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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!! - The 8 week SOF/VEL/GS-9857 Trial"
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Had my Hep A and B "immunization" recently re-tested, the results are interesting (to me anyway). Thought I would share.

Here's the hx:

Had an active "acute" case of Hep B in the 70's - it was later determined that I had successfully "spontaneously resolved" that Hep B infection, it just ran it's course. Was quite ill with it for a while, but I recovered from it all on my own. It was subsequently determined, not too long after, that I had NOT become a "chronic" carrier of Hep B, that I had cleared/resolved the Hep B spontaneoulsy/naturally, and so no treatment for chronic B was required. I would have earned some "natural" immunity from Hep B (the hard way) by having experienced and resolved this case of Hep B.

I had never received any regular immunization as a child (only a couple shots kinda by accident, not any compete immunization at all, no complete series of anything). I had a lot a catching up to do (to gain some minimum immunization, polio, etc.) later, as a young adult, but NEVER was I ever immunized for Hep A or B at any point either - not until I was finally diagnosed with having Hep C in 2015.

When I was finally diagnosed with Hep C in 2015 (everyone finally realizing I had also contracted Hep C way back in the 70's along with the Hep B), that is when they tested me to see what my immunity levels against Hep A and B were. (Assessing A and B status/immunity should be done prior to initiating Hep C therapy).

Aug 2015 - my immunity to Hep A and B was assessed/tested. Results showed I was NOT immune to Hep A. My Hep B immunity titre was tested and re-tested, and did reveal evidence of a likely-resolved case of Hep B in the past (positive for Hep B "core antibodies"), and, no evidence of active or chronic Hep B (which is relied on by looking for a positive Hep B "surface antigens") - my Hep B surface antigen was negative.  To have a "sufficient" amount of immunity to B your Hep B immunity titre (your Hep B "surface antibodies") should ideally be at 10 or over. My Hep B testing showed my surface antibody titre was insufficient (or technically, NOT immune to Hep B) as my Hep B titre was only 6.06 and 7.80 in Aug, and at 6.82 in Sep 2015.

I began the standard series of Hep A and B immunizations (as well as pneumococcal and flu) on the advice of my hep docs. They elected to "double-strength the B doses" for the later two shots of the 3 Hep B shots in the series, over the 6 month period it takes to complete all the Hep A/B innoculations.

Oct 2015 - First shots of the series of Hep A and B (regular strength B).

Nov 2015 - Second Hep B shot of the series (double-strength B).

Jan 2016 - Hep A and B immunity titres were re-checked . Still NOT immune to Hep A (Hep A titres can sometimes take a bit to rise), but technically I had become immune to Hep B (B titre surface antibodies had increased to 15.67) - good, over the "technical 10" desired - but B titres can be in the hundreds or even in the thousands.

March 2016 -  Commenced my 8 week Hep C therapy.

April 2016 - My final shots of the Hep A/B immunization series were completed (again double-strength B).  

Early May 2016 - My Hep C therapy was completed.  (Und J)

Late May 2016 - They re-tested my Hep A/B immunity titres. It showed I was finally now immune to Hep A, and was remaining still technically immune to Hep B (B surface antibody titres remaining over 10, at 17.71).

It was recommended to have my Hep A/B immunity titres re-checked again, about one year later - I just had this done,  a bit late in Aug.

August 2017 - Immune to Hep A. But (technically) NOT immune to Hep B again - (B surface antibody titre reverted back to being less than 10 again, now at at 7.10).

 

Teflon! I'll write a piece about this "less than 10" B titre stuff elsewhere on the site. 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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Dearest bros,

JK, most of us around here don't DO last names, nor first names (for many), but if you insist, instead of just being a non-descript/curt "C" which bugs Tig no end, he has kindly dubbed me Chuck, which I fondly concede to, but under the circumstances I think I choose the nomenclature of Chucky Cheese, sounds smooth and creamy (I've never been to one of those restaurants) but the name has always sounded so soft and delicious, just like the "texture" I would aspire my liver and other organs to be). No "chunky" ice cream needed for this gal. hee hee

My partners latest adopted nick-name is Captain Crunch, as he has recently had many "hard" crashing run-ins with PET scans and CAT machines for concretious bits.

Here in dinosaur land, it is Capin' Crunch and Snap-Crackle-Pop. 

Thanks Tig, to you (and your boss) for the definition of "course", that helps. (My opinion is actually very similar to your surmizing - we concur!, thanks for the good consult tho, I do respect your objective opinions and sonographic experience), all free too! Fossilized remnents. Small mementos to live on, firmly, despite resolving to be a stellar F0-1. Just memories now, of the good times had by all. C. smilewink

remember-the-good-old-days-when-snap-cra 

32_wannaplay2.jpg

 

 

 

 



__________________

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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Chuck?

Chuck who?

Wait, don't say it.no



__________________

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."

Tig


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Hey Chuck,

Overall, your report is quite acceptable. My impression is continuing resolution of previous levels of disease. The coarse echo-texture* isn't anything to be worried about either, nor are all the crunchy bits. We see granular deposits all the time, especially in the kidneys. The pancreas is a difficult structure to ultrasound. It likes to hide! As for the blobby thing moving around in that vessel, it could be a number of things. I assume it was color flow doppler of the Aorta. It sounds like your Sonographer did a good, detailed scan and if there was a concern about that, you would have been advised to persue further diagnosis. My "business partner" says don't worry about it! As we get closer to fossil stage in life, things start to calcify. As long as our bits and pieces continue to perform acceptably, all is well.

I would never call you names, like a stone cold b**ch or make fun of your crunchy boob(s). Nope, I wouldn't do that. I will provide pictures though. That way, I don't have to say a thing! wink

 

*Irregular nodules replace smooth liver tissue and the liver becomes much harder than normal.  This is described as having coarse echotexture.

 



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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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Here's the written report from my latest abdominal U/S done earlier this July, (it was supposed to be my aprox. one year SVR U/S, but the timing is all off, waitlists and such), they compared this U/S to my prior CAT scan done earlier this year in Feb, where similar things were seen, except that the portacaval lymph gland (in the prior CAT) was not visualized this time, and where the prior CAT previously noted a small left liver lobe granuloma, now, in this U/S they refer to it as calcified? I love their use of words, like normal size and contour, NAD, and them not using the words cirrhosis or steatosis - but what the hell is "course" texture?

I'm getting tired of all this crisper-critter and calcification stuff. I had to have a crunchy tit biopsied recently, it was not terribly fun, I've never had a crunchy jaw joint before either, but I own one now! I'm turning into stone it appears! I studied all the images I got on this U/S on a requested CD record, (I always ask for copies of all and any of the imagings I have had done) it's probably a very good thing they note I have lots of room in my aorta (patent and not stenosed), as I see crispy-critter things not only in my vessel walls and/or adhering to the interior of my vessel walls, but a blobby one that seems to be appearing to be hanging/projecting out there in space within the vessel! Good grief! That can't be good. To me (but what do I know!), it looks like my pancreas may have more of these minute calcifications in there (in number) but good it appears the largest calcification in there is not any bigger? Sheesh, what is it with all these calcifications going on all over the place!

Be forewarned, I don't want to hear any stone-cold-b**ch analogies, nor witches-tit jokes, nor any of those "she looked back and got turned into a pillar of stone" warnings, no roto-rooter remedies, and I have already used up comments such as tough-titty/life is hard! He, who casts the first stone ...

HEP C WITH MODERAE ADVANCED FIBROSIS R/O HCC

COMPARISON:
CT abdomen from February 15, 2017.

FINDINGS:
There is calcified plaque in the normal caliber abdominal aorta.

Liver demonstrates normal size and contour. There is mild coarsening of the
liver echotexture. There is a 4 millimeter calcification in the left lobe,
likely related to prior granulomatous disease. No other focal liver
abnormality.

Within the pancreas, scattered calcifications are present throughout the
parenchyma measuring up to 5 millimeters in the pancreatic tail.

Gallbladder and biliary tree are unremarkable. Spleen is not enlarged.

No abnormality of the right kidney. There is cortical scarring to the left
kidney.

There is no intra-abdominal adenopathy or free fluid.

IMPRESSION:

1. Mildly coarsened echotexture of the liver, likely on the basis of patient's
known liver disease. No focal liver mass demonstrated.
2. Scattered calcifications in the pancreas, likely on the basis of chronic
pancreatitis.
3. Cortical scarring in the left kidney.

Sonographer Notes:

AO - Echogenic plaque noted.

Panc - Known calcs seen scattered throughout parenchyma, largest 5mm in tail.

Liver - ?Mildly course echotexture with 4mm ?calc Sup LT Lobe. (Their question marks!)

GB/CBD - NAD

RT Kid - NAD

LT Kid - Known cortical scars.

SPL - NAD

No portacaval lymph nodes seen today.

 

Liver length: 14.57 cm

GB Wall Diam: 0.16 cm

CBD Diam: 0.25 cm

Ao Dist Diam: 1.71 cm

Rt Kidney Lgth: 11.00 cm

Spleen L: 7.25 cm

Lt Kidney Lgth: 8.93 cm

 

 

 



__________________

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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OK, here are missing labs, that I just chased up, that were supposed to be included my other post below! (Obs, you will note I AM one of those people who apparently has had a miraculously reversal of their cirrhosis/fibrosis/liver firmness/steatosis)!

By fibroscan I was F3 (12 kPa), then F4 (12.6 kPa) prior to treatment, after treatment I went down to F3 (11.8 kPa) and then I plummeted down to F0-1 (4.7 kPa)!! The 4.7 one, done January of this year, that was only 6 months post-treatment!

Now, being 12 months post-treatment, unfortunately, they did not repeat the fibroscan at my recent doc visit, but, I do have these Fibro-Test blood tests which are also backing up the astounding bounce-back in my liver!

My Fibro-Test blood test (6 months ago) had already dropped me down to a F1-2/moderate fibrosis level, now, the current Fibro-Test (I just had done), has me at F1/no or minimal fibrosisbiggrin

Even my ELF test from 6 months ago, in which the hyaluronic acid was high, now shows a normal range for hyalur-acid! My ELF score is now only 8.85!

ALL of my previously altered bloods have improved since treatment!, and are just about perfect, save for some minor blips. 

I am very happy to see my AFP just keeps going down and down! It was just a tad over limit pre-treatment and then it just kept steadily plummeting after treatment. In the last 6 months my AFP has gone down again!, from 4.7 to 2.7!! 

My hemoglobin A1C is normal at 5.5 (even if my fasting glucoses are sometimes a tweek over), and my chols. are still a little funny, but not too bad, HDL remains a little on the high side, and for the first time my LDL is a little on the too low side.

I'm telling ya - these DAA's are miracle drugsbiggrin 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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YAY Canuck 

Goodness, those numbers are fanTAStic!!!!

Im so delighted for you my friend.  

Silly them depriving your thirsty mind of yours of the super secret test results. no

But they don't know we have the brilliant Tig to find you a study on LOX. evileye

Sorry you didnt get the fibfoscan done...

Im anxious to start seeing some of us dragon slayers reverse the cirrhosis. (Pretty sure Malcolm reversed a bit but can't remember for sure)

 Anyhoo, sweetie...YAY

 

 



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60y/o, Infected via transfusion Oct'83, GT-1a, F-4 cirrhotic,
tx Holkira pak/moderiba 12 weeks

2.5years...post tx... successful dragon slayer 



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Aw, tanks Jags, you are always full of such positivity (and compliments too!), keep it up! biggrin Respect?, ditto back to you, in spades! 

Ya, I AM a very lucky lady. Don't we just love Gilead (and this place)!

Tig, I am salivating all over that link - mmm, goodun! Much tastier than DQ. Yes, I have been reading much on LOX, many, many annoyingly tiny bits and pieces here and there and spread all over the place - this is very excellent reading, and all all in one spot too! Thanks muchly for it, you know how I love trying to suss these thing. Hey! Whadiya mean ... as interesting as antibodies/fibrosis can be LOL! I'll have you know, this is ideal riveting bedtime reading for some. Thanks for the gift bud.

Yep, you're right, my ALT and AST are tickling me!

I consider "this place"(virtual and physical) and all my sis's and bro's and teachers here, a great gift. 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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Wow Canuck that is amazing stuff....it's people like you who helped people like me access the drug I needed ....I'm so happy for you!!! All the time you give us your time and support / expertise...behind the scene you still gave your own battles...total respect lady xx great news xxx



__________________

HBV 1982 Resolved  / HCV Undiagnosed until Sept 2016

female U.K. AGE 53 Fibro score 6.9 

Viral load 3.5 million October 2016 

Geno 3

Treatment Epclusa

Undetected at 2, 4, 8 and 12 EOT , SVR 12 / 24

October 2016 Alt levels 190 now, July 2017 17

 

Tig


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HOORAY!!! 

Congratulations! How wonderful the day is when you can add those initials to your Bio, SVR-52 (1Year). This is one thing I'm absolutely sure of and I can assure you, it doesn't matter how many years pass, getting each and every confirmation will tickle you pink!

Sorry you didn't get your fibroscan done. I'm confident they will let you know going forward, if any of your tests indicate that need. You will continue to have your biannual US won't you? Maybe you can plead with your own doctor to throw one in.

Those lab results are absolutely stellar. I'm impressed by them all, even the glucose isn't that bad. I told you that eating that bag of caramels the night before was a bad idea! Until you reach 7.0, you remain pre diabetic. If you avoid too many sweets and carbs, you will still be okay having the occasional chocolate infused, gummy bear Blizzard. Just keep it infrequent and don't induce a DQ stock rise on the Dow!

I found the information on the LOXL-2 testing interesting. As interesting as antibodies and hepatic fibrosis can get, lol! Seems they're really learning a lot about fibrosis activity following treatment with these studies. Good to know they're following you so closely, even though keeping your access to results limited. I'm confident you'll hear something if there are any questionable results. I

Knowing you, you have already read this article, but I'll put it here just in case you or the others missed it. Technical, but good! LOXL-2 PDF

 

Great numbers! Looky at those LFT's, wowser!! smile



__________________

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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"I'M IN!! - The 8 week SOF/VEL/GS-9857 Trial"
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So, I haven't posted a report/update since March 2017.

I have been seeing the hep doc (since my EOT on May 5, 2016) on the standard Gilead "trial" follow-up program, at EOT+12 (Jul 2016), and at EOT+24 (Oct 2016), then Gilead offered a special "follow-up study" for us cirrhotic trial particpants, to return for further testing every 6 months for 5 years.

My first 6 month "study visit" happened in January of 2017, and the CAT for that visit happened in February, 2017, of which we were discussing in posts below.

My second 6 month "study visit" was on June 5, 2017 (the timing is a bit late for my May 5 anniversary), but the bloods and PCR I had on June 5, are technically (officially) my May 5 1 year SVR!! biggrin

Some things never change! ... it was like pulling teeth, again, to get my lab results returned to me from the Jun 5 blood draws, just received them Jun 19 (like 14 days and 7 1/2 hours! later ... but who's countin' eh?) Like we all knew I was UND alright, but don't they know, I have some very important people to inform!

So, I really must try to tidy up/revise my sig line (one of these days), and bring up to date my bio info (as well), where all my labs live, but for now I will just post my Jun 5 labs here.

HCV RNA - UND biggrin

ALT - 14 (ref. 6-34 U/L)

AST - 18 (ref. 9-34 U/L)

Total Bili - 9 (ref. 3-21 umol/L)

Direct Bili - 2 (ref. 2-7 umol/L)

Creatinine - 77 (ref. 31-101 umol/L)

Albumin BCG - 42 (ref.33-49 g/L) 

Platelets - 189 (ref. 130-394 GI/L)

PT - 11.9 (ref. 9.7-12.3 sec.)

INR - 1.1 (ref. 0.8-1.2)

Glucose - High - 5.77 (ref. 3.89-5.55 mmol/L)

Insulin Fasting - 3.06 (ref. 1.90-23.00 uIU/ml)

Homa  IR - 0.79

So, other than seeing these small twitches in my glucose levels in and since trial, it's all to the good.

I hold bragging rights, in yet another drop, in my ALT and AST from 6 months ago! In Jan. my ALT was 18, AST was 22, currently my ALT is 14 and AST is 18! hee hee biggrin

Oh, bugger, just noticed, they forgot to send me some of the lab work results! Grr. Bite tongue! I will get and then convey the rest later! More phoning, i-dotting and t-crossing for me to do I see!

I was a tad disappointed this visit, I was SO very much looking forward to having another 6 month fibroscan done, just to re-confirm my beauty Fscore of last time - they outright refused. So, weird!!, as i had come to firmly believe that they would (I was sure it was supposed to be part and parcel of this whole study I am in), I thought I was to have a fibroscan, every time I went there, every 6 months! I practically begged for one, but they would not! I can't figure that one out - and it is SO easy to do there too! I had an associate doc, as my hep doc was away. So, now I have to wait another whole 6 months before I can get another fibroscan opportunity, dang it all to hell. The nice young doc there DID did send me off for another abdominal ultrasound though, now wait-listed into July for that. I had the CAT just 4 months ago in Feb., but I welcome the U/S as I am curious to look for improvements and changes, hope they don't find any increased crunchy bits in my pancreas (or anywhere else for that matter)!!

Another disappointment at this appointment, was that i finally found out (after asking since day one of this study!) that I will indeed NOT be allowed to see one particular special blood test result Gilead is drawing and getting from me (and all the subjects) - the "LOXL-2" , it has to do with enzymes that promote fibrosis (sorta) - it would have been an immensely interesting subject to try to learn about - but alas, it is Gilead's private data for their research purposes, not revealed to me nor to my hep doc's clinic. Too bad. 

So, I will post more and missing bits as I get them. C.

 



-- Edited by Canuck on Thursday 22nd of June 2017 04:27:50 AM

__________________

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)

Tig


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Oh, great... 

I have to do the same thing, thanks for the reminder.  The odds of a mistake are still high, that truthful news in Tig's Tax Tips, pg 1. Be careful, they know what we're saying! Shhhhhh..... wink

Come back soon! We love your help on the second shift!



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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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It is with reluctance that I announce my affirmation, that I may be disappearing from time to time, I will be knuckling and concentrating on getting my taxes done on time this year, so I will have to stop doing one of my most favourtie things, conversing with ya'll here as much. This will be quite a battle for me as I much prefer to be here, rather than starting with the (step one) gathering of a million bits of paper scattered all through my house for a start! This sad reality for me was brought to my conciousness by firm but still-freindly repeat reminder emails from my accountant (he knows me well). Gone stealth. Over and out. blankstare 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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Wow, Canuck, how amazing is this!!!   Not too shabby at all, I agree!! 

Wonderful news, beyond wonderful in fact... sounds like all that "super-duper healing monster" routine has worked... your liver`s as good as new!! 

Congratulations!!!   biggrin



__________________

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.

 

 

Tig


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That's absolutely stupendous news, XT!! Fab, Fab, Fab

You mentioned a puny nephrotic sac. Is it possible that you have calcification there? We see that all the time and it's right there in the same scan zone. Coulda washed that puppy out! It's just a thought...

Whatever happened to the crunchy pieces, your new leather free liver is a true blessing! I don't know what side of your head you part your hair on, but you once said you'd change it if it would help. You may be onto the answer, but right now, who cares? You've just received some very good news, congrats!

image.jpeg



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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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Oh my dear sister I am so happy for you!

Jimmy



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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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That is just AWESOME news! You're almost bionic!! I didn't think cirrhosis could be reversed, so this gives me even more hope with my own situation...

Thanks for sharing the journey...



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56 yo, GT2B, Contracted 1977, Dx 2000
Bx 2000: Counseled no tx
U/S 1/25/2017: Cirrhosis w/ascites, calcification at bx site
2/7/2017 INR: 1.3, Total Bili: .7, AST: 133, ALT: 162, Alk Phos: 178 VL: ?
SOT 2/10/2017 12 wk Epclusa+Ribavirin 600 mg (now 1000 mg)

8/4/2017: HCV RNA "Not Detected"

 



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Happy Dance time!!! That is some kick a** news my friend. SO happy to read this. I always say normal is a cycle on a washing machine, now I might have to change that to normal = Canuck



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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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Got my Abd. CAT scan CD images back, here's the radiologists report, included on the CD.

Hey, I am quite pleased!!

 This is the third time now (by one test or another) that they are indicating there is NO CIRRHOSIS!!!! It must be true about my last fibroscan showing that HUGE drop in hardness!! (Maybe it is true that fat can contribute much to degress of hardness, thus appearing with higher Fscore readings on fibroscans, thus a concerning indicator of cirrhosis, but not necessarily so)! This CAT does not even mention the calcification/or granuloma the ultrasound person had imaged just prior (or said they imaged - I thought even I could see the liver calcification on the U/S CD too!)  Maybe, between that post-treatment U/S and this CAT (within a couple months of each other) - the calcification/granuloma thing they noted on my liver U/S could have just disappeared, this quickly, to be not seen on the CAT? (Cripes I must be some kinda super-duper healing monster!) Maybe on ultrasound, what "appears" to be a liver calcification/granuloma could actually be "something else" on some other tricky "near" structure?  Who knows, all I know is that this CAT radiologist now makes NO mention whatsoever, of ANYTHING funny in MY liver!! "NORMAL"!!! he calls my liver!! The only thing he did note on the CAT was this "porto-caval" lymph gland thing (which is still in the liver neighbourhood). Maybe they mistake one thing, for another thing, between U/S's and CAT's.

My very first 2015 pre-treatment U/S lit up showing diffuse steatosis (with an area of "sparing" around the GB). Apparently, now, I am PERFECT! My second post-treatment U/S made NO mention of my prior "fatty" liver either, and now, this CAT notes they see a "NORMAL" liver, again NO steatosis is mentioned. (Soooo, just where do fatty livers go then, when cured of this shat-disturbing HCV, then, post-treatment, when one is repairing, does one just divest themselves of the fat in their liver, re-direct that mis-directed fat languishing in there, to be taken back up into the bloodstream, and just used up in a now-normal appropriate manner)??  Who cares, I am very happy, as long as all is as it seems, and I am no longer packing a fat-shot liver!!

This CAT shows the same lit-up pancreatic Xmas tree as the U/S showed. Good tho, nothing else sounds too bad at all pancreas-wise - just calcifications! This is just weird, to be owning a pancreas, where they keep guessing these "calcifications" may indicate "chronic pancreatitis"!! "Chronic" pancreatitis usually follows bouts of "acute" pancreatitis, which you would think one would most certainly have been aware of having bouts of "acute" pancreatitis, as these can be quite a painful events and generally you are quite ill with it! Hmmm, maybe it is all pancreatic-picture bolderdash, just a bunch of wear and tear and insult showing up. Maybe I redefine what chronic pancreatitis is!

So, reserving judgment on a lymph gland, or the crunchy things noted in pancreas and aorta, I am the picture of NORMALCY, hee hee, well, except for that poor beat up pouty kidney that had a very cruel and sad upbringing, that mostly skulks around and hides out flopped down in my pelvis somewhere ... I'll have you know tho ... that my even my kidney function seems to be a tad better lately according to my labs, not that is was bad before!

Not too shabby I'd say! Interesting the polite language they use on these reports, like, instead of saying "normal" or "unremarkable'" bowel - they just have to say something like - no "significant" abnormality!! Why can't they just leave it alone and say "perfect" bowel, neeeeeew, they have to leave you wondering what "insignificant" thing they noticed about your bowels then!! Same for the comment - no "acute" bony abnormality, uuuuuh so, what "minor" bony things did they see then?? I've never really had any of my lumbar vertebrae imaged before, and so was interested to see in L1 - 5. I walked through all my many CAT images, and noticed possibly more good reason for walking a crooked mile - I already knew about my upper thoracic area scoliosis from prior imaging (my vertebrae had been previously noted as sporting some mild thoracic scoliosis, for many decades) so, I was very interested to see my lumber area looking like a path of poorly laid, cock-eyed touching patio stones, splains a few thing meybe.

BTW - (see report below) - uh, what IS HCU? I never knew I had that too! And repeatedly apparently (plural). Hee hee

_____________________________________________

 

Reason for Exam: Chronic HCU infections with liver cirrhosis.

EXAM TYPE:
ABD/C+

HISTORY:
Chronic HCU infections with liver cirrhosis.

TECHNIQUE:
Contrast-enhanced CT scan of the abdomen and upper pelvis in portal venous
phase, comprising axial 5 mm slices and sagittal/coronal reformats.

COMPARISON:
Ultrasound dated December 13, 2016.

FINDINGS:
The liver appears normal, without evidence of cirrhosis. Left kidney displays
multiple areas of focal cortical scarring, otherwise normal. Scattered small
pancreatic calcifications as seen on ultrasound, suggestive of chronic
pancreatitis. No pancreatic atrophy or duct dilatation. Remaining upper
abdominal solid organs are unremarkable.

Normal gallbladder. No biliary dilatation. No significant abnormality of the
imaged bowel. Single mildly enlarged 12 mm portacaval lymph node. No other
abdominal lymphadenopathy. No free intraperitoneal gas or fluid.

The lung bases are clear. No acute bony abnormality.

IMPRESSION:
1. Normal liver.
2. Left renal focal cortical scarring.
3. Suspected chronic pancreatitis.
4. Mildly enlarged portacaval lymph node, likely reactive in the setting of HCV.
Of note, a clinical question was not supplied today. If future scanning to
evaluate for hepatocellular carcinoma is planned, this should be performed as a
triphasic liver CT.



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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.

 

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Thnaks tig,

Sometimes I fail to mention how staggeringly THRILLED I am about my cure, and HOW lucky I was/I AM!! Still celebrating.

Correction, I maybe did not spell it out clear, I did NOT have ANY fibroscan done (so no kPa decrease was seen) DURING the treatment period. I just had pre and post-treatment fibroscans done. (Pre-treats were 12 and 12.6 kPa)

The recent large decrease in kPa's (from 11.8 to 4.7!!) occured just between EOT+24 and EOT+36! That is why I will look forward to the next couple fibroscans, to see if this huge drop is "repeated" for further confirmation.

Wouldn't THAT be sumpin if it was true! 

Ched and Tig, Speaking of loving kitties and journeys - I have been dreaming (a lot) lately about "kitty corner", conveniently it is located in Maui. Boy, would I ever like to be enjoying a warm kitty cuddle there.biggrin C.



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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)

Tig


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I think it sounds pretty good! I don't know what to make out of the Fibroscan results. I would expect to see some regression, but that's considerable! There are a lot of variables in play right now. The viral decimation, the reduction in inflammation, your personal healing, etc., etc., all combine to bring about improvements. The differences in location and sonographer likely account for part of it, but looking at your history, the kPa was dropping during treatment. My position is to accept the fact that whatever is going on, it's headed in the best of directions. That's exciting news!

I'd wait for the CT for an explanation on the pancreatic calcifications. We all start to collect crunchy deposits in joints, kidneys, gall bladders and arteries, why not a few in the endocrine system? I agree though, don't mess with the pancreas if it isn't necessary. What's a few grains of sand among friends?

Stay warm and keep that skilled transporter handy during these cold winter days. You never know when you might have an emergency Dairy Queen requirement and need a quick Blizzard, you know the one with Ice Cream and lots of chocolate, caramel and assorted glorious goodies mixed in! Don't forget the hot chocolate... smile



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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 yall,

So the trip to the big city went not too bad, ice, cold, a wee bit more snow on our way home that made it even more dicey and slippy, but we got past it. Passed 2 accidents tho! I gotta good designated driver, and I provided LOTS of verbal support all the way, plum wore out the dang foot brakes on my side of the vehicle. hahaha

Kind of another one of those "busy" action-packed appointments, never seem to be able to get to fully express myself/discuss things, but the end result was that I performed everything I was supposed to for my first appointment of the semi-anual 5 year "follow-up study". I donated a couple gallons of my blood, it's good the questionaires are no worse than those we had to provide during the drug trial, and, I was relieved they did NOT grill me, even once, about my senior abilities to possibly bear young via some miraculous immaculate conception event! Yay.

One of my thwarted burning topics for the doc was my recent U/S (small pancreatic calcifications, one tiny liver calcification) - I kept talking to him about "stones", "chronic" etc., he kept saying to me "how do you know" you have stones??, until it slowly sunk in to my head - (duh me)  ...  "calcifications" do not necessarily mean "stone", he seemed to defer all discussion about "pancreatitis", chronic (or not),  or "stones", etc., etc., until he has a CAT scan, which I assume will get done eventually as soon as it gets arranged through waitlists. He did agree tho, that it was possible something may have been available to be seen in my pancreas on my U/S of a year ago, and, it that it was just not seen back then. He did say, radiologists will provide an opinion on what they see in any imaging, and it does not necessarily mean the next doc will see it the same way. And he did say something to the effect about how they don't like to "do" anything to a pancreas anyway unless a pnacreas is doing something to you. So, I am no further ahead on the pancreatic xmas tree info I am afraid, dead stop apparently until he has CAT scan imaging of my abd. to see for himself. Without really discussing it, I am sure he did or will re-review my lipases during trial, and as I recall, none were overly elevated more than a blip anyway. So, no new info. I did have a new lipase drawn tho as part and parcel of this follow-up study anyway.

Tig, I would gladly share my 2 U/S's (and the new CAT coming), but I have no such fancy phones like all YOU modern fangled people do - I wouldn't begin to know how to use one!! I still have a land-line! I still default to physically cutting and pasting and using Canada Post for heavens sake! It's taken me a lifetime just to attain rudimentary fashing at my computer to email somebody something! Maybe I could email, but even that would be 50/50.

Now! The real funny part of this appointment was the fibro-scan! You are not going to believe this one! (Nor can I).

Pre-treatment fibroscan (6 months prior to SOT)  12 kPa's

Pre-treatment fibroscan (just before SOT)  12.6 kPa's

Post-treatment fibroscan (EOT+24weeks)  11.8 kPa's

This fibroscan (almost EOT+36weeks) 4.7 kPa's!!!!!!!!!

Now how can THAT be?? A drop like that (11.8 to 4.7!) within week 24 to week 36 - I find that hard to believe!

Bad machine, operator error, miracle, or just real good reversal healing!??  It would appear I am the newest poster-child for liver regeneration? Jury is out. (Over next 5 years I get 9 more fibroscans, 2 per year, so we shall see what all the next ones show up at.) BTW it is an Echosans "402" model machine, apparently an older model with no fancy fat probes - but it is the same machine I have had for each fibroscan, dif operater each time tho.

Whal-whadyall think of that! biggrinsmilewinkconfuse C.

 



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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.

 

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Pablo,

I can't believe I missed this.  CONGRATULATION on your continued success!!!!

 

As for the kitties, it's all worth it.

 

Safe travels, Canuck.

 

Cheddy



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

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

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

ALT/AST normal EOT

SVR12 8/13/2016!!!!!!!!!  I WON!!

EOT 6 Months 11/12/2016  CURED

 

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Yes indeed! Curiousity and cars killed many a cat, lol! Poor kitty... When I get curious, they just scratch and head under the bed! I'm a big cat and dog lover. Wish I lived on a farm and could have a herd of them smile. The only problem with personal pet ownership is the food operation, what goes in must come out, if'n you know what I mean.

The Philips machine you spoke of is a floor model. We use a portable GE Vivid system. Durn things should be solid gold considering the cost of them. That and a policy of planned obsolescence...

Let me know what you find out. Hold your phone close to the screen and share the video. We'll read it across the miles! 

Drive safe and take a winter survival kit with you! Good luck Canuck!!! Nice rhyme huh? biggrin



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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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Tig, didn't they say curiousity killed the cat! hee hee

I am off in the ice and snow across the mountain pass tomorrow to the coast for an overnighter to the big city again to participate in my first "follow-up study" appointment -  the assortment of new bloods (including VL) and fibroscan, which I will get @ 6 months, for years to come.

I will be appreciative of this follow-up study that Gilead is offering.

What I am not looking forward to is the travelling, about 5 hours one-way (depending). Road conditions and weather are atrocious right now! Was -24 not too long ago!! But has really warmed up, to be hovering between -7/-12!! Why do I live here! We'll see if we actually make it down there tomorrow!

I will see, when I am with the hep doc for my appoint on Fri, if I can glean anything as to why I have these stones in my pancreas and the other stuff seen (or not seen) in my recent ulltrasound.

I am no further ahead in answering any of my questions for myself by reading pancreatitis 101! Lots of theories, all I really have, are some good pictures of my pancreatic xmas tree!

Tig, both my ultrasounds were done at the same small city, 2 hours away from me. The first one (ever), over a year ago (pre-treatment), and the recent one. You are right, each U/S was done at a dif. facility, by a dif. sonographer, read by whatever dif. radiologist happens to be on the hospitals list of "rotating" radiology readers. When the backlog is too great at the medium sized general hospital U/S dept, they share the load, and book you over to a private U/S outfit in the same city not far away.

My recent U/S was done at the private clinic - next time I have another U/S, I will be striving to get the same sonographer at the same private clinic again, I can't do anything about the rotating hospital radiologists who interpret all the scans tho.

I told her I had ultrasound/radiology-nerdy friends, therefore I had instructions that she was required to tell me about her equip, for them - she laughed and with glee she seemed to enjoy sharing the following ... she used:  a "Phillips 1u22?" machine on me, with "probe C51", and a "Doppler" was used for my abdomen and liver (and she added she did not use a Lin 12, L125 or L9) whatever ANY of that means! She also proudly stated they own another machine (not used on me) made by GE! I just smiled at her.The rest of the nerdy"Greek to me" U/S language details show up on every image on my CD anyway, but it is lost on me.

I am not liking this (if not "new to me") then the "newly found" calcification/granuloma/atherosclerosis business.

OK, OK!, you and Mallani just stop begging me to send you a copy of my CD already! wink 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.

 

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Hey, I used to have a cat just like that!

Oh you and your questions! I just got started googling! I'll answer you right after I finish chapter one.  smile C.



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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)

Tig


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That's a beautiful tree, C! I read your report with interest and talked to my Boss, whom performs those scans. First question is did you have that scan done at the same facility, by the same sonographer? No mention of the steatosis? It's fairly easy to see those differences, so I'm curious. GT3's commonly have that, so this result, or lack of, has to be questioned as well.

The pancreas is a hard organ to image due to it's hidey hole behind the stomach (US spelling). If you have had multiple U/S of it and this is the first time chronic pancreatitis has been Dx, then I'd be asking why now and who read the last studies with such a different determination. ( Where is Syd when we're talking about "bits"?)

Now the Aortic atherosclerosis is likely just normal (?) plaque buildup on the artery wall. That's hard to visualize from here, but with our years of life experience, we see that happen. As long as there's good blood flow, I wouldn't be overly concerned. If it's clogged, that's another story. Just an opinion from 3,000 miles away. I hope you can get those questions and concern answered soon. Please keep us informed when you learn of the differences in diagnosis.

I found out who knocked your tree down. We got the little crusader!!

 



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Hey, I got my very own "personal" xmas tree! And it came already decorated and lit up!

Got my abdominal ultrasound back. Middle of Dec. we drove 2 hours, over to the nearest U/S place, over dicey roads, stayed overnight to do some xmas shopping. (Jes happened to git myself a nice new stove for xmas too!! Yay. But, now I have no excuse. So far the stove has not improved the cooking around here, lunches are quite alright, as he often makes them.  So, now my excuse will have to be that I don't know how to work the stove as it is "digital").

Back to my other xmas present - my very own ultrasound xmas tree ... the pancreas is big on one end, long and pointy at the other end, it "kinda looks" like a tall narrow xmas tree, mind you it's an xmas tree toppled over then, as it lays on it's side ... 

    .:.>    Oh darn, my sketch isn't so good. 

(Here's a better pic, in case you haven't seen your pancreas lately). http://www.medicinenet.com/image-collection/pancreas_picture_2/picture.htm

Hiding a bit below and quite behind your stomache, a nice ultrasound person can show it to you, adorned with or without glittery decorations.

Just in time for xmas, mine shows up just brilliantly, with many pinpoints of twinkling bright lights (would have been OK, had I a need for this extra festiveness). A whole new meaning to visions of sugar plums dancing in my head!

The radiologists interpretation ... (just one man's opinion, mind you) ... "Impression:  Probable chronic pancreatitis. - Pancreas contains multiple small foci of calcifications consistent with chronic pancreatitis. Multiple echogenic focci seen throughout the pancreas, aprox. size .3 X .3 X .3 cm (head), .5 X .4 X .4 cm (tail) - No other pancreatic abnormality seen."

And then just for good measure, they also noted:  "Tiny (very tiny) calcification in the left lobe of the liver measuring only 4 millimeters in diameter - Echogenic focci - granuloma? -  .3 X .4 X .2 cm." 

WTH! "Chronic" pancreatitis! I had a pre-treatment U/S done about 14-15 months ago! Just how long is "chronic" for heavens sake! Are we suuuure no xmas lights were twinkling with the first U/S?! And, why the heck do we bother to produce these glistening "calcifications" anyway! Feel like a damned oyster! What am I, Mother of Pearl?! I am going to demand a re-count. Brother!

Last year it was just mild diffuse steatosis, everything else was not noteworthy, this year, no one mentions steaotosis, but see aorta atherosclerosis! Huh? Dif eyes/dif ideas of what is noteable, or is it a dif liver?

They say you are never too old to learn? Well, I wish I knew what I was looking at in all these U/S pictures! I count about 12 decorative lights on my pancreas "tree"!! But then again I do count on my fingers.  Now I have to study up on how to read and interpret ultrasounds (geez, that shouldn't take too long eh? I'll jes google it)! And what's a granuloma, that doesn't sound too bad, like a wound that's "granulating in", eh??, like ... all part 'n parcel of the nice healing process ... right? Oh well, gotta go, hittin' the books now - how to dismantle a xmas tree 101. I'll prolly just learn that I am like millions of other old North Americans sporting christmas lights and that every radiologist sees what he wants! Nah, nobody's in the least worried 'round here, but Tig or Mallani, should you just happen to know a good U/S interpreter please RSVP with an invitation to my house, I gotta boxing-day fire sale going on for a good horror flick CD! smiledohconfusehmm C.



-- Edited by Canuck on Tuesday 27th of December 2016 04:58:14 PM

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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.

 

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Hey Pablo,

I am glad we are both going to be in the "follow-up" thing after our 8 week trial (this will be sof/vel/vox "part 2" for us then!) hee hee

I recently received the paper work for it. I said I would let you know what I found out, when I knew more, so, here it is:

It is a "study" alright, but not quite the same thing like the "trial" study we were in, this "study" we are going into is actually referred to as a "Registry".

I see, now, that Gilead, long ago started these "Registries" for varying reasons, ours (I think) is part and parcel, a continuation of many "morphing" on-going studies Gilead does to follow their drugs and us (more research/data for them). One of the OLD (original) "Registry Studies" (mostly to do with cirrhotics who did sof) was NCT0229276, ours, is "semi-related to" and "further" to, "semi"-associated with this old NCT number, but I have yet to find the NCT number for our newer version.

You will probably get (basically) the same outline/agreement I received soon, and we will be signing our lives away again.

I think there are 2 arms for this study we are going into, one arm for cirrhotics and one arm for non-cirrhotics

For now (without the right NCT number for it) the "title" number of MY arm (which I am told is supposed to be for cirrhotics) is: GS-US-337-1431  (1500 participants?)

I believe it is a slightly dif. GS-US -337 ____ number, if you end up in the "non-cirrhotic" arm - (2 years or 5 years long, I'm not sure)

I think there are more tests in the cirrhotic arm, than the non-cirrhotic arm.

For me, every 6 months for 5 years - fibroscan, tons of all-fasting blood work, loads of questionairres. Not on the "list" of tests, but talked about - some possibility of U/S's (unconfirmed) so, unknown if this will happen at all or how many times over 5 years. On the "list", the possibility of a endoscopy, perhaps as many as 2, one (maybe) at start and one (maybe) at end?, but, there seem to be "caveats" regarding endoscopies. Same for "possible" liver biopsy, perhaps one at end, but again caveats are mentioned.
 
For bloods there will be  - "routine" health blood tests.
                                   - Gileads "special" tests - "Main Study"
                                   - 2 more Gilead "special" tests - "Optional Non-Study left-over blood", and "Optional Blood for Future Research" (to be done each draw - if
                                      you sign up for all of them). Blood/data/studies can be stored/used for up to 15 years (fine print ... in Canada, in some cases, for up to 25 years!
                                     hm, lessee, I'd be about what 86 years old then!)
                                   - VL tests
                                   - Alpha-fetoprotein (AFP) - Liver cancer marker
                                   - FibroTest, Enhanced Liver Fibrosis (ELF) panel, and LOXL2 levels - Fibrosis/cirrhosis markers
                                   - Fasting lipid panel - Cholesterol
                                   - Hemoglobin A1c and HOMA-IR - Diabetes, insulin utilization.
 
Jeesh, I hope they don't keep giving me pregnancy tests! I want to skip endos and biops too eh. And I will be hard pressed to enjoy the questionnaires, but all else would be good fer me!
 
It was suggested that "some" more of these blood test results would routinely be revealed to me, not the special ones (same as before, like during the trial), but not sure which "other" results will or will not be withheld from me. 
 
The LOXL2 levels (and much of everything else) will be VERY interesting to me!
 
OMG - driving in these winter conditions over the pass! My first appointment is in January! blankstare 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)

Tig


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Hey Pablo,

Congratulations old friend! You deserve this great milestone. 

I would've taken advantage of the ongoing testing too. Good idea! 

Here's your award     (You get the alc. free, sorry!)

 



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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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Congrats Pablo!!! WOHOOO!!!



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Diagnosed on Oct 06, 2016. Initial VL: 3 million, ALT: 20, AST: 26. Elevated Bilirubin. Genotype: 2

Started Epclusa Nov 20, 2016.

UND at 4 weeks. Und at 12 weeks.



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Happy for you Pablo!  clap.gif



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congrats Pablo, I know that this is BIG for you. What fabulous news



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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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Dear VERY happy Pablo,

I am VERY happy too, for you (and me)!! We did it bro, with just a little help from our vel/vox friends.

Whew, big milestones we haul around, and pass by on this journey!! It IS lovely to be SVR24, isn't it!

You deserved every molecule of this very fine cure, and it was long overdue - my only regret for you was that prior disappointment you had to endure and all it entailed, the toll it took, but now, you can carry on, right where you should be and deserve to be, finally free of that which caused so much havoc and strife for you.

Great news they did offer you that continuing monitoring thing (especially after they so unceremoniously gave you the "cured bums rush" out the door)!!

I wondered if they might offer it to you. For a while i wondered if maybe there were just "certain" people/pre-requisites (in order to be offered the extended monitoring), like GT 3 's only, or F4's only, etc., but I am thinking now it is just "Gilead" simply wanting to follow "many varied aspects" of their handi-work. At my facility they just happen to have their own fibroscan machine, used on trial people, so it is dead easy to fibroscan me anytime I am there, perhaps at your place they have no fibroscan of their own, and would have to farm you out to get one done, so, is not part of what they will follow in you (no idea).

I still haven't heard anything more back from them, expect I will soon, but aside from labs, I am pretty sure fibroscans WERE part and parcel of the monitoring (as well as perhaps U/S's - but the U/S part of it I am not at all sure about). I'll keep you posted on what they say to me. And as well, I think they mumbled something about every 3 or 4 months? Not sure. Like being in the first study, where Gilead always offers a tiny stipend for pt. costs, did they suggest there would be any stipend for you to attend this second part??

Hey, small world eh? You, happening to know the same prof. doc that our friend from Poland is going over to have a consult with in the UK!

I don't know if it is just you being SVR24, or whether is it rubbing shoulders with the like of all us international types here, but I have noticed changes in you, aside from adopting certain terms , like "tids", "double-down-dog", you have lately taken to saying "eh" - what the heck eh?! I don't know whether to be complimented, or feel guilty for bad influences and perverting your formerly fine English.

I am so pleased for you!! I can't find the right words to express. 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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Got the phone call today...I'm cured!  What a huge relief.  Many, many years of my life, eh?

Interestingly, given I was technically discharged last week, I was offered a follow-up trial.  LFTs and VLs every 6 months for 3 years.  Canuck mentioned it to me.  The chances of relapsing are tiny at this stage, but why not take advantage of the offer and track my liver's health whilst giving a little back to science.

Pablo (a vey happy 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.

Tig


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Hey Pablo,

I think that would be a perfect schedule to follow. If your Hepa has cut you loose, then you're done. Routine wellness checks and bloodwork with a CMP annually should be adequate IMO. It's the same schedule I follow now. If you want to get a PCR in a year or two, do it, it's a rush. Every time I get one done the anxiety creeps in. You know it's going to be undetected, but the memory of having high viral loads and treatment rear their ugly heads while we wait for results. We can be our own greatest stresser! And we know it!

Will be crossing fingers on the results tomorrow. Let us know when you hear something. SVR12 is golden, so this is extra frosting my friend! Good luck Brother, I know how you're feeling. You got it -



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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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So what you are saying is that I should see my GP once a year and ask him for a blood panel including LFTs?  The hepatology team are offering no follow-up at all so there wouldn't even be an annual appointment with them.

I should have the EOT+24 VL result tomorrow so you thoughts/prayers/positive vibes are welcome!



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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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Tig56 wrote:

Hey Pablo,

I wouldn't expect you to NEED to have hepatology follow ups after your SVR24 is confirmed. With the low fibrosis score and healthy lifestyle, you don't have anything to worry about. F3-4 is different according to guidelines. If you were to experience an elevation in your enzymes, then you seek another PCR. That ALT will be a hepatic weather vane going forward. Annual health checkups and the routine bloodwork they perform is enough imo. When the subject of high fibrosis comes into play, then protocol changes.

Yes.....it's a very good thing! wink


 What Tig said!

 

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 *

Tig


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Hey Pablo,

I wouldn't expect you to NEED to have hepatology follow ups after your SVR24 is confirmed. With the low fibrosis score and healthy lifestyle, you don't have anything to worry about. F3-4 is different according to guidelines. If you were to experience an elevation in your enzymes, then you seek another PCR. That ALT will be a hepatic weather vane going forward. Annual health checkups and the routine bloodwork they perform is enough imo. When the subject of high fibrosis comes into play, then protocol changes.

Yes.....it's a very good thing! wink



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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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Thanks all.  It's only a wee bit of anxiety.  

I asked them what would happen after the trial...would I referred back into the NHS hepatology service for an annual follow-up?  To my surprise, I was told that I am now discharged...no follow-up.

Mixed feelings on that one.  I'm more than happy to forgo waiting for an hour or so in a dreary outpatient clinic for a perfunctory annual follow-up.  But on the other hand, I think I'd feel more reassured with a follow-up.  To which the doctor replied that my risk of HCC is as low as the general population given my last biopsy was F0 and I don't drink.  I countered that my fibroscan score (from this year, biopsy was 2 years ago) is 9 (F2-ish) and he didn't seem too worried about it....

....but I suppose this is good thing, no?

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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Pablo,

It's no surprise you are a bit nervous - since you have been in this nearly half you life!

Wendy is right.  Move yourself out of your head., just like you have a million times before to get you through treatment(s).

At the end of the week, when you get your results, take a moment to dump all of that historical worry somehow.  Set it on fire.  Watch it go up in smoke.

You are surely free and all the better for it. I'm happy for you already.

 

Warm regards,

Cheddy



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

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

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

ALT/AST normal EOT

SVR12 8/13/2016!!!!!!!!!  I WON!!

EOT 6 Months 11/12/2016  CURED

 



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you got this Pablo! TRY to stay out of your head and have a good week. First things first



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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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Quite the journey, no doubt! That's interesting background on your trial numbers. You were both fortunate to be involved in this trial. You couldn't have better timed things. Such an incredible treatment, thanks Pioneers!!

Pablo,

Don't sweat the test, it'll be Undetected - SVR24! We'll be waiting Brother...



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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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Ya bud, I know.

Sometimes ... it doesn't take much to get us back to feeling, well ... "fretfull". You had extenuating circumstances, that set you up well, for exhausting worry - pre-primed. And you had a very good amount of time to practice this. I still do it too, give in to fretting, but I accept it now, I don't feel bad about it anymore, seeing myself "in operation" and seeing all the other folk here who have entered into the "trust of treatment" (naive or otherwise), I have learned a lot from everyone, and, a little bit from myself too. Doubt is what it is all about, we have to have a little, just to get through it, and to get by it (you know what I mean? ... it's normal shat). I am no longer disappointed in myself for being a mini-doubter from time to time, or, of being appropriately joyous or worried at the "correct" or expected times). People do not have to justify their fear or doubt, just be aware of it, and juggle it into it's time and place.

For me the EOT+24 was "kinda" the easiest one, stress-wise, but I know this is NOT the case for MANY.

My 24 week result was SLOW!! Waiting for the official confirmation "paperwork" just about drove me crazy (again) like some of the other slow-return ones did. Many delays and screw ups, they did give me a verbal, but (because of my "prerequisite" doubt friend) I NEVER (truly) accept a verbal, (I made up my own stupid rules) - I make NO "absolute" announcement to others (nor fully accept it myself) until I see the actual written "paper" with my very own eyes! Glutton for punishment then, if the results come back slow. Murphy law self-torture rule.

Had my draw on Oct 17, called frequently, through many stupid miscommunications (their end!) ... vacations, not in today, they are too busy, forgetful, are not prioritizing my request, dumping duties from one staff to another, can't make the fax machine work, etc., etc.... to finally getting the "printed" paper confirmation in my hands on Oct 31! Not all is forgiven or forgotten (the things like the horrors in the blood letting room, or dealing with staff) as soon as you do get the official UND, but, it does help immensely.

You and I are are "double down dog" lucky we got the VOX!! See (when you get a chance) the details of our trial - there  were only 219 of us in our trial (world-wide)!! And of those 219 only half of us (110 souls) were lucky enough to get the VOX arm!! In Vancouver, I was one of only 5 available trial seats - I will be forever grateful. RC was right, I was under the bright shining light of my lucky polaris star!

I hope the next time you have to see the "new" doc there, he has taken some "don't be an ignorant a-hole" lessons. He really sounded like a party pooper. biggrin C.



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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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Sorry, yes, I meant EOT+24.  I haven't been thinking about it at all but tonight I've become slightly nervous, not that I have any reason to be but, you know....

I should have the result by the end of the week so I'll keep you posted.

It's been quite the journey since 1996.  That's nearly half my life. 

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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Pablo,

You mean you're going to your EOT+24??, (not your EOT+12 in a couple weeks ,right?) - you already had EOT+12 (lest I forget)! But, hell, who's counting eh, hee hee. Sheesh you count just like me, with MY fog faux pas, I trust nothing that comes out of my head unless i have a calendar, clock or another human being I can rely on, right in front of me, to prompt me.

Yes, I have no great details yet about the "study", but off the top of my head, I would really quite want to (as it would help me and others, I figure) BUT I don't know yet how much is involved, how many trips, how long - I just don't know if I can afford all these long expensive stay-over trips down there continuing! And I think it was supposed to start in Jan? - not great safe travelling weather over our mountains either. I think it's supposed to be an every 3 month thing?

I'll let you know, when I know more.  Keep me posted on what you find out about this from your end too please bud. smile C.



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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 Canuck

I have my EOT+12 appointment in about 2 weeks, but so far they haven't mentioned anything.  I'd certainly be interested in an add-on study if it meant I'd get ongoing fibroscans.

You going for it?

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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Hey Pablo,

My dear Vox bro. We are like twins, not identical, but twins all the same, sharing everything, including our thinking, feelings and drugs!! REAL kindred souls, bound by blood - literally! Hee hee.  I am so glad you are my bro, I could not have hoped for a better one!

I do ponder how our other VEL trial pals are making out, Oombant, tkflex36, and webtomass - not only the "with" participants, but the "without" (the VOX-less contingent) too.

Have a question for you ... when you went to your last appointment, did they mention to you or ask you if you wanted to participate in a further"add-on" study/trial (more bloods for the purpose of "following" your genetic parameters, and, to further collect and follow your LFT's and fibroscans - can't rightly recall this moment, but I believe abd. U/S's were to be part of it too)?? They asked me, and said they would contact me about participating it in, in about 3 months from now. I think this "further assessment/data collection" was to be done every 3 months, for a while, not sure how long.

Just wondering, if they ran the same thing past you, or to our other pals who got VEL by trial. 

The only thing I would not look forward to, by participating, would be the long expensive trips, and filling out those gall-darn weirdly posed/poorly phrased, and hard to "accurately" answer questionnaires! Probably will be questionnaires tho, drat! Gilead science rocks, so, anything for the cause I figure.  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:

Thanks Cinnamon girl...I note the colour of your cardigan matches your name!


 biggrin

I`m glad you noticed that, Pablo, I do try to co-ordinate my `look` to my online user name!   Not so easy for everyone, I suppose!  Lol



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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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Thanks Cinnamon girl...I note the colour of your cardigan matches your name!



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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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