Welcome, Guest |
TOPIC:
'In which LG seeks Redemption & makes new friends' 8 years 1 month ago #12539
| Hi LG Im stoked you had a good MRI experience I sometimes work in MRI with children who need to have their brain scanned and require a general anaesthetic and adults too who for various reasons need to be asleep for the procedure. YES the technology is bloody amazing as its so definitive as a diagnostic tool. It must be reassuring for you to have confirmation that your lifestyle habits have been advantageous for the overall health of not just the liver but you as a whole. Yep now it UND time for you and me, Ive got my next one coming up on the 24th March, when is yours? Edit that I have just got off the phone from my liver nurse and we are going to test VL tomorrow and again on the 24th SVR 24 The following user(s) said Thank You: LondonGirl |
'In which LG seeks Redemption & makes new friends' 8 years 1 month ago #12545
Wow my daughter is a tough cookie reading this thread Since age 9 she's done epilepsy MRI and takes it easy Anyhoo she just rang and is in ER for the second time in four days and yesterday I spent half the day with her seeing her doc Soooo I have to get to the city again even though she said she can tough it out alone She has more than epilepsy she has hashimotos and stuff so I want this resolved her recent issues Just hung up when I was reading this thread all about MRI Take care xxx Ariel Gen 1a Peg/inf/riba 2012(!) stop @ Wk 43 potassium low +issues (rlps week 4 post tx, VL120,000) scnds eg. adenomas. pre sof/led VL 240,000 Fibsc F0 Day 25 <30 Day 32 UND Week 10 UND EOT UND ALT11AST17GGT19 SVR4 UND ALT10 AST16 GGT13 SVR8 UND ALT <9 AST16 GGT15 SVR12 UND ALT14 AST19 GGT12 Bili 5 EOT +18 ALT13 AST20 GGT9 Bili 5 EOT +21 ALT11AST15 Cured SVR12 Dysplasia Adenomas RemvdAug '16 SVR24 UND ALT11AST16 ColonoscopyClear Nov17 LumpectomyClear ‘18 LithotripsyCytoscopyBiopsy 4/18 | |
'In which LG seeks Redemption & makes new friends' 8 years 1 month ago #12547
| All the best for your daughter and you Ariel....... Lives in Bendigo, Victoria No prior treatment Genotype 1b Fibroscan 0 (only showed a bit of a fatty liver) Diagnosed in February 2015 Currently on my last week of treatment taking led/sof Last LFT normal Insomnia the only side effect Undetected at 4 weeks SVR4 - undetected - all bloods good and GP very happy SVR12 bloods to be done at end of April 2016 SVR12 - undetected!!! The following user(s) said Thank You: Ariel |
'In which LG seeks Redemption & makes new friends' 8 years 1 month ago #12550
| Take care Ariel hope your daughter is ok x SVR 24 The following user(s) said Thank You: Ariel |
'In which LG seeks Redemption & makes new friends' 8 years 1 month ago #12555
| Hi Tina, Was just thinking of you The MRI scanner is an amazing thing, but I didn't have a normal MRI, this is part of a trial that will hopefully reduce the need for patients with liver disease to have invasive diagnostics, It's tied up with a brilliant new system for getting precise fibrosis details, liver damage, iron and fat levels and also has a predictive element as to how the liver damage may procede. It could replace the need for many needing to have biopsies and is so far proving itself to be an exciting new option for patients with liver disease. There is also no need for contrast dye. The images produced are in full blown colour portraying the levels of fibrosis in the liver by different colours. Blue / green is mild Dark orange /red is bad and yellow sort of midway. I can't wait to see my report in writing It's about time they did sonething for us liver patients and itt's already in use in that top Oxford hospital for patient benefit. I guess the trials (which are continuing) raise the hope that this new diagnostic could be extended across the UK and indeed the world. I do hope so. It's a much more visual thing for patients too, as with past fibrosis markers, we don"t get to see anything! So I guess, more reassuring that the test is correct. The Dr who invented it is a lovely man fighting our corner as he says liver diagnostics & treatment are 20 years behind other conditions and why he got involved. He's quite young, clever and I could tell 'thinks outside the box' with passion, a bit like Fix HepC - A pioneer. Yes it was reassuring, more so that I didn't have cirrhosis! I was told by the Doc considering I have had HepC for so long, my liver was remarkably in good shape and he said no fat and iron levels pretty good too. Great, but I don't want those nasty little virus attacking it any further Glad your nurse is keeping a good eye on you and everything crossed for the desired result! I was talking to an infectious diseases nurse yesterday at the hospital, he cleared the virus on the Abvie tx not so long ago, He never went UND on tx, EOT 15, then a few weeks post EOT up to 50! then all of a sudden wham - at 12 weeks EOT - UND! Quite an emotional ride for him. This HepC business is just that, such a roller-coaster! Thinking of you Ariel, love also to your daughter, nothing pulls the heart strings more! GT1a Dec14 F2/8.7 VL 900000-2.5M Jan16 Hepcivir-L MonkMed/Redemption Baseline: VL 913575 Alt 76 Platelets low Wk2 VL1157 Alt 23 DET Wk 8 VL 32 Alt19 'In the slow lane' June16 Fibro 5.7 F0/1 LIF 1.5 Wk 11 VL<12 Alt 13 Det/Unq Extending tx 12 wks Mylan Sofo/Dac MonkMed Wk 14 VL <12 Det/Unq Wk 16 VL UNDETECTED Wk 22 + 4 Wks Sunprevir FixHepC Wk 24 UNDETECTED Alt 13 Wk 12 post tx SVR12 Wk 26 SVR24 Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC |
'In which LG seeks Redemption & makes new friends' 8 years 1 month ago #12558
| Wow Im well impressed with the MRI and its use in accessing liver damage and most importantly its a non invasive procedure. My hat is off to the Doctor advocating and proving its value in liver disease management. Do you get a scanned copy of the images too as they would be cool to see. I cant begin to imagine the relief you felt to be told you are not cirrhotic - big weight gone. Now just that UND... My nurse rang me tonight and my Alt at 2 weeks post EOT is down from 14 to 12! so thats reassuring Thanks to yourself and Darbara for posting up those threads from other forums - i had a read of them this morning. Yep is so true about Hep C being a roller-coaster ride and needing a will of iron - such a nice feeling to know we have this forum to help keep us up when we fall down from time to time. xx SVR 24 |
'In which LG seeks Redemption & makes new friends' 8 years 1 month ago #12560
|
Yes, apparently I do - Waiting on report. If I post it, you can't say I don't share everything with you guys ps Great Alt ! GT1a Dec14 F2/8.7 VL 900000-2.5M Jan16 Hepcivir-L MonkMed/Redemption Baseline: VL 913575 Alt 76 Platelets low Wk2 VL1157 Alt 23 DET Wk 8 VL 32 Alt19 'In the slow lane' June16 Fibro 5.7 F0/1 LIF 1.5 Wk 11 VL<12 Alt 13 Det/Unq Extending tx 12 wks Mylan Sofo/Dac MonkMed Wk 14 VL <12 Det/Unq Wk 16 VL UNDETECTED Wk 22 + 4 Wks Sunprevir FixHepC Wk 24 UNDETECTED Alt 13 Wk 12 post tx SVR12 Wk 26 SVR24 Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC |
'In which LG seeks Redemption & makes new friends' 8 years 1 month ago #12731
How are you traveling LG? Xxx Any updates from your side of the globe have you got any news in yet Thinking of you xxx Ariel Gen 1a Peg/inf/riba 2012(!) stop @ Wk 43 potassium low +issues (rlps week 4 post tx, VL120,000) scnds eg. adenomas. pre sof/led VL 240,000 Fibsc F0 Day 25 <30 Day 32 UND Week 10 UND EOT UND ALT11AST17GGT19 SVR4 UND ALT10 AST16 GGT13 SVR8 UND ALT <9 AST16 GGT15 SVR12 UND ALT14 AST19 GGT12 Bili 5 EOT +18 ALT13 AST20 GGT9 Bili 5 EOT +21 ALT11AST15 Cured SVR12 Dysplasia Adenomas RemvdAug '16 SVR24 UND ALT11AST16 ColonoscopyClear Nov17 LumpectomyClear ‘18 LithotripsyCytoscopyBiopsy 4/18 The following user(s) said Thank You: LondonGirl | |
'In which LG seeks Redemption & makes new friends' 8 years 1 month ago #12735
| Hi Ariel, "For whatever reason I am a slow responder". VL 32 at mid week 9. Feeling alot better, but have to extend. All other bloods good. Got MonkMed Dr Debasis & Dr F on it. Thanks for asking LG GT1a Dec14 F2/8.7 VL 900000-2.5M Jan16 Hepcivir-L MonkMed/Redemption Baseline: VL 913575 Alt 76 Platelets low Wk2 VL1157 Alt 23 DET Wk 8 VL 32 Alt19 'In the slow lane' June16 Fibro 5.7 F0/1 LIF 1.5 Wk 11 VL<12 Alt 13 Det/Unq Extending tx 12 wks Mylan Sofo/Dac MonkMed Wk 14 VL <12 Det/Unq Wk 16 VL UNDETECTED Wk 22 + 4 Wks Sunprevir FixHepC Wk 24 UNDETECTED Alt 13 Wk 12 post tx SVR12 Wk 26 SVR24 Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC |
'In which LG seeks Redemption & makes new friends' 8 years 1 month ago #12737
Hi there hun Thanks for posting I'm sure that's the best thing damned nuisance but maybe that bug you had messed things up mid tx and now you have cleared the infection your good to go for round two I'm not going anywhere when I finish my EOT so I will still be supporting you on from the next round. I'm glad you're playing it super safe we just have to do what it takes yeah? Keep posting because we will all be backing you on this news You got a good liver report that's another positive too big relief. Are you adding six or twelve weeks? Xxx You're in good hands that's the best thing too. We are all really the first global group after trials finished so I guess it's going to be a while before any really concrete data is available on tx duration, EOT outcomes etc on a large scale Keep strong xxxxxx Ariel Gen 1a Peg/inf/riba 2012(!) stop @ Wk 43 potassium low +issues (rlps week 4 post tx, VL120,000) scnds eg. adenomas. pre sof/led VL 240,000 Fibsc F0 Day 25 <30 Day 32 UND Week 10 UND EOT UND ALT11AST17GGT19 SVR4 UND ALT10 AST16 GGT13 SVR8 UND ALT <9 AST16 GGT15 SVR12 UND ALT14 AST19 GGT12 Bili 5 EOT +18 ALT13 AST20 GGT9 Bili 5 EOT +21 ALT11AST15 Cured SVR12 Dysplasia Adenomas RemvdAug '16 SVR24 UND ALT11AST16 ColonoscopyClear Nov17 LumpectomyClear ‘18 LithotripsyCytoscopyBiopsy 4/18 | |
'In which LG seeks Redemption & makes new friends' 8 years 1 month ago #12739
|
You ain't kidding - There's a little on treatment fails / re-treatment and options etc, I can't find anything at all on slow responders like me apart from patient experience on US forums. All news in from liver meets seems to be about new drugs and sell sell sell I 'hope' there will be more and more papers from the likes of London's professor Dusheiko and his kind, but I'm not holding my breath and anyway, I don't have time to wait, need to extend now. Thank heavens I did not go NHS - I have support from MonkMed, FixHepC and good HepC friends and the opportunity to extend. Thanks for your support Ariel GT1a Dec14 F2/8.7 VL 900000-2.5M Jan16 Hepcivir-L MonkMed/Redemption Baseline: VL 913575 Alt 76 Platelets low Wk2 VL1157 Alt 23 DET Wk 8 VL 32 Alt19 'In the slow lane' June16 Fibro 5.7 F0/1 LIF 1.5 Wk 11 VL<12 Alt 13 Det/Unq Extending tx 12 wks Mylan Sofo/Dac MonkMed Wk 14 VL <12 Det/Unq Wk 16 VL UNDETECTED Wk 22 + 4 Wks Sunprevir FixHepC Wk 24 UNDETECTED Alt 13 Wk 12 post tx SVR12 Wk 26 SVR24 Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC |
'In which LG seeks Redemption & makes new friends' 8 years 1 month ago #12741
Everything Arial said!! And don't worry, MM & FHC will sort it. G3a since '78 - Dx '12 - F4 (2xHCC) 24wk Tx - PEG/Riba/Dac 2013 relapsed 24wk Tx - Generic Sof/Dac/Riba 2015/16 relapsed 16wk Tx - 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof SVR7 - 22/06/17 UND SRV12 - 27/07/17 UND SVR24 - 26/10/17 UND | |
'In which LG seeks Redemption & makes new friends' 8 years 1 month ago #12746
Ah LG the eminent Geoff Dusheiko yes I had a referral to see him when I was considering a purchase through Alcura around fifteen months ago ..... but fortunately this marvellous site came up and my mortgage didn't wind up groaning even more under a trip to London and a 45 k pounds price! No price for health I say. But sometimes it is just too ridiculous and that option was beyond me for sure! What a coincidence! I hear and read excellent things about Geoff. I was referred by my Sydney chap who wound up writing my script here, as I couldn't find anyone in Victoria to write one. I'm here now the rest is history! I was trying to find ledispivir in India before that too but couldn't I could only find Sofosbuvir so couldn't fly there and save my neck. Gawd we have landed in the best place that's right here. I must say I really exhausted so many leads due to cost prohibitive and just being led up the garden path then bam this miracle happens here! I'm glad you're backing up your tx with an extension its super smart choice making I would do it in a heartbeat if any sneaky mutants from old tx pop up instead of SVR I already have a plan of attack. It's all about the cure here and we are just so lucky so very lucky. Xxxx Ariel Gen 1a Peg/inf/riba 2012(!) stop @ Wk 43 potassium low +issues (rlps week 4 post tx, VL120,000) scnds eg. adenomas. pre sof/led VL 240,000 Fibsc F0 Day 25 <30 Day 32 UND Week 10 UND EOT UND ALT11AST17GGT19 SVR4 UND ALT10 AST16 GGT13 SVR8 UND ALT <9 AST16 GGT15 SVR12 UND ALT14 AST19 GGT12 Bili 5 EOT +18 ALT13 AST20 GGT9 Bili 5 EOT +21 ALT11AST15 Cured SVR12 Dysplasia Adenomas RemvdAug '16 SVR24 UND ALT11AST16 ColonoscopyClear Nov17 LumpectomyClear ‘18 LithotripsyCytoscopyBiopsy 4/18 | |
'In which LG seeks Redemption & makes new friends' 8 years 1 month ago #12755
| HI Ariel, yes, Geoff Dusheiko was my wonderful old consultant. Good old fashioned, hands on Dr who checked BP, heart rate, reflexes, eyes, hands, all bloods in detail (scribbling mathematical notes and equations etc) He was the head of the Royal Free for years and did awesome work - Loved him. Unfortunately, he wanted to semi retire and do part time, although still writing important medical papers on liver disease etc and lecture, speak at conferences etc - but the hospital didn't want to pay out to keep such a knowledgeable prof on (from what I can gather) - The nurses told me they were all in tears when he left. He answered my emails personally after he left and recommended I get an USound scan when I had a strange heart-beat thing going on center abdomen just below ribs and 'push for treatment'. He was replaced without warning by the blythe (to use dt's perfect word) young Dr who totally upset me and refused to listen to anything, just lecture me on how there was no hope of tx in the near future and no more diagnostics and left me very frustrated and upset after our 'consultation' - So I changed hospitals as I had chosen that hospital because of the Prof being there. The lovely Prof Dusheiko emailed me and said how sorry he was that he wouldn't be able to see me . He has written some excellent patient-centered articles which I have enjoyed over the time since being diagnosed. I believe he may be working PT at the other top London liver hospital Kings, but a not up to date re that currently. A great man and the Royal Free will not be the same without him. LG xx GT1a Dec14 F2/8.7 VL 900000-2.5M Jan16 Hepcivir-L MonkMed/Redemption Baseline: VL 913575 Alt 76 Platelets low Wk2 VL1157 Alt 23 DET Wk 8 VL 32 Alt19 'In the slow lane' June16 Fibro 5.7 F0/1 LIF 1.5 Wk 11 VL<12 Alt 13 Det/Unq Extending tx 12 wks Mylan Sofo/Dac MonkMed Wk 14 VL <12 Det/Unq Wk 16 VL UNDETECTED Wk 22 + 4 Wks Sunprevir FixHepC Wk 24 UNDETECTED Alt 13 Wk 12 post tx SVR12 Wk 26 SVR24 Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC The following user(s) said Thank You: Ariel |
'In which LG seeks Redemption & makes new friends' 8 years 1 month ago #12771
So pleased to hear about the great news re your cirrhosis, LG, woohoo! Definitely a great weight off your mind, that is awesome Sounds like you are absolutely heading in the right direction now too Tina - anything downward on your VL is promising. Onward from here, have everything crossed for you GT1a since 1988, diagnosed 1990 F0, tx naive VL 262,000 ALT 40 AST 26 GGT 13 Fibroscan 04/12/15 - 2.9 Started Mesochem sof/dac 12 weeks 01/01/2016 11/02/2016 - 6 weeks UNDETECTED AST 26 ALT 26 The following user(s) said Thank You: LondonGirl, Tina-Hill-facebook | |
Time to create page: 0.091 seconds