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Hep C Discussion Forum -> Post Treatment -> I'm one of the lucky ones!
Post Info TOPIC: I'm one of the lucky ones!
Butcheeyboy


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RE: I'm one of the lucky ones!
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That is GREAT NEWS!!!

Today I am going for my EOT 6 month test.

I have been UND so far and if this test comes back UND,

I will consider myself HEP C FREE!!!!!!smilesmile



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May You Have A Safe Trip & A Successful Journey
dustbear


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Wow those age statistics are amazing Mallani. I'm so glad I am being treated at age 49 then.



__________________

Geno 1A, since 1981. SOT 1/2013   TX stopped 11/2013 in week 45/48 due to Myositis & Interstitial Lung Disease. Completed 94% of Peg-Inter dbl TX, UND since week 4.  SVR 4/2014!  Still SVR after 4+ yrs!

"Day by day, step by step, breath by breath"
Karen


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Hi Malcom... deserving news for both you and your lovely family.

WooHoo..Let the party 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
Bloomster


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Hi Malcolm,

What fantastic news for you and your family.  I felt so thrilled reading your thread and could literally hear the excitement in your post.  I am SO SO pleased for you.  What an absolute victory.  Thank you also for your support and knowledge to those of us on the forum. 

Go live!

Regards,

Caroline



__________________

My husband had genotype 1a, 46yo, started triple therapy (peg/rib/vic) 23rd July 2012, VL prior to treatment 14 million, UNDET 12, 24 weeks, EOT 24th June 2013, EOT +1.5 weeks UNDET, EOT +12 weeks & EOT +27 weeks UNDET; SVR January 2014
Zlikster


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Hi ios9

i was really pissed off about story of Sofosbuvir. There were several posts how young chemist J.Clark that invented that marvelous molecule was stripped off from his patent by his boss who sold complete company (Pharmasset) to Gilead for 11bil $ just cause of Sofosbuvir. His boss pocketed 400mil from that transaction, and Clark got fired and is out of work for last 2 years. Meanwhile Giled will market Sofosbuvir and will prolly cost up to 100k $ for 3 month treatment.

I am pretty getting sick of big pharma fake morality and it's profit chasing thing above value of human life, espec when it comes to antiviral drugs and getting patents extended with tricks.

FibroSure was patented in 2001, i think thats a lot of time by now to get ROI.

I guess i am an idealist...i would be more than pleased to see big pharma out of market and only under goverment dev, let em compete in beauty/cosmetics products! Leave life or death things out of profit chase. Competition doesn't have to be only in $$$. One of my heroes is Dr.Jonas Salk (reading his books lately), a man who invented first polio vaccine and decided not to pursue patent, cause he thought that was a right moral decision. When asked by interviewer who owns the patent:

Edward R. Murrow: Who owns the patent on this vaccine?
Jonas Salk: Well, the people, I would say. There is no patent. Could you patent the sun?


all the best, and sorry about "french" notion (i got a lot of french friends) ;)






__________________

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!
Zlikster


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@ios9, sorry for unkind words. I didn't meant to offend french as a nation, but in my view since it's computer automated analysis by inputing just 6 biomarker results, hence patent is only on algo. It should be free as i see it to all hepatologists around the world. Not 50 EUR for really basic software algo which can be calculated on your own. I do respect patents (in medical field to a degree, but lets not start about it) as return of invested time/money of researchers and "some" profit...but this "patent rights" on such a small calculation formula sounds to me a bit unfair.

cheers






 



__________________

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!
JoAnneh


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Malcolm,
We been on this path what seems a long long time!
I am thrilled You Achieved SVR!

Welcome to being Hep C FREE!
You have helped me cope w treatment.
You are so smart about the medical part 
And gracious enough to share your knowledge
On the forum. I count you as a blessing
in my life and I couldn't be happier for you,
Your wife and family.
I remember what your journey was like and you kept up
The fight and this is a war you WON!!!!!
Oh what a relief that you made SVR! My heart is thrilled!



-- Edited by JoAnneh on Sunday 1st of September 2013 03:46:25 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!
ios9


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Hi Zlikster smile

 

I understand your way of thought. But, being myself author and  journalist, when I see people using freely some of my photos and/or writing, I got mad furious

Intellectual Property has to be respected, and patents are the protection.

50 euros seems a lot, I really do agree with you for that, but I suppose the money goes to the researche, so it's not that bad.

Any way, I do respect your point of few, no worries,

Have a nice w.e.

Do

 



-- Edited by ios9 on Sunday 1st of September 2013 01:51:47 PM

__________________

Geno 1b. VL 17. M. AbbVie Turquoise II. UND EOT 4. 8. 12. SVR.

"Our task must be to free ourselves by widening our circle of compassion to embrace all living creatures and the whole of nature and its beauty."Albert Einstein

 

 

 
joe oil


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Congrats Malcom.peace.gif



__________________

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
ios9


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Hi Malcom,

C biggrin O smile N wink G biggrin R smile A wink T biggrin L smile A wink T biggrin I smile O wink N biggrin S biggrinbiggrinbiggrinbiggrinbiggrinbiggrinbiggrin

 

@    Zlikster :  "sneaky french patent trolls" ? evileye 

Fibroscan is French, ok, but do we really deserve such unkind words?

 

Happy w.e. to all !

Do



__________________

Geno 1b. VL 17. M. AbbVie Turquoise II. UND EOT 4. 8. 12. SVR.

"Our task must be to free ourselves by widening our circle of compassion to embrace all living creatures and the whole of nature and its beauty."Albert Einstein

 

 

 
Dillo


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Congratulations Malcolm,

I know there's a lot of mixed information on the Riba reductions, what is ok and what is not. I questioned my Doctor as soon as he was talking reduction. I know with what it was doing to my kidneys and the anemia and the previous heart problems I had I didn't have much choice and he wasn't willing to risk it if I wanted to complete treatment. All I can do is wait and hope for an SVR. If not I'll just be looking for another tx as soon as I can after.

I did go for an stress test at my cardiologist a week ago and he said my results were better than the one I took before treatment, so I can thank God for small favors.

Best of luck to you in all things.



__________________

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.

Neil_Canuck


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Congratulations Malcolm. I hope to join The SVR crew but will have to wait until December

to get my 6 mths EOT blood work.



__________________

58 yrs, cirrhotic, Genotype 1b 48 weeks Victrelis triple, SOT 7/13/12 victrelis started week 5. Starting VL 4,000,000  Wk 8 33 copies  Wk 24 UND, EOT UND 6 months post Tx DET. The battle goes on.
mallani


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Hi guys,

Thank you for your kind responses. They are much appreciated!

I forgot to thank my Hepatologist. Firstly for accepting a cirrhotic 69 year old as a patient with the limited amount of Victrelis he was allocated, and secondly for keeping me on 1200 mg of Riba/day, despite my constant pleas for a reduction. I know that not everyone agrees, but for a cirrhotic, the best chance of SVR is to maximise your Riba blood levels. To me this means taking the recommended dose with some fatty food as long as you don't become so anaemic that you need a transfusion. Opinions about this are different, particularly in the USA, but here, a Hb of between 9 and 10 is considered desirable. That means you have an adequate amount of Riba in the RBC's to cause the haemolytic anaemia.

I have looked back over past posts, and there have been only 5 Forum Members 65 years of age and over, who have completed Rx. One was on Sofosbuvir/Riba for 12 weeks, one was on SOC for 48 weeks, one was on Incivek for 12 weeks and continued to 48 weeks with Peg/Riba, and one was on the Victrelis triple for 36 weeks, then did another 12 weeks of Peg/Riba. All were probably cirrhotic, but 2 had not had a biopsy, but were told they were 'pre-cirrhotic'.  Unfortunately they all relapsed, soon after finishing Rx.  That's why I say I was lucky. The average age on this Forum is much less than I expected, so it's not a good sample, but I urge all Members to get Rx before they get too old. Thank you all!!!!



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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
Uval951


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Congratulations, Malcolm, very happy for you, you really deserve SVR, forever!



__________________

 

Gen. 1b. 1st Tx in 2003 Rib/Peg. Biopsy F3-F4; 2nd Tx started 2/28/12, Pegasys+RibaPak+Victrelis for 48 weeks. VL: 260,000 (starting), 125,600 (4 weeks), UND-weeks 6-45.EOT 1/7/13 after 45 full weeks. Post Tx 4,12,24 weeks -UND  SVR!
Shep


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Great News Malcolm! Brings tears of joy to my eyes! You are one of those amazing people who keep going and you bring everybody around you up right with you! Wishing you happiness and sending great big hugs!
Shep

__________________

Diagnosed 1996 genotype 1b VL alot tx starting 12/23/11 Victrelis UND week 8!!! 28 weeks of tx

Completed tx 7/6/12--still UND!!!!
ucbgal


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mallani,

     wow is all i can say! the tears of joy & happiness for you are are bountiful on this forum.

     not only is this treatment powerful but our liver has an amazing ability to heal . also you need to be strong,brave and believe in positivity.

     enjoy this day w/ your loved ones.

sandy,ucbgal



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dustbear


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SVR BABY!



__________________

Geno 1A, since 1981. SOT 1/2013   TX stopped 11/2013 in week 45/48 due to Myositis & Interstitial Lung Disease. Completed 94% of Peg-Inter dbl TX, UND since week 4.  SVR 4/2014!  Still SVR after 4+ yrs!

"Day by day, step by step, breath by breath"
Greg


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Congratulations mate,

It's great to see someone walk out of the ring a winner. So very happy for you and your family.

All the very best,

Greg



__________________

The mind is like a parachute it works best when it is open. "The Dalai Lama" My blog: http://greghcv.wordpress.com/
Genotype 1a, started tx 1st Feb 2011, for 48 wks. Week 24 PCR 26/07/11 Non-Responder
New TX start date 12th Sept 2016 Harvoni x24 weeks.  VL 7.4 Mil. Week 4 "Undetected"
hrsetrdr


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mallani wrote:

Hi Guys,

Just got my EOT + 28 week results. Still <15 TND (Undet. for my Lab.) so I'm now happy to call that SVR baby.

 

Congratulations Malcolm!       

svrbaby.jpg

 

 



__________________

"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

 

 
Kellie


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Congrats to you Big M. You give me hope and I love your sensible, down to earth info and advice. Thank you for being who you are and yay for you. No more treatment.



__________________

HCV 1A 1980. Dual tx 2003 -UND at wk 11-discontinued due to severe depression

Started Triple 4/16/13 for 24 weeks

UND wk 4,6,8,12,17 & 24

E.O.T. 9/29/13

EOT + 12 weeks=SVR, and EOT +26 weeks=Cured!
Biggyb


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GREAT GREAT NEWS !!! i also like good news in the morning..

Chalk up another victory for the VICTRELIS team.



__________________

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~
tonib


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Oh what wonderful news! What a warrior you are to do the 48 weeks. I am on the same therapy and just going into week 9, its your posting and helpful information along with others that gives me so much hope and telling me to have faith.

Thank you for all you do!!HIP HIP HOO RAY!!!

__________________

 geno 1, started peg and riba 7/5/13, now 29th day is vicrellis ***tonib VL started 6 million, after 5 weeks 374,000, after 8 weeks 150,000....the big test for VL is 9/27 at 12 weeks  TAKEN OFF THERAPY JUST NOT WORKING FOR ME...12 WEEKS STILL HAVE 9000 VL
Tig


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Congrats Dr. M!!  It's inspiring to read the happiness and joy in your words. My best to you and your family. I'm certain they are thrilled to share in your success, especially that big steak dinner after your implants are finished!! Continued good health Malcolm!



__________________

Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

Signature Line Set Up/Abbreviations   Payment Assistance

 
Caryn


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Congrats Malcolm!!!  



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1a, CT. Incivek triple 1/2013, vl 810 @ 2 weeks, 610 @ 4 weeks, 3000 @ 8 weeks, tx stopped. 

4/2014 - tx with Sovaldi/Olysio/Riba. VL 39 mil. - VL 230 @ 1 week, VL 40 @ 3 weeks, 5 weeks UND, EOT - UND, EOT @ 4 weeks UND, EOT @ 12 weeks UND!
HR


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Great job Malcom!!!! I love reading good news first thing in the morning.



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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
JIme


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Congrats Mallani! Life continues.........Enjoy that beautiful family you have.

Btw, my Dr never liked that test either. Made me get a biopsy and that's what got me on the trial. If we relied on the Fibrosure I would not have been eligible. FYI for anybody counting on that test.

__________________

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

 

 

 

 

 
nikcoh1


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Malcolm I am so happy for you. That is fantastic news and you have worked hard to get there. Congrats!

__________________

Diagnosed 1997, Genotype 1b, unsuccessful tx in 1998 (interferon), 2004 (interferon & riba). Started victrelis/interferon/riba 7/20/2012, finally UND at week 24, will continue for 48 weeks. EOT 6/20/2013 UND, 12 weeks post tx Relapsed
Loopy Lisa


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A big congratulations to you. I can't imagine failing so many times treatment, it must have been really tough. But I can imagine your utter joy at finally being free of this disease. Have a happy, healthy and long life Hep C free! x



__________________

Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 
AngieV123


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Congratulations!!!! What wonderful news.

__________________

Type 1a. Had HCV my entire life via blood transfusion. Did peg & riba in 2000, relapsed. Did triple tx with sovaldi in early 2014 & I am now undetected 
Jumpy


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A big CONGRATULATIONS Malcolm!!!!



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mallani


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Hi Guys,

Just got my EOT + 28 week results. Still <15 TND (Undet. for my Lab.) so I'm now happy to call that SVR baby.

My doc was happy to call me SVR after my EOT + 12w. Undet. but I'm a bit old-fashioned. My heartfelt thanks to all my fellow Forum Members and my gorgeous wife who helped me get through Rx and recovery.

For an old codger who had relapsed after 3 previous Rx's, who has cirrhosis and who has harbored this virus for 43 years, this is a dream come true. I hope older patients with advanced liver disease will take heart from my story. This disease CAN BE CURED!.

My ALT remains slightly elevated at 63, but my GGT and AST are now normal. My AST has not been normal since 1985!   My Alkaline Phosphatase is also normal, for the first time since 2005. My blood counts are all normal, apart from platelets, which are still low at 130,000. The platelets and ALT are part of the cirrhosis, and I hope they will gradually improve. I will have a Fibroscan to see how much my reading has dropped (it was 30 kPa in 2008). I will still need imaging to check for HCC, but I'll now go ahead and get my dental implants, as I'll never be taking Interferon again.

Just as an aside, I had the blood parameters done, and worked out my FibroTest (FibroSure) score. This came in at F2 which is blatantly incorrect. I urge caution in using this test to assess liver damage, although it works for some. A big CHEERS from Australia.!!!!



__________________

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
Zlikster


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Congrats Malcolm! :)

re FibroSure score, i do not think that algo that is found on the wikipedia

6b00ba975108772d951d2497158d4aad.png

547e66299e5f79c160762239acb1f914.png

is exactly what sneaky french patent trolls are using...i guess you can sacrifice 50EUR (cost of it online) and check will you get same result as you did?

I got pretty much same result via FibroSure and FibroScan (F0/1 - 5kPa , A1)...i still have doubts that just 6 parameters can tell exact liver condition.

do you plan to do biopsy again?

all the best man, you really earned it with all those interferon journeys...





 

 

 

 



-- Edited by Zlikster on Wednesday 28th of August 2013 02:07:57 PM

__________________

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!
Cinnamon Girl


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What fantastic news, Malcolm I couldn`t be more happy for you!!!!  CONGRATULATIONS ON SVR!!!!  biggrin   

It`s what I was expecting and hoping for, and certainly what your deserve, as does anyone who goes through a 48 week stretch of treatment with such courage and tenacity.  No more treatment...EVER AGAIN!!! 

You`ve been an absolute inspiration to us all, as well as a huge support for so many here, and it`s been a privilege for all of us to have been able to walk by your side during your journey.  Now you can go ahead and enjoy every day of your life with your lovely supportive wife by your side, knowing you`ve finally triumphed over this virus!! 

You deserve a medal...wear it with pride, you truly are a 48 week hero!!! 



Attachments
__________________

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.

 

 
Matt Chris


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Hey Malcolm
 
BIG CHEERS ,  BIG CHEERS,  and another BIG CHEER
 
Congrats,  if any one deserves SVR it's all that have tried and failed three times, well deserved because of a tremendous effort and will to persevere.
 
Like you said Malcolm it really gives hope to all of us that have advanced Liver disease, in than we can really truly believe that we can cure HCV. Especially with all the coming Meds. in the pipeline.
 
So again it's a sweet personal triumph win for you and you earned it, but even a bigger win for all the HCV patients that will follow in your steps.
 
Malcolm though you may feel lucky, in my opinion it was your never give up attitude and adherence to the treatment that made your luck.
 
Matt



-- Edited by Matt Chris on Wednesday 28th of August 2013 05:50:20 AM



-- Edited by Matt Chris on Wednesday 28th of August 2013 05:51:28 AM

__________________

"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! 
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