That's great news, Tom! Your labs are outstanding as well. Thanks for the information on post tx HCC from EASL, will have to watch that presentation. The benefits from curing HCV far outweigh the negatives, imho anyway.
Canuck said
May 10, 2017
Movebo!
Hey, nice. Lovely sounding descriptions of your US imaging, my goodness, that interpreter must be taking some pleasure in using all those great words.
"Optimistic" ?! you say?, well ... how understated! Them there are ecstatic results, all-round! 20 km last weekend is also a very telling sign BTW, hee hee!
Hey, you and I read the same stuff!
So glad you posted your update - continued congrats! C.
movebo said
May 8, 2017
Hi All,
Just had my 6 month US + bloods, so I thought I post an update and some thoughts. I am at SVR 75 now, did VL at 48, which was undetected.
US is clear: "No suspicious solid hepatic nodule detected", spleen 12 cm, "still within normal limits", "no prominent irregular capsular contour of the liver in the high-resolution surface scan to indicate macronodular cirrhosis pattern".
Blood: ALT = AST = GGT = 20, Platelets = 224, AFP = 3, everything else also in range. And I feel quite healthy, walked about 20 km last weekend.
So I am optimistic.
For obvious reasons I have followed the "F4 Post DAA HCC" debate with some interest, and I think there are many who may fear or reject treatment because of that.
I would suggest to google "EASL2017/ComprehensiveReview#1" and watch the discussion/movie on "HCC Risk Post-SVR - Among Cirrhotic Patients with an HCV SVR, the Risk of De-Novo HCC Relates to Baseline Factors and Not the Use of DAAs: Results from a Nationwide Cohort". These guys have solid histories, and to me (no expert) they make a lot of sense. And they have data..
There is talk on hepc boards about Gilead making 60 billion, and what kind of motive such a pot of gold provides. Well. The number of hepc related liver transplantations declines.
Cheers, Tom
-- Edited by movebo on Monday 8th of May 2017 11:50:57 AM
Canuck said
Oct 4, 2016
Ah, that makes sense, now! I kinda just skipped over the "TE", written behind MRI, in your sig. line (I didn't "git it" anyway, the TE sitting there). To me TE (first and foremost) has always been short for "treatment experienced" - so of course it wasn't making much sense to me, I just thought it was some thingy I was not understanding (obviously this was very true!, hee hee), and I did not bother to try to figure it out. I was totally oblivious that they even do TE's by MRI's! I just chose to carry on and ignore that TE bit in your sig. line, forged straight ahead to focus in on the most recent (last) F4 score determination via biopsy. Until now, I had not really noticed nor paid any attention to, nor explored the idea of kPa measurements being done by any other methods, other than via fibroscans!! Never bothered to do the reading, only read up on fibroscans - so I am really glad you explained, now I can learn some more!! I've been googling already and MRI TE's do make VERY pretty pictures! Very interesting too.
I think your doc has a lot of company in thinking that biopsy is still the gold standard. Others argue. Myself, I'll be happy (as long as I am able) to avoid the biopsy needle, and just take good or mediocre guesses via ANY other combination of semi-telling methods!
Thanks for filling us in on how life is, do keep us posted, I will enjoy hearing more. I was and will be real curious about the improvement in your eye.
I like the sound of your walks, how you are feeling comfortable in your skin. Nice, when a cuppa java is all the good medicine you need! C.
movebo said
Oct 4, 2016
Hi Canuck,
well, the RIBA gave me no or little trouble, so I was lucky with that. I am a kind of harmless guy, so the added grumpiness
was bearable, I am told ...
And generally, now turning 59, I do feel better than when I turned 49. Could be the wisdom of age alone, but this is not only
psychological, also the body, so this may be a reduction of extrahepatic stuff I never knew I had. Nice.
My doc does not believe in Fibroscan, and so I never had one. Early on (June 2014) he ordered an MRI TE, essentially wobbeling the body surface above the liver and MRI then tells you how much the liver wobbles in response. And stiffness reduces this wobble.
Well, this resulted in a value of 4.4 kPa, (plus/minus 2 in different places), and they think this translates roughly to F0-2. This is why I thought I can wait a year for Harvoni. No one knows if I was F0-2 then and rapidly went to F4 in a year, or if the correlation is not that good, or maybe the technician had a bad day, and the measurement went wrong. Having gone through that I would recommend to get a (lightly sedated) biopsy if possible, though. Better to know.
My doc is now even more skeptical of these non-invasive ways to measure stiffness, I am afraid.
About regression, well that is the question of course. I drink coffee a lot, and walk many miles, and hope the best.
The eye thing is stable, maybe improving. I will go for another periphery test in November.
Hi JimmyK,
l think I remember a pic you posted, with some substantial Dobsonians near your cabin somewhere in the Texan landscape, and I remember the sky you have there sometimes. There are things we share.
Cheers, Tom
Tig said
Oct 3, 2016
Outstanding, Tom! Big congratulations to you and well done! Enjoy the rewards your hard work, faith and commitment have achieved. Bye, bye Dragon...
Canuck said
Oct 3, 2016
Hi again movebo,
Beauty numbers for your EOT+43!! Very happy for you.
You said you had a biopsy (F4), before. I can't remember if you had fibroscans before, to be able to compare old, to new fibroscans in the future, but it is obvious you have had the correct (really good) outcome, according to all your numbers, and your U/S and your doc! - your liver is loving this permanent holiday! Did your doc happen to "de-grade" you a bit from F4 (numerically) just based on your parameters thus far?
You were so wise to get tested in the first place!
You did this whole thing so well.
I remember I was so surprised you coped so well with the riba added to your harvoni, just some grumpiness you said (haha, that your wife had to point out!) or being more emotional, but virtually, you relayed you did not really have too much trouble with the 12 weeks of riba!
Now, in retrospect, do you glean anything else in how riba may have affected you while taking it?
I was also VERY interested in your field of vision problem and it's spontaneous improvement!! - did you have any more feedback for us on that?
I am so glad all is going well. C.
JimmyK said
Oct 3, 2016
Greetings,
First of all great news on the results! Yours are exactly what we all hope for on this road.
Secondly, I am deeply touched by your words. It is understood not all will believe as I do. However if I can say something that causes one to reflect a bit, then I am grateful to have been a help.
Keep up the great work!
Regards,
JimmyK
movebo said
Oct 3, 2016
Hi All,
long time no post, I am rather busy at work again, after a nice cruise down the
coast of Norway, which messed up my BMI targets pretty good (it is 28 again).
But I still read the forum a lot.
Just got my EOT+43 weeks stuff:
HCV PCR: TND (<15), ALT 17, AST 19, GGT 22, AFP 4, and the ultrasound reports only mild
diffuse echotexture. My Hep doc thinks (at least he tells me) this will resolve.
No so bad for a guy with (biopsy) F4!
Cheers, Tom
PS: I am a rather godless fellow (lapsed catholic), but when JimmyK posted, asking for support for Robert,
I felt the first ave maria in 45 years flowing through me. Good luck!
That's great news, Tom! Your labs are outstanding as well. Thanks for the information on post tx HCC from EASL, will have to watch that presentation. The benefits from curing HCV far outweigh the negatives, imho anyway.
Movebo!
Hey, nice. Lovely sounding descriptions of your US imaging, my goodness, that interpreter must be taking some pleasure in using all those great words.
"Optimistic" ?! you say?, well ... how understated! Them there are ecstatic results, all-round! 20 km last weekend is also a very telling sign BTW, hee hee!
Hey, you and I read the same stuff!
So glad you posted your update - continued congrats!
C.
Hi All,
Just had my 6 month US + bloods, so I thought I post an update and some thoughts.
I am at SVR 75 now, did VL at 48, which was undetected.
US is clear: "No suspicious solid hepatic nodule detected", spleen 12 cm,
"still within normal limits", "no prominent irregular capsular contour of the liver in the
high-resolution surface scan to indicate macronodular cirrhosis pattern".
Blood: ALT = AST = GGT = 20, Platelets = 224, AFP = 3, everything else also in range.
And I feel quite healthy, walked about 20 km last weekend.
So I am optimistic.
For obvious reasons I have followed the "F4 Post DAA HCC" debate with some interest,
and I think there are many who may fear or reject treatment because of that.
I would suggest to google "EASL2017/ComprehensiveReview#1" and watch the discussion/movie
on "HCC Risk Post-SVR - Among Cirrhotic Patients with an HCV SVR, the Risk of De-Novo HCC
Relates to Baseline Factors and Not the Use of DAAs: Results from a Nationwide Cohort".
These guys have solid histories, and to me (no expert) they make a lot of sense. And they have data..
There is talk on hepc boards about Gilead making 60 billion, and what kind of motive such a pot
of gold provides. Well. The number of hepc related liver transplantations declines.
Cheers, Tom
-- Edited by movebo on Monday 8th of May 2017 11:50:57 AM
Ah, that makes sense, now! I kinda just skipped over the "TE", written behind MRI, in your sig. line (I didn't "git it" anyway, the TE sitting there). To me TE (first and foremost) has always been short for "treatment experienced" - so of course it wasn't making much sense to me, I just thought it was some thingy I was not understanding (obviously this was very true!, hee hee), and I did not bother to try to figure it out. I was totally oblivious that they even do TE's by MRI's! I just chose to carry on and ignore that TE bit in your sig. line, forged straight ahead to focus in on the most recent (last) F4 score determination via biopsy. Until now, I had not really noticed nor paid any attention to, nor explored the idea of kPa measurements being done by any other methods, other than via fibroscans!! Never bothered to do the reading, only read up on fibroscans - so I am really glad you explained, now I can learn some more!! I've been googling already and MRI TE's do make VERY pretty pictures! Very interesting too.
I think your doc has a lot of company in thinking that biopsy is still the gold standard. Others argue. Myself, I'll be happy (as long as I am able) to avoid the biopsy needle, and just take good or mediocre guesses via ANY other combination of semi-telling methods!
Thanks for filling us in on how life is, do keep us posted, I will enjoy hearing more. I was and will be real curious about the improvement in your eye.
I like the sound of your walks, how you are feeling comfortable in your skin. Nice, when a cuppa java is all the good medicine you need!
C.
well, the RIBA gave me no or little trouble, so I was lucky with that. I am a kind of harmless guy, so the added grumpiness
was bearable, I am told ...
And generally, now turning 59, I do feel better than when I turned 49. Could be the wisdom of age alone, but this is not only
psychological, also the body, so this may be a reduction of extrahepatic stuff I never knew I had. Nice.
My doc does not believe in Fibroscan, and so I never had one. Early on (June 2014) he ordered an MRI TE, essentially wobbeling the body surface above the liver and MRI then tells you how much the liver wobbles in response. And stiffness reduces this wobble.
Well, this resulted in a value of 4.4 kPa, (plus/minus 2 in different places), and they think this translates roughly to F0-2. This is why I thought I can wait a year for Harvoni. No one knows if I was F0-2 then and rapidly went to F4 in a year, or if the correlation is not that good, or maybe the technician had a bad day, and the measurement went wrong. Having gone through that I would recommend to get a (lightly sedated) biopsy if possible, though. Better to know.
My doc is now even more skeptical of these non-invasive ways to measure stiffness, I am afraid.
About regression, well that is the question of course. I drink coffee a lot, and walk many miles, and hope the best.
The eye thing is stable, maybe improving. I will go for another periphery test in November.
Hi JimmyK,
l think I remember a pic you posted, with some substantial Dobsonians near your cabin somewhere in the Texan landscape, and I remember the sky you have there sometimes. There are things we share.
Cheers, Tom
Outstanding, Tom! Big congratulations to you and well done! Enjoy the rewards your hard work, faith and commitment have achieved. Bye, bye Dragon...
Hi again movebo,
Beauty numbers for your EOT+43!! Very happy for you.
You said you had a biopsy (F4), before. I can't remember if you had fibroscans before, to be able to compare old, to new fibroscans in the future, but it is obvious you have had the correct (really good) outcome, according to all your numbers, and your U/S and your doc! - your liver is loving this permanent holiday! Did your doc happen to "de-grade" you a bit from F4 (numerically) just based on your parameters thus far?
You were so wise to get tested in the first place!
You did this whole thing so well.
I remember I was so surprised you coped so well with the riba added to your harvoni, just some grumpiness you said (haha, that your wife had to point out!) or being more emotional, but virtually, you relayed you did not really have too much trouble with the 12 weeks of riba!
Now, in retrospect, do you glean anything else in how riba may have affected you while taking it?
I was also VERY interested in your field of vision problem and it's spontaneous improvement!! - did you have any more feedback for us on that?
I am so glad all is going well.
C.
Greetings,
First of all great news on the results! Yours are exactly what we all hope for on this road.
Secondly, I am deeply touched by your words. It is understood not all will believe as I do. However if I can say something that causes one to reflect a bit, then I am grateful to have been a help.
Keep up the great work!
Regards,
JimmyK
Hi All,
long time no post, I am rather busy at work again, after a nice cruise down the
coast of Norway, which messed up my BMI targets pretty good (it is 28 again).
But I still read the forum a lot.
Just got my EOT+43 weeks stuff:
HCV PCR: TND (<15), ALT 17, AST 19, GGT 22, AFP 4, and the ultrasound reports only mild
diffuse echotexture. My Hep doc thinks (at least he tells me) this will resolve.
No so bad for a guy with (biopsy) F4!
Cheers, Tom
PS: I am a rather godless fellow (lapsed catholic), but when JimmyK posted, asking for support for Robert,
I felt the first ave maria in 45 years flowing through me. Good luck!