Hep C Discussion Forum

Members Login
Username 
 
Password 
    Remember Me  
Chatbox
Please log in to join the chat!
Post Info TOPIC: "I'M IN!! - The 8 week SOF/VEL/GS-9857 Trial"


Guru

Status: Offline
Posts: 3249
Date:
RE: "I'M IN!! - Started the 8 week SOF/VEL/GS-9857 Trial"
Permalink  
 


syd,

This may sound a wee bit nutso (but keep in mind where it comes from, hee hee) - here goes - I am glad you have been slowly semi-ooooming and morphing in and out of que sera sera kinda mode. These states can be rounded out and well-balanced with good doses of fear and anger. This is ALL excellent exploration even if it is exhausting (being forced to have to go through this whole plight, from start to finish), not YOUR big idea, and arrived at against your will! The battle fatigue IS proving to be doing you some good, believe it or not (in my opinion)! I DO understand the need for good self-protective modes that CANNOT be shaken (weird, how fear serves good purposes, no matter how backward that may appear to others) - fear helps battle fear. Go into whatever modes you fluctuate in and out of, they are ALL OK and necessary it seems, maybe even "required". Glimpses forward and backward can be scary (a couple years from now, your forward and backward views WILL be quite different). Even thinking about that right now can be a scary event! I recall early on how allowing myself a few seconds at a time of the exciting, thrilling, trembley feeling of hope for cure to languish around the inside of my head was almost too much to fathom, too much to bear, too much comfort to allow, too exciting, not safe to do too long, too early - a weird state. I allowed that hopeful thinking in, more and more, bouncing back and forth between bouts of joyous bliss and desperate terror. A weird journey.

I wish I could find your original sof/dac/riba then sof/dac thread, the place where you posted all your labs, but for now, i will just rely on your sig below to highlight one item. And this one item IS what you should (every once in a while) go back to look at - clear your mind of everything else (and I mean everything else) and just stare at the words - "UND 9 WEEKS". I know, I know, it will unleash a torrent of self-protective "but, buts", and "what-abouts", and "what-ifs", but it IS a reality, and by looking at this a bit now (although exciting hope can be scary and has to be weirdly balanced out with the oxymoron safety of fear and dread) - you will glean moments of respite from fear and get "glimpses" of your future (before the usual defenses kick back in again). Short re-visits to the words "UND 9 weeks" (and nothing else) is good practice for all that is coming your way. Your function(s) will improve in suit, in good time.

See how many of us feel 'stunned' when cured - can be a hard adjustment, fear takes a long time to give up. The battle is a whole package deal - not confined to just drugs and virus. Fear, being a tool and a symptom, people wait for it to dissipate bit by bit (SVR 12, SVR 24, SVR 48!), and will pack it a long time, until finally one day they can enjoy the vacation without packing along the fear bag. Some may never let go of it (completely) and always drag a bit along with them, you know, just in case, for safety sake! (Prolly me)! Practice up a bit now (like a wee mini-vacation), it will make "later" a little easier, for when you receive your next happy too-exciting VL, and then the next, and then the next!! I was not kidding about the "perfect storm" of excitement, EOT, baby, VL events. Vacations and happy events ARE stressful. I liked your description of being shaken about by the scruff of your neck - from the beginning and through this journey, the WHOLE process IS altering for us, including recovery in the end.

Prepare a bit for it, acclimatize, in advance, for your recovery (I think you already are doing so, and you just haven't caught on to yourself), so that that part is not such a surprize/shock, but (perhaps) more enjoyable in fits and starts. Dare to dream a bit. 

From your nutso pal,  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)



Senior Member

Status: Offline
Posts: 363
Date:
Permalink  
 

Thanks Dave.  I can certainly relate to feeling better, even though I still have a small amount of the virus left. I intuitively knew something good was happening within a day of the first dose.  I always struggled to describe to doctors what HCV felt like, and I wasn't even sure myself if how I was feeling was in fact related to HCV.  It was an icky/toxic/mild hangover feeling that I had most days for 20 years.  If that ever came back I'd know instantly it was HCV even without any blood test because it is such an idiosyncratic feeling; one that has only become truly apparent by its absence, if that makes sense.

As an aside, I have been thinking of late about the possibility ongoing DAA treatment for the subpopulation who are undetected on drugs but who cannot achieve SVR off them.  Just like the anti-retrovirals in HIV...people take them everyday ad finitum to keep their viral loads load down.  I don't understand the science behind DAAs enough to know if this would work in HCV and obviously the current price of DAAs would make this unfeasible, but it's food for thought!



__________________

44 y.o. male, HCV G4 since 1996, F-scan score 9, F2, Failed prior I/R, finished sof/vel/vox 8 weeks 5/16, pre-treatment VL 2 million, EOT UND, EOT+4 UND, EOT+12 UND.



Guru

Status: Offline
Posts: 1515
Date:
Permalink  
 

Hi Pablito,

I was <15 Detected at wk 4 and although I am still waiting on my SVR I have ZERO doubt that the Dragon is Dead, Gone, Finito!

My EOT was 04/12/16 and since then I am feeling stronger, more stamina, better at times than I can remember feeling in the last 20 years. I haven't even cleared all the Riba (it does still catch me if I forget to drink enough water or don't get any exercise) but I can tell my body, my system is working better overall. So far this is only anecdotal since I haven't had any more RNA testing done since wk 4 (and won't until wk 12 post Tx) but I know I am cured of HCV.

I was initially upset that I had to wait until wk 12 to finally see Undetected (that was during the last 4 wks of Tx) ... upon completing Tx, however, I have only concentrated on doing whatever I needed to improve life and help my liver and system heal from 40+ years of HCV and the treatment that I had just gone through.

You will do fine, micro analyzing things at this point, as others (and you yourself) have said is not going to help ... you must have faith in a higher power, yourself, these remarkable drugs and your newfound friends here that you will be fine ... thinking positive will eliminate stress that will otherwise only work against you ... no need for that ... thinking positive is a tool that you can use to help fight this battle and heal after ... use that to your advantage.

 

Dave

 



__________________

63yy,HCV,2b,F3-A1, Sof/Riba,12wks Tx   SOT: 1/20/16, HCV-RNA 9,816,581, ALT 56, Hb 14.6

4wk: HCV-RNA <15 Detected, ALT 15, AST 17, Hb 13.6 EOT: 4/12/16, ALT 18 , Hb 12.9176a2f85d05d9c965eafe199f2ba9ba5.jpg SVR Achieved 7/8/16

 



Senior Member

Status: Offline
Posts: 363
Date:
Permalink  
 

Jimmy - thanks for taking the time to do the graphs...encouraging!



__________________

44 y.o. male, HCV G4 since 1996, F-scan score 9, F2, Failed prior I/R, finished sof/vel/vox 8 weeks 5/16, pre-treatment VL 2 million, EOT UND, EOT+4 UND, EOT+12 UND.



Guru

Status: Offline
Posts: 1839
Date:
Permalink  
 

Hi Pablito.

Because of the type of work I do I am supposed to be able to put together quick data to identify trends.

Here is what yours looks like in a matter of 4 weeks.

So long as the trend line remains on a downward path you are doing fine.

Your chart and then mine.

You are concerned because you are normal. But your concern is premature.

As long as you continue on a downward trend you are cool. If the trend rises then you have something to discuss with your Doctor.

Presently I am UND and to be honest, it does not mean jack until they tell me that on December 23rd of this year.

Hang in there brother!

 

 

 



Attachments
__________________

Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."



Senior Member

Status: Offline
Posts: 363
Date:
Permalink  
 

Having looked into it a bit more, it seems a two sided coin...

- the positive predictive value of being undetected at 4 weeks is very high, i.e. the chances of achieving SVR12 are very high

- at the same time, the negative predictive value of being detectable at week 4 is low, the chances of not achieving SVR12 are still low, if a bit higher than above

Is there anything I can do about it? No.  Am I in my head and worrying unnecessarily? Yes.  Is it human to worry about not receiving good news? Yes.  

It's an emotional response, not a logical one.  I've seen people on here flip out because their 4 week test came back at <15 IU/ml detected so please forgive me if I am disappointed to have a score of 269, one that puts me in the 3% or so of people who aren't undetected at this stage...even if it still means my chances of SVR12 are good it would have been reassuring for the VL to be <15 at this stage.

On a practical note, do you know of other members on here who whose VL was >15 at week 4 (or later) who went on to achieve SVR12?  I think I would find that reassuring.

Pablo



__________________

44 y.o. male, HCV G4 since 1996, F-scan score 9, F2, Failed prior I/R, finished sof/vel/vox 8 weeks 5/16, pre-treatment VL 2 million, EOT UND, EOT+4 UND, EOT+12 UND.



Guru

Status: Offline
Posts: 1031
Date:
Permalink  
 

Get out of your head Pablo and enjoy today. You are projecting and that does no good. All we have is this moment......enjoy. 



__________________

Wendy 53 y/o, DX 1994, geno 1A F1

1999 TX 1 - Inter -non responder 2001 TX 2 - Peg + Riba - viral load tripled and taken off

T3:  Harvoni 12 weeks Sept. 19, 2015 ALT 41 AST 30 VL 541800 UND at EOT and SVR 24 ALT 18 AST 26 platelets 223

 

Tig


Admin

Status: Offline
Posts: 8986
Date:
Permalink  
 

Relax Pablo and put away your calculator! The percentage of people being undetected at a given point during treatment may be a nice morale booster, but it doesn't impact the SVR12 rate of 96% in the category of patients you are with on this train (trial). You'll be successful, I think you should relax and enjoy the scenery as your journey nears the station! 



__________________

Tig

63 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 5+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

Signature Line Set Up/Abbreviations   Payment Assistance

 



Senior Member

Status: Offline
Posts: 363
Date:
RE:
Permalink  
 


Hi all. I was literally just logging in to this forum when I got a call from the trial nurse. So my week 4 VL was 269. Just to recap, my pretreatment VL was 2.1 million, week 1 was 3000 and week 2 was 1000. So all heading down but I am worried that given that 97% of people on previous trails of Sof/vel/GS9857 are undetectable at week 4 that 8 weeks isn't going to be long enough for me. I know week 4 is just week 4 and this doesn't mean I won't achieve SVR but if you plot the curve of decline the rate is slowing down, and even if I maintained the 4 fold drop achieved between week 2 and 4 for the remaining 4 weeks of the trail I still wouldn't get below 15 IU/ml, never mind having a few last weeks of the trial at undetectable to nuke the few remaining baddies. So I haven't thrown in the towel but I am realistically concerned. Pablo

__________________

44 y.o. male, HCV G4 since 1996, F-scan score 9, F2, Failed prior I/R, finished sof/vel/vox 8 weeks 5/16, pre-treatment VL 2 million, EOT UND, EOT+4 UND, EOT+12 UND.



Guru

Status: Offline
Posts: 1031
Date:
RE: "I'M IN!! - Started the 8 week SOF/VEL/GS-9857 Trial"
Permalink  
 


Good times coming Syd. 2 big events very close together

I do like Pablo's avatar and Canuck's description of hers and the mantra. Back when I did the peg and riba I thought of pac man eating the virus.  

I have always been a believer of we have to work hard for some of these things (in life) but the effort of you all obtaining your tests results is unreal. I guess I am very blessed with my gastroenterologist. Now his scheduler is another story for a different day and thread. 

 

 

 



__________________

Wendy 53 y/o, DX 1994, geno 1A F1

1999 TX 1 - Inter -non responder 2001 TX 2 - Peg + Riba - viral load tripled and taken off

T3:  Harvoni 12 weeks Sept. 19, 2015 ALT 41 AST 30 VL 541800 UND at EOT and SVR 24 ALT 18 AST 26 platelets 223

 



Guru

Status: Offline
Posts: 552
Date:
Permalink  
 

Hi Canuck,

good lord girl - you ARE like a dog with a bone! Good for you. I just don't have that level of perseverance. It's not upsetting me much any more though. When Dave says he "knows" he's no longer got the virus, I sort of understand where he's coming from. Of course, knowing me as you do, you will be going what??? Is she that optimistic??? And the answer is no I'm not - but I've got a much more que Serra attitude now. You know, whatever will be will be. I know I'll cope with whatever the outcome is because basically there's no alternative. I think it must be something to do with reading so many inspirational ups and downs here.

Of course, it will be great to finish treatment and that's less than a week now but the road after that can look after itself for a while. 

In the meantime my daughter went to see her obstetrician today - she gave her a cervical "sweep" ( not sure what it is, but maybe something I could do with myself biggrin). She is already 3 cms dilated but that's not a guarantee she will deliver in the next 24 hours. Baby not distressed, mums not as distressed as me - so it's all looking good. 

Big hugs,

Syd



__________________

Contracted Hep C 1969. Genome Type 2, treatment naive. Began 12 week RIBA/sof/Dac on 12/11/15. Cirrhosis. VL before treatment 4m. Treatment extended another 12 weeks without Riba. No virus detected at 9 weeks.



Guru

Status: Offline
Posts: 3249
Date:
Permalink  
 

syd,

It is MORE than a "chore" for sick and tired people to get copies of (or even be informed of) their tests in a satisfactory and timely fashion. All along, before trial, during (and after) it will continue to be this way for me. And I suspect the same difficulties are encountered by many, regardless of whether you get in a trial or not. For me, one bonus is that at least trial people will generally get more VL's done. Any tests I have had, or will continue to have (outside the trial walls) will consistently remain hard to obtain copies from.

I have done well tho, to dredge up stubbornly missing test reports, just simply because I was like a dog with a bone. Obtained them one way or another, most often learning how the hard way.

Many of my labs and tests for diagnosis and work-up were "compilations" collected from all over the place, done at small rural labs with many of the special bloods being shipped out to large testing facilities far away (before those results could return), tests at small and medium sized hospitals. Each lab, each testing facility and each hospital having their own "rules" a pt. must work around. If an interpretative report was required from the test, that expert's notation/dictation might add many days or weeks to a test returning.

I memorized "my own rule" each time I presented myself for anything ... "a copy of the results MUST PLEASE go to ... " then I would name my LIST of involved parties at differing locations. Sometimes my request was immediately thwarted, fine, I would just have to do extra leg work to make sure I and everyone got a copy. Sometimes, even after you thought they had dutifully understood you, copies still would not appear where wanted. Missed blood drawings, test results temporarily delayed, seemingly/mysteriously "lost", or, the connecting specialty facility overrides and has their own internal cardinal rule NOT to send extra copies out ever - just one copy to one ordering physician, only! Not easy for a person to figure out and make work.

At one point, I actually had 3 charts, 3 doctors, 3 locations going all at the same time and trying to ensure everyone, plus myself were all fed with ALL the test results. TOO MUCH!! My "3 charts" dropped from 3 to 2, by the time I was well-worked up for my trial. The two charts now live with my reg. small town GP and my final trial doc. Since trial I have only had to deal with the sharing of info between these 2 docs, and (mostly) via 2 labs. I will have to have some more specialty facility testing sent out from my small rural lab again. And of course, if I get another U/S, it then involves dealing with another different city hospital, only about 2 hours from here.

What really helped, was my own small town rural GP - by me asking each time for any test result to be sent to him (as well as to my trial doc), I could much more easily obtain (for myself) copies of reports, results and consults from my GP's office.

I had to provide all my own copies of Gilead trial lab testing reports from the coast, to my local rural GP, to keep him updated, the trial doc did send him periodic "consult reports" tho, minus the trial labs.

Yes, to your question ... about signing a "trial agreement" where I authorize them to take and keep my blood, and even "extra" blood" (collected during the trial) exclusively for Gilead's own research purposes. Gilead will own this collected blood for a long time. This blood and whatever future research/or study they may do with it, might help Gilead or other/future patients. All the RAV bloodwork, drawn throughout the trial, is not given to trial pts.

Don't give up on retrieving your hard won and hard to obtain test data for your own ongoing comparative purposes, pick away at it again, when you have the gumption, energy and patience to. It IS ridiculous and frustrating work I know. Try to use phone or fingers first, considering your long distances, maybe your own GP will be the go to landing place, like I have set up. I don't know how it can be made any easier, due to your particular situ. Like you, I would be very keen to know my U/S for comparative purposes (I asked for a repeat U/S and it was declined, for now), I will have to keep trying for that one.

Your aaaalmost done girl!!!! And new babe, aaaany minute - it gonna be a perfect storm of glee. 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)



Guru

Status: Offline
Posts: 1515
Date:
Permalink  
 

Pablito wrote:

Ah, yes, now that I am a vet, I need an avatar picture.  Gonna find me a meditation photo, or similar.  Not that I meditate (tried it x many times, but can't stick with it), but something zen-like now that the icky/toxic/brain fog feeling has gone.

P


 Yes Pablito, your avatar is quite mesmerizing  smile ... I always refer to my gardening as zen-like and since Tx I find myself very much enjoying the clarity (lack of fog) ... and seem to find more value in simple things, than before learning that I had HCV and weaving my way along the path to EOT. I feel as though this whole trip has been a lesson and has brought me into this legion of most wonderful Dragon Slayers.

 

Dave



__________________

63yy,HCV,2b,F3-A1, Sof/Riba,12wks Tx   SOT: 1/20/16, HCV-RNA 9,816,581, ALT 56, Hb 14.6

4wk: HCV-RNA <15 Detected, ALT 15, AST 17, Hb 13.6 EOT: 4/12/16, ALT 18 , Hb 12.9176a2f85d05d9c965eafe199f2ba9ba5.jpg SVR Achieved 7/8/16

 



Guru

Status: Offline
Posts: 552
Date:
Permalink  
 

Hi Pablito,

just a quick note to say it's Thursday am in australia and so it must still be maybe night time in the UK? In any case, I hope you get those friggen results today. 

Your post on the subject was very informative Canuck. Gilead make you sign something that says the data primarily belongs to them and some of it may never be released to you???? 

Im sure I'm not on a trial, just need the hospital because of the "compassionate" grounds under which I got the daclatisvir. I just assumed that the info from my tests was legally mine to access and that dr apathy, over work and strained system was what called the shots. It was very satisfying last week when the hospital dr reminded me to have blood tests for viral load taken at the hospital and I refused. Nicely of course, I'm not on riba any more! 

i said I would have it done privately and they can access it as they may. I'm over waiting an hour and a half for blood tests in that place and then being given maybe three results, a month later, on the front page because they're too busy to notice they pressed "print front page" instead of "print entire document". 

Ahhh dear......ommmmmmm



__________________

Contracted Hep C 1969. Genome Type 2, treatment naive. Began 12 week RIBA/sof/Dac on 12/11/15. Cirrhosis. VL before treatment 4m. Treatment extended another 12 weeks without Riba. No virus detected at 9 weeks.



Guru

Status: Offline
Posts: 3249
Date:
Permalink  
 

Nice one Pablo,

Linux, syd, wendy and others good at oooooming will approve.

I stuck with the clinical hide-behind the molecule velpa one. I like to count each of the molecules as my form of zen. I also like to hum a little tune along to my velpa anthem, kinda on the negative side - but works for me!! The beat kinda goes ... kill, kill, kill! (repeat). For anthem, see "Rant and Rave - Bad Poetry section - Ode to a virus". wheee!

I could not, for the life of me, figure out how to "borrow" the velpa pic from Gilead and get stuck on to me as an avatar. After some obvious stumbling around fashing keys uselessly, some kind soul(s) here (I never did figure out who, to thank them) helped and posted it up for me. I ain't too adept a computers to say the least. 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)



Senior Member

Status: Offline
Posts: 363
Date:
Permalink  
 

Ah, yes, now that I am a vet, I need an avatar picture.  Gonna find me a meditation photo, or similar.  Not that I meditate (tried it x many times, but can't stick with it), but something zen-like now that the icky/toxic/brain fog feeling has gone.

P



__________________

44 y.o. male, HCV G4 since 1996, F-scan score 9, F2, Failed prior I/R, finished sof/vel/vox 8 weeks 5/16, pre-treatment VL 2 million, EOT UND, EOT+4 UND, EOT+12 UND.



Guru

Status: Offline
Posts: 3249
Date:
Permalink  
 

Pablo, 

I agree - the sig line (like a pic) IS worth a thousand words??!! hee hee Believe me, I (and others) have tried to squeeze more into a sig line (as we go along), but it is not possible. Less than 300 characters (like two hundred and something i recall). Tough for the verbose like me! Oh how i envy succinct, concise people, who can convey well with brevity. .

aah, so glad to hear you got a hold of her - well, at least there is some chance now that you "might" be able to find out Thurs. what your VL is, perhaps call her on Thurs?, and ask her to read out to you on the phone what the VL number is from the report that gets faxed to her? Or, she could scan and email the report to your email address, or, she could fax a copy of the report to you? She could just leave you a voice mail, text on Thurs??

Hey, yes, that "vet thing" they spring on us is a bit rattling, especially so when they later rip that nice badge off and throw you down in the senior hole with the rest of the old fogies. The seniors thing doesn't come with pension either (I asked)! 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)



Senior Member

Status: Offline
Posts: 363
Date:
Permalink  
 

Hi Canuck

Now I understand.  I got my wires crossed.

One of the things about this forum (or any forum for that matter), is that it can be hard for a new person to understand a given member's situation without reading all their previous posts in a thread.  And even then - and I have done it - it can sometimes be hard to work out what's going on.  

The signature does help though.

Not being critical here: just a practical observation.

Pablo



__________________

44 y.o. male, HCV G4 since 1996, F-scan score 9, F2, Failed prior I/R, finished sof/vel/vox 8 weeks 5/16, pre-treatment VL 2 million, EOT UND, EOT+4 UND, EOT+12 UND.



Guru

Status: Offline
Posts: 3249
Date:
Permalink  
 

Pablito wrote:


It does seem strange that VLs can't be given out during the trial?  Is it open label or blinded?  The only reason I can think of as to why they couldn't give them out is if participants and researchers are blinded to the arm you have been allocated to.  But then it wouldn't make sense that they would give out other blood tests like LFTs.

There'll be some scientific or practical reason why they can't give VLs, but must be frustrating for you.

_________________________________________________________________________________

Pablo, Over/ under/in " Improvements After Treatment" (as above), I was trying to figure out if you were you kinda responding "specifically" to SF's scanty (few and far between) VL's that were offered to him throughout his treatment? If so, then maybe SF can confirm this better for you, but it was my understanding SF was NOT really "IN" a trial per say - yes, Harvoni treatment, but as far as I know, SF was managed via a collective of expertise, not a "true trial"? I do not think they were "withholding" any known VL's or labs from SF, (not like VL's had been drawn and then not revealed to SF), more like the docs treating SF saved themselves the expense of lab testing, decided how many VL's they would do (frequencies of their own collective making, based on governmental, provincial, health "authorities" accepted "best practices"/guidelines, protocols that they chose to use and go with), for "how much" testing they feel is allowed/ permitted/warranted/justified, or "should be" done and when. Objective feedback - not my idea of a logical, kind, empathetic updating to allow a patient to know better that they are indeed responding well to a treatment for a fear-laden malady. Cruel and unusual punishment I say!

The trial you and I are in? .... yes, all the labs/data Gilead orders/asks for, is THEIR data. Like Jimmy says, Gilead's data belongs to Gilead. Gilead is number one in ownership. There is an understanding though, that the data is (or will be) made known to the trial doc(s) second - trial docs are second in line to know data. Last in line is the pt.

Not specified in the written trial agreement I signed, but outside of that, my doc and staff (who perform my trail for Gilead), informed me "verbally" that they themselves would provide to me at each appointment, lab info from the prior appointment, at the very next appointment. Not all, just basic bloods, VL's, ecg's, etc. (The rest of any data belongs to/resides with Gilead, some of which I will never be privy to, as per the agreement). But, further, my doc and staff offered, being that (1) I lived far away from their office, and, (2) that I wished to know ASAP what my VL/labs were, they said I could phone them soon after my week 4 VL was drawn to find out that result, otherwise i would have had to wait until my week 8 appointment to find out what the week 4 VL was. Same for my week 8 week EOT VL, they said I could phone them soon after to find out, rather than waiting for my next appointment at week 12. Very humane I think.

If you are outside a trial, or, if you were "in" some other kind of trial (such as blinded or double blinded one, as you mentioned) then that would be a dif. story - like webtomass's trial, where his trial WAS "partially" blinded for some reason, and which differed from ours or tkflex36's. Outside of trials, it seems they are governed by other best practices rules. 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)



Senior Member

Status: Offline
Posts: 363
Date:
Permalink  
 

Hi Canuck

So she did get back to via email even though it was the wrong email I had used.  Strange.  Must have been an old email she gave me that was forwarded on to her new one (which I now have).

She says the results are faxed to the clinic and she can't access them until Thursday when she is next there.  They actually do clinics on a Monday and a Thursday.  It's just that I work in kent (next county south of London) on Thursdays so I'm up early and back late and the day is usually so busy I don't have time for other things.

Pablo

Ps - I see I am now a "veteran member" of this board.  Is that an upgrade, of perhaps the the default one?  At least I'm not a newbie!!!!



__________________

44 y.o. male, HCV G4 since 1996, F-scan score 9, F2, Failed prior I/R, finished sof/vel/vox 8 weeks 5/16, pre-treatment VL 2 million, EOT UND, EOT+4 UND, EOT+12 UND.



Guru

Status: Offline
Posts: 3249
Date:
Permalink  
 

Pablo,

Today is Tuesday night (for me anyway), and you think you will have to wait until next Monday to phone outpatient dept. to get anywhere? Oh, too long a wait, if you are wanting to know!

I am not sure I am completely understanding "how" your clinic works (out of the outpatients dept.), I assume your trial doc and nurse are only appearing there one day per week (Mondays)?, but regardless, maybe if you phoned outpatient dept. now, and explain that the mobile number and email address (the ones the clinic nurse expressly made sure to give to you, so that you could contact her), are not working, that you are waiting for important test results, perhaps outpatients will be of some sort of assistance to you.

Read out the mobile number and email address (the ones the clinic nurse gave you) to outpatients and (1) ask outpatients to confirm whether these are indeed correct or incorrect. And, whether these are the only known mobile number and email for your nurse. (2) Perhaps they will provide you with a different mobile or email for her (you never know)! OR, perhaps, if there IS another way (that the outpatient staff just use themselves to contact her, for their own purposes) - then, (3) ask if they will contact this nurse, on your behalf,  to request the nurse to phone you, as you cannot get through.

If your doc and nurse ARE ONLY in the outpatient clinic one day per week (Mondays) then I assume your chart/results (perhaps) "reside" there, somewhere? If your doc and nurse work elsewhere, have other clinics on other days, perhaps your data does travel with them "virtually"?, or not - I don't know how your clinic record results are handled or stored, or, who else may have access to them. (4) Perhaps "other staff" in outpatients might already have the authority to inform you of your results?? I don't know how your system works there.  

I would, at minimum, bump heads with outpatients (as above), and continue to phone message, and text your nurse, once per day, until something hopefully works

Persist, politely, you never know! Turn all stones, exhaust all avenues (if you want to) - where there's a will, there's a way! (or not). Even if you can't make it work any quicker, at least you would know you tried. (Wise ole tig said that to me one time!)

BTW - Some of my VL's seemed to return quickly! The last VL took over a week to come back. The longest, I think, was 9 days (drawn thursday, known to me by the following Friday).

You might be OK with waiting, patient enough, but it would drive me nuts!, I would always default to knowing as soon as I could (but that's me)!

Ya, syd, sorry I lost that post too! Hate it when that happens! Bummed me out, you can never really duplicate these off the wall/off the cuff things. I'll still get some mileage out of it tho, by just claiming it was brilliant or hilarious (how will you ever know)! No oomph to try to re-create it. I'll get me some new material - you are my best inspiration! biggrin 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)



Senior Member

Status: Offline
Posts: 363
Date:
Permalink  
 

"This is basically a life and death struggle we're involved in here. We've got a lot riding on these results - emotional and physical"

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

I don't think you could have put it better, Syd.  That describes our experience in a nutshell.



__________________

44 y.o. male, HCV G4 since 1996, F-scan score 9, F2, Failed prior I/R, finished sof/vel/vox 8 weeks 5/16, pre-treatment VL 2 million, EOT UND, EOT+4 UND, EOT+12 UND.



Guru

Status: Offline
Posts: 552
Date:
Permalink  
 

Canuck, Im devastated your post has disappeaerd into the ether.furious

Pinkie and Barry are taking me around to my daughter's now and I'm hoping it's only ground hog day for him and not for the two leggeds.

Hugs to Wendy and Tig- you always roll with my smut with remarkable tolerance.

Syd



__________________

Contracted Hep C 1969. Genome Type 2, treatment naive. Began 12 week RIBA/sof/Dac on 12/11/15. Cirrhosis. VL before treatment 4m. Treatment extended another 12 weeks without Riba. No virus detected at 9 weeks.



Guru

Status: Offline
Posts: 552
Date:
Permalink  
 

Hi Pablito,

withholding viral load tests and blood tests as well has been a recurring theme for many of us. i think it's just incompetence rather than wilful sadism but many of these people don't understand something which is very obvious to us. This is basically a life and death struggle we're involved in here. We've got a lot riding on these results - emotional and physical.

I try and remind myself that they will still be sitting there exactly the same regardless of whether I know them or not. 

Good luck,

Syd



__________________

Contracted Hep C 1969. Genome Type 2, treatment naive. Began 12 week RIBA/sof/Dac on 12/11/15. Cirrhosis. VL before treatment 4m. Treatment extended another 12 weeks without Riba. No virus detected at 9 weeks.



Guru

Status: Offline
Posts: 3249
Date:
Permalink  
 

hey syd, 

just lost a very long post, in response to your delightful doggy story, which now (since it has irrevocably been lost), you will just have to take my word for it, that it was a good'un back at ya. De-rat it all! Oh well, some days are diamonds, some days are glass. 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)



Senior Member

Status: Offline
Posts: 363
Date:
Permalink  
 

Oh Canuck: superior vocabulary, superior scientific knowledge.  I'm starting to feel to feel inferior here!

I tried to hold of the trial people today to get hold of my week 4 VL, which was taken last week.  The trial nurse gave me her mobile number, but she told me that rarely checks it. So I emailed her, but the mail bounced saying no such email address exists.  I texted her.  No joy.  Emailed the trial doctor but got an out of office message (away until Sept!)  I guess I'll have to wait until Monday when they do their clinic when I'll call the outpatients department the clinic is based in.

Oh well, I'll crack on with season 5 of Game of Thrones in the meantime.  The episode I'm watching currently is called "The Dance of Dragons"....kind of appropriate, wouldn't you say!  "Dragon Slaying" would be better though!!!



__________________

44 y.o. male, HCV G4 since 1996, F-scan score 9, F2, Failed prior I/R, finished sof/vel/vox 8 weeks 5/16, pre-treatment VL 2 million, EOT UND, EOT+4 UND, EOT+12 UND.



Guru

Status: Offline
Posts: 1031
Date:
Permalink  
 

I am so glad I recently went to the bathroom or I would have had an accident from laughing so hard. Syd that was priceless. 



__________________

Wendy 53 y/o, DX 1994, geno 1A F1

1999 TX 1 - Inter -non responder 2001 TX 2 - Peg + Riba - viral load tripled and taken off

T3:  Harvoni 12 weeks Sept. 19, 2015 ALT 41 AST 30 VL 541800 UND at EOT and SVR 24 ALT 18 AST 26 platelets 223

 

Tig


Admin

Status: Offline
Posts: 8986
Date:
Permalink  
 

OMG.... Syd, Syd, Syd.

I wasn't quite sure where you were going with your story. With the baby might come today, the dry humping prowess of Barry and the acceptance of his friend Leroi. Then the hair in that hidey hole boys hold so dearly. When I got to that point of the story, I was laughing outloud. Then the picture brought forward of you holding Barry's head, while your son extricated "said dick" from it's hidey hole to give things a trim was too much. I couldn't keep the coffee from squirting out my nose as I laughed even harder. Thanks, I've got quite the mess, my beard is covered with coffee, I' needing to change shirts and my dear wife thinks we're all certifiable, but she's laughing too! 

biggrin



__________________

Tig

63 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 5+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

Signature Line Set Up/Abbreviations   Payment Assistance

 



Guru

Status: Offline
Posts: 552
Date:
Permalink  
 

Hi Canuck,

I'll have to do a bit of thinking for this event. What date do you receive your post 12  blood results?

Friggen scarey to be losing so many of my words. Don't speak about memory to me because when I see you go in to scientific mode the grey matter yawns, words and numbers turn into scratches on my screen and all I know is, if I'm not SVR after 12 weeks, I want you to tell me what I should be banging the hepatologist's desk to get next. 

Your partner sounds like good value. Human clock, reminder service, fashion advisor, chauffeur, chef, life coach..... What a darling. 

I know i should put the next bit into unrelated miscellaneous posts but I'm here now. 

My daughters baby is due in 6 days. She phoned this morning to ask me to come over as she didn't want to be alone while her husband was at work. She has had quite strong regular pain all day and I have been playing with the babies and trying to be generally useful. We both thought she would be in hospital tonight but the pains haven't got longer or stronger so I have come home. It's hard to see her like this. 

she has a pomeranian boy dog called Leroi who is quite accommodating when it comes to Barry's ( see small dog on left) mindless dry humping. Barry is usually left with a huge hard on which takes half a hour or so to go down enough for him to walk. Day after day he stands there looking penitent and contrite but the next time he sees LeroI all is forgotten and its ride em cowboy once again. 

I got home tonight exhausted and my son came up to see me. Barry was snoozing in post coital bliss on the end of my bed and my son said what's happened to his dick? Well To be honest I've come down in the world since the days of regular clips and dye jobs and his coat is  rather long and scruffy at the moment. What had happened is that as his penis subsided it took quite a lot of dick hair into his foreskin with it. It was an infection waiting to happen. So I have spent a good half hour holding his nervous head while my son gently extricated aforesaid dick hair and cut it off to prevent same thing happening tomorrow. (okay I got the better end of the deal I'll admit.) 

Thats why it was nice to hear about your husband. I need reminding that all those knobs aren't more trouble than they're worth. 

Take care - well more care than Barry!

Syd

confuse

Ps. No offence meant to any of the members of this forum who happen to own one.

biggrin



__________________

Contracted Hep C 1969. Genome Type 2, treatment naive. Began 12 week RIBA/sof/Dac on 12/11/15. Cirrhosis. VL before treatment 4m. Treatment extended another 12 weeks without Riba. No virus detected at 9 weeks.



Guru

Status: Offline
Posts: 3249
Date:
Permalink  
 

Hey toe man,

Thnaks so much. Yup, you came through on your promise to me, but good! And I will too, in mine to you. Will be thinking of you on the 19th. Give 'em hell!

Polaris star dust you called it - you'll be sprinkled soon. Due time.

Hey, if you have any stones, get them to put them in a bottle to take home - I want glossy pics, lots of them.

I protested vehemently when you had second thoughts and decided to edit out your toe surgery pics in all it's lovely gory glory! Lap will be a breeze and soon forgotten (compared to toes!)  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)



Moderator

Status: Offline
Posts: 913
Date:
Permalink  
 

Hi C,

        I'm so happy for you.  You did it, you made it, you slayed it!!   It went fast dident it? At least it seemed so to me. You got the stars to line up for you. You did your homework, got into the perfect trial for your geno type, and kicked ass!!   You know how much I wanted this for you. Congratulations.  RC

 

 

 

 

 

 



__________________

 M-61(3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017)   SVR-12. 3-13-18 https://aasldpubs.onlinelibrary.wiley.com/doi/pdf/10.1002/hep4.1280   



Guru

Status: Offline
Posts: 3249
Date:
Permalink  
 

Yes, seems you and I have read all the same studies and info now, but likely you will understand and retain the info way better than I ever will. 

Further, gs9857 is described as:

... this (NS3/4A protease inhib.) GS-9857, typified thus:   ... "active for 1b and 3a's, an Aco-molar inhibitor, (thought more) panogenic (but perhaps) less potent in GT3" ... 

... (similarly to the development of NS5A VEL) this particular (gs9857) protease inhib. is hoped to be of "better design" - "more pan", perhaps better more "potent", thereby more effective for me as a GT3a ...

... What remains for me is the fear of not being able to completely minimize failures for all GTs with pans, and failures with fit persisting RAV's to the newest NS5A's and NS3/4A's. Perhaps one saving grace WILL be the higher resistance factor of the GS-9857, and the higher pan potency with both VEL and GS-9857 ...

 

As an "add" (to speak of gs9857 in vel combo's) ... does seem to be weighing in heavily on the side of "pan" enough, "potent" enough for GT3's, and, potent enough for shorter treatments ...

Yes, on the good (amazingly) fast load drop decimation, 3 to 5 days found.

Same as you, I have read some of these "result numbers from comparative trials", re: ledi vs vel , but also read between the lines elsewhere (especially pertaining to gt 3a's and Ravs) and noted a contributory superiority (taking into account cirrhosis levels, gt types, AND commonly associated RAV specific to gt's, which still leads me to side on vel OVER ledi in some cases for a gt3a's. Over dacla too in some cases.

To get my head around gs9857, I have been trying to read up on "older" 1st generation NS3/4 (P.I.'s) protease inhibitors, such as: boceprevir, telaprevir. Some later and newer and second generational ones - danoprevir, vaniprevir, as well as paritaprevir, simeprevir, grazoprevir. With the development of same, much has to be sorted as far as me EVER understanding how to separate them apart within their "class"(s) of P.I.'s!! Big difs. between "aco-molar" (gs9857), subnanomolar (vaniprevir?), and macrocyclic (grazo)!!! Very tech. and well beyond me!! But you do glean some teeny tidbits along the way, like how some P'I';s must be doled out, not at all, or, "with care" in high classed decompensating livers.

(I stashed some gt3 info on a page in this site under "General Discussions - GT 3's and Sof/Vel trials", hoping to make it easy for gt3's to have a go to place, but so far I just blab gt3 stuff everywhere!) 

C.



-- Edited by Canuck on Tuesday 17th of May 2016 05:24:19 PM

__________________

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)



Senior Member

Status: Offline
Posts: 363
Date:
Permalink  
 

This is one of the best articles I've found.  It summarises most new developments with DAAs.  You have to scroll all the way down to near the end to get to the sof/vel/GS-9857 info.

Although not specifically about GS-9857, I find the German HCV registry data very encouraging as it's based on real world patients rather than those is clinical trials.



__________________

44 y.o. male, HCV G4 since 1996, F-scan score 9, F2, Failed prior I/R, finished sof/vel/vox 8 weeks 5/16, pre-treatment VL 2 million, EOT UND, EOT+4 UND, EOT+12 UND.



Senior Member

Status: Offline
Posts: 363
Date:
Permalink  
 

"Echomimetico".  Now you got me there, Canuck.  Never heard that word before, but I love it and will be using it hence forth.  

Re GS-9857 this is what I've learned so far:

- NS3A/4A protease inhibitor

- pan-genotypic

- it's potent: in phase 2 studies one tablet led to a median 3 log drop in VL

- when used in conjunction with sofosbuvir and velpatasvir for 12 weeks in a large study it achieved SVRs of a very impressive 99%

- when the x3 therapy is used in a difficult to treat population (cirrhosis, past failed DAA treatment) for 8 weeks 95% SVR is achieved but only 89% when ribaviron is added

- so it seems for some reason ribaviron reduces the effect; either that or the sample size in the difficult to treat study was small and led to an inaccurate result in the ribaviron-added arm

- there is some success with 6 weeks x3 treatment, but far less so 4 weeks

- like all the DAAs, it's pre-treatment RAVs to the specific DAA that play a role in failed SVR or relapse post treatment

- the x3 treatment has a high barrier to during treatment emerging RAVs

In summary the x3 therapy is probably the best around when used for 12 weeks and looks like - when it comes to market - it will be the treatment of choice for people who have failed treatments with the other DAAs and/or have cirrhosis. 8 weeks seems fine if you don't have RAVs, but if you do then 8 weeks is slightly less effective than the most commonly available current treatment, i.e. 12 weeks Harvoni.

Pablo



__________________

44 y.o. male, HCV G4 since 1996, F-scan score 9, F2, Failed prior I/R, finished sof/vel/vox 8 weeks 5/16, pre-treatment VL 2 million, EOT UND, EOT+4 UND, EOT+12 UND.



Guru

Status: Offline
Posts: 5622
Date:
Permalink  
 

Fantastic news, congrats Canuck, I'm very pleased for you!!  biggrin



__________________

Jill 

(70 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.

 

 



Guru

Status: Offline
Posts: 679
Date:
Permalink  
 

Wonderful News Canuck,

You just made my day. I am more than thrilled for you. This is great. I am speechless and wish you so much happiness and good health.

SF



__________________

65 yo, GT1A, , Cirrhosis, F-Scan F4 33.5, TX Naive Harvoni 12 wks

SOT 2/9/16 / ALT 187 AST 114 VL 2.3M.    POSTS

EOT 5/2/16  ALT 35/ AST/25  platlets 126 C/B VL UND

EOT +12 7/26/16  ALT 25 /AST 22/ ALP 83  platlets 129 C/B VL UND

EOT + 24 10/18/16 ALT 27/ AST 20/ ALP 71 platlets 153 C UND

 * SVR *



Guru

Status: Offline
Posts: 3249
Date:
Permalink  
 

Hey thanks for the glee guys. I'm happy your happy. So back at ya! Good all around. Yup, it's feeling mighty fine alright. All this back and forth happiness is kinda dizzying

syd, I like the visuals. This thing you got planned, I could "do" pink alright (if I owned any), but being that I have no sense of dress, most of my clothes are either black or white, or, on occasion white and black, I find it cuts down on my dressing faux pas. My partner helps out (he's usually pretty tactful about it ... "do you think maybe you should wear this with that instead?", my idea of accessorizing it to carry (a plain white) plastic shopping bag, I find it goes with just about anything, and in North America I blend in better. WHAT EVER WILL I WEAR to this thing??!!, WHEN is it again?? (I have trouble with memory/dates you know), and WHAT on earth could I possibly bring??!! - I'm on a special diet, dammit everybody's on a  special diet fer pete's sake! Booze is out, I can't bring that .... chips, ice cream, candy ... can't think of one danged appropriate thing!, and I CAN"T COOK!! (just ask my partner). OMG, I'm getting all tense! Maybe we could just all meet at McDonald's, Tim Horton's, DQ, Hooters??  Or, maybe if you make sure Tig, Jimmy and Linux bring stuff, we would all end up getting something that we could all eat? Oh, this is getting complicated. You and your big partying ideas! - THAT's IT!, I'm putting you in charge! You organize it (please, OK?)  Just let me know where and when it is - did I mention I have memory problem,?? (aside from being my dresser and chauffeur, my partner also doubles as a handy self-winding human watch/auto calendar/calculator) - please remind me repeatedly what day and time to show up, and he will get me there on time.  WHEN IS IT AGAIN? Did I mention I have trouble with dates?

Pablo, Oh my, you've done it now, you pushed the logophile button! "Onomatopoeic"??!! I won't even be able to talk to you now without cracking the dictionary. I looove words, even tho I won't hardly remember any of them the next day!! BTW - did I mention my memory is bad? Don't push the worry button, I was like this BEFORE treatment! While I had the dictionary open, I thought I should try to look real smart and reply with "don't you mean echomimetico"? As roiling is also kinda what it feels and sounds like! A "brook" for instance - meandering, trickling, streaming, coursing, rushing, raging, babbling, bubbling, gurgling, burgling, roiling, boiling, broiling. My all time favourite form of words is plageriarism - near and dear to me, no effort nor memory required. BTW, I'm still researching and looking for more info on GS9857, will share anything I glean.

Thanks everyone for having my back. Means so much to me. 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)



Senior Member

Status: Offline
Posts: 363
Date:
Permalink  
 

Hi Canuck

I'm so happy for you.  You deserve it.  Everyone deserves it, of course, but you know what I mean.

I also enjoy your writing style very much.  "Roiling" is not a word I've encountered before but I know exactly what it means...it's so onomatopoeic. 

Pablo



__________________

44 y.o. male, HCV G4 since 1996, F-scan score 9, F2, Failed prior I/R, finished sof/vel/vox 8 weeks 5/16, pre-treatment VL 2 million, EOT UND, EOT+4 UND, EOT+12 UND.



Guru

Status: Offline
Posts: 1515
Date:
Permalink  
 

Yay Canuck!

Excellent News with the Undetected and extremely great numbers!

You did your homework, got into a great trial, got the lucky 3x short straw and WOW ... you're done, and fit as a fiddle, just waiting on final confirmation of SVR ... I agree, it all happened so fast ... says a lot for this combination ... How Sweet It Is!

Very Glad for ya!

 

Enjoy,

Dave



__________________

63yy,HCV,2b,F3-A1, Sof/Riba,12wks Tx   SOT: 1/20/16, HCV-RNA 9,816,581, ALT 56, Hb 14.6

4wk: HCV-RNA <15 Detected, ALT 15, AST 17, Hb 13.6 EOT: 4/12/16, ALT 18 , Hb 12.9176a2f85d05d9c965eafe199f2ba9ba5.jpg SVR Achieved 7/8/16

 



Senior Member

Status: Offline
Posts: 122
Date:
Permalink  
 

Canuck, Great News..... You did it....!   Enjoy!   CC



__________________

F 63,  1b  1974, no cirrhosis, fibro scan 5.8 F0-F1,fibro test .37 ,V/L 702987, ALT 90, AST 75.  ABBVIE Topaz II on 10-30-14 Viekira Pak no RIBA , EOT 1-22-15 SVR, ALT 37, AST 29, 4-15-15 SVR12 - fibro test .22,  1-21-16 SVR 52 ,  1-21-17 SVR 104! 1-21-18 SVR 3 years.



Guru

Status: Offline
Posts: 1031
Date:
Permalink  
 

STELLAR! Blizzards for everyone. Oh yeah, count me in that party!



__________________

Wendy 53 y/o, DX 1994, geno 1A F1

1999 TX 1 - Inter -non responder 2001 TX 2 - Peg + Riba - viral load tripled and taken off

T3:  Harvoni 12 weeks Sept. 19, 2015 ALT 41 AST 30 VL 541800 UND at EOT and SVR 24 ALT 18 AST 26 platelets 223

 



Guru

Status: Offline
Posts: 552
Date:
Permalink  
 

Wow Canuck - those bloods look fantastic. So glad for you. You did so much ground work to ensure that you were completely au fait with the disease, the genome, the latest treatments and then whatever you had to do to get onto that research study. And it's all paid off!!!

Of course we'll wait for 12 weeks before we bring out the hot pink stilettos, the cubic zirconia tiaras, the pink anew black tulle frocks and the pink no friggen alcohol champagne. It's going to be one classy party. I'm sure Firechick, Cinnamon Girl and Wendyo will come in matching outfits.

Any and all ideas for the Canuck SVR Party welcome.

Syd

 

ps. pablito - no excuse not to be there "fresh as a daisy" man. biggrin



__________________

Contracted Hep C 1969. Genome Type 2, treatment naive. Began 12 week RIBA/sof/Dac on 12/11/15. Cirrhosis. VL before treatment 4m. Treatment extended another 12 weeks without Riba. No virus detected at 9 weeks.



Moderator

Status: Offline
Posts: 1506
Date:
Permalink  
 

Congratulations Canuck ! Those ALT/AST's are awesome. It looks like Sof/Vel/GS-9857 is another silver bullet. Onward to SVR...



__________________

57 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52,+115wks = SVR-115

Mike

How To Create Your Signature / Forum Abbreviation Definitions

Support This Forum



Guru

Status: Offline
Posts: 1839
Date:
Permalink  
 

Hiya sis! Congrats. My gosh how time flies! Why it seems like just yesterday.......

http://hepcfriends.activeboard.com/t61707886/waiting-waiting-waiting/

An now just look at ya! wink

 



__________________

Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."



Veteran Member

Status: Offline
Posts: 80
Date:
Permalink  
 

Canuck-That's the ticket!   A pioneer blazing the trail to victory.



__________________

Age 66. 1988? Dx 1996. G1a.  Biopsies 1996/1998.  Mild inflam. Tx naive.12/2015-Fibro F3/10.5 kPa. VL 1.1m Harvoni 8 wks. 5/9 VL was 69.  EOT 6-13-16. ALT/AST 13/16. Platelets 325. UND.  9/4/16 EOT+12 UND & 1-10-17 EOT+30 UND!

Tig


Admin

Status: Offline
Posts: 8986
Date:
Permalink  
 

CONGRATULATIONS!!!


What more can be said except:

image.png



__________________

Tig

63 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 5+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

Signature Line Set Up/Abbreviations   Payment Assistance

 



Guru

Status: Offline
Posts: 3249
Date:
Permalink  
 

Hi ya'll,

So my May 5 EOT lab work straggled in by Thurs. May 12, the VL came yesterday (Friday the 13th).

Due to my superstition requirement/impediment checklist, I could not post this until today. Needed to shop for a bottle of champagne, some salt, rabbits feet, silver bullets, and kept an eye open for a good buy on a turkey too. (And no, I do not drink, my one annual drink per year just happened to come a little earlier, I will skip the one I usually have at New Year - on second thought maybe I'll take that wine back today and trade it in on a "sweet" dessert type liquor, as that suits me when I do not have to actually "taste" or smell the alcohol much, champagne just "sounded" more applicable and celebratory - jeesh imagine that, me drinking for all the wrong reasons!) 

I am screamingly happy with my anti-climactic solid gold lab results biggrin , (even tho, ye-awn, we all knew what the load was gonna be!) yawn. Velparized! smile Magic! nod.gif

Update(s) as follows:

 

Signature Line update : March 10, 2016 - accepted for and started DAY ONE of 8 week SOF/VEL/GS-9857 trial.

March 10 labs taken just before starting treatment - VL 844,000, ALT 86, AST 64,  (my VL in last 6 months, before treatment, decreased from being over 10 millions to under 1 million!)

Other pre-treatment labs: IL28B - CC. Ferritin 541 (ref. 15-300), Iron 37 (ref.9-32), Iron Sat. Index .71 (ref.15-.45).  PT 13.6 (ref. 9.7-12.3 sec), INR 1.3 (ref.0.8-1.2). C&G Crt&clr 58.6 (ref.75-115.0). Glucose 107 (70-100). Urine ph 5.0.  

March 18 labs - WEEK ONE - VL 247, ALT 29, AST 23, C&G Crt&clr 60, Glucose 94, Urine ph 6.

March 29 labs - WEEK TWO - VL <15 detected, ALT 20, AST 23, C&G Crt&clr 58.7, Glucose 115, Urine ph 6.3

April 7 labs - WEEK 4 - VL UND, ALT 21, AST 23, C&G Crt&clr 63.2, Glucose 104

May 5 labs - WEEK 8 - EOT - VL UND, ALT 20, AST 24, C&G Crt&clr 64.2, Glucose 86

 

(Just in case anyone is curious to see all my ALT's and their fluctuations, from my initial diagnosis of HCV July 2015, through treatment start of March 10. 2016, to EOT May 5):  86, 89, 75, 78, 87, 83. 65, 86, 29, 20, 21, 20



__________________

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)



Guru

Status: Offline
Posts: 3249
Date:
Permalink  
 

Hi Pablo,

Glad you had a "fresh-as-a-daisy" morning. 

Agree, about docs having their preference (mind-set) for "slotting" what "might" be a side. AND, what to "call it" (you said cutting the medical mustard lol). But, I am so glad you did lose your "subtle-chronically-persistent-icky-strongly-associated-with-having-HCV-an-almost-slightly-toxic-like-body-hangover-feeling-thingy", jeesh, why wouldn't they get that! I understood you perfectly! So much quicker to call it fog?

They had a fair bit of difficulty around my adamant use of the descriptor "epigastric roiling", but that was the BEST description for it. They have no choice (for some reason) but to "record" it as "nausea". Square peg, round hole. Boxes that require "ticking". Duuh, ever had nausea?? - I KNOW what nausea is! - I LOATHE nausea. IT was NOT nausea. It was epigastric "roiling", which I tolerated quite well - it was a curiousity tho. Simply an interesting associated phenomenom that I could not separate from ingesting the drugs. (In the Gilead hand-out, "nausea" was listed more-so on the triple gs9857 arm, than in the double arm).

About hot flashes/night sweats, etc., I did not mean it was definitely directly connected to gs9857, at all. In my case it could well have just been hormonal, ya know, like Tig's testosterone version of "manopause", or just some of the  "general" warfare going on. I had a history of night sweats long before treatment, that came and went, waxed and waned, I just also happened to experience some of them while on the meds - so, don't know why.

I agree with Jimmy. To each to their own. Everyone could feel/react quite dif than another person even if they are fighting the same disorder, have similar parameters, and are on identical drug regimes. The warfare going on, and sides could vary for each person. All is fair in love and war?

I still can't find much data to read about this mysterious new (NS3/4A protease inhibitor) gs9857. I wish they publish something more soon! 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)



Senior Member

Status: Offline
Posts: 363
Date:
Permalink  
 

Actually Canuck that "hangover" feeling is exactly like I felt for most days since I contracted HCV.  The trial doc called it "brain fog" but it wasn't really that; I, fortunately, never had problems with thinking. concentration or memory...it was more like my body felt slightly toxic.

I never mentioned the feeling to my previous hospital as it was so vague I couldn't be sure it was HCV related, but I always suspected it was.  I know doctors like to be able to correlate specific symptoms to underlying pathology so statements like "feeling icky" or "toxic" doesn't cut the medical mustard.

I'm glad to report that that feeling started to dissipate within hours of my first dose of sof/vel/GS-9857 and was gone in 3 days, and ever since.  That's been the very best bit of being on the trial for me...to think I felt like that for 20 years.



__________________

44 y.o. male, HCV G4 since 1996, F-scan score 9, F2, Failed prior I/R, finished sof/vel/vox 8 weeks 5/16, pre-treatment VL 2 million, EOT UND, EOT+4 UND, EOT+12 UND.



Guru

Status: Offline
Posts: 1839
Date:
Permalink  
 

There is no actual proof of what exactly happens when a Dragon is dying. But the fact is, yours is.

 

wink



__________________

Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."

«First  <  1 2 3 4 5 6 7 8  >  Last»  | Page of 8  sorted by
 
Quick Reply

Please log in to post quick replies.

Legal Disclaimer:

THIS FORUM, IT'S OWNERS, ADMINISTRATORS, MODERATORS AND MEMBERS DO NOT AT ANY TIME GIVE MEDICAL ADVICE AND IN ALL CASES REFER ANYONE HERE TO SEEK APPROPRIATE MEDICAL ADVICE FROM THEIR DOCTOR.