eew.eew. all that DOES sound really good! Thanks for such a thorough report, really helps in giving everyone post-treatment perspective.
I am a big believer in good follow-up (as much as a person can muster up from their docs), it's good to know what is happening and see the improvements - I'm very glad you have been getting quite good follow-up, and for you, especially the recent (repeated) U/S's and the nice addition of your second fibroscan. How are your RBC's/platelets?
You should be feeling good about that U/S too, despite spleen size, perhaps we will never know what your spleen size WAS (before HCV) to be able to compare back to, as long as all your organs are now functioning well, and doing so "freely" without their work being complicated and compromized by the havoc and interferences HCV creates!
Your followup outcome(s) do sound VERY good, I too am optimistic that you will continue to see improvements. But GREAT you have "felt"/demonstrated so many "tangible" improvements! Those were such a burden, lifted, just to be able to walk properly again! I too had an intractable pain in my side (RLQ chest, but in the side and back, between chest and waist, near spine) that I packed around for many, many decades, it grew and became insurrmountable, i gave up in trying to figure it out, nothing relieved it, lived with it, always there just wearing me down, convinced myself I was just unlucky and had some musculo-skeletal thing that I was just going to have to put up with for the rest of my life!, NO ONE was more surprised than me!, when it just simply disappeared - almost like poof, over a short period of time after HCV cure! Doc said "no" he thought it not related to HCV, but I KNOW he is wrong, that it WAS to do with HCV. Curious pedal edema too (that one he accepted) has all but vanished - what a relief when you can see things/feel things behave nicely!! Now, if I could just lose the tinnitus and double vision! - irritating! Me too (for some reason) still have some head, fatigue, strength issues, and some other bothersome things, but nothing like I was with HCV! I thank Gilead every day. Celebrate in all you have relayed - these things are big indeed.
hm, ya, I am really sorry you had to go through that first treatment, and then, had to do the riba next - but whatever it took - finally - Good riddance HCV! C.
Midnight said
Nov 28, 2017
Thanks Guys, I am indeed very stoked!
I'm from the UK and following my SVR and a change is address they was some delay in being seen again by a consultant. So I have only had two fibroscans the one prior to my failed Telap treatment and the one yesterday. I anticipate that I likely wont have another one for another year but that's cool as I seem to be moving in the right direction.
I have had a number of ultrasound scans over the years with the most recent one in early September. That one showed a very normal sized liver but with a faint wavy edge. The radiologist showed me this on the screen. It was very slight but visible. My spleen disappointingly remained slightly enlarged but hopefully that will improve in time. It doesn't feel uncomfortable anymore though.
In terms of symptoms prior to SVR I suffered from fatigue, aching knees and liver and brain fog.
Following SVR and about a year later my aching knees and liver had gone completely. The knee issue was a real blessing as this had been really bad and would affect me when out shopping. I can walk about all day now without any pain.
The fatigue is much better but I still get tired if I drive to long.
The brain fog has been slow to go but is better.
My memory is still a struggle but slightly better. This seemed to get much worse after the failed Telap and affected my confidence at work.
All in all, I feel like I've had a right result :)
Canuck said
Nov 28, 2017
A-GREE!! Wonderful news. I hear ya (about the old bad-news days), things definitely started going your way when you got the harvoni/riba to cure you! You deserve every morsel of good news, after all that prior work and turmoil. A really welcome bit of news to savour.
14.2 down to 9.2 is no error, even tho fibroscans are just really good guessing. If the dif was closer, then fibroscan results can be more easily debated and accepted as "probably" being an accurate reading, but in your case, where there is SUCH a spread, I lean to it being quite an accurate portrayal, very much so! 'Tis very good news, and this much spread (this much of a large drop) is very SIGNIFICANT, and lends itself to being more accurate. 5 points is HUGE!! and probably right. (Ya me too, would i EVER be pleased with a reading like THAT)!
Now, had it only been down (say) ... one point, then I might have kept wondering how accurately representative a one point drop was, at least until another (the next) scan was repeated and it said the same thing - with a second and third scan all (repeatedly) pointing me in the same general direction, that then would have convinced me that indeed my one point drop was probably accurate.
But your 5 point drop is (no doubt) huge good news.
So, tell us if you will, you had the 14.2 (prior to your first treatment), and now this one (about 4 years later) near 2 years after your cure with the second harv/riba treatment - are these 2 fibroscans the only ones you have had done??
Also, I was just wondering what kinds of imagings you have had done (before, during or after) your treatments, that data too would be telling (to see the before and after improvements) given your hx of enlarged spleen - do they offer you fibroscan/imagings/follow-up of any kind on a regular (periodic) basis now? I hope they do offer these to you, as it is SO reassuring and bouying to "see" the improving results!
Do you hail from the US??
Being in Canada, I was very lucky to get my Gilead drug trial, and when that concluded, I was lucky again to be invited into a continuing cirrhotic follow-up study (I go for these study follow-up visits every 6 months) for a 5 years period. I was also very lucky to see my (prior)12.6 fibrosis score dropping to now "normal"!! Amoung other things, the 5 yr follow-up study provides me a fibroscan once per year and an U/S or other imaging (perhaps) once per year. I very much doubt, that had I done a standard treatment via the "regular" (non-trial) system here, I would be receiving as much good "following" as I garner now. I really appreciate being able to "see" my large improvements since my cure.
You must be feeling quite stoked right now, with good news like that. Enjoy it. I'm glad you shared that!
Please do share anything you care to, we would be all ears! Labs, Fibro-Tests, U/S's would, of course, all be riveting info.
How are you feeling, all in all? C.
Tig said
Nov 27, 2017
That's very good news! We have been witnessing improvements in many of our members. The professional articles I've kept up with indicate these promising statistics, too. Very often the inflammation secondary to chronic Hepatitis, B or C, once resolved, will result in good F score reductions. The cessation of continued viral attack on the liver itself will allow it to begin the repair process. The lower F score going in often results in faster improvements following successful treatment. Congrats! You're doing exactly what we like to see. Keep it up!
Woot!
Midnight said
Nov 27, 2017
Just thought I'd share my encouraging news that 2 years on from successful treatment I had a fibroscan today...
And I am now 9.2 down from 14.2 4 years ago.
Not sure what to read into this but its much better than the news of old when every trip to the hospital would end in bad news!
-- Edited by Midnight on Monday 27th of November 2017 03:31:21 PM
eew.eew. all that DOES sound really good! Thanks for such a thorough report, really helps in giving everyone post-treatment perspective.
I am a big believer in good follow-up (as much as a person can muster up from their docs), it's good to know what is happening and see the improvements - I'm very glad you have been getting quite good follow-up, and for you, especially the recent (repeated) U/S's and the nice addition of your second fibroscan. How are your RBC's/platelets?
You should be feeling good about that U/S too, despite spleen size, perhaps we will never know what your spleen size WAS (before HCV) to be able to compare back to, as long as all your organs are now functioning well, and doing so "freely" without their work being complicated and compromized by the havoc and interferences HCV creates!
Your followup outcome(s) do sound VERY good, I too am optimistic that you will continue to see improvements. But GREAT you have "felt"/demonstrated so many "tangible" improvements! Those were such a burden, lifted, just to be able to walk properly again! I too had an intractable pain in my side (RLQ chest, but in the side and back, between chest and waist, near spine) that I packed around for many, many decades, it grew and became insurrmountable, i gave up in trying to figure it out, nothing relieved it, lived with it, always there just wearing me down, convinced myself I was just unlucky and had some musculo-skeletal thing that I was just going to have to put up with for the rest of my life!, NO ONE was more surprised than me!, when it just simply disappeared - almost like poof, over a short period of time after HCV cure! Doc said "no" he thought it not related to HCV, but I KNOW he is wrong, that it WAS to do with HCV. Curious pedal edema too (that one he accepted) has all but vanished - what a relief when you can see things/feel things behave nicely!! Now, if I could just lose the tinnitus and double vision! - irritating! Me too (for some reason) still have some head, fatigue, strength issues, and some other bothersome things, but nothing like I was with HCV! I thank Gilead every day. Celebrate in all you have relayed - these things are big indeed.
hm, ya, I am really sorry you had to go through that first treatment, and then, had to do the riba next - but whatever it took - finally - Good riddance HCV!
C.
Thanks Guys, I am indeed very stoked!
I'm from the UK and following my SVR and a change is address they was some delay in being seen again by a consultant. So I have only had two fibroscans the one prior to my failed Telap treatment and the one yesterday. I anticipate that I likely wont have another one for another year but that's cool as I seem to be moving in the right direction.
I have had a number of ultrasound scans over the years with the most recent one in early September. That one showed a very normal sized liver but with a faint wavy edge. The radiologist showed me this on the screen. It was very slight but visible. My spleen disappointingly remained slightly enlarged but hopefully that will improve in time. It doesn't feel uncomfortable anymore though.
In terms of symptoms prior to SVR I suffered from fatigue, aching knees and liver and brain fog.
Following SVR and about a year later my aching knees and liver had gone completely. The knee issue was a real blessing as this had been really bad and would affect me when out shopping. I can walk about all day now without any pain.
The fatigue is much better but I still get tired if I drive to long.
The brain fog has been slow to go but is better.
My memory is still a struggle but slightly better. This seemed to get much worse after the failed Telap and affected my confidence at work.
All in all, I feel like I've had a right result :)
A-GREE!! Wonderful news. I hear ya (about the old bad-news days), things definitely started going your way when you got the harvoni/riba to cure you! You deserve every morsel of good news, after all that prior work and turmoil. A really welcome bit of news to savour.
14.2 down to 9.2 is no error, even tho fibroscans are just really good guessing. If the dif was closer, then fibroscan results can be more easily debated and accepted as "probably" being an accurate reading, but in your case, where there is SUCH a spread, I lean to it being quite an accurate portrayal, very much so! 'Tis very good news, and this much spread (this much of a large drop) is very SIGNIFICANT, and lends itself to being more accurate. 5 points is HUGE!!
and probably right. (Ya me too, would i EVER be pleased with a reading like THAT)!
Now, had it only been down (say) ... one point, then I might have kept wondering how accurately representative a one point drop was, at least until another (the next) scan was repeated and it said the same thing - with a second and third scan all (repeatedly) pointing me in the same general direction, that then would have convinced me that indeed my one point drop was probably accurate.
But your 5 point drop is (no doubt) huge good news.
So, tell us if you will, you had the 14.2 (prior to your first treatment), and now this one (about 4 years later) near 2 years after your cure with the second harv/riba treatment - are these 2 fibroscans the only ones you have had done??
Also, I was just wondering what kinds of imagings you have had done (before, during or after) your treatments, that data too would be telling (to see the before and after improvements) given your hx of enlarged spleen - do they offer you fibroscan/imagings/follow-up of any kind on a regular (periodic) basis now? I hope they do offer these to you, as it is SO reassuring and bouying to "see" the improving results!
Do you hail from the US??
Being in Canada, I was very lucky to get my Gilead drug trial, and when that concluded, I was lucky again to be invited into a continuing cirrhotic follow-up study (I go for these study follow-up visits every 6 months) for a 5 years period. I was also very lucky to see my (prior)12.6 fibrosis score dropping to now "normal"!! Amoung other things, the 5 yr follow-up study provides me a fibroscan once per year and an U/S or other imaging (perhaps) once per year. I very much doubt, that had I done a standard treatment via the "regular" (non-trial) system here, I would be receiving as much good "following" as I garner now. I really appreciate being able to "see" my large improvements since my cure.
You must be feeling quite stoked right now, with good news like that. Enjoy it. I'm glad you shared that!
Please do share anything you care to, we would be all ears! Labs, Fibro-Tests, U/S's would, of course, all be riveting info.
How are you feeling, all in all? C.
That's very good news! We have been witnessing improvements in many of our members. The professional articles I've kept up with indicate these promising statistics, too. Very often the inflammation secondary to chronic Hepatitis, B or C, once resolved, will result in good F score reductions. The cessation of continued viral attack on the liver itself will allow it to begin the repair process. The lower F score going in often results in faster improvements following successful treatment. Congrats! You're doing exactly what we like to see. Keep it up!
Woot!
Just thought I'd share my encouraging news that 2 years on from successful treatment I had a fibroscan today...
And I am now 9.2 down from 14.2 4 years ago.
Not sure what to read into this but its much better than the news of old when every trip to the hospital would end in bad news!
-- Edited by Midnight on Monday 27th of November 2017 03:31:21 PM