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Post Info TOPIC: Hi all
Tig


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Hi all
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Gracie,

Has your doctor discussed the possibility of starting Neupogen? I had to take it twice a week for most of my treatment due to low WBC and a low ANC. It's worth asking about it. At least I wasn't quarantined to the house once my white count increased! Be cautious because you are susceptible to illness. Here's a link on it and some co pay assistance info as well.

Tig

http://www.neupogen.com/



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Tig

68yo 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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Gracie


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Yea, interferon is a bitch. My ANC is in the tank (.5), and I could potentially catch anything.

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  1. Gracie

1A. Previously treated non responder Rebetron in 2000 And Incevik in 2014 with a breakthrough at week 12. Fibroscan 15.5. VL 6,000,000. Finished 24 weeks harvoni on Dec. 19, 2015. SVR. Latest Fibroscan 8.8.
JaneyMae


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We appealed it and they denied again. The doctor hopes that either my liver is not in bad shape yet and I can wait a while, or if it is in bad shape he can use the biopsy results to get them to change their minds. They are trying to force me to use interferon and I've never been a candidate for that as I have multiple chemical sensitivities...



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Jane
Gracie


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Thats terrible! Why would they approve, then change their minds. I've heard these drugs are ridiculously expensive, so insurance companies may be balking on approvals. Can you fight it?



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  1. Gracie

1A. Previously treated non responder Rebetron in 2000 And Incevik in 2014 with a breakthrough at week 12. Fibroscan 15.5. VL 6,000,000. Finished 24 weeks harvoni on Dec. 19, 2015. SVR. Latest Fibroscan 8.8.
JaneyMae


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I believed the lie
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Oh Well...

I was approved and while the pharmacy was filling the prescriptions my insurance company changed their mind... I will have a biopsy on 3/20 to see if there is enough damage to possibly convince the insurance company to reconsider, but for now I will not be getting treatment.



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Jane
Cinnamon Girl


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Hi Jane, and a belated welcome from me!  smile

That`s really excellent news, so good to hear these drugs have been approved for you now, and what a great deal using the manufacturer's coupon programs!

Wishing you all the best of luck, 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.

 

 
JaneyMae


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Great news
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I have just been approved for Olysio and Sovaldi combo therapy! I will have $5 copay for the Sovaldi and $25 copay for Olysio through the manufacturer's coupon programs!



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Jane
asco


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RE: Hi all
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Jane, forgot to ask have they done blood work for Q8OK



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asco


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Hey Jane

The first order was covered by insurance (co pay $30) but that order was filled in Dec, got my doctor to order fist day it was available.  Been on top of this for the last year and half so knew day it was being released. BUT that was in December BUT AGAIN that was before Obama care so we believe this is going to be a problem now. Can not say that as a fact but that the only reason my doctor and I can come with. I carry the best coverage blue cross offers. I have about 5 days left and my doctor put in another request so I will let you know how it goes. I also got the $5 co pay coupon the other day from Gilead. I would be heart broken if does not go thru but the up side is we now know there is a simple cure and the word is getting out fast. So if I have to wait a few months I will but what a waste of $50,000 they already put out. My hopes are still high that they will get refilled. 

WILL LET YA KNOW, 



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Matt Chris


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Hey Jane and Asco

Welcome to the forum from me as well, you have found a good place with friendly folks and many that are willing to help and show great care in doing do.

I am hoping that the double DAA that your going for works out, it sounds like that combo is working really well for others and you members should be no different 

Please keep in touch so we can following your progress and lend a hand if you need it.

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! 
JaneyMae


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Oh my ASCO, how did you pay for it the first time? If I can't get it paid I'm not going to be able to do tx. Supposedly the Sovaldi won't cost more than $5 per Rx with the coupon, I hope I can get a similar deal with the other drug.

Congrats on the good results! I am also 54 years old and have had this for over 30 years.

Jane



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Jane
asco


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On therapy Simeprevir & Sofosbuvir

I have been on both for just over two weeks. Had a blood test done on my 14 day and just got results back. WOW my ALT and AST have been in the high 300 to 400 if not higher for many years NOW THERE BOTH BELOW 40. Had blood test three week ago viral load was 284000 but have been much higher in the past but now 351. I have had no side affects and feeling better than I have since?. Im a male 54 and been living with the big C for over 30 years this almost seems like a dream.  NOW the bad news tring to get second precription filled and running into problems, they sent 28 pill first time $22,537.4 Simeprevir & $28,560.00 for Sofosbuvir. Dont think insurance wants to pay due to this theapy is not FDA approved. Im not a very religious man but Im sure praying they will fill my next two precriptions. ITS A GREAT DAY FOR THE HEP C WORLD  

 

 



-- Edited by asco on Tuesday 21st of January 2014 12:41:50 AM

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JaneyMae


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Fingers crossed
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My doctor ordered the combo therapy of Sovaldi (sofosbuvir) and Olysio (simeprevir) and now we have to wait and see if the insurance will OK it. I'm not a candidate for interferon as I am highly sensitive to many drugs and they don't want to chance strengthening my virus if I fail treatment due to side effects.

My viral load is 897000, Genotype 1A. The doc says that my AFP, AST/ALT results are not so bad and that I should be a good candidate for this therapy.

Keep your fingers crossed for me that I get meds in the mail soon!

Jane



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Jane
Tig


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Hi Janey,

That doesn't seem to be a level that I would be alarmed about. I believe your HCV would likely be responsible for a small elevation like that. As DeRanger recommended, be sure your Hepa is made aware of that and have it retested.

Your liver function tests, ALT/AST are elevated but not alarmingly so. That goes for your VL as well. My VL just before this round of treatment was 5 million. The lower your VL, the better you should respond to any type of treatment. I believe most insurance companies would rather help you treat your HCV now, while you have little damage and the best chance at resolving (curing) it. So far people have had good cooperation in getting their Tx programs approved. I would be hopeful that it's going to go well for you! Good luck and be sure you let us know when you see your hepatologist.  

Tig



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Tig

68yo 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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JaneyMae


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Thanks everyone! My AFP is only 0.1 above the normal range. My VL is a bit over 800,000, up from 494,000 about 2 years ago. At one point my VL was over a million, then I got it down to 100,000 for a while. I had a doctor assume I was in the tx because it had gone down so far. Now though I have elevated AST (54), and ALT (57), and now the AFP marker. 

I have asked my PC for a referral to my heptologist and I plan to discuss getting on one of the new protocols if my insurance will cover it. Does anyone have any experience with insurance, or advice on the likelihood of them paying for the protocol?

Thanks again for the welcome and encouragement.

Jane



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Jane
DeRanger


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JaneyMae,

I too had high AFP marker for quite a while and the cause could not be determined.  Dr.s assumed it could possibly be from the HCV.  Deciding to do the triple therapy with victrelis, I had additional tests when the ultrasound showed some mass in the liver.  Further tests discovered two HCC tumors in my liver.  I had no symptoms other than the high AFP.  A great surgeon, wonderful support, luck and a positive attitude has helped tremendously.  18 months post surgery, cancer free - AFP normal again.  All I can say is go get it checked out further. 

Good luck...will be thinking of you.

Bill



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1a, 35+ years; liver cancer survivor 7-2012 surgery; triple therapy 12-2012 (Interferon, riba, victrelis) - end 48-week treatment Nov. 29, 2013 - post tx 24 weeks undetected - SVR.
mallani


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Hi Jane,

Welcome to the Forum.  Eventually, HCV requires treatment.  You should really find out what stage your liver is at, and that can only be done with Fibroscan or biopsy.  Then you can decide how urgent treatment is.  For Geno 1a, new treatments have been approved or will be available later this year.  Many of us have had success with Victrelis or Incivek, but in the USA, Interferon can be avoided.

AFP is a marker for HCC, but if your Ultrasound was OK, I wouldn't worry about it for now.  Get it rechecked in 6 months.  Let us know your VL and enzyme levels and ask any questions you like. 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
Tig


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Hello JaneyMae,

Welcome to the forum, we're glad you found your way here! You'll get to meet some nice people here, that are ready to help most any way they can. Be sure to utilize our search function above. There's more information here on HCV than most libraries, lol!

Have you spoken to a Gastro or Hepatologist recently about your liver and the possibility of trying treatment again? It's a very promising time for everyone with HCV, and 1a's are included. Treatment is getting better all the time. I encourage you to ask all the questions that come to mind. We'll do our best to help you find those answers.

Do you know what your AFP level was at the last test? HCV can be responsible for that elevation. A very high AFP can be a cancer (HCC) marker, but the value would typically be very high in that case. If you remember that value, let us know and it will help answer your question better.

Congratulations on the weight loss! That by itself is a wonderful step forward to better and improved health. Thanks for introducing yourself, I look forward to your participation and appreciate your interest here. Good luck!!

Tig



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Tig

68yo 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

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JaneyMae


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I am a new member to this board but not new to HCV.

I was diagnosed in 2000, genotype 1a. I've probably had HCV since the 70s. After being diagnosed I became an active member of some online support group/message boards similar to this one. After modifying my diet and my lifestyle for a considerable period my viral load progressively went down. At one point a doctor assumed that I was on one of the protocols for HCV! Unfortunately in recent years my viral load has started going up again. I just had it checked a day or two ago I won't get the results back for a while, however, I did get the results of my AFP which is now elevated for the first time in my life. AST and ALT have also been elevated significantly for the past few years. 

A few years ago I lost 60 pounds which I've managed to keep mostly off. I had an ultrasound today and the first thing that the technician said was "you've lost a lot of weight since your last ultrasound haven't you?" Evidently the fatty deposits of disappeared off of my liver pancreas kidneys etc. I'm quite concerned about the elevated AFP though.

Anyway, just wanted to introduce myself and not be a lurker! Thank you to everyone for being here.



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Jane
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