Hep C Discussion Forum

Canuck · Guru

RE: Awaiting SOF/VEL/GS-9857 trial

Linuxter · Guru

Hi Canuck,

Congrats on starting Tx! We're all glad you're home, safe and sound.

My guess is that it'll be a smooth ride and you'll be takin' home the prize money soon.

Best of luck.

Take Care,

Dave

robertsamx · Guru

Looks like everything went your way. In my mind when I hoped you would pull the long straw I was thinking that the TRIPLE DRUG COMBO was the long straw!! Hitting the virus at 3 spots IMO seems better than hitting it at two. These are strong drugs. Can't wait to see you go UND. RC

Tig · Admin

Hey Canuck,

Yeah baby!!!! Congrats on getting this show on the road. A little dab will do ya, huh? That's the positivity we like to see and you're right, it's gonna work! I'm surprised they gave you the full prescription too. You must look very trustworthy, lol! Maybe they know that mountain pass can be troublesome at times and don't want to leave you hanging, just in case! You can always come to south Florida and leave the snow and cold behind! Call it a Velpa Vacation, lol! We have lots of Canadians here this time of year anyway. Good luck, eh!

wmlj1960 · Moderator

That's good news Canuck. You are now an official 'Dragon Warrior'. Onward to SVR...

RAGDOLL · Senior Member

Welcome Back!!! Glad your trip and experience went well. So glad you are on this treatment plan. RC and I wait patiently for his call to the next journey. We too travel over the mountains to the coast! Keep us posted as to your progress. You are so lucky to be on this trial. We have been watching this for over a year and statistics look promising.

Take care and God Bless! Chris

wendyo · Guru

here's to your start Canuck! Glad the trip went well and your ride has begun.

Canuck · Guru

Hey everybody,

I'm baa- aack. Got back from our journey to the coast late tonight (Thurs. March 10) and now update you. I write this at 3 AMish (technically) now Friday, March 11 (canuck standard time).

Went well. Sure glad we made the decision (long ago) to always try to arrive to the big city the day before appointments, as the mountain pass (that was perfect, going down), soon had a sizable dump of snow hit it. The worst of the snow dumping was over, so we still returned home that way tonight, but sure would have hated to be caught in that mess trying to get down to the city. I would rather have a dicey return home than to risk missing an appointment!

Been celebrating my "DAY ONE", all day! I was only 45 minutes early for my appointment and no one thought I was weird! Well at least not for showing up early again anyway. It doesn't seem to help though, even with the lab work starting earlier than booked, it always turns out to be a long day. I opened my mouth immediately on arrival, but it didn't work, they have their ways. ECG, wait, lab took a quart, wait, pee, wait, papers, wait, doc, wait, more instruction, wait, then .... finally the PILLS APPEAR and a glass of water, thank you!!!

SOF/VEL/GS-9857 for 8 weeks. Short straw according to Mr. Toe, but I think a little dab'll do me. On to DAY 2!! They gave me the whole supply! - 2 bottles, 28 tablets in each bottle - 56 tablet total (what - in case I run away, go missing, don't show up or somethings?). Oooh, let me count the ways, ... ate one, so in a downward fashion that's that's minus 55 tomorrow ... or, shall I just stick with upward day 2 format, hmmmm, oh if only all of life's decisions were so pleasant! I think it will be an easy ride as Tig so aptly described in rodeo language, all I gotta do is hang on for about 8 seconds.

I needed a "velpa nation" anthem (decree or mantra - what ever you want to call it) to hum along to so I finished it and posted it in the bad poetry section.

Happy day. C smile

Linuxter · Guru

Safe Travels Canuck - Godspeed!

Hope the weather holds ... wishing you the best.

Dave

robertsamx · Guru

O Yeah just one more thing, try to pull the long straw if you can! RC

Ari-anna · Veteran Member

All the best on your new adventure!

Sound like you are in the best of hands and have a great attitude; the most important items don't need a suitcase

Kind regards

Ari

robertsamx · Guru

Your in my thoughts. Good luck! RC

Canuck · Guru

Hey everybody,

Sorry it's been a bit busy and hectic for me this week (trying to clear things out of my path) so that I have a free and clear run back and forth to the doc at the coast for the next 8/12 weeks and more . I vowed I would leave the computer alone for a few days to try to get some things done, but could not resist, I kept peeking in and seeing ALL kinds of things I'm pining to reply to but, won't right now. Apologize for not replying, to congratulate, commiserate and converse.

My excellent chauffeur drove me down to the big city through beautiful snow covered passes today (driving miss crazy he says) to arrive at our cheap motel tonight. ONE MORE SLEEP! Over to the doc for bloods, and meds tomorrow AM!!

Finally.

So happy.

Will let you know whether I end up with the 8 weeks sof/vel/GS-9857 or 12 weeks sof/vel, as soon as i know.

Oh, it is been a lovely day today (on my way to my cure) , and tomorrow, it will be even better!

Maybe I'll show some restraint and not show up 2 hours early for my appointment like I did last time : )

Sydhanrahan · Guru

Hey Canuck,

big sleeps tonight. Tomorrow you're off on an adventure. I hope you don't find Linuxter's scary, phallic futuristic train has slid into the station foryou.

Im pretty impressed by his avatar, it looks super strong and ready for some long distance hauling. My own train is a little click clacketer, old and dented but tried and true. Internal fixtures are all glowing wood. Except for the bathroom which must have been added for a lady last year. White, super functional with a toilet not four steps from my bunk, so I can hobble off to give my bladder a talking to in the wee small hours.

You'll need more than two shirts too. My pull down table's covered in newspapers, books, sewing project for my grand daughter and a few packets of chewy treats when i need a lift.

(I finished a project this week. First time since last October!)

seriously it looks as though you're about to start a very effective program, with minimal side effects. I'm sure your liver function tests will begin to improve just like mine are, without that virus inflaming and attacking it.

Good luck!

Syd

Canuck · Guru

Hey thankss so much everybody.

Lucky I am! Seen that movie Alien??, Sigourney Weaver in near out-of-mind panic mode trying to squeeze herself into the defensive lifesaving spacesuit, alien milliseconds from annihilating her, vibrating pale sweaty Weaver trying to concentrate and muttering insanely "lucky, lucky, lucky" under her breath? Know the feeling.

Bag packed with 2 nice new shirts, good company, ticket punched, window seat reserved in my sleek transport, ready! Feels comfy already. I'm reciting a little ditty in my head, should have it all worked out by Day One, and will post it then - kinda my velpa mantra/anthem.

Linuxter, thanks for reminding me to always check the fine print. smile

Linuxter · Guru

Tig said:

Perhaps we can start dumping the Dragon carcasses on it and send the slow boat to the bottom of the deepest ocean or one of those cold Canadian lakes!

... Can we hold up on that 'till I get off this malodorous, slow cruise that I somehow bought into ... hey, the sides stink at times but upon looking around the engine room I see that it is a tried and true reliable ol' diesel and did notice that it's been retro fitted with turbo-charger so I really shouldn't complain ... much ... I guess I can forego all the fancy bells and whistles ... actually I do like whistles so I may ask for a transfer back to the ol' coal fired Loco-Flux® train that I so enjoy ...

Dave

-- Edited by Linuxter on Saturday 5th of March 2016 11:38:06 PM

Tig · Admin

Slow boat? Are you saying you don't like the slow "Poop Boat" excursion I arranged, Dave? I admit your train below has some appeal to it, but now I'm stuck with a stinking boat ride that nobody wants.... biggrin Perhaps we can start dumping the Dragon carcasses on it and send the slow boat to the bottom of the deepest ocean or one of those cold Canadian lakes!

We all wish "C" a most pleasant journey!

Linuxter · Guru

HeyYa Canuck,

YippieYahooooo! This is very sweet news, very sweet indeed!

So glad to hear this, it's off the slow boat and on to the ...

Magic Bullet - Dragon-Slayer Express ...

... powered by the very latest, state-of-the-art, Deluxe-Flux® system

and features the ultimate, Magnanimous-Maglev® ride suspension

Fine Print: Warning, due to the extreme relative speed of the Deluxe-Flux® system, you may actually arrive before you leave the station. This may not become apparent to the traveler until SVR has been achieved, upon which time they will notice that they actually feel younger than when they left.

-- Edited by Linuxter on Sunday 6th of March 2016 05:52:45 AM

Tig · Admin

WOOT!! Congratulations on the acceptance into what is an excellent trial. It's already a proven Dragon slayer, so all you have to do is put a saddle on it and ride it for 8 seconds! (Rodeo humor!) We're all thrilled with your news, regardless of hemisphere? But I'm sure Dave with have a witty comment about that, lol! Good luck, you know we'll be here cheering you on! smile

JimmyK · Guru

Hey Little Sister, this is some fantastic music to my ears!

You have been in my prayers more than you may know.

A true Veteran when you think of the wait, the watching.

Yea!

JimmyK smile

wendyo · Guru

Canuck thanks for the great visual....Gilead, here I come! I see you crashing the gate, arms flailing, crazy smile, wild eyes.

Very happy for you.

Canuck · Guru

Syd,

Hey thanks. Ya ME TOO happy. I knew you'd been frettin' fer me.

I'm glad you demanded a dateline recount here - lessee, that's not right what I said, it's NOT 7 MORE sleeps required - I better start packing!

On my side of the ocean (right hemisphere-time as Linuxter probably figures it), I actually found out my good news on Friday, March 4, so if a "day one" pill passes down my gullet as soon as Thurs. March 10, then technically, that's only 6 more sleeps until Thursday, not 7!! (Using my fingers now).

Must be that 4 hour nap I took earlier that makes me count funny. Or posting from my time-warp might not help either.

For this post, all that is clear, is that I am currently writing this at 4:45 AM (official Canuck time), Saturday, March 5, so ... your internal clock is right on - and by your dateline I really do (now) only have 5 more sleeps to go! I better get to bed eh! heehee

smile C.

Sydhanrahan · Guru

Canuck!!!!!!

so happy for you. You have been on my mind so much this past week. I want emoticons as the mute button is on internally!!

Wow all your patience, research and persistence paid off!! You deserve the best business class ticket there is. Maybe even your own carriage: no you are too much of a people person to enjoy isolation.

And the start date is what? Five days away??

Big hugs,

Syd

Canuck · Guru

I just HAD to get this news "out there" asap! I've been running full-out since about July 2015 just trying to GET to the station (seems I'm late for most things, sometimes 40+ years late). I finally got TO and INSIDE the terminal January 2016. But, since January all I've been doing is trying to secure a ticket. Basically, been camped outside the gate ever since, waiting for said ticket, and for somebody to please punch it and let me pass through! Finally ... TODAY!, I was told ... they GOT me my ticket, ACTUALLY punched it, and ARE going to let me through the gate, in about 7 days!! This last month of tortuously waiting for the sound of the other shoe to drop - no sweeter sound to my ears than to hear the words today ... "YOUR IN"!

Phone confirmation today, that MY DAY 1 WILL BE STARTING ON MARCH 10th !! I had to celebrate with a four hour nap this afternoon. Needless to say - I am VERY, VERY HAPPY! Gilead, here I come!! 7 more sleeps!! (not counting the naps). smile C.

Shadowfax · Guru

Another few posts and the forum will age you. You will become a senior ... You have been warned smile

Canuck · Guru

Hey bro,

Aw, thanks eh.

OK, OK, I willingly enlist then, being that I am in such good company, who would not! I've been given an offer I can't refuse. We'll get this uniform thing sorted out later.

Hey, why do you always have to be right! But, shush up about the 1973 thing eh, now everyone knows how late I was to sign up.

You're a dear. C

JimmyK · Guru

Canuck wrote:
Whal... lessee, maybe I will, or maybe I won't, take that promotion sir. Being that I am fence-sitting (technically not on duty yet), maybe I'll just take this opportunity to ask ... would I get a medal/or badge with that? Kinda like what the rest of the troops wear? I like badges!! I haven't been able to wear my issued velpa t-shirt yet - don't ya think that would kinda hurt, just to pin my medal to my chest? Do I get to boss anyone around? Oh, so many details, I'll let ya know later. C

Greetings Little Sister,

Forgive me but I have to take exception to your questioning your status as a Veteran.

The name up at the top left is Hep C Discussion Forum. In that regard you of course are not only a Veteran but one dear to all of us here.

"Contracted HCV 1973." VETERAN!

"Waiting for SOF/VEL with or without GS-9857 trial.." VETERAN!

The Forum, this Family, is not simply the story of those on treatment. It is not simply the story of those post treatment. Not about only successes but also the failures and the struggles of those of us who stand against the Dragon.

Some family members drag through the Ribamonster and others breeze through it. Some don't sleep while others snore. Some sit in waiting rooms with glass tables covered with the latest magazines while others travel to a half lit clinic.

Some like us await a ticket while others are in the no wait Business section.

But in all cases, each of us have formed an unbreakable bond of love and hope for each other. It is the love and hope for others that brings about the status of Veteran in this war.

Also the special status of certain Veterans are those who have fought and served in times of War. You have been in this battle since 1973 and as such have earned your stripes.

Dear sister, all here who know and love you, SALUTE YOU.

As you were.

JimmyK

Tig · Admin

You got it! Soon as you get this show on the road, the awards will flow your way. Guaranteed! We'll get Jimmy busy designing the graduation outfit. If you feel like being bossy, you know where I stay. I'll be waiting for your orders! Just wait, you're up for Senior member next! That's when the sponsorships begin biggrin

I'm looking forward to your day. Your chance is on the way. You stick with us and we'll see you to and through it, promise!

Canuck · Guru

Whal... lessee, maybe I will, or maybe I won't, take that promotion sir. Being that I am fence-sitting (technically not on duty yet), maybe I'll just take this opportunity to ask ... would I get a medal/or badge with that? Kinda like what the rest of the troops wear? I like badges!! I haven't been able to wear my issued velpa t-shirt yet - don't ya think that would kinda hurt, just to pin my medal to my chest? Do I get to boss anyone around? Oh, so many details, I'll let ya know later. C

Tig · Admin

Hey Canuck,

If you want, I can bust you back down to Private!! Your workload is expected to double.... biggrin

JimmyK · Guru

What Dave said! I think she is way past cool.

JimmyK

Linuxter · Guru

Congrats on the status Canuck!

Not to worry, it's based on a logarithmic scale and with your range of talents you're a shoo-in for the job.

Your writing skills alone would do it but add in your talent for research, your sense of humor, your cheerful nature, your empathy, your friendly disposition, your pride in being Canadian ... you're a natural, you're a veteran, without a doubt!

Dave

Canuck · Guru

Hey,

What the hay! How'd I become a "veteran"! I wasn't paying attention, and the next thing I know .... Ahem - I am likely no way near old enough for this, just haven't been around long enough to qualify, I am sure. Jeesh, I was a newbie just yesterday it seems! Ooh ya ... does this mean I have to do stuff now, more work, responsibilites or something! Good grief. Shouldn't I have finished a war or something first, before I become a vet? I'm not sure I warrant the promotion sir. Well, maybe ... if it means I can give out lots of absolutely free advice and still be dead wrong - that would be OK with me. Let me know eh, I'll just wait right here 'til I hear back from ya - I'm just killin time going nowhere anyway. smile Canuck

wendyo · Guru

Had heard of Nightwish but never really listened to them. Can appreciate the version of the Phantom. Music is such a personal thing but I love sharing and talking/listening to others about what hey like as you never know what will strike a chord

Music has gotten me through some of my darkest times. (Mother Love Bone)

Canuck · Guru

Enjoyed learning something about ppi's, interesting. And I enjoyed the tunes, gives me something to keep occupied with while I'm WAITING ... why don't they play stuff like this in the waiting rooms? I'd like to hear a little velpa musak, is there a velpa anthem or something I could stand up to attention for. smile C.

JimmyK · Guru

Wendy are you up on these folks?

https://www.youtube.com/watch?v=8VgLKXD-BoY

For some reason I have always associated The Phantom with The Dragon.

May be a little heavy for some and my apologies if so. Just a turmoil and struggle for me and us all but I may do it differently.

JimmyK

wendyo · Guru

I hear you....but that is just today.

Beats the days before I got sober when I was singing Fade To Black.

Thanks Jimmy.

JimmyK · Guru

Ahh music!

You just touched my soul! Thank You. Sometimes I feel more like...

https://www.youtube.com/watch?v=oh4r49tzn88

But that is maybe just today. A little down but I know not defeated.

Thanks again Wendy. That was cool. :

Your friend and Brother

JimmyK

wendyo · Guru

I remembered!

because you are a trooper!

JimmyK · Guru

wendyo wrote:
if the thought ever comes back I will post the video. lol

So not ground hog day huh?

What ?That was an ok video.

wendyo · Guru

if the thought ever comes back I will post the video. lol

JimmyK · Guru

wendyo wrote:
when I first read Jimmy's post I thought of a video I wanted to share. Got distracted as I was working from home today, brain fog kicks in and now I have absolutely no clue what video I was thinking of. Gotta laugh at myself now.

Ground Hog Day?

wendyo · Guru

when I first read Jimmy's post I thought of a video I wanted to share. Got distracted as I was working from home today, brain fog kicks in and now I have absolutely no clue what video I was thinking of. Gotta laugh at myself now.

JimmyK · Guru

Canuck wrote:
Yaaaa ... OK! Would be my pleasure, but still ... Canuck

Well it is the Information Age. We can text one train to another. I promise to stay in touch and am arranging as we speak to get to know the Conductor on your train and have him deliver some flowers. And................................ a cookie. smile

JimmyK

Canuck · Guru

Yaaaa ... OK! Would be my pleasure, but still ... blankstare Canuck

JimmyK · Guru

Canuck wrote:
Jimmy K,
Oh dear Jimmy.
So sorry, I was very much looking forward to sharing the sof/vel/gs-9857 ride with you (and tkflex 36 and webtomass)!
Canuck

As was I but I will tell you what. Let's make a date to share the SVR-12 Train instead. Deal?

JimmyK ;)

JimmyK · Guru

Hi Tig,

I do not believe I have seen that particular one no. However it is consistent with much of what I have seen.

"MANAGEMENT: Proton-pump inhibitors at doses comparable to omeprazole 20 mg or lower should only be administered either simultaneously with or up to 2 hours after ledipasvir-sofosbuvir under fasted conditions. Some authorities advise against administering proton pump inhibitors before ledipasvir-containing products; however, a timeframe of dosage separation has not been specified."

Two keys in the wording are'

1) "....doses comparable to omeprazole 20 mg or lower..."

2) "...Some authorities advise against administering proton pump inhibitors before ledipasvir-containing products..."

Ok 1 is good as mine is 20 mg. Number 2 is the interesting aspect and in my mind part of the key. Specifically as the term "before" is used.

If you take the PPI before the Ledipasvir you remove the environment it needs which is a degree of acidic. When taken simultaneously both enter an acidic environment.

When using a 24 hour PPI it is least effective 24 hours after taking. This is not in my case simply a theory it is something I can actually feel.

I believe this is why the current dosing guidelines state.... see table 4 attached.

I do not see how they can be so specific in the use of the term "can be" if not so.

I do Contracts for a living so I may be geeking the words a bit, but the words in Table 4 belong to Gilead and are based on the the tests run. Further such dosing guidelines cannot be published without FDA approved. Generally such guidelines out of an abundance of caution are worse case scenario which is why most commercials are 1/5 sales pitch and 4/5 disclaimer. LOL

I want to challenge the Doctor is all and would like to see him sell me on SOF/DAC. I assume if he caves on Harvoini he will add RBV but I want him to make the case in that he is extremely sharp.

JimmyK

Canuck · Guru

Jimmy K,

Oh dear Jimmy.

So sorry, I was very much looking forward to sharing the sof/vel/gs-9857 ride with you (and tkflex 36 and webtomass)!

Canuck hmm

Tig · Admin

Did you see this one Jimmy?

Harvoni/Omeprazol

JimmyK · Guru

Silverecho wrote:
Sorry to hear that, Jimmy. That must be super dissapointing. I honestly don't know a lot about the options out there because up to this point I didn't have any hope for a cure, but I do have hope now, for myself and for you. Something will come out soon that will be everything that you need.

Hi Silverecho!

The odd thing is it is not all that disappointing. I got things very straight before donating a gallon of blood and when I read the paperwork all PPI's were excluded. I made it very clear I attempted the Zanac they had mentioned was ok but that did not work out over a course of 4 days and I was quite miserable.To think of 12weeks of that, I believe I'd rather mainline Ribovirin for recreational purpose.

JimmyK

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