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Post Info TOPIC: "I'M IN!! - The 8 week SOF/VEL/GS-9857 Trial"


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RE: "I'M IN!! - Started the 8 week SOF/VEL/GS-9857 Trial"
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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

 



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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.



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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. 63 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)



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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

 



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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.



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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. 63 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)



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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.



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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. 63 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)



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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.



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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. 63 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)



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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.



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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. 63 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)



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"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.



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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.



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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.



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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. 63 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)



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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.



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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. 



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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


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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



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Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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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.



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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. 63 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)



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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

 

 

 

 

 

 



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 M-61 (3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017) On my way to SVR.    SVR-12. 3-13-18



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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. 63 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)



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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.



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"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



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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.



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



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Jill 

(68 yo, lives in UK)

Was Gen 3a, 

24wks Peg/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 



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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



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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 *



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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. 63 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)



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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.



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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



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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

 



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



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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.



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



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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

 



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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



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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.



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



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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

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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

 



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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.

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



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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


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CONGRATULATIONS!!!


What more can be said except:

image.png



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62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

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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



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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 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)



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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. 63 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)



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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.



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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.



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

 

wink



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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."



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RE: sides
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Thanks all for support. So I woke up today fresh as a daisy and feeling better Than I have at any point since I've been on the trial. I'm probably telling myself a story here, but the way I'm conceptualising it is that the meds were doing there final battle to slay the dragon now that my VL is low; and - having won - my body has woken fresh as a daisy today.... ....back in the real world, I think you guys were right and I had some kind of gastro flu for two days. On the point of hot and cold flushes I am certain that they are related to the meds as this side (albeit mild) started immediately after starting the trial. I mentioned it the trial doc who was a bit surprised and said that this wasn't a typical DAA side, so it is interesting to hear from Canuck that this is a unique side to GS-9857. Pablo

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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.



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RE: "I'M IN!! - Started the 8 week SOF/VEL/GS-9857 Trial"
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Hi Pablo,

Do you still have your Polaris/Gilead trial description hand-out?? Did you read the sides described in there?

While it was still being determined, which arm I was going ultimately end up being placed in, (the 8 week triple sof/vel/gs9857 arm, OR, the 12 week double sof/vel arm), there was a description of sides (one "might" experience), depending on WHICH arm you got. 

The sides were listed for BOTH arms (with and without the gs9857). If you re-read this section of the hand-out, you will see the "possible" sides for the triple was ever so slightly dif, than the sides for the double. Perhaps more G.I. or cold-like symptoms were reported by the gs9857 folks in feedback to Gilead?

I would think "known" sides for these drugs (vel and gs9857) are still being gathered. They could well be non-existent for some people. Known sides for sof should be well documented by now due to it's heavy use/reliance in all regimes now. Sides for vel (perhaps) a little less well documented, and sides for gs9857 perhaps even less so documented (just based on how many subjects have been ingesting vel and gs9857 thus far).

When you read through tkflex36's sof/vel (12 week double) sides - his, he said, were NIL. Webtomass's sof/vel/gs9857 (12 week triple) said "pretty much" the same thing.

For me, my sides, on the 8 week triple, were all in all, very manageable, and were, at times hard for me to really separate from some of my prior long-standing (pre-existing) symptoms. NO nausea (I did wonder on the very first day, if there WAS some nausea happening, as I commenced to have some burgling, gurgling, epigastric "roiling" going on soon after I got my first pill down my gullet, and faintly wondered about whether i was or was not nauseated on day one or two - but ended up deciding NO, that is NOT nausea - I did not feel "sick to my stomach" AT ALL, rather, it was just this weird epigastric burgling, gurgling "roiling" going on for a couple or few hours or so after I took each pill, maybe a small amount of erucitation along with it - but that was all, gastrically, it really didn't bother me (this roiling), I just noted it, every day, after every pill, like clockwork, as as a weird but not bothersome "thing". I took each pill at lunch, and there was always a cessation of this "epigastric roiling" within hours and mostly well before I got around to supper. It was really just a minor oddity, that's all. The gastric roiling persisted up until the last week, but oddly, it did decrease quite a bit, even before I finished the last week. I do think the non-bothersome epigastric "roiling" and erucitation was directly a mild side effect of the treatment/drug(s), I suspect the gs9857?, but I felt like I was "getting used to the drugs" in that last week or so, therefore less roiling? Roiling and erucitation was almost non-existent toward that last week.

I did experience some headaches, especially the first 2/3 weeks, then the headaches also decreased in intensity and frequency. Later half of treatment, they were "ever-decreasing" only a few, small and smaller, infrequent headaches, decreasing proportionately as I neared EOT. Again, I kinda like I was "getting used to the drugs". These were not "severe" headaches AT ALL, they were daily at first, some fairly strong/"moderate" at first, but i never took an analgesic once (I seldom ever have in my life), seriously thought about taking an analgesic once or twice the first week or so, but decided against it, it wasn't that bad, I didn't want to feed my liver any analgesic anyway, nor did i want to mask symptoms that  I was trying to discern as being caused by the drugs. I called my pills my "headache pills" for a while - but, the headaches started to decrease and were quite well tolerated, they got small or tiny and infrequent in the later half of treatment. I do think the headaches were a side effect of treatment/drugs tho.

Headaches (AND, the drugs themselves - I "think") made all my other (pre-exsiting) brain fog, concentration, memory, diplopia and tinnitus more noticeable.

I having been waiting this week (after my EOT) to try to discern how I am NOW feeling, off the drugs - it is still hard to say,! the jury is still out!!, but I will keep you posted when I get it better sorted. While on treatment, the drugs did seem to add an "extra layer" to my normal amount of pre-existing level of fog. This week (after ETO) I am starting to notice that this "extra layer" of fog has been slowly starting to lift. It was like the drug treatment did increase or contribute to how much fog I was having to deal with, it was thicker on the drugs. Additionally, during treatment, I woke feeling like I had an "extra kind" of hangover - like a "drug hangover" - I blamed the drugs. The A.M. hangover got a little less noticeable tho, even before EOT. Post-treatment, I DO think the fog (the "extra" portion for sure) has dissipated greatly, and maybe even some of my "normal" amount of fog is decreasing!! And the "extra" A.M. drug hangover is definitely gone now!!

I DO think I noticed slow and subtle improvements in fatigue, even before EOT. I was starting to experience less of those overwhelmingly irresistible crashing daytime naps that used to overcome me, sometimes on a daily basis! I was "crashing" less and less the last couple weeks on treatment, and even less now! I know I am feeling "some" less fatigue, but mental clarity and fatigue levels are taking me a while to truly sense and measure well yet. Like I say, I'll update you as i go along.

I hope your symptoms are short lived, dissipate and are not sides. I did have some night sweats on occasions during treatment, but I did before treatment as well. Perhaps just like Tig's "man"opause. Of course, me being emotionally liable, moods, irritability factors, frustration with concentration etc., abilties/disabilites were noted during treatment, but I did so before treatment too.

I AM pleased thus far!! biggrin C.

 

 

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 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)



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Hi Pablito,

i agree with RC.

if you have a temperature, it sounds like an infection - gastric flu, cold or whatever - if you still have it tomorrow maybe you should go to the doc - you might need antibiotics.

it certainly doesn't sound like any reaction to your Hep C meds I have come across on this forum. 

maybe a good excuse for a day in bed with a bottle of water on your bedside table.

Take care,

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.



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Hi Pablito,   I'm hopeing you have the two day flu. If you were on RIBA this would be about the time you would start feeling side-effects-  hang in there your doing great! RC



__________________

 M-61 (3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017) On my way to SVR.    SVR-12. 3-13-18



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Hi all

So I had my first lot of side-effects the last 2 days on the sof/vel/GS-9857 trial: nausea, gastro upset, tiredness, hot flushes and some emotionally lability*.  Worse in the morning (I take the meds in the evening).

I suppose I can't complain as I am week 5 and the first 4 I had none.  And my worst day on the DAAs is still better than my best day on interferon/ribavirin by a long shot.  Nonetheless it does make getting up for work tricky.

*The mood swings/irritability could well be to the stress of worrying about the trial working out for me.

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.



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Aaww syd,

Jeez, now compliments! - my good-ness!!, my head is just a-swimming!! - and is getting bigger and bigger by the moment. Thnaks - keep it up!! - you are my very best morale builder!! I heard a ding dong from my computer, and it was you!, always glad to get a ding dong from you - why is it that we often we seem to cross paths at 3AM my time! Ships in the night? Man, when my partner wakes up in the AM, I gotta show him this one, right away! He won't believe I've got you fooled SO goodl!! HE SEES me counting on my fingers! He will get a special chuckle when he reads the clarity part!! Oh well, feels real good.

No, my friend is very ill, and sadly, will not recover, only 66!

Me too!, fer sure ditto what you said, about being on this journey at the same time as you - perfect storm I'd say! Aren't we all lucky to have each other like this.

Now, I am going to go off to bed, if I can manage to lift my overly-inflated ego and my real puffed up head off this sofa. Thansk syd. C



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 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)



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Dear Canuck, 

your depth of knowledge plus your ability to clearly explain anything medical has been appreciated by a great many of us. Added to that, your compassion coupled with a keen sense of the absurd, makes your posts always interesting, funny, moving or any combination of the three. I feel so lucky you have been on this journey at the same time as me, and whatever you have gained from being here, is small compared to the contributions you have made to so many of us. You go out if your way to write long posts to newbies, clatifying their situation and easing their anxiety.

i hope your friend's health is improving and look forward to hearing what your latest results are.

Thank you for being such a vital part of the support network for me on my journey.

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.



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Hey everybody,

I neglected to thank everyone, for their very kind, and always enjoyable, bouying, funny, weird, ever-so-cute, creative and supportive posts about me eating my last pill and my EOT. Don't know what I'd do without all you guys! What a wonderful motley crew we are! It truly is, very much, a great privilege for me to be able to share my life moments, fears, happiness and celebrations with you all, and I am truly humbled and honoured to be able to share in yours. 

Since my trip down to my ETO appointment on May 5, chaos and busy-ness has fallen upon me. Too much happening around here. I have a friend who is very ill, and time just goes and goes and goes.

I will post more soon, about my appointment, and perhaps both (the balance) of my 4 weeks labs that I only received May 5, and as well, the newest EOT 8 week VL and labs done May 5 as well - hope I can receive the 8 week EOT VL this week! (Anti-climax tho - we ALL know what it is going to be!) Still exciting tho - I can't wait to see those dang zeros again!

Thanks to each one of you, you are good friends. biggrin  C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 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)



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Pablo,

AH! I missed that - your 2 WEEK VL was 1000! Whal!, all the better yet! So I'll revise ... SUPER STELLAR! (I read too fast, and wrote too fast, but did later wonder to myself ... why there was no 2 week load mentioned!! I slowed down tonight, re-read and saw, that I had just I skimmed right by understanding that it was JUST your 4 week appointment, AT WHICH you received your 2 week load. Makes perfect sense now! Get ready for further feelings of relief with your 4 week result! (I pm'd you back BTW on your other ques.). biggrin  C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 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)

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