 1a Started triple tx with Incivek, Pegasys, and Riba 2-6-2013. UND at 4,6,12,23,& 24 wks EOT 7-26-2013. Probably had Hep C for 20-30 years. Don't really know when I got it.

Cinnamon Girl


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Well done Karen, half way through!  Doing 24 weeks of tx is no walk in the park, and it`s bound to feel like it`s going slowly at this mid-way point.  You`re on the downhill slope now though...concentrate on planning that big celebration party, we`ll all be cheering you on at the finish line!  And at least not so many visits to the nurse now, although we were enjoying your stories!  wink

Take good care, it will all be worth it in the end! 



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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.

 

 
HR


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Halfway there!!!! Great job!!!

I read yours and Jime posts about 50 times before I started my trial..:)

I will be halfway tomorrow as well. We have a close baseline VL so I hope I was Und on my 4th week blood draw. It looks like that is where you went Und 

 

take care



__________________

ION-3 Trial- Sofosbuvir/Ledipasvir 12 weeks.. UND 4 weeks, relapsed 12 week EOT. 

3-4 on Ischank scale

 

Retreat ION-3 Trial- Sofosbuvir /Ledipasvir 24 weeks

GT-1 (1-31-14) Week 1 VL 62 -Week 4,8,12,16,20 UND EOT 7-18-14
Karen


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12 weeks gone, another 12 to go..  Started my first day of the next twelve weeks, today. 

This visit, the study nurse got down to business-had a full physical-EKG, weight, lung and abdomen check, blood and a whole lot of questions, was there for over an hour.  Future visits are now once a month, I like that!

I would like to say it has been a fast 12 weeks but it would be far from the truth...it has been long.  The study nurse did share with me that we would not know the results of all of this until 4-12 weeks after the meds are stopped. This is the first time I can remember where I wished time would pass by quickly...just plain tired of all of this.  

I think it is time to start planning a big "party" for March 2014.  What better way to celebrate the end of winter and the conclusion of this chapter!!

Special thanks to everyone for their support...let the next 12 begin!!!!



__________________

Geno Type A1- VL 16.2m - F1-F2 Moderate Fibrosis - Started treatment 4/16/13 Sofosbuvir/Ledipasvir 6 months -  UND week 4 (5/14/13) - EOT 10/1/13 - 12wk blood draw 12/20/13 UND - 24wk/final blood draw March 2014
Matt Chris


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Hey Karen 

Congrats on making it to the half way mark.

Its like a long road trip in the car, you now have made it out of the city out your state and reached the open spaces of the west where there few stopping points but a beautiful serene vistas. Like coming to the beginning of a desert valley and being able to see for 50 miles in the distance. You know where you have been and the route ahead has no obstructions that limit your goal.

As the coming weeks move on the more you will see the finishing point and nothing will deter you, you have not come this far to turn back in anyway. You have the cruise control on and the road is strait as an arrow.

It mostly will be a battle of the mind from here to the finish, and I know you have the spirit to win. Just keep on believing Karen your going to make it.

Matt

 



-- Edited by Matt Chris on Wednesday 10th of July 2013 12:46:32 AM



-- Edited by Matt Chris on Wednesday 10th of July 2013 12:48:15 AM

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"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 
Karen


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Hey Randy...It is just so hard to stay away from ice cream until moments like this ...(laughing just a little cause I was with a friend tonight and he insisted on a very small bowl of ice cream-great idea not so good results)  Hope your feeling better tonight...No more ice cream!!!biggrin.gif



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Geno Type A1- VL 16.2m - F1-F2 Moderate Fibrosis - Started treatment 4/16/13 Sofosbuvir/Ledipasvir 6 months -  UND week 4 (5/14/13) - EOT 10/1/13 - 12wk blood draw 12/20/13 UND - 24wk/final blood draw March 2014
HR


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Karen

I figured out why I shouldn't eat ice cream. I woke up at 11:30 last night and it felt like my horse kicked me in the stomach. I was warned.:)

Take care

Randy



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ION-3 Trial- Sofosbuvir/Ledipasvir 12 weeks.. UND 4 weeks, relapsed 12 week EOT. 

3-4 on Ischank scale

 

Retreat ION-3 Trial- Sofosbuvir /Ledipasvir 24 weeks

GT-1 (1-31-14) Week 1 VL 62 -Week 4,8,12,16,20 UND EOT 7-18-14
Karen


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Hi Malcolm...Thanks for adding to the list.  And yes, I am having much better days than before.  I do believe there were blood sugar issues... so making sure I am more in tune with when I need to eat.  This has helped a great deal with the shakiness and sudden fatique. 

So how are you doing?  It has been great fun to see the different photos posted of your trip.  Would love to see and hear more.  Might be a good time to start a travel post...what do you think?

 



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Geno Type A1- VL 16.2m - F1-F2 Moderate Fibrosis - Started treatment 4/16/13 Sofosbuvir/Ledipasvir 6 months -  UND week 4 (5/14/13) - EOT 10/1/13 - 12wk blood draw 12/20/13 UND - 24wk/final blood draw March 2014
mallani


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Hi Karen,

Enjoyed your reasons for not wanting jury duty. At 10 weeks, I would have added 'I cannot stay awake long enough'.

Sounds as if 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
Karen


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Week 10...I guess I will always find a way to humor myself through this process, today is no different.   My new study nurse is very straightforward business like.  When I arrived, she asked to see my pills and my diary.  Oh boy here we go again, what diary????  She looked at me with little expression and stated, "wrong study". As for the blood sugar theory, she just said, "could be"... OK now!   

Oh, I found this amusing as well...As you will read it takes very little to humor me these days. I have also been requested to serve on "juror duty".  I asked the study nurse if I could get a statement from the doctor to excuse me this time-She said they do not do that!  She wants to know why I cannot serve, I gave her a list...

1. If sequestered, I cannot come for my appointment 2. I have a bit of brain fog and would not want to convict an innocent person because I missed something   3. Just little tired these days-I can see the judge now...Juror number 3, we cannot have you falling asleep in the middle of the trial.  4. Last but no least, excusing myself because I need to take my medication "on time".    Lets see...what else can we add???

On a serious note...Please be your own advocate, if for some reason you are unable-find someone who can.  This is not just for trials but also for any form of medical care.  Do your homework, know what to expect, don't just trust that the person in charge is grander than you and has all the right answers.

Thanks everyone...hope this day is a good one!



__________________

Geno Type A1- VL 16.2m - F1-F2 Moderate Fibrosis - Started treatment 4/16/13 Sofosbuvir/Ledipasvir 6 months -  UND week 4 (5/14/13) - EOT 10/1/13 - 12wk blood draw 12/20/13 UND - 24wk/final blood draw March 2014
Karen


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Hi Matt, 

Thanks for the recommendations...I am a big foodie-cook every day from scratch.  Love it!  I do not even own a microwave-shocking. What you have listed is pretty much the way I currently eat (vegetarian for 20yrs), plus I graze all day, which is ideal for blood sugar.  That is why this is a little puzzling.

Glad to read your words...waiting to hear your results.  Hang in there-you got what it takes to carry you though all of this..

K



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Geno Type A1- VL 16.2m - F1-F2 Moderate Fibrosis - Started treatment 4/16/13 Sofosbuvir/Ledipasvir 6 months -  UND week 4 (5/14/13) - EOT 10/1/13 - 12wk blood draw 12/20/13 UND - 24wk/final blood draw March 2014
Matt Chris


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Hey Karen 

Congrats on the 8 week report, you have many more to come.

You should consider slow releasing carbs

Slow-release carbohydrate foods -- carbs that are absorbed slowly and keep your blood sugar steady

Foods like Whole Grains

Your body digests whole grainsicon1.png more slowly than refined grains, which have been stripped of their bran, germ and fiber, and are absorbed almost as quickly as pure glucose. Whole grains -- barley, oats, brown rice, wild rice and bulgur -- and products made from whole grains, such as whole-wheat breads, bagels, pasta and crackers, and 100 percent bran cereal -- provide a slower, more sustained source of energy that keeps your blood sugar stable. Quickly absorbed, refined carbohydrates are linked to Type 2 diabetes, heart disease and weight gain, notes the Harvard School of Public Health. Whole grains may decrease your 

Fruits and Vegetables

Most fruits and vegetables are slowly absorbed carbohydrates that have minimal effect on your blood sugar and insulin levels. Eat dark green vegetables, such as spinach, kale and broccoli; and orange vegetables, such as squash, pumpkin sweet potatoes and winter squash. Vegetables that are quickly absorbed include white potatoes, corn and parsnips. Whole fruits are preferable to fruit juice, which is absorbed rapidly due to its lack of fiber.

 

Beans

Not only are beans an excellent source of slow-release carbohydrates, they're also a good source of protein and fiber, which slow the digestive process further. Beans -- like whole grains, and most fruits and vegetables -- have a low glycemic index, a measurement that gives information on how a food affects blood sugar and insulin levels. Include lentils, garbanzo beans, black beansicon1.png, pinto beans and other beans in your diet for sustained energy and reduced risk of chronic diseases like Type 2 diabetes and heart disease.

BTY thanks for all the great caring thoughts you mentioned about my situation.

Matt



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"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 
Ckncali


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Karen, How low is your glucose? I know what you mean about worrying about getting kicked off the trial. I worried about it before I even started that somehow I would get bumped, then worry if I tell them my symptoms they will say I have to stop. I think the trial folks want us to be successful so will try to keep you on the trial unless it becomes too dangerous. it is ok to discuss your concerns with them. They won't boot you for that. I remember you gave advice about eating several small meals thru out the day. Are you doing that?



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GT1A, Currently on 8 weeks Sof/Led with RIBA (ION3) 
Karen


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Received my 8 week blood work today still UND.  Glucose was on the low side-which may explain the edgy, shaky, tired feeling I have been experiencing.  I will attempt to have this discussion with the study nurse next Tuesday-hope I do not get booted off the trial.  

 Anyone else on the Gilead trial having low blood sugar issues?

 



-- Edited by Karen on Friday 21st of June 2013 02:48:55 AM

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Geno Type A1- VL 16.2m - F1-F2 Moderate Fibrosis - Started treatment 4/16/13 Sofosbuvir/Ledipasvir 6 months -  UND week 4 (5/14/13) - EOT 10/1/13 - 12wk blood draw 12/20/13 UND - 24wk/final blood draw March 2014
Karen


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Hi Bill,

I must say, I will miss the nurse stories.   It was a great distraction for what I was really there for...

My new nurse has no...sense of humor, very dry...but very professional so I will have to find a new focus to write on.

I am doing well...A few new side effects but nothing relative to others.  Started with mouth sores about 5 days ago..

Have not seen any blood work for 4 weeks. My first nurse left before sending them out and the current nurse has not reported on the ones from last Tuesday...I would imagine if there was something to worry about I would have heard by now...or...maybe not!!

How are you doing???

Karen

 



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Geno Type A1- VL 16.2m - F1-F2 Moderate Fibrosis - Started treatment 4/16/13 Sofosbuvir/Ledipasvir 6 months -  UND week 4 (5/14/13) - EOT 10/1/13 - 12wk blood draw 12/20/13 UND - 24wk/final blood draw March 2014
Karen


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Look forward to hearing "great" numbers...:)



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Geno Type A1- VL 16.2m - F1-F2 Moderate Fibrosis - Started treatment 4/16/13 Sofosbuvir/Ledipasvir 6 months -  UND week 4 (5/14/13) - EOT 10/1/13 - 12wk blood draw 12/20/13 UND - 24wk/final blood draw March 2014
Bills


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Hi Karen

LOL I like your nurse stories and the answers. I have a few too. After all this how can we not just loose it act a little crazy. How many times did I just want to laugh in their face. Or make unpleasant sounds. some of them just don't have a sense of humor.  

Sounds like your doing well and hope blood is good as well.

Bill S  



-- Edited by Bills on Tuesday 18th of June 2013 07:06:25 PM

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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.

52baddog


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Hi Karen:

I will be getting my first week test result tomorrow, I will keep you posted. I don't know my baseline viral load.

I will post all the blood test results tomorrowbiggrin



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Geno type 1b, F1 vl 640,000 enrolled in Gilead's sofosbuvir/ledipasvir -week 1 66, week 2 <25
Karen


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Hi Nancy,

Yes...I do get tired very easily but not wiped out like before the meds.  I was kind of surprised w/this edgy feeling after 6 weeks... I have to keep reminding myself that I am on drugs, drugs do cause side effects although minor-should be expected.

How are things going for you?



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Geno Type A1- VL 16.2m - F1-F2 Moderate Fibrosis - Started treatment 4/16/13 Sofosbuvir/Ledipasvir 6 months -  UND week 4 (5/14/13) - EOT 10/1/13 - 12wk blood draw 12/20/13 UND - 24wk/final blood draw March 2014
52baddog


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Hi Karen:

I think some of the nurses are just mean, and some are real nice. Hopefully, this one will treat you better. I have noticed that I get 

really tired. I just took my 10th pill. Do you get tired?



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Geno type 1b, F1 vl 640,000 enrolled in Gilead's sofosbuvir/ledipasvir -week 1 66, week 2 <25
Karen


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Week 8-for the last two weeks I have noticed that I am very edgy...like I am on major caffeine, little shaky.  Need to eat often.   This is very unusual for me, not able to relax.  Someone actually called me "mean"...must have learned bad habits from my trial nurse (laughing). 

This weeks visit was nothing short of amazing, I now have a new trial nurse.   Yep! The prediction has come true.  The mean nurse has left...headed back home-look out Colorado.  Because of the "change up", the nurse had no information on my viral load-could not find the paperwork.  She also told me that I only needed to come once a month from now on, hummmmm!  I explained my schedule, that I am supposed to come every two weeks and that I just signed new paperwork allowing for EKG's and weight checks every other visit.  God almighty, sure glad my brain fog is at a minimum and I sort of know what is going on. 

I am convinced that all the unexpected craziness is intentional...Great strategy for refocusing the participants on something other than themselves and coming away with stories to share. 

 

 



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Geno Type A1- VL 16.2m - F1-F2 Moderate Fibrosis - Started treatment 4/16/13 Sofosbuvir/Ledipasvir 6 months -  UND week 4 (5/14/13) - EOT 10/1/13 - 12wk blood draw 12/20/13 UND - 24wk/final blood draw March 2014
Matt Chris


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Hey Karen that's "Super Fantastic"

it can be a Life changing moment and from that day onward the mental aspect changes.

did nurse Ratched tell you the news?

Try to kill her with kindness, she won't be expecting it and you will win her over.

Anyway I am very happy for you

Matt

 



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"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 
Karen


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Thanks Malcolm!

I think that is a grand idea.  

 



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Geno Type A1- VL 16.2m - F1-F2 Moderate Fibrosis - Started treatment 4/16/13 Sofosbuvir/Ledipasvir 6 months -  UND week 4 (5/14/13) - EOT 10/1/13 - 12wk blood draw 12/20/13 UND - 24wk/final blood draw March 2014
mallani


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Hi Karen,

Fantastic news! Keep it up. Tell your nurse to get stuffed! Cheers.



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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
Karen


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Thanks Jill...

I am trying to conduct myself like a lady until I get further into the trial...afraid the nurse will steal my drugs.  She is young and has only been in the business for 4 years....my guess, she will not last!



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Geno Type A1- VL 16.2m - F1-F2 Moderate Fibrosis - Started treatment 4/16/13 Sofosbuvir/Ledipasvir 6 months -  UND week 4 (5/14/13) - EOT 10/1/13 - 12wk blood draw 12/20/13 UND - 24wk/final blood draw March 2014
Karen


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Vern...Little does she know...the tip of my tongue is nearly missing from biting down so hard.  Thought the blood scene was a bit of karma.

Thanks for a good laugh...As I have said before, you need to start selling your humor..LOVE IT!

 



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Geno Type A1- VL 16.2m - F1-F2 Moderate Fibrosis - Started treatment 4/16/13 Sofosbuvir/Ledipasvir 6 months -  UND week 4 (5/14/13) - EOT 10/1/13 - 12wk blood draw 12/20/13 UND - 24wk/final blood draw March 2014
Cinnamon Girl


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Wonderful news, Karen, really pleased you`ve got your UND!!  You must be overjoyed, despite having the worst nurse ever... I get the feeling she`s in the wrong job!  Good job you can see the funny side of it anyway, and I would definitely take Vern`s advice!  biggrin

Congrats Karen, keep us posted!



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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


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Karen, happy for you. But sad that you have to deal with socially impaired nurse. Find out which one of her parents was alcoholic and why she is going through life treating folks like crap. Caregivers can be there for more then medicine. 99.9% of them seem to have excess TLC to share with others.

I'd encourage you to learn how to write swear words on the rough of your mouth with your tongue. That way you can have a smile on your face while telling her to **** off!



__________________

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.
Karen


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Nancy...thank you so much! It is a little crazy to imagine.



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Geno Type A1- VL 16.2m - F1-F2 Moderate Fibrosis - Started treatment 4/16/13 Sofosbuvir/Ledipasvir 6 months -  UND week 4 (5/14/13) - EOT 10/1/13 - 12wk blood draw 12/20/13 UND - 24wk/final blood draw March 2014
52baddog


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Karen: I am really happy for you.



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Geno type 1b, F1 vl 640,000 enrolled in Gilead's sofosbuvir/ledipasvir -week 1 66, week 2 <25
Karen


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Thanks Zlikster...pretty amazing!

 

 



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Geno Type A1- VL 16.2m - F1-F2 Moderate Fibrosis - Started treatment 4/16/13 Sofosbuvir/Ledipasvir 6 months -  UND week 4 (5/14/13) - EOT 10/1/13 - 12wk blood draw 12/20/13 UND - 24wk/final blood draw March 2014
Zlikster


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go Karen! )) who cares for annoying rude nurse...UND @ 4w! Woooohooo ;-D



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GT 3 dg. 08-2012 / FibroScan: 5 kPa F1 / FibroTest: F0-1 A1 / SoC TX: PegInt 120mcg+Riba 1000mg UND from w8 relapse EOT+4w
01-2016 Sof+Dac+Riba UND from w8, SVR24!
Karen


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4 weeks UNDETECTED! 

ALT 17

AST 28

I am over joyed with this news...and grateful.

Ok,..always an interesting visit to the study nurse.  She is just so "mean".   I did as I was told and kept a lid on any dialogue that would get me trouble, so I thought (laughing-just cannot stay out of the line of fire).  She asked me the usual questions, if I am still having fatigue, foggy brain, and nausea.  When I tried to explain that these side effects were lessening, she snapped..."just state yes or no, that is all I need to know", so that is what I did.  Then she wanted to know what days I was experiencing these symptoms.  Well now, I did not know I was supposed to keep a diary, she keeps telling me she does not need to know anything...SIGH! 

If I was not on the annoyance list after that, I probably am now. After my blood draw...the nurse went to count my pills.  When she came back she got a little surprise...  She found me at the sink with the bandage soaked in blood and blood running down my arm-I mean lots of blood.  Looks like my vein was not a happy camper today, she had a little bit of a mess to clean-up... Just have to find the humor in all of this..

On the amazing side, feeling better UNDETECTED-THANK YOU EVERYONE.   Hope this is what the future of Hep C looks like...Well...minus the study nurse stories.wink.gif

 



-- Edited by Karen on Tuesday 28th of May 2013 06:14:27 PM

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Geno Type A1- VL 16.2m - F1-F2 Moderate Fibrosis - Started treatment 4/16/13 Sofosbuvir/Ledipasvir 6 months -  UND week 4 (5/14/13) - EOT 10/1/13 - 12wk blood draw 12/20/13 UND - 24wk/final blood draw March 2014
Loopy Lisa


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biggrinYou go girl! A lot of people feel down even without Hep C, do they really expect you to be jumping up and down and happy as a puppy with a treat? You did make me smile about not getting the drugs back! :D x



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Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 
52baddog


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Wow, Karen I am glad you shared this with us. I am supposed to go on the same clinical trial here in Texas.

I hope you feel better soon.disbelief



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Geno type 1b, F1 vl 640,000 enrolled in Gilead's sofosbuvir/ledipasvir -week 1 66, week 2 <25
Matt Chris


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Hey Karen 

That's the Spirit!, tell them this means everything. The normal trial nurse and most Doctors just really can't relate and understand what we are going through even though they see it on a regular basis.

Compassion for another human being is something we all have to learn, and sometimes we have to experience a major crisis health or otherwise to be able to relate.

The ebb and flow of being on a Trial with Meds is undiscovered country.

The advise that Malcolm gave is wise, poor out your soul to us that understand and choose and reveal your words carefully and your thoughts wisely to those that can't.

On our study we fill out a Phych form for the study people to gage our mental state and thats all that is necessary.

Your un-detected is right around the corner so keep up your spirit and build your immunity system for your EOT.

Matt

  



-- Edited by Matt Chris on Thursday 16th of May 2013 02:13:52 AM

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"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 
mallani


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Hi Karen,

Tell your Trial people you feel great! Then come on the Forum and tell us how you really feel.

You've had enough problems last year to make anyone depressed. It is great that you were excluded from the earlier Trial that included Peg and Riba.- this is a much better Trial, and you'll get your SVR.

Treatment is a struggle and knocks us about emotionally. The new drugs may have less physical Sx but the mental aspect remains. Just tell yourself that soon you'll be free of the virus, and be able to get on with life.

The most important thing is to finish the course of drugs. We're here for you. Cheers.



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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
JoAnneh


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Karen! We are here for you! So proud of you

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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!
Karen


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You guys/gals are the best...xoxox



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Geno Type A1- VL 16.2m - F1-F2 Moderate Fibrosis - Started treatment 4/16/13 Sofosbuvir/Ledipasvir 6 months -  UND week 4 (5/14/13) - EOT 10/1/13 - 12wk blood draw 12/20/13 UND - 24wk/final blood draw March 2014
Zlikster


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wow week 2 VL 2 IU/ml! ;-D go Karen! complain to us as much as u want don't break down in front of docs n nurses ;)



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GT 3 dg. 08-2012 / FibroScan: 5 kPa F1 / FibroTest: F0-1 A1 / SoC TX: PegInt 120mcg+Riba 1000mg UND from w8 relapse EOT+4w
01-2016 Sof+Dac+Riba UND from w8, SVR24!
JIme


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Note to self: Do not ask Karen how she's doing in front of her trial nurse. Got it!

Wow, I guess they want you to skip in there and tell them all is well every time.?

Tell them your good but tell us the truth. We can handle the truth.....lol......

This is emotional ground we are all treading on and I can't believe they aren't aware of that.

Week two numbers look gooooooood!!!!!!!

Keep sharing with us Karen. We know where you are.



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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

 

 

 

 

 
Karen


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Warning..this is a warning-do not breakdown in front of your trial/study nurse.  Went for my four week blood draw, when the study nurse asked how I was doing..I broke down-still struggling..CRAP!  She stated that since this was not my base-line-it means the meds are having a negative impact and they would need to pull me off.  I explained to her, that I just hit the wall this week-feeling sorry for myself and this shall pass.  I asked her to please move on, that I would be alright-she said she would have to share this information with the doctor.  I told her that even if I had to lie I was not coming off this trial.  I do get it...this is a trial-the last thing they want to report is intolerance of these meds...guess they do not take into account that this is life! What a same, it is ok to feel happy but when your feeling blue you better "suck it up"! Good news, she gave me pills for the next four weeks and she is not getting them backbiggrin

Week two blood work:

Viral load 25IU/ml

ALT 19

AST 28



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Geno Type A1- VL 16.2m - F1-F2 Moderate Fibrosis - Started treatment 4/16/13 Sofosbuvir/Ledipasvir 6 months -  UND week 4 (5/14/13) - EOT 10/1/13 - 12wk blood draw 12/20/13 UND - 24wk/final blood draw March 2014
dragonfly


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Hang on in there - you will make it because you are strong. 

Dragonflyx



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