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Liver Conference Barcelona 2016 - 8 years 2 weeks ago #14517
Dear Mike, No we did not travel. Maybe next year. Dr Debasis should have travelled but he is very busy with REDEMPTION consultations and rest of us are busy ensuring shippings go through. We are continuously on phone trying to clear packages. Due to heightened security customs clearances worldwide is taking longer than usual. Warm Regards Tim MonkMed Care Team | |
Liver Conference Barcelona 2016 - 8 years 2 weeks ago #14518
Hi Mike, the message I seem to be getting from Ronald Koretz, MD about SVR is that Peg interferon may have done more harm than good?? Otherwise he seems to raise some good points about how this virus will do its best to survive. Me being F3 in 2012, now probably F4, I have to rely on a common sense view that largely getting rid of the virus and therefore keeping my LFT's etc under control gives: 1. a small chance that liver and recurrence of a HCC wise, things might get better 2. an assumption that it may slow down the above getting worse. 3. a better quality of life on the way through. The talk also seems to re-inforce the idea to get treated early before damage occurs. Another thought for me being an early non coper with Interferon is that I may have been lucky - Ronald Koretz, MD's early part of the talk did not seem to sing its praises too well and my partner at that time comparing it to giving a dog arsenic to cure heart worms come to mind. yours with thanks for fishing these threads out for us to read. Jeff. GT3a 1990 Failed Inter 1998, comb in 2000. HCC 2012 Started 24/52 Sof/Dac 27th October 2015. 1. Bloods 2 October 2015: AST - 165 (20-40), ALT - 265 (5-40), GGT 189 (5-50) 2, Bloods 20 November 2015: ALT etc normal; VL 19 3. Bloods 8 January 2016: AST - 40, ALT - 59, GGT 48 VL RNA UND 4. EOT 12 April 2016 - blood tests: all is well, CT scan: okay 5. AFP 11 June 2016: 4 ref< 11 6. VL July 2016: DET 7. Oct16 start treat - June17 UND 8. Jun 18, lfts okay, platelets a bit low. | |
Liver Conference Barcelona 2016 - 8 years 2 weeks ago #14520
Jeff thankyou for agreeing that Interferon did more harm than good it caused so many cell changes in me and many other serious sustained injuries such as audiometrically assessed higher pitch severe hearing loss, kidney damage including stones requiring surgery etc I'm hearing you on this. I was perfectly well before some fool put me on interferon. VL 420,000 no other tests done, I had no knowledge anyway of anything and got screwed. I'm F0 btw. They didn't even check until after. Thanks Mike for the conference updates I only hope they NEVER use peginf on ANYONE ever again These new meds are easy Plus they actually work. Ariel, who is awaiting her 4 weeks post EOT bloods 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 | |
Liver Conference Barcelona 2016 - 8 years 2 weeks ago #14521
Well Tim, Someone has to mind the store, I suppose, and it couldn't be left in better hands... I feel very, very fortunate that interferon was never an option for me. My disease was diagnosed right after Sovaldi and Olysio were first being prescribed "off-label". I assume I would have gone for the interferon tx if I had been diagnosed, say, 10 years earlier. I will never truly know. My heart and soul go out to those brave, desperate people who went through that hell, only to be unable to tolerate that poison, relapse and/or suffer permanent physical and psychological damage as a result. It is one reason I am doing what I do now. I am cured. The problem is not. I don't plan to stop until that situation is resolved. The senseless restrictions on these new treatments, based on obscene pricing, is simply criminal. It shames the whole concept of America and what she used to stand for. M This email address is being protected from spambots. You need JavaScript enabled to view it. forums.delphiforums.com/generichcvtx G 1a F-1 Started tx 10/23/15 (Meso sof & led) ALT 48 AST 28 v/l 1.6 mil 11/17/15 4 wk lab ALT 17 AST 16 <15 11/18/15 Started Harvoni 12/16/15 8 wk lab ALT: 15 AST: 13 V/l UND 1/14/16 Fin. Tx 7/07/16 UND SVR 24 | |
Liver Conference Barcelona 2016 - 8 years 2 weeks ago #14523
| I could not agree more Mike. But I think in America we have been set up to be abused by the profiteers. Generic drug prices are skyrocketing. Companies like Gilead are buying other companies, just so they can jack up the prices of medications. It's so sad, our once great nation is reduced to finance companies extracting profits by abusing us. Globalization is the culprit. I will never understand allowing companies to manufacture in China and import duty free to USA. All our companies are moving operations overseas. In the end, we'll all be put out of work. The most bizarre thing to me was those two senators who spoke against Gilead, and criticized their pricing. It was all bluster! I mean what was the point, if you aren't going to try and do something? They did it to get votes...sounds great, but they did nothing! ASSHOLES!!! Gt 1a, F0, VL 6.5 million, AST 59, ALT 62 Started Twinvir 1/15/16 6 wk. labs VL UND, AST 27, ALT 20 EOT labs VL UND, AST 23, ALT 19 SVR 16, VL UND, AST 28, ALT 17 SVR 24 , VL UND, 10/8/16 SVR 125, VL UND, 9/22/18 SVR 230, VL UND, 10/3/20 |
Liver Conference Barcelona 2016 - 8 years 2 weeks ago #14524
Politics- It provides job security for liars, cheats and ego maniacs. I don't think they could find work elsewhere. M This email address is being protected from spambots. You need JavaScript enabled to view it. forums.delphiforums.com/generichcvtx G 1a F-1 Started tx 10/23/15 (Meso sof & led) ALT 48 AST 28 v/l 1.6 mil 11/17/15 4 wk lab ALT 17 AST 16 <15 11/18/15 Started Harvoni 12/16/15 8 wk lab ALT: 15 AST: 13 V/l UND 1/14/16 Fin. Tx 7/07/16 UND SVR 24 | |
Liver Conference Barcelona 2016 - 8 years 2 weeks ago #14528
Genotype 1a Diagnosed in 2004, had HCV for all my adult life. Until 2016!!!! Harvoni treatment, started 19 March 2016 4 week results Bilirubin 12 down from 14 pre treatment, Gamma 25 down from 52, ALT 19 down from 63, AST 19 down from 47, VL <15 down from a lazy 6 million or so EOT Results Bilirubin 10, GGT 18, ALT 19, AST 21, VL UND 12 Weeks post EOT Bilirubin 11, GGT 16, ALT 22, AST 20, VL UND Cured baby The following user(s) said Thank You: mgalbrai | |
Liver Conference Barcelona 2016 - 8 years 2 weeks ago #14532
Hi Jeff, Thanks for highlighting Ronald Koretz' article. I had previously dismissed it based on the blurb and first few seconds of the video but your comments made me return to it. He is obviously an outlier of the HCV field in many ways but that is not necessarily a bad thing if it encourages others to review their positions and actions. Personally I disagree with what appears to be his main contention; that because there is not a complete alleviation of all progression of liver disease in all patients after SVR then it is not a cure. I get his argument that Interferon+/-Ribavirin was not always beneficial and has ongoing problems for many patients (hah, I'm a walking argument for that proposition) but I believe that was well known but certainly not universally acknowledged in the Hepatology community for a long time. Interferon was always seen as less than benign in other fields were it was used too but was usually the only option available at the time. However, for him to extraplolate that to the current use of DAAs is a big leap based on the evidence so far. I think that while it is early days for DAA treatment, the benefits we are seeing accrue for the many outweight the possibility that for a few the outcome won't change. As he would ask of others, where is his evidence to support his current position? Having said that I do agree with his points about evidence based medicine rather than just marketing driven and that does mean long term follow ups. That is how we learn and progress science/medicine. In the meantime I agree with your three points of benefit, though I suspect you understate the first. The evidence seems to be building that while it doesn't completely remove the risks there is a significant risk reduction there. The third point is the real winner though! Edit: beachs, good point about his hymn sheet. 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 | |
Liver Conference Barcelona 2016 - 8 years 2 weeks ago #14537
I suffered every dose on interferon, but it is the reason I am alive so I am grateful I got it when I did. the word interferon does curdle me somewhat, but here I am. Its not that it should never have been used in the past but it shouldn't be now. Genotype 3 30 years, 2x treatment interferon/ribavirin non responder. Cirrhosis 17 years. Fibroscan, decompensating, 40 down to 22 by 29/3/16- now down to 6.5, normal, no cirrhosis. Started Buyers Club Sof/Dac 14 Nov 15. SVR 12 29/0716 | |
Liver Conference Barcelona 2016 - 8 years 2 weeks ago #14548
| Some of us take longer Hazel, but I didn't have to go through Interferon - Thanks to Greg J, Dr F & MonkMed. So glad to see your UND there on your profile Still waiting for mine, (delays at lab this week - annoyingly!). UK medics consider my <12 'job done' - We shall see. My very best wishes to you. Stay well. lg (edit) Dear Tim, I am not surprised you & Dr Debasis are so busy You both take such an interest in your patients and speak at length with every one of us who have concerns. I want to write a BIG public thank-you to you both pps : Here's the official Redemption Trials link again for anyone Tweeting in support of Dr Freeman today #ILC2016 : www.clinicaltrials.gov/ct2/show/NCT02657...rm=redemption&rank=1 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 |
Liver Conference Barcelona 2016 - 8 years 2 weeks ago #14549
mgalbrai, thanks for sharing links. If i correctly understand, the problem, mentioned by Dr. Koretz, is that hcv treatment, from point of view of "evidence-based medicine", really, is a bit experimental treatment, like clinical trials... SVR is "unvalidated surrogate" and we cannot exclude that, in future, for example, new much more sensitive tests may be developed and all people with SVR may become "HCV-carriers", detected by those very sensitive tests... There is another text about similar issues - www.openhealthnews.com/story/2015-01-18/...is-c-drug-treatments
Possibly, it may have some consequences... For example, if we will make a strategy "to treat everyone hcv-infected as soon as possible" - what does it mean in terms of "evidence-based medicine"? Does it mean "to involve everyone of hcv-infected in a some sort of large uncontrolled "clinical trial"? P.S. About tolerability of treatment - i know one guy, who tolerated high doses of interferon without significant problems, but, surprisingly, he did not tolerated several months of sofosbuvir. Probably infected in 1977 2005 - diagnosed with HCV 1b, compensated F4, 15 mln viral load, ALT 320 2005-2006 - PegIFN/rib 48 weeks treatment, relapse 2016 - compensated F4, MELD 8-9, ALT 100-160 2018 - compensated F4, MELD 8, ALT 91 The following user(s) said Thank You: mgalbrai | |
Liver Conference Barcelona 2016 - 8 years 2 weeks ago #14550
| Hi Serg, I see this as the point being made possibly?
What treatment helped your difficult to treat friend reach SVR in the end? I agree there is much more detailed research to be done, I guess this just the beginning. btw - Portugal treated everyone with HepC and have reported 96% SVR at ILC2016 I believe. So you could say they did a massive trial! 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 |
Liver Conference Barcelona 2016 - 8 years 2 weeks ago #14551
Hi LondonGirl, yes, i agree. He used such schema: 1-7 weeks - sof+dac 8-9 weeks - sof+dac+simeprevir 10-24 weeks - dac+simeprevir+ribavirin Probably infected in 1977 2005 - diagnosed with HCV 1b, compensated F4, 15 mln viral load, ALT 320 2005-2006 - PegIFN/rib 48 weeks treatment, relapse 2016 - compensated F4, MELD 8-9, ALT 100-160 2018 - compensated F4, MELD 8, ALT 91 The following user(s) said Thank You: tweakmax, LondonGirl | |
Liver Conference Barcelona 2016 - 8 years 2 weeks ago #14552
Hi Serg, Well yes, apparently Roy M. Poses MD has those beliefs. Again I'm unable to find any evidence provided by him to back them up. Maybe a cautionary canary in the mine? Possibly but there don't appear to be large numbers of other medical professionals taking a lot of notice of his song.
Hmm, so most patients who don't have the three HCV related complications he mentions will get no benefit from treatment because their complications aren't severe enough? Maybe he has "evidence based medicine" that shows that F3 patients lead a perfectly normal, active, healthy life with no ill effects? Perhaps he has been provided with enough "evidence based medicine" to prove to his satisfaction that no extrahepatitic manifestations of any kind occur? For the rest of his arguments all I can do is thank him and tell him I will take his caution under advisement. No doubt I and most of the rest of the world will get on with the great experiment of living. By doing so and taking what appears to be the best option available currently we will gradually build up the "large scale trial evidence" he apparently requires before he makes decisions. Of course this may take a few decades but personally I don't have time to wait. 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 | |
Liver Conference Barcelona 2016 - 8 years 2 weeks ago #14556
| From Twitter : Get ON that soap-box Dr F ! oh well that didn't work ! will try again in a bit. (tried to add a cool photo while traveling but it didn't work). 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 |