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Hep C Discussion Forum -> On Treatment -> Mavyret for GT3, Starting next week
Post Info TOPIC: Mavyret for GT3, Starting next week
Cheddy


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RE: Mavyret for GT3, Starting next week
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Phil,

What more can I say.  This is sooo sad and I'm very sorry that you have to go through this.  I don't have a cure for this one but I pray in the best ways I know how that you will find the strength you need to bear this.  

Reminder: take the very good care of yourself.

 



__________________

GT2a, VL 681,500, Less than F1, Treatment Naive

12 wks Sovaldi/Ribavirin, SOT 2/25/16, EOT 5/17/16

UND at 2,4,8 and 12 wks during treatment but ribavirin crazy.

ALT/AST normal EOT

SVR12 8/13/2016!!!!!!!!!  I WON!!

EOT 6 Months 11/12/2016  CURED

 
Iris Dragonfly


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Phil, honey...>>virtual hug<< blessed strength to you my friend, my sincerest sympathies, what a shock.

We are all here for you, whatever you need. Ok?

I'm so very sad for you, was watching the doc on Prince last night and they suggested there is much toxic black market stuff going around, but that doesn't help you in your grief. I pray that you will be held up in your time of sorrow, for you and all your family. I shall light a candle. Many blessings.

Iris



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in the silence of the woods, you will not be alone- Chief Seattle

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)
polosilver


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Oh Phil, so sorry to hear this news that no one wants to have...I hope there will be a way for it to become bearable some day...so sorry to hear, my condolences. There is much support here on this board and hope you will use it to help you through this tragic news. 



__________________

 

New: Hepatomegaly 07/30/2019, AST 29 & ALT 15

Female,1a,F2 mod fibrosis,HCV 06/2017,SOT 08/04/2017, Harvoni

HCV VL 414,000, AST 54, ALT 74.  4 weeks AST 34 and ALT 31, SVR, Jan 2018. 

12 week EOT, AST 20 & ALT 23 and still VL UND.

Club Zero Member.

 
Canuck


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Oh my God Phil - such horrible news. I am so, so sorry. This is unimaginable. I am so sorry for your loss. Heart wrenching. Please use us, talk with us, share what is going on if it can help in any way. I am just devastated at hearing your horrible news and can only hope you and your family are going to be able to find ways to bear this. What a shock, for everyone. Such a tragedy and horrific loss. My most sincere sympathy for what has happened. C. 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)
5-1-18


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phil, i'm so sorry for your loss and pray you are able to grieve and heal in time cry. 

and i def know the ropes of the other dragon-addiction. i'm giving a moment of silence to your dear son.

 



-- Edited by 5-1-18 on Friday 28th of September 2018 12:05:15 AM

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Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=L.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0
SeeTheLight


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Oh Phil,

How devastating for you all. So very sad. My sincere condolences.



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66/F Contracted Early 80's First Diagnosed Early 2000's 2017 re diagnosis and referral for treatment Gen 3a Fibroscan 8.7

Epclusa 12 weeks commenced 1 May 2018 ALT 72 AST 67

28 May 2018 4 weeks ALT 16 AST 23 ...... 23 July 2018 EOT ALT 23 AST 30 .....Oct 16 2018 SVR12 UND
Hoodietree


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Phil you have my deepest condolences. Im so very sorry. 



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F, 51, GT3, HCV since 1989, no alcohol since 1999, Fibrosis score F0-1 (.36), VL 216,000, ALT 23, AST 26, Epclusa SOT 7/26/18 EOT 10/18/18. Thank you God. 
Tig


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Phil,

Brother, I’m so terribly sorry. What a tragedy. I am at a loss for words. Is there anything we can do to help you through this? Addiction/substance abuse is so difficult to understand and we don’t realize how much damage it has already done to the brain and the ability to reason. This is so sad. We’re here for you to talk, anytime. cry



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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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Phil G


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Well, our story goes from bad to tragic.

He only had about a month clean when he started treatment, which might not be typical for those of us so inclined. Maybe that has something to do with the side effects as his mind and body might not have recuperated from his last outing. Perhaps that should be a consideration before starting treatment. Another thread perhaps.

His doctor said 12 weeks because the ultrasound showed a fatty liver, not necessarily cirrhosis. Right or wrong, don't know. My thought was better safe than sorry.

However, this is all for naught. He went back out at 5 weeks into treatment, and passed away from an overdose on Sunday. cry

 



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Geno 1A, VL 1.9 mm, SOT 12/2/11 - Pegintron/Ribavirin/Victrelis, UND since wk 8, EOT 6/15/12 (28 wks), SVR 11/30/12
Canuck


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Ya, that was strange (the seizure activity), my hope too, that it was a  "one-off" and never again! Don't need that! Was it a grand mal or what!?? Can you share the experience?

Nausea is obviously a problem, did the docs not suggest trying something else for nausea, offer advice/tips/thoughts - he IS taking the Mav WITH a meal ... right?

How is his diet? What is he eating (along with the pills), and, all day - could there be anything else going on that might be accounting for the troublesome nausea?? Maybe he has been consuming a really horrible diet? - (I would assume that is NOT the case!), but ... look for reasons that could have some alleviating answers. Is it ONLY the Mav, alone, being the sole cause of the nausea? I would definitely get him on a good nourishing diet but bland, soft, easy to digest, non-spicy foods, and, making sure he is trying to have a fairly full substantial meal WITH the Mav. Having the Mav dose introduced into his stomache along with a fairly full meal may help decrease/prevent nausea, but ... maybe not either ... so hard to be guessing when there is not really enough info to go on here (for you or for us) being that you only have second hand information available to you! Is is "acid indigestion", or is it just strictly nausea, and when does it occur?

I can only suggest experimenting with what he is eating, and when, taking the meds with food, and of course drinking enough water. Ask the docs what else he can try if the nausea does not relent and continues to be intolerable. There should be something you can all come up with to minimize the nausea at least somewhat.

Great 4 weeks bloods! biggrin Especially knowing what the befores were! 

I hope for NO MORE seizure activity!, a way to find less nausea, and smoother sailing for the rest of the course.

12 weeks if cirrhotic (so says the mono)! You said he is only F2/3? by bloodtest methods? - did he also have any Fscoring by fibroscan? - without further specs/bloods/tests/numbers we may be splitting hairs in knowing how cirrhotic (or not) he may be. 

We see that some GT's are getting only 8 weeks of treatment with Mav - as a treatment-naive GT3, and if non-cirrhotic, then "theoretically", it is possible his doc might give him only 8 weeks. Abby has recently upgraded some certain and select longer length courses (12 weeks/16 weeks, adding other drugs, etc), but in GT3's it was only in cases of co-infection, transplant cases, cirrhotics, etc and those with certain treatment experience. 

Thnaks for keeping us updated - wishing for only smooth sailing for you two. C. 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)
Tig


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Hey Phil,

Sorry to hear about his seizure. I checked on any drug interactions between Mav and Zofran, I found nothing at all. It’s difficult to track down a reason sometimes, but the doc will find out if there is an organic reason. As you know, sometimes there are reasons that escape us and we never know why. That doesn’t help us with our parental concern or his either. Let’s hope it’s a onetime blip and doesn’t happen again. Ask if he can take something for the nausea like Dramamine. It may work and is OTC. No interactions noted with it either.

Now the great news is his early undetected viral load! That’s what it’s all about, Brother. Give him my congratulations. Keep us informed and thanks for the update.



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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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Phil G


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An update, good and bad:

The good: Just got 4 week blood work - UNDETECTED, AST 15, ALT 26. Doctors appointment next week. Hopefully find out if doing 8 or 12 weeks. Assuming 12.

The bad: Serious nausea has been a constant issue. Didn't take any medications for 1st 4 weeks, then started Zofran, which seemed to work well, but had a sudden onset seizure on the 2nd day. Never had one before, and the myriad of tests showed nothing abnormal. Whether its related to tx, zofran, sins of the past, or just s**t happens, don't know. Anyway, probably gut out the nausea for the duration.



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Geno 1A, VL 1.9 mm, SOT 12/2/11 - Pegintron/Ribavirin/Victrelis, UND since wk 8, EOT 6/15/12 (28 wks), SVR 11/30/12
Ziggy65


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Congrats on a new road for your son.

I just finished an 8 week course of Mavyret with success. 

I was concerned about the food too.  But Tig and Canuk got you covered with correct responses.  I thought we only had to take it with food just like with any other med.  But come to find out it has to do with absorption.

So I found myself gaining a few extra pounds during treatment due to eating full breakfasts which I was not a custom to doing on a regular daily basis.

But... not much to ask for considering the outcome of Hep C free life.  The extra pounds have already been shead.  YAY.

If it helps any....Im glad I did Mavyret.  



-- Edited by Ziggy65 on Wednesday 12th of September 2018 02:27:19 AM

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53 yrs female, Northern California, GT1b.  Let it go for 10 years after first DX in 2007.  First Treatment:  8 Week Mavyret starting April 11th to June 5th, 2018.  Viral load was undetected after 4th week of treatment and after 3 months after treatment.  See Pre-Treatment Test Results in Bio.
Iris Dragonfly


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Hey Phil!
Very long time no see!. Good to hear you checking back in. So sorry about your son, but crossing my fingers the change in meds will get the desired results.
Please let us know how he is getting along.

And you...how have you been feeling since SVR?

Blessings, Iris

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in the silence of the woods, you will not be alone- Chief Seattle

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)
Canuck


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OK, that is where I go too Tig, (to the monograph) for absorption rates and aprox fats (moderate to high) ... I go to Section 12 to decipher: 

Clinical Pharmacology Sec. 12, Pharmacokinetics Sec 12.3, Table 6, Absorbtion (specifically) - line 2, and see note (b).


Even for some of the other different drug regimes, where it is said that the drugs can be take with OR without food, as food had no "significant" affect on absorbtion ... I still find the effect of food on absorbtion rates interesting fodder.

That was good info you passed along Phil, important (for the next person coming along, who might be taking Suboxone versus Subutex) - I will now have to go and study up on how hard these drugs may be on a liver. Wishing you and your son nothing but the very best ... I hope you keep us posted. smile C.

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)
Tig


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Hi Phil,

Welcome back, but sorry it’s about your son‘s infection. The good news is, Mav is light years better and easier than the Tx you and I went through. Congrats on your SVR!

As far as food intake with Mavyret, they do recommend taking it with food and if you search the Mav Monograph, you will see that while there are no specifics on a recommended fat percentage, I interpret this PAGE to say that when taken with a higher fat food source, the absorption is increased greatly. The manufacturer only recommends taking with food and absorption rates obviously are still adequate because the SVR rates are so high. My thought is if you can increase absorption with a piece of cheese or a bowl of ice, why not?

Mavyret Monograph



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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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Phil G


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Well, not me, my son this time. I was a devoted follower of this forum during my treatment for GT1 with Victrelis in 2011-2012. Tested last year and still clear.

He is GT3 with an initial virus load of 7.8 million, AST 472, and ALT 883. FibroTest and ActiTest scores are 0.56 (F2/F3) and 0.91 (A3). Ultrasound indicates fatty liver.

He was diagnosed during testing to get on Suboxone, and after a few weeks on it, his liver enzymes hit around 2000. The other tests were pretty gnarly, too. Apparently, the naloxone in suboxone is a liver toxic, at least for compromised folks. He switched to Subutex, which is the same drug minus the naloxone. His AST and ALT are now 32 and 269. This info does not seem to be well known in the medical community, and it is certainly not unique that someone seeking Suboxone would have HepC. Just an FYI.

He is starting Mavyret next week. With the Abbvie copay card, his copay is $5.

A question: Is there a criteria for the food to be taken with Mavyret, like calories or fat content. I haven't been able to find anything.



__________________

Geno 1A, VL 1.9 mm, SOT 12/2/11 - Pegintron/Ribavirin/Victrelis, UND since wk 8, EOT 6/15/12 (28 wks), SVR 11/30/12
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