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Tig


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RE: Whats Next?
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Hey Rickk,

Wow! That was a quick turn around. I'm so happy to hear you were approved! When you're ready to start treatment, we have a great thread established for all of our Harvoni people. We call it the " Harvoni Train", and you are welcome aboard! Stay in touch...

http://hepcfriends.activeboard.com/t58762824/all-aboard-for-the-harvoni-treatment-train-enjoy-the-ride-fo/?w_r=1424495011#lastPostAnchor

Tig



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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!

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Rickk


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Thanks everyone for your encouragement. The insurance co finally approved my treatment so I will start the Harvoni tomorrow.   
Im going to start a new treatment post . Wish me luck. Thanks Rick



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Tig


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Hi Rickk,

Sorry you have been denied twice, but there is a bright side to that. You need to contact Gilead's Support Path Assistance program right away. After two denials, they will work hard to get you the treatment you need, at little or no cost. Your doctor will need to work with you, but he shouldn't be unwilling to make a call and authorize treatment. We have many people here that have gone that route and were surprised to find out how easy it was. Use the "Payment Assistance" link in my signature to find it. Give them a call today! HTH...

There's little excuse for all of the paperwork errors, stay on them and find out what needs to be sent in and confirm it. Be your own best advocate! Good luck...

Tig



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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!

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Rickk


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Long story short I have been rejected for treatment 2 times so far. The last rej letter said reason for rejection was left blank (No boxes checked) another reason was they claimed I failed to sign a faxed paper. I also had to sign a contract stating I would not drink or do illicit drugs during treatment. Not a biggie. I have been clean and sober for 20 years. I will keep you guys posted



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Rickk


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I was being pushed to use my Dr's Pharmacy. At my Jan 13 visit I told him My wife (A Pharmacist) works for a large specialty Pharmacy connected to a Large Hospital & cancer treatment center. He went on to convince me otherwise. Claimed this Pharmacy worked real hard with insurance co's to get people accepted. So long story short the wife after speaking with multiple people (All Same excuses) Is personally looking over my insurance & treatment.

My hep load was 11mill so the Dr recommends 12 weeks of Harvoni. So I will be hearing something real soon. When I start the treatment I will probably start a new post. Thanks Rick 



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Rickk


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Yes I will keep you guys posted. Thanks for the encouragement. Hopefully I will hear something soon. Thanks Rick



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Dzdayscomin


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hepCFREEwanab wrote:
tomyboy wrote:

Good luck to you rick.  My husband is a geno type 1 and failed on the solvadi/riba combo.  He goes back to his GI 2/19 and Mt Sinai in March.  We are hoping he can get approved and begin the harvoni then.  Please post your progress and wishing you all the best. 

 

Laura and Tom

 Hi Laura, we went back to Mt. Sina on Jan 24th.  By unanimus decision, all the doctors decided that the best course of action for my husband would be  " RADIOEMBOLISATION"!  His tumors cannot be removed due to the liver not being in best of health and the location they are in.

So we saw an Interventional Radiologist who will do first a trial run and a week after that,  the actual procedure to put Radiation Microbeads directly in the tumor. The Insurance has approved everything and now we are waiting to hear from the hospital.

Hi Hepatologist has extended the Harvoni treatment for an additional 12 weeks because he does not want to take a chance of the virus coming nback.

The way I see it, we are all in GOD's more than capable hands and only HE knows what is best for us. So far no matter how bad things may look, he always shines a light at the end of the tunnel!

Laura I will say a prayer for your dear husband.  Don't wait too long, ask the doctor to call in the presciption before your appointment.

Mena

---
I almost had the RE tx and did get the 1st part, which they call liver mapping done, they do this in an IR suite with mild sedation meaning you are awake and its pretty easy procedure to tolerate, they use a cement of some kind after the femoral puncture to seal the vessel so you dont have to put the big weights on it for hrs anymore. Its kinda nice in a weird way to have that dry run so you know what to expect for the real deal....their was zero pain, but if you have any allergies to meds, or require FFP or platelets, i did have a mild reaction where my eyes swelled up some....so be sure to talk about those because they couldn't determine what caused it.
Is he on the transplant list? or was he disqualified due to # and size, and or location of the tumors?  Sorry if you had mentioned that before and missed it.
I have ESLD Decomp. Cirrhosis,  portal hypertension,  HCC, with one RF ablation procedure completed a MELD of 25 now and about 25 months on the transplant list, plus I picked up a bonus illness of diabetes with an A1c of 7.0 .......so yeah it's  pretty much in Gods hands because I couldn't manage all this without his grace, love and caring for me......or that could be my wife....but I think of her as more of an Angel working thru God helping me!
Prayers to you both.
Duane

 

 



-- Edited by Dzdayscomin on Sunday 25th of January 2015 03:35:15 PM

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53yr M 1a acq 12/83 cirr pre tx MELD 17  tx nv diag 1/29/12  tx S/O 3/5/14  trans list.

EOT 5/28/14 UND 6/12/14 SVR 8/29/14 MELD 14 dx HCC 9/5/2014 tumor ablation 9/24/14

In the 10K lakes State It's not about us but those around us.
Bills


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Hi Laura and Tom,

Sorry if I missed any other discussion on this issue, It seems like with alot of it's always something, All I can say is Tom and You are in my thoughts and prayers. At least there seems to be a good plan with Mt Sina and appear to truly concerned by extending the Harvoini  Good Luck Tom God Bless 

Bill S



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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.

hepCFREEwanab


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tomyboy wrote:

Good luck to you rick.  My husband is a geno type 1 and failed on the solvadi/riba combo.  He goes back to his GI 2/19 and Mt Sinai in March.  We are hoping he can get approved and begin the harvoni then.  Please post your progress and wishing you all the best. 

 

Laura and Tom

 Hi Laura, we went back to Mt. Sina on Jan 24th.  By unanimus decision, all the doctors decided that the best course of action for my husband would be  " RADIOEMBOLISATION"!  His tumors cannot be removed due to the liver not being in best of health and the location they are in.

So we saw an Interventional Radiologist who will do first a trial run and a week after that,  the actual procedure to put Radiation Microbeads directly in the tumor. The Insurance has approved everything and now we are waiting to hear from the hospital.

Hi Hepatologist has extended the Harvoni treatment for an additional 12 weeks because he does not want to take a chance of the virus coming nback.

The way I see it, we are all in GOD's more than capable hands and only HE knows what is best for us. So far no matter how bad things may look, he always shines a light at the end of the tunnel!

Laura I will say a prayer for your dear husband.  Don't wait too long, ask the doctor to call in the presciption before your appointment.

Mena



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Genotype 1b, V/L  0! Finally got rid of the Dragon after 24 wks. of Harvoni.

EOT 5/10/15   - 4 wks. UND, 12 wks UND, 24 wks. UND!!! 
Tig


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Hey Rick,

Glad to hear that things are moving in the right direction. Treatment length on Harvoni has been 8, 12 or 24 weeks. Depends on your health and insurance. Seems that the hardest part of Harvoni treatment is getting it. With that said, you mentioned treating before and being a non responder, that will work in your favor. I think the insurance companies will start coming around and these approvals will get easier. We have seen denials actually work in some people's favor, two denials and the Gilead Support Path program will many times help you obtain their medication at a significant savings. Stay in touch and let us know what you hear. It's a great time to treat! Good luck...

Tig



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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!

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tomyboy


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Good luck to you rick.  My husband is a geno type 1 and failed on the solvadi/riba combo.  He goes back to his GI 2/19 and Mt Sinai in March.  We are hoping he can get approved and begin the harvoni then.  Please post your progress and wishing you all the best. 

 

Laura and Tom



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Geno type 1,��after 20 YEARS Harvoni finally arrived....after six prior treatments...�Began harvoni for 24 weeks.....30 days viral count....STILL 0.......Tom now HEP C and Cancer FREE

Rickk


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I went to my Dr's office and am still waiting for a call back. He said everything depends on insurance for length of treatment. I had to get another Ultrasound before treatment. He will proscribe Harvoni when the time comes. He claimed many non responders have had success with Harvoni. Well Its nice to have some hope again. Rick



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Rickk


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Thanks Guys,
GL tojo



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tojo


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Rickk,

 

I failed triple rx as well, I understand.  I am 1a with vl>6mil, no cirrhosis.  Started harvoni on 12/8, first liver panel on Monday.  Hoping to be able to provide good news.



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skewedButNotBroken


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Good luck Rickk! 



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Diag. with hep c in 1992; A3:F2;  GT 1a; IL28B CT; VL 900k, ALT 150, AST 100 on 8/5/2014; SOT 9/5/2014  S/O ---VL 127 after 6 days; VL detected on day 18 but < 15.; --> UND @ EOT+ 1 year SVR!
Rickk


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Hi again folks. 
I have a Dr's apt Jan 13th to discuss the newest treatment options. Im excited & nervous at the same time. I have been hearing good things about the newest treatment for non responders. I believe Im a geno type 1A. Wish me luck. Thanks Rick 



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Matt Chris


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Hey Rick 

Was reading about about your interest in HCV clinical trials, there is a good Hepatologist named Steven Flamm that is working with most of the trials in the Chicago area in conjugation with Northwestern University that would be a good place to start.

Heoping all the best 

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! 
Rickk


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Thanks. I guess I will call my Doctors office (Northern University Chicago) to remind them Im still interested in being part of a study. Rick



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mallani


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Hi Rick,

As you failed the Incivek triple, you are probably Interferon resistant, and should wait for an all oral combo. Although Sofosbuvir should be approved soon, it will only be used with Interferon/Riba. You need to wait for a regime that doesn't use an antiprotease, perhaps Sofosbuvir/ Ledipasvir. That may be a year away. There are still Trials that are recruiting, so get your doctor to look into these. Good luck.



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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
Rickk


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Hi Forum.
Well here we are 1 yr after this post. I see some promising new treatments. May will be 2 yrs since my last failed treatment ( second Failed) Am i a good candidate for one of the new treatments? Thanks Rick



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Rickk


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Thanks for your time & Help. I will look into this. Thanks Rick



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Cinnamon Girl


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Hello Rick, welcome!  smile  Really sorry you`ve had such bad time with your treatments so far, but it`s a good idea to try and get onto a trial, there are various new drugs and combos being studied at the moment.  Yes, there have been some serious problems with one study which was halted recently, but there are others out there.

As you probably know, you won`t be able to do a trial involving a PI again, but It`s probably a good idea to ask your doctor or nurse if they know of any suitable studies which are currently recruiting, or you can do a search for trials in your area on this site -

http://clinicaltrials.gov/ct2/search/index

One to look out for is GS 7977 which is looking very promising indeed.  One of our members, Jime, has recently finished a trial including this new drug and has very kindly kept a journal of his progress, it`s well worth having a read  -

http://hepcfriends.activeboard.com/t48295757/7977-journal/

Wishing you all the best, Jill xx



-- Edited by Cinnamon Girl on Thursday 20th of September 2012 11:28:10 PM

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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.

 

 
Rickk


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Hi Folks,
My Name Is Rick and my second Hep C treatment failed. First treatment was 6 years ago. Last treatment (tripple treatment with Incivek) started in Jan. Load went from 750.000 down to 47 first month. Then my docter called with bad news. Levels went to 13.000. I asked for new labs in case of mixup. new labs showed 41.000 a week later. My docter refered me to loyola Hosp in Chicago. Was informed new drugs are coming out sometime soon. I asked about being on a study group untill I heard the nurse talk about the fatalities. Have you guys heard of anything coming down the pipeline? Thanks Rick
 



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