Hep C Discussion Forum

Iris Dragonfly · Guru

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

Tig · Admin

That sounds like quite the trip into the Big City! I have to laugh though, about the rats. I live on the edge of a wildlife preserve. We have them all over, it provides the native and some not so native animals, a path through the madness. I have become the IHOP restaurant for the wildlife passing by. I started by feeding birds and squirrels and now I’ve got raccoons, deer, bobcats, an occasional bear and recently I have seen a few big rats. I can’t leave out the many Muscovy ducks, too. I have a big water station out there and recently the babies were learning to swim in it! Pretty cool stuff! As long as they stay out there and don’t invite themselves to my back porch, I’m good with all comers. The only thing I’ve noticed though, is the cost involved in it. There are some hungry and thirsty critters out there!

Good to hear your crunchy bits aren’t causing any new issues. The CT scan will be a confirming test for you, one of continued improvement!

5-1-18 · Guru

what an adventure canuck!! rats and cats and ice cream too?

you do have so much on your health plate and still so full of life

so glad you made it home safe and sound from the long strange trip

Image result for rats and cats gif

Canuck · Guru

So, my nice chauffeur drives me down to the big city again for another hep study follow-up appointment (repeat aprox @ 6 months) for years to come - Gilead gets their top secret blood supply from me to work with, I get some labs and a fibroscan and sometimes an ultrasound out of the deal - I think this time around I am going to get a CAT scan, but I haven't found that out yet - I'll let ya know. Same for the labs, I'll post them once they return, this return data could take a while. I did get a fibroscan while I was there and it was just about the same as last time 7.4 kPa (see me grinning?), gloating really ... so nice to be softer than my old 12.6 kPa self!

Me and liver doc sit for a nice long twice interrupted chat, accumulated a total of about 5.9 full minutes of talk, we superficially discuss kidneys stone, pancreatic calcifications, non-materializing pancreatitis, newfound degenerative disc disease, pulmonary function tests and my major concern, my psyche - humph, he pushes "head" pills - surprize eh? I went weird after taking a smoking cessation drug (that;s my story and I'm sticking to it) and I have remained weird since, ya,ya, ok, i WAS weird before Champix but I am really weird now. I wanted to tell the doc that instead of his pills I could probably revert right back to normal if I just took up smoking again, as that should help reduce a lot of the stress i have been experiencing since i quit smoking last May?

Oh, almost forgot to tell ya ... the trek is long down to the big city, so, we travel down there the day before my appointment and stay over. The night we stay at the motel I always do a walk-about. The walk-about takes me through this one particular big busy city parking lot. One time (quite late at night), when it is NOT very busy there, as i passed some decorative bushes I spied a wee kitten out of the corner of my eye, I excitedly exclaimed with tender concern, surprize and wonderment, "oh, look - look! - a little kitten!!!!!!!!!! I am already imagining petting and capturing it, until i get a couple steps closer ... umm, oh, oh geez, THAT's NOT a kitten! - eeeewwww, it's a gall-danged RAT! Fast forward to this trip, same parking lot, same precise spot i saw the rat last time, as i am approaching the prior errant kitten sighting area - I am gobsmacked, I see in the dark a motionless but the very definite shape of a RAT, a VERY HUGE RAT!! I am jaw-dropped alarmed at the size of it, I gotta see this, but, just not too close - as i get closer, OMG, and thank GOD, it IS a small cat! I am ready with my best kitty calling voice, but to no avail, it runs in horror away from me - and me in horror wondering how this poor cat lives in a city parking lot all by itself ... oh ya, um, duh, with the rat supply, uh huh. I can't stop thinking about the concrete jungle.

Nice to come home to semi-clean country living again.

More to come. Later, C.

Observer · Guru

I never thought of you as course...I think youre rather refined.

As for your liver...well the same is better than worse...if you get what I mean.

the kidney stone... hmm

the crunchy bits... blankstare well thats our Canuck, shes a crunchy girl

Cheddy · Moderator

Geez, C.

You are a ceaseless warrior.I'm quoting 5 here:

"Too much stuff!i'm glad your coarse thing isn't any different than before... better would be nice, but not worse is a good deal too.

you sure do have a lot of stuff going on and i think it's so cool that you are doing so much still and helping us all out as well.

you rock C! "

And you always hang in there, too.

Cheddy

Tig · Admin

Well, whaddaya think? Aside from the new stone and the commentary on echo-texture, the tests seem to be holding up and not presenting any new complications. That’s a win in my book. That’s what we’re trying to do, keep things functional and no worse for wear. I’ll be interested in the full radiology report. Did you talk them into a Fibroscan this time around? Any mention of fatty deposits? Tell that kidney stone to stay put and you won’t even know it’s there! It’s very common to find them, especially in those of us with advanced knowledge. That’s a nice way of dating people my age, lol!

We love ya, crunchy bits and all!

xo

5-1-18 · Guru

canuck, do you have a lot of pain with the pancreatitis?

do you have to follow a special diet?

did all of these irregularities occur due to the HCV?

i'm glad your coarse thing isn't any different than before... better would be nice, but not worse is a good deal too.

you sure do have a lot of stuff going on and i think it's so cool that you are doing so much still and helping us all out as well.

you rock C!

Canuck · Guru

Geez,

I am so behind in posting anything about my every 6 months check ups! I am in that ongoing 5 year Gilead study where i get bloods, U/S and fibroscan every 6 months.

I did get a few things updated and posted (in my bio) but certainly, a lot of my info is missing in action, I really must try to improve the info gaps (in my bio and especially here)!

Ordered for my November 2018 appointment - it took them until February 2019 to give me my U/S! - I will only convey this most recent tardy U/S info here for now, as there is too much other old info to catch up on.

(I am not posting ALL of the report - I leave out most of their "normal" findings : ). I just convey their other notes. 117 images for this U/S. They include many blood flows and vessel diameters/measurements.)

Partial U/S notes as written by the radiologist:

- Small calcifications in the pancreas are again noted, in keeping with chronic pancreatitis. The pancreas is otherwise unremarkable.

- 4 mm non-obstructing calculus in the left kidney lower pole.

- 4 mm calcified granuloma in left hepatic lobe is unchanged from prior CT.

- Liver demonstrates diffusely coarsened parenchymal echotexture.

Impression: 1) No acute abnormality.

2) 4 mm calcified granuloma in the left hepatic lobe is unchanged.

3) Evidence of chronic pancreatitis, as before.

4) Non-obstructive left nephrolithiasis.

Partial U/S notes as written by the sonographer:

- Left Liver Medial Lobe Granuloma - echogenic focci - 4 x 3 x 3 mm. (Image 29 - .368 cm. Image 30 - .316 x .311 cm.)

- Pancreatic head and body - multiple echogenic focci - .2 - .3 size. (Images from head - sized - .226/.220/.223/.337/.238 cm, and, .226 x .220 cm, and, .334 x .293 cm).

- Left Kidney Lower Pole Nephrolithiasis - echogenic focci in renal cortex, plus, non-obstructive? (her question mark) stone in lower pole. (Images 103 and 105 - stone size - .378 x .205 x .451 cm, and, .414 x .210 x .394 cm).

____________________________________________________________________________________________________________

My prettier less-worn right kidney is about 12+ cm long. My more hard done by one, the left kidney (that has always shown renal scarring from infections) has long been a little wisened up and smaller at 9.63 cm. But other than seeing the usual (a bit messed up renal pelvis), in this smaller scarred up left kidney, a stone has never been noted in it's lower pole before - a stone is something new for me.

They seem to have measured the pancreatic calcifications mostly just in the head, but the calcifications are many and tiny, and are throughout both the head and body of the pancreas.

Here I was thinking it must have been just me improving so greatly, that in my last U/S they did not even mention the words/things ... like ... "Liver demonstrates diffusely coarsened parenchymal echotexture" ... anymore! Um, like that "coarseness" had just disappeared? Hmph, i note they ARE still using that terminology again, so, it's the same ole/same ole "coarsened echotexture" as it has been all along! - but it's no never mind, being a little coarse, or not, my liver is functioning just beautifully thank you. : )

Other than the crispy-critter oddities, I am most pleased with the good normal things they note, and with the lack of bad things they find. : )

Canuck · Guru

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.

Canuck · Guru

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. smile wink

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

JimmyK · Guru

Chuck?

Chuck who?

Wait, don't say it.

Tig · Admin

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.

Canuck · Guru

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

Canuck · Guru

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 fibrosis ! biggrin

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 drugs! biggrin C.

Observer · Guru

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.

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

Canuck · Guru

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.

Jaggles · Senior Member

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

Tig · Admin

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

Canuck · Guru

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

Tig · Admin

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

Canuck · Guru

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.

Cinnamon Girl · Guru

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

Tig · Admin

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!

JimmyK · Guru

Oh my dear sister I am so happy for you!

Jimmy

BetterLate · Member

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...

wendyo · Guru

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

Canuck · Guru

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.

Canuck · Guru

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.

Tig · Admin

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

Canuck · Guru

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! biggrin smile wink confuse C.

Cheddy · Moderator

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

Tig · Admin

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

Canuck · Guru

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.

Canuck · Guru

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.

Tig · Admin

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!!

Canuck · Guru

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! smile doh confuse hmm C.

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

Canuck · Guru

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! C.

Tig · Admin

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!)

EricChuckFar1 · Veteran Member

Congrats Pablo!!! WOHOOO!!!

Phoenix17 · Senior Member

Happy for you Pablo!

wendyo · Guru

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

Canuck · Guru

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.

Pablito · Senior Member

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)

Tig · Admin

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 -

Pablito · Senior Member

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!

Shadowfax · Guru

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!

What Tig said!

SF

Tig · Admin

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

Pablito · Senior Member

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

Cheddy · Moderator

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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