Hep C Discussion Forum

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. 

Greetings,

Just back from screening and I was rejected due to use of Omeprozol.

Train ticket was refundable so no problem there.

<sigh>

 

JimmyK

Howdy Tig I appreciate you my friend.

Just feels kind of odd that Houston is "Not Yet Recruiting" but they are calling me in for it.

Am I just a weirdo or what?

Please honor the strike through and give me time to rephrase.

 

 

 

Congrats Jimmy!

Glad to hear it ... !

 

Dave

Ha, the Velpatasvir pills even look streamlined like a magic bullet ...

This shirt has the Eye of The Dragon in the center surrounded by Sof /Vel.

Nasty lil lizard be gone now.

 

I don't know how I missed this thread, but it definitely put a big smile on my face. It's cool to read all the good things that are happening for everyone. I definitely need one of the Velpatasvir shirts to replace whatever compound I'm currently wearing. As ya'll know velpatasvir and I are currently in a relationship at the moment, and she's been very good to me! The train is 1/2 way to the destination point, and I have front seats available for both of you. TK

Yep! Were waitin', waitin', waitin', I'd rather be rollin', rollin', rollin!

Hey, you stole my "Lucinda" mantra !! ... "what will be, will be - and we shall see" ... that was about as positive a one I could muster!

Mallani previously stated some good info re: sof/vel and GS-9857 to both you and I.

IS your trial the "exact same" one as my wannabe one (or one of the ones tkflex36 and webtomas have already started)? Do you happen to have your trial NCT#? Seems to be 3 NCT#'s going (all very similar tho) - a little curious that. As far as I know, mine is NCT02639338, specified cirrhotic and GT3.

Yes, Gilead seems to be trying for a "better" NS5A "replication complex inhibitor" with velpa (formerly GS-5816). On the mysterious (with or without) "GS-9857" added ... there is little detail searchable on this "NS3/4A protease inhibitor", all I could find was that it is also something Gilead wishes to be a "better" NS3/4A protease inhibitor. I think I read GS-9857 was more "pan", a "Pico-Molar" inhibitor, active for 1b and 3a's, but perhaps less potent in 3a's?

And that's all she wrote!

I may have some of the facts wrong, so don't quote me - let me know if you find out anything more informative about "our drugs" please. Would appreciate it.

Saddle up? yeehaw? Your pal, C

Concentrate JimmyK, concentrate!

Think ... velpa, velpa, velpa!

Do not be distracted by any of us gals trying to banter you into place!

If you could just pleeeease stop spinning around in the train station, packing and re-packing your every available drug regime suitcase, and land in one spot, we could get you the right shirt ordered! heeheeheee whee!

umm, btw, which velpa seat have you picked out fer yersef, IF this IS your final train route choice? With or without GS-9857?? - THAT is the question. 

Your pal (and possible fellow velpa train passenger), Canuck 

Ok thanks...

 

But what were we talking about?

 

Zit Damn fool I tell ya.

 

Oh yea!   https://www.youtube.com/watch?v=Mv6_6Si-530

Hey Jimmy,

Might be a good time to change medication anyway. I received this in the mail today.....

Dementia and PPI's

I was afraid you'd say that.

Hmmm, taking stock - you are probably right!

But buck up, you have gotten rid of 3 of the velpa shirts, and maybe you can wear a 4th yourself? C 

Hey JimmyK,

So glad you asked! ... it was definitely NOT low fat, low cal, and likely too high in iron (for me anyway), contained refined food products, high carbs, sugar, salt. I was so unprepared/surprized/flabbergasted at this offer of a "free" and delivered lunch, that I did not know what to choose, no menu, she just said "what would you like?", I guess ... had I thought it out better (low blood sugar moment), if I had said lobster, or steak and eggs, it might have come? In default, I just went with the maitre d's suggestions for the dumbstruck - Tim Hortons, Subway Sandwich, and some other establishment choice I forget now. It hit the spot anyway, as I was depleted, and as a bonus I felt like they thought it was OK for me to cheat on my diet. It came with coffee, juice (I should have asked for dessert and maybe a smoothie as well eh) and it WAS hot, but I can vouch for this, if it this ever happens to you, don't eat it in the actual exam room off the examination table like I did. 

Any other questions?  

Your pal, Canuck

Whal,

WEDS - We jumps in the wagon and skidaddle down to the big city, and overnight it at some cheap motel the night before my big day with the doc. Fasted that night for the lab work the next morning.

THURS - Dutifully (highly motivated) I show up just a wee bit early for my date - (LOL try like over an hour early!) Had to hesitate outside for a bit, not wanting to appear toooo overly-eager, eh (desperate one might think?!). Hard for me in my state to look exactly bight eyed and bushy-tailed, but as I "caved" into my anticipatory zeal (and went in only a 1/2 hour early), I hoped I would appear only as one of the earnest and willing!

Spent quite-some-time there - going from room to room, area to area, office to office for ECG, fibroscan, bloodletting, exams and interviews. Down about a quart of blood, glad they didn't ask for too much urine, as by that time i was out of spare fluid and calories. Get this ... they bought and brought me lunch (as soon as the lab work was finally finished!!) - I was floored! They were certainly super nice to me.

I was really hoping (being that this was my second visit to the doc to talk about getting in the sofo/velpa trial) that he would actually "say" whether I was in (or not) - but alas, it must be true what they say - all good things take time!

 

I DID get that trial consent form signed in blood tho. Next visit (2 more weeks), before I can get confirmation.

They and I will wait (they more patiently than I) for the "newest" test results to return. A lot of these tests I have already had done within the last 6 months by an associate doc, but, whatever it is that is required, I am more than happy to comply.

Only thing I learned "fer sure" is that they ARE very nice, and will help me, that I lost 5 lbs., I am no shorter, lunch was good, and that my fibroscans (4 months apart) "technically" appear to have gone from F3/12kPa to F4/12.6kPa - give 'er take a little. Whal, ya know what they say about them fatty old 3a's eh?, bad reputation for being difficult. 

Boy, they sure treated me well though, and just LIKE I am already in the trial! 

FRI - Home again, home again ... to wait some more, sigh. Maybe only 14 more sleeps! My chauffeur says he is "driving Ms. Crazy".  C

Ok, I promised to do the best I could and I am true to my word. That said;

1) The size has been adjusted and prior to final shipping I am assured the variety is sufficient to cover anyone from a Pygmy to Paul Bunyan.

2) Long Sleeves are not a problem as can be herein shown.

3) The request for a "Turtle Neck" was made but I was informed we ran out of stock of those back in 1967 along with all Tye Dyed Patterns.

4) We made every attempt to provide in wool but the sheep are presently on strike and there is no eminent meeting of the minds at the table.

DISCLAIMER:

As a supplier of unique BS we cannot be held to all requests made however we will make every reasonable attempt to honor any and all requests. In this particular case, our Agent reported back that he was actually laughed at and beat up by a flock of Sheep at the request for (a) the Turtle Neck at which point the laughter began and then (b) beat up and ridiculed as a"SCAB" at the request for wool.

At any rate, having done my utmost to welcome a new Brother I humbly present you with your new shirt.

JimmyK

 

 

Hey, JimmyK - Belly LOL.

Wrong size. I need long sleeves, turtle neck, preferably wool. Thanks, C 

Welcome and know that you found a terrific bunch of folks here. The knowledge, support and smiles are invaluable. 

Thank you everyone for the welcome.

My very same concerns and questions too (mallani) - what drugs WILL I be able to go to IF I DO require re-treatment (after these short treatments of either SOF/VEL 12 wks., or SOF/VEL/GS-9857 8 wks.)

Considering my potential pre-existing impediments to effective treatment outcome (just being a GT3a, ready built for certain RAV's, poorly perfused hard fatty F3, higher VL and iron load, hemochromatosis/polycythemia, etc.), it might have been better had I been in one of the earlier SOF/VEL trials (less the RBV that I would be reluctant to do!) - taking SOF/VEL alone at the prior trial lengths that were 16 wks. long. But, the SOF/VEL success rates remain looking high even at the 8/12 week regimes.

I get no choices in this trial now, yet I have some concerns about the short 8 and 12 wk. arms, and about the rationale/wisdom of the added NS3/4A (GS-9857) to the 8 wk. arm, especially in the case that re-treatment is required.

I just cannot get my head around why they do not pre-test for RAVs/RAV potentials prior to treatment decisions - (initial costs versus potential costs of negative outcomes.)

Should I post my (pre) pre-trial labs (bloods in last 6 months of work-up) for baseline background, before I start posting the trial labs? Does anyone have a "good guess" at "what next" re-treatment drugs might be left for me to use, should I require them?

Thanks all of you for being here for me. Canuck

Hello Canuck, welcome!l

I really hope you`ll be accepted into this trial and wish you all the best of luck.  Please let us know when you hear, I know you`re counting down the days!  Great to hear that you`re already familiar with how the forum works, we`re glad to have you here with us.  As you`re already found out, this is a very friendly group so make yourself at home.

We`ll be looking forward to hearing more from you!  

 

And by the way, what you`ve written in your signature and your bio is just right.. thanks, that`s very helpful. 

 

 

Hi Canuk,

whatever arm you get on, Velpatasvir seems to be amazing NS5A inhibitor (eager to see results compared to Daclatasvir). Seems Gilead is now testing this, already proven to be a new standard, combo Sof+Vel for 12weeks vs shorter tx with added GS-9857 (as NS3/4A inhibitor). Apparently below 8 weeks is no go. Think they had Phase I/II trial 6 vs 8 weeks already and 8 weeks for triple combo is minimum.

keeps us posted! :)

best

Hi Canuck,
All the best for your chances of getting on to the new trial.
I am about to start week 8 of 12 weeks on Rib/sof/dac. It seems like such a short time ago that I was so worried about whether the drugs would actually arrive, whether I would have adverse reactions to them and whether I would be Virus Undetectable at the end. So I can relate to your jitters right now.
My cirrhosis in the last 6 months before treatment was making me very unwell. I found out I had the virus in 1994 and realised that I had contracted it in 1969. So I have spent many years in denial about its significance and my "positive" status. It's become part of who I am. To finally have a chance to be free of it is something I never imagined would happen in my lifetime.
Everyone using this forum is very helpful and friendly; especially the moderators who simply open their wings a bit wider when the next little chicken needs comfort. I have learnt a lot here. Not remembering much of the factual scientific stuff, but certainly being inspired by the courage and positivity of others.
All the best on your train ride and I hope to find out you got that ticket in 8 days time.
cheers,
Syd