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Fitz starts REDEMPTION 3 Trial 7 years 9 months ago #19612
Well said, Fitz, love your work. From what I have learned, your week 4 results are pretty standard for GT1a. That doc can play her silly games, they won't impact your medical outcomes. Thanks again Dr James for assuming we are smart enough to understand the information you so readily provide to us. Knowledge is power. 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 | |
Fitz starts REDEMPTION 3 Trial 7 years 9 months ago #19614
Hi Fitz They are all the same, high and mighty. They have never made so much money in their lives until the HCV made them rich, famous and inconsiderate. If you don't remember my GI said the same thing but relented in the end. I must say I can do this without them but if he wants to come along while I fight dragon, I will let him. That being said he will not dictate to me as he tried to the last time, as you and I spoke about it. Yes I am a little miffed at these inconsiderate jack-asses whom only made a name for themselves at our expense. How dare they say they'll take you off the list! However, you did the right thing in rolling with it, and taking your actions out of sight from them. Good job and DO NOT WORRY, you've got this. Contracted HCV 1980's Geno Type 1a F3 ( doc says once treated I'll be F2 maybe F1) Meds shipped 6/17/2016 arrived early 7/2016 Viral count - 3,471,080 4 week quantitative bloods: August 17, 2016. I have been diagnosed as <15 (told undetected) 8 week quantitative bloods: September 14th. I have been diagnosed as <15 (told undetected) 11 week PCR RNA Qualitative bloods: September 26th 2016 - Undetected December 19th 2016: Cured! Viral count: zero!!! 2018 viral count: still zero! Cured! | |
Fitz starts REDEMPTION 3 Trial 7 years 9 months ago #19615
I must say I have not struck that attitude recently and the staff at the RPA liver clinic are friendly and helpful and treat you like a human being. I only struck a shitty attitude from that silly red headed bint who got offended back in 2004 when I said thanks but no thanks to interferon. They were flat out when the DAAs were first available on the PBS (pharmaceutical benefits scheme) but around about now their job satisfaction levels would be pretty high 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 | |
Fitz starts REDEMPTION 3 Trial 7 years 9 months ago #19616
Yes I agree it is not the attitude to take if at all possible and never do it in front of them. My GI is like that, but has now decided to do all the blood work and monitoring of the generics. It is always the norm, we catch more bee's with honey than vinegar!! Sorry if I offended anyone with my post. Contracted HCV 1980's Geno Type 1a F3 ( doc says once treated I'll be F2 maybe F1) Meds shipped 6/17/2016 arrived early 7/2016 Viral count - 3,471,080 4 week quantitative bloods: August 17, 2016. I have been diagnosed as <15 (told undetected) 8 week quantitative bloods: September 14th. I have been diagnosed as <15 (told undetected) 11 week PCR RNA Qualitative bloods: September 26th 2016 - Undetected December 19th 2016: Cured! Viral count: zero!!! 2018 viral count: still zero! Cured! | |
Fitz starts REDEMPTION 3 Trial 7 years 9 months ago #19617
Hi Fitz, I hope you don't mind changing what you wrote - I think it would have changed what followed. Like HCV, forgetting we are people is a modern day epidemic too, I think. Hope the virons fall into line quickly for you. 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. | |
Fitz starts REDEMPTION 3 Trial 7 years 9 months ago #19618
In her defense, I will say that outside of the "I'll just take you off treatment" statement, it was otherwise a very positive appointment. She is monitoring treatment, and I sincerely appreciate the work she is doing in that respect. She's human - and perhaps inwardly regretted saying that immediately - I don't know. She may be sticking her neck out a bit, and reluctant to rock the boat by ordering tests outside of the formulary schedules. Still the power play was completely unnecessary, and if it happens again she's fired on the spot. Failed Interferon 96', G1a, VL = 9 - 5.5 Million, F3/A3, AST 111, ALT 190, Generic DAA treatment Sof/Led (Mylan - India MYHEP LVIR) - 8 June, 2016 2 Week Results 20 June, 2016 AST 19, ALT 32 4 Week Results 06 July, 2016 AST 22, ALT 30, VL = 35 6 Week Results 20, July 2016 VL only = HCV RNA Detected, Non-Quantifiable <15 8 Week Results 04 August 2016, Labs, LFTs Normal, VL = UND 12 Week Results 31 August, 2016 LFTs Normal, VL = UND EOT + 4 Weeks, LFTs Normal, VL = UND, "SVR4" SVR12, 21 Nov 2016. CURED!!! | |
Fitz starts REDEMPTION 3 Trial 7 years 9 months ago #19619
Hi Fitz, You were there so will have a better idea of the undertones of the discussion but your GI's comment to "take you off treatment" if you do not reach particular milestones sounds more like lack of knowledge of the current DAA treatments. With the old interferon type treatments that was the process followed but these days the recommendation generally seems to be to review and consider whether to extend. So if her speciality isn't hepatology, perhaps ignorance rather than arrogance? Edit: you posted while I was making coffee. 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 | |
Fitz starts REDEMPTION 3 Trial 7 years 9 months ago #19620
| Hi Fitz, I previously read you say it took a year to see a GI specialist. So I understand if you can't easily change Doctor's. If you can change easily, I would. My understanding is you have your meds in hand. How exactly would she stop you from taking them? This woman is very arrogant. A GI specialist should know that 4 week tests of VL is standard procedure, unless it's a problem with your insurance. If it's a hassle, I would just stay with her then, and wait it out. But certainly demand VL tests at 4, 12 and 24 weeks post treatment. 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 |
Fitz starts REDEMPTION 3 Trial 7 years 9 months ago #19621
I appreciate your sentiment Jeff, but I can't write that line for her. Only she can do that. Failed Interferon 96', G1a, VL = 9 - 5.5 Million, F3/A3, AST 111, ALT 190, Generic DAA treatment Sof/Led (Mylan - India MYHEP LVIR) - 8 June, 2016 2 Week Results 20 June, 2016 AST 19, ALT 32 4 Week Results 06 July, 2016 AST 22, ALT 30, VL = 35 6 Week Results 20, July 2016 VL only = HCV RNA Detected, Non-Quantifiable <15 8 Week Results 04 August 2016, Labs, LFTs Normal, VL = UND 12 Week Results 31 August, 2016 LFTs Normal, VL = UND EOT + 4 Weeks, LFTs Normal, VL = UND, "SVR4" SVR12, 21 Nov 2016. CURED!!! | |
Fitz starts REDEMPTION 3 Trial 7 years 9 months ago #19623
My specialist at the University of Arkansas Med Center insisted on tests at 4 week intervals until I was undetected, with one more at 12 weeks EOT. She said I could test at EOT 24 if I wanted. I did and I did. I am fortunate to have a PCP and GI who are considerate of my feelings. What is the harm in ordering another test for you? Very inconsiderate. 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 | |
Fitz starts REDEMPTION 3 Trial 7 years 9 months ago #19626
Bravo Fitz way to go! What a nerve to dare say " I will take you off treatment" - as if she had the power to. Haha! Oh well in this case she doesn't thank goodness! I also agree on the " arrogance equating ignorance" sometimes and little some doctors know what we are up to here! With Dr Freeman's top of class knowledge and experience, together with GP2U staff and all of you as support peers, perhaps we have turned into wonderful " anarchists" - in the best sense of the word of course ( non violent and free)! Looking forward to your 8 week blood test results my friend - the dragon will probably be out of sight! Fingers crossed. Blood transfusion in 1992 - Diagnosed in 2007 Tx naive -G1b - F1 VL 2.270.000 ALT 40 Start tx June 4th/2016 with DAAs - Sof/Led from India Bloods on two weeks of tx (June 18th) AST 17 - ALT 10 - GGT 19 Virus UND Bloods on six weeks of tx (July 16th) AST 17 - ALT 8 - GGT 12 Virus UND EOT on August 8th (did 9 weeks and 3 days) SVR 4 Virus UND (September 7th) AST 13 - ALT 5 SVR 14 Virus UND (November 12th) | |
Fitz starts REDEMPTION 3 Trial 7 years 9 months ago #19628
Ha! Ya'll are awesome (all ya'll)! So proud to be a part of this crew! Failed Interferon 96', G1a, VL = 9 - 5.5 Million, F3/A3, AST 111, ALT 190, Generic DAA treatment Sof/Led (Mylan - India MYHEP LVIR) - 8 June, 2016 2 Week Results 20 June, 2016 AST 19, ALT 32 4 Week Results 06 July, 2016 AST 22, ALT 30, VL = 35 6 Week Results 20, July 2016 VL only = HCV RNA Detected, Non-Quantifiable <15 8 Week Results 04 August 2016, Labs, LFTs Normal, VL = UND 12 Week Results 31 August, 2016 LFTs Normal, VL = UND EOT + 4 Weeks, LFTs Normal, VL = UND, "SVR4" SVR12, 21 Nov 2016. CURED!!! | |
Fitz starts REDEMPTION 3 Trial 7 years 9 months ago #19631
F....you know this already......but not being privy to your conversation and not knowing what state you reside in, IMHO DIY is the best method. I can get labs done every day w/o doctor's orders, if need be. FIXHEPC.com is all you need or for anyone else in the world. For your GI to say what she said is not uncommon. Most doctors think they are on a pedestal and we ( the patients) need to look up to them for guidance. F that if you have common sense and the determination to get well, which you do. My GI is a Gilead lap dog as most GI's are. I waved my 4 and 8 week lab results under his nose when he asked "how much were the generics?" Only you can make the decision to continue w/her or not. DIY for the win "with a little help from your friends" (credit to the Beatles, in case some people don't know)....e. contracted Gen 1a in the 70's, dx in 2007...ast 27 to 35...alt 43 to 96...vl 1.2 mil to 8.6 mil. biopsy F-2 (2012)..pre tx results 1/23/16 ast 32, alt 46, vl 3.1 mil tx started 2/11/16.... lab results 2/24/16 ast 18, alt 18, vl <15 IU/ml 28 days later.............lab results 3/9/16 ast 21, alt 21, vl UND 56 days later.............lab results 4/6/16 ast 20, alt 22, vl UND 139 days later...........lab results 6/29/16 ast 28, alt 30, vl UND...EOT SVR24 | |
Fitz starts REDEMPTION 3 Trial 7 years 9 months ago #19636
Hi all, this recent part of the thread just reminds me of how powerful language can be. My career with HCV has been reasonably okay in regard to the manner I have been shown by health professionals. This is aside from the "Jeff couldn't cope [with interferon plus the other stuff]" many years back. Ever since, things generally okay as I said. RPA wise - distinction grade. Many years ago I had an unrelated conversation with a solicitor about compensation and damages (read Court pity and willingness to acknowledge someone has been hurt), and he said a big problem with many conditions is that people appear healthy, and I guess you look that way with HCV until the old boot starts to give out. Sometimes I think we walk a thin edge sympathy wise. Not just straight out assumptions about the manner in which we have become HCV positive, but expectations that we can be warehoused until medications become more affordable. The people I see generally have me checking their weeks record so that I am on the same page as them, even if the request to see me is just to get some advice about their Centrelink or even a local bus timetable. I am lucky though as the people I see are such that they often can misinterpret things that are said, so I have be be conscious of this automatically. Not sure if I am getting the message across, but just saying language is all important to me, I feel bad enough having HCV to begin with. Yours 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. | |
Fitz starts REDEMPTION 3 Trial 7 years 9 months ago #19639
Sorry Jeff. Still not quite fully understanding your intended message I'm afraid. I value directness, so just come right out and hit me over the head with it if you have to. I promise I won't run away. I've noticed you Aussies (and Kiwis as well) sometimes tend to speak in exceedingly polite and indirect terms (especially when you are disagreeing with something,) rather than coming right out and saying what you are thinking. This is certainly a matter of cultural style, but for we Americans who tend to be right up front with things, it can be a bit daunting attempting to unravel your pleasant code to get to the heart of things. Failed Interferon 96', G1a, VL = 9 - 5.5 Million, F3/A3, AST 111, ALT 190, Generic DAA treatment Sof/Led (Mylan - India MYHEP LVIR) - 8 June, 2016 2 Week Results 20 June, 2016 AST 19, ALT 32 4 Week Results 06 July, 2016 AST 22, ALT 30, VL = 35 6 Week Results 20, July 2016 VL only = HCV RNA Detected, Non-Quantifiable <15 8 Week Results 04 August 2016, Labs, LFTs Normal, VL = UND 12 Week Results 31 August, 2016 LFTs Normal, VL = UND EOT + 4 Weeks, LFTs Normal, VL = UND, "SVR4" SVR12, 21 Nov 2016. CURED!!! The following user(s) said Thank You: sabrecat, Matt-Kenney-google | |