Hep C Discussion Forum

Tig · Admin

RE: SVR 128

movebo · Member

Hi,

well, I can understand the thing about dancing, never done in 60 years. Maybe should have, but it was considered uncool in certain circles, and I was young and stupid, and had only brothers, no sisters.

About the scores, I don't have 2018 platelets and cholesterol yet, I do this stuff with my GP, not my hepdoc. Soon to come.

But in sept 17, APRI was 0.23, Fib-4 was 1.23 and Forns was 5.62, all nice.
Pre-treatment: APRI: 0.5, FIB-4: 1.6, Forns around 6.5. These are not so bad, another reason my hepdoc was not pushing for interferon, with Harvoni round the corner. And no, these did did not go up during the year before the biopsy. (Not that a biopsy is 100 %, I guess that's why they call it the gold standard: not all that glitters ...)

The Cochrane thing? This is a whole bag of rather unpleasant worms, maybe best not to spend time on, time that could be used walking, dancing, whatever ...

Cheers,

Tom

PS: The water is better seen than named, see attached ...

Canuck · Guru

I agree, walking is very good for body and soul ... I should try harder, I fluctuate up and down a bit, the time and distance, but take a yoga class as well (mind you it is kinda "lassitude yoga" I call it) ... experimented with joining a "zumba" class, just last week (good grief if anyone could EVER imagine ME trying to "dance"!), it's a wee it more cardio though (if I bothered to give 'er), we'll see what i can do to improve my strength and endurance more and more, I was having trouble with that before treatment and during and after - I'm waaay better than I used to be, but it remains to still be kinda an issue for me. I can't seem to get ahead (yet), plateuted at this wimpy level, where if i put out more i find myself correspondingly having to have an equal time nap to re-coup! Very time consuming to say the least. I would probably exercise more if I could find someone to do it for me. Did I neglect to say I smoked? wink

So, I'm very glad you have all that data to peruse, consider, use for comparisons, give you a good idea of trajectory (apri, fib4, forns) "plotted" no less! Good for that then. Hate to see anyone left in the dark with no feedback or too little. So, for instance, your last check-up did you get an apri/fib4/forns then? I still figure adding many kPa guesses to the mix would not hurt. Glad your liver shows as a smoothy.

Curious, I am wondering ... at the time of your "modest" MRITE result, what would your blood labs have indicated (otherwise) as far as an estimated Fscore at that same time? And, did any of your blood-based fibrosis/inflammation tests indicate they had also increased, appropriately/correspondingly to the same time as your biopsy showed F4?

What Cochrane report were you reading?

So, what body(s) of water do you get to look at on your walks? I get Interior BC creeks, Fraser River, and a small deep fiord-like glacial-fed lake to walk by. Only did a couple miles today. zzzzzzzzzzzzz smile C.

movebo · Member

Hi Canuck,

Why do you not walk more? I think walking is good, for body and soul!

I am sure I could find a fibroscan machine. But I think I am already sufficiently obsessed with this stuff,
spending far too much time looking at hepatology journals (the 'in print' sections had the stuff on daa/hcc
non-connection rather early, I was a little concerned about that last year).

And I have this excel spreadsheet with all the APRI, FIB-4, Forns scores, plotted as a function of time. So far all looking pretty good ...

My hepdoc has not ordered any proprietary tests (Fibrosure etc). Maybe liquid biopsies will become the standard method soon.

US was always like it is now: no overt nodules, surface smooth under high res scan.

Of course I also hope/think that things got to get better after SVR, and in my case, they did. I am feeling much better. But I have
also changed my life-style, for example, no alcohol at all (down from maybe 4 or 5 beers a week). This is why the guys from Cochrane
do not shut up, and they have a point: in an ideal world, evidence based medicine should work with RCTs. The main author of last weeks
BMJ paper actually said in a podcast that long term RCTs with mortality endpoint are needed. In my medically uneducated viewthis is plainly unethical.

My walk was great, nothing better than to look over water.

Cheers, Tom

Canuck · Guru

Hey,

Thanks for letting me know about the visual acuity - interesting then and interesting now. Good it changed for the good back then!

Lucky if i spread out a 10 km walk over a few days!

So, I still say what is wrong with fibroscans, can't hurt to have that "extra" feedback in an ongoing fashion to add to all the other data - AND, he must have been doing blood methods of Fscores on you all along (each time)?, no? (fibrotests/fibrosures, or one of the many other boold methods tests they use)? What have those been running at since EOT? I am not against biopsies (if you are not) but why not make use of every other method of guessing (blood methods and fibroscan as well)? Did old U/S writers mention things like nodularities or specifically cirrhosis, and (aside from the spleen info) do new U/S writers note improvements in your liver from prior? Somebody must have a good (non-invasive) guess at your current Fscore for SVR 128!

I am hoping/wishing (betting) things got to be better in the liver dept aside from cure and basic function, maybe you are having more regeneration, less hardness, than you even know about!

Are you located far, far away in some exotic lands? Can you not find a fibroscan machine to develop a long term relationship with?

It's been lovely to hear from you again with your good news, always enjoy your posts. C.

movebo · Member

Hi Canuck,

well, the eye is at it was back then, I am happy with such a stable situation.

F score? Well, remember, MRI TE in 2014 was clearly off, putting me at F0-2, when the biopsy
came back F4 a year later. So I am afraid my doc does not really believe in noninvasive stuff:
The correlations are what they are, and they are not very strong.
I guess it does not matter much, if all are treated. If I had not had the biopsy I would have, most
likely, been cured just the same.
And the psychology would have been better, without this word, cirrhosis ...

Maybe I should do as Malcolm did, get another biopsy, with Fentanyl, and see what is what.

No matter, I will go for my 10km sunday afternoon walk now, and listen to some spy story by Le Carre,
life is good!

Cheers to all,

Tom

Canuck · Guru

movebo!

SVR 128! Big congrats. I am so glad you come back and update us. I had to crack out the calcuator, about 2 1/2 years now eh? 2 1/2 years sounds soooo long, but yet, feels like we were just writing on your on-treatment thread not so very long ago!

I always liked that, that you did reading up on things - like finding that spleenocalc thing!

With stubborn good results like you have been getting, they will cut you loose (or some looser), if it does not feel safe or suit you, you have the perogative to construct (somehow) having fibroscans done, arranged on your own via your request of even a GP, for further feedback. Your fluctuations in Fscore were deduced by other means as your hep guy was not big on fibroscans - but i like fibroscans, i like that feedback, just wish you had had some done in the past for baseline to compare with in future ones. I find them reassuring, when added to the pile of other important telling data in our followings.

So, what does the hep doc think your Fscore is right about now? and what is he relying on to make that estimation.

You had a visual field improvement one time, that i was interested in - is that visual field still improved at the same level?

Glad to hear your good news. smile C.

Tig · Admin

Hey Tom,

So good to hear the great news! Yeah buddy! It’s always nice to get that information confirmed and trust me, it never gets old seeing that big fat ZERO on the report. Your latest bloods are stellar, congrats on those, too. You’re so clean you probably squeak when you walk! The news from your doc on your screening is often determined after much consideration, as well as anecdotal and professional evidence. Your blood work and ultrasounds say a lot about your current health. It can take a long time for splenomegaly to subside. If your liver U/S is good, no portal hypertension and your health keeps improving, then I would do more celebrating than worrying!

Take good care and enjoy that confirmed and long lasting SVR! Thank you for your gift to the forum, too! Much appreciated!

movebo · Member

Hi Tig and All,

I have been terribly busy with life & work, and have not posted much. But I still read, and I am happy , so many people are cured and doing great.

well, another 6 month US and bloods, my doc actually did a viral load, unsurprisingly undetected...

My 12.3 cm spleen was again tagged as "slightly bulky", this made me go hunt, and I found a nifty little app called SplenoCalc, on google play, no less:

These guys have measured spleen sizes of many people (as healthy as possible), and looked at the distribution, depending on height and sex (or gender nowadays, I never know). All properly published in Radiology.

So it says for my 186 cm male height, the spleen size "should not exceed" 14.1 cm, and with 12.3 cm, I am in the 50-75 percentile. Pretty normal. Here in Asia, most people are somewhat smaller, and the ultrasound report writer may not have taken this into account.

Otherwise: ALT= AST= 17, GGT = 22, AFP = 3, everything else in range. OK.

Then my doc says we do yearly check-ups from now on. I am a) happy, he clearly thinks I am ok, b) worried, what about the guidelines? But this is a problem I am actually happy to have, and solve in the future.

Cheers, Tom

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