×

Notice

The forum is in read only mode.
Welcome, Guest
Username: Password: Remember me

TOPIC:

Prof Gane's remarks: implications for relapse 8 years 1 week ago #10628

  • sonix
  • sonix's Avatar
  • Offline
  • Elite Member
  • Elite Member
  • Music is life
  • Posts: 165
  • Karma: 2
  • Thank you received: 359
On the issue of "genotype change", it was postulated in another thread that someone could be co-infected with multiple genotypes but the test may only detect one. Possibly if G4 was detected and cleared, a co-infection with G3 could have been present and not cleared but detected in subsequent test. Only a theory but sounds more likely than genotype morphism.
M 61yo HCV+ ~ 30 yrs Gt1a F2 VL 223,000 ALT 54 AST 42 Tx start Sof/Dac 17Dec15.
SVR4 at 7Apr16 ALT 22 AST 22
SVR12 at 9Jun16 ALT 23 AST 25
Melbourne, Australia
The following user(s) said Thank You: klhilde

Prof Gane's remarks: implications for relapse 8 years 1 week ago #10632

I agree with LG......since reading about Professor Gane's comments (not just on this thread) I have been worried. Up until I read the thread I wasn't. I have no doubt that the meds were tested properly before I received them but the niggling doubt that I may relapse has now been planted. I I think I will stop reading for a few weeks until I get my first lot of post treatment results back (3 weeks' time. :(
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: LondonGirl, mgalbrai, Ariel

Prof Gane's remarks: implications for relapse 8 years 1 week ago #10634

  • Ariel
  • Ariel's Avatar
  • Offline
  • Platinum Member
  • Platinum Member
  • Cured, SVR 24
  • Posts: 1064
  • Karma: 31
  • Thank you received: 3084
And this is why I asked for a medical opinion and clearly we have one
Lets just relax
Relapsers from peg/inf like myself already suffer interferon induced anxiety (well a few do) we may have been on the phone alone in the night to lifeline while in that dark hole (I was)
I was like Lynne, alarms and red flags waving when I read this thread.
I agree lets just realise how early on we are as a tx cohort anyway, get on with staying positive of mind and all agree that there could be some data errors, some affiliates of big pharma, some speculation but that our common goal is to achieve a stress free future
It's been a fascinating read since I first posted here and a hot topic
Cool down time? Phew!
Sending a splash of cool water
Ariel xxx
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, mgalbrai, Gaj, Lynne-Francis-facebook, IRMA88, isaing4

Prof Gane's remarks: implications for relapse 8 years 1 week ago #10639

  • Dan
  • Dan's Avatar
  • Offline
  • Elite Member
  • Elite Member
  • Posts: 203
  • Thank you received: 154
It is worrying for everyone on Twinwir or Chinese API. If you already finished the treatment, there is nothing you can do now, apart from keep calm and hope for the best. Staying away from the forum will help as well.

For some of us, who still on tx, is anyone planning to add licensed Indian sof/led for at least 4 weeks, to make sure that the virus hit hard? In some cases we probably just need to replace Twinwir with licensed for the remainder of the treatment.
Gen 1b, F1-F2. Naive.
Started Twinvir tx on 2 nd of December 2015 for 12 weeks.
Starting VL 400000, Alt 49/AST 44
1 week VL 29, ALT 44/AST 30.
4 weeks VL 12, ALT 33, Platelets 145, all other tests normal.
7 weeks VL Detected, ALT 28, all other normal
8 weeks UND, 12 week UND, 24 week SVR UND

Prof Gane's remarks: implications for relapse 8 years 1 week ago #10640

  • Vororo
  • Vororo's Avatar
  • Offline
  • Platinum Member
  • Platinum Member
  • Posts: 334
  • Karma: 15
  • Thank you received: 1047
Hi Folks,

It seems like a lot of people are getting worried about that remark from Prof Gane about the *possibility* of relapsing with certain generics.

Dr James has verified by NMR that all the generics sourced by the FixHepC Buyers Club and that the generics manufactured by the companies recommended on the FixHepC web Forum are chemically equivalent to the patented molecules:

fixhepc.com/blog/item/16-testing-provisions-patient-safety.html

This means that apart from a few minor (and probably irrelevant) arguments about solubility and kinetics, Dr James has done everything humanly possible to show the generics that we all are taking may be assumed to be bio-equivalent to the patented molecules.

As several other people on this thread have already pointed out (mgalbrai, Price, Sirchinenge, GAJ, ...), you just need to look at our forum signatures to see that the FixHepC generics are working extremely well. This is overwhelming evidence that there is no difference between the FixHepC generics and the patented molecules. The NMR spectra say we are taking the correct molecules. All the results posted so far say we are taking the correct molecules. So do not worry, do not fret! Molecules do not know about nationality or packaging. All the evidence so far says that the molecules made in China, India, and Bangladesh are the same molecules as the molecules made for Gilead in Ireland.

Here are some results posted previously by Dr James from previous trials using molecules made in the USA or Europe:

fixhepc.com/forum/questions-and-answers/...ol.html?start=6#9804

Probably a lawyer would say that NMR doesn't prove bio-equivalence... The final proof will be the results from the REDEMPTION trials. I am sure that once the results are in they will show comparable or better statistics. Probably better because REDEMPTION will be the biggest trial ever.

Personally, I am already absolutely convinced that the generics I have been on are bio-equivalent. But I am a chemist, not a lawyer. REDEMPTION will provide the ultimate proof.

So for what its worth, my advice about the risk of relapse is this - DON'T WORRY, IT WILL PROBABLY NEVER HAPPEN.

But even if the worst does happen, it will be just bad luck and nothing to do with which little country (joke) you got your treatment from.

Yours,

Oor Wullie

(Expert in Catapults and Chemistry)
Diagnosed Jan 2015: GT3, A0+F0/F1. Fatigue + Brain-Fog.
Started Sof+Dac from fixHepC 10-Nov-2015. NO sides.
Pre-Tx: AST 82, ALT 133, Viral Load 1 900 000.
Week4: AST 47, ALT 58. VL < 15 (unquantifiable).
Week12 (EOT): AST 30, ALT 26, VL UND
Week16 (EOT+4): AST 32, ALT 28, GGT 24, VL UND
Week28 (EOT+16): AST 26, ALT 22, GGT 24, VL UND
Ever grateful to Dr James.

Relapsed somewhere after all that... Bummer!

Jan 2018: VL 63 000 (still GT3).
The following user(s) said Thank You: mgalbrai, Ariel, IRMA88, Jaz

Prof Gane's remarks: implications for relapse 8 years 1 week ago #10643

Worry in one hand,
Take a crap in the other.
See which one fills up the fastest.
We have all heard that and probably know that worry is an absolutely useless emotion. Acting out of concern to change an outcome or perceived injustice is not the same as worry.
Most of the issues I am seeing discussed here have been addressed by Dr. Freeman in an earlier post. The nail has been hammered, set. the hole filled, sanded and painted over.
Either you believe in Dr. Freeman, who has no problem with Mesochem, or you don't.
He is the only reason I am here.
I believe in his judgement.
Mike
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

Prof Gane's remarks: implications for relapse 8 years 1 week ago #10651

  • isaing4
  • isaing4's Avatar
  • Offline
  • Elite Member
  • Elite Member
  • Stop saying 'I wish' and start saying 'I will'. :)
  • Posts: 239
  • Karma: 5
  • Thank you received: 423
Hi ,
I am on TWINVIR and of course that I am worried.
I am worried about slow response, being UND in between week 8 and 9. Worried about viral load at EOT.
Worried about SVR at 4/12/24 weeks after EOT.
But I am not worried about the quality of sof/led of Incepta.
Because it was tested by specialists in Australia and because many people here and on other forums reached UND after 2/4/6/8/10 weeks.
I am not worried because I trust dr. James.
I am not worried because I will never afford the original licensed Harvoni 80000 USD or 40 000 Euro in France.
So I took my chance with generics, I bought Twinvir directly from Incepta. It was me and two other companions fighting for a life without HCV. In my country I am not sick enough to be treated with IFN free medication! I have to wait until F4, maybe F3. :dry:
Only time will prove if the desired SVR12 will be reached by each of us.
Only UND for all of us! :)
HCV since I don't know. Diagnosed in 2010.
GT1b, F0/F1, VL 9M, ALT 44, AST 42, Tx naive,
started 12 wks Twinvir on 06.12.2015. Feeling great and grateful :)
virus not detected 06.02.2016 & SVR24
This email address is being protected from spambots. You need JavaScript enabled to view it.
The following user(s) said Thank You: mgalbrai, Ariel, Jaz

Prof Gane's remarks: implications for relapse 8 years 1 week ago #10652

Worry over one's health is normal.
Beating a dead dog to death is not.
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
The following user(s) said Thank You: Ariel, splitdog

Prof Gane's remarks: implications for relapse 8 years 1 week ago #10653

  • Sirchinenge
  • Sirchinenge's Avatar
  • Offline
  • Moderator
  • Moderator
  • What a difference a year makes:)
  • Posts: 269
  • Karma: 3
  • Thank you received: 366
Man, everyone needs to take a collective deep breath:)

On occasion you need to have faith that this is all going to work out this is one of those moments.

Other wise you're ruining what should be very happy time.
Sob/Dac from Oct 29 2015
Geno 1b
Fiberscan 9.9 Pre treatment
Fiberscan 7.4 week 10
VL 1.3 million pre treatment
Week 2.5 VL 96
Week 5.5 VL 17
Week 10 VL UD
SVR 3 UD
SVR 16 UD
Cured:
All liver functions in normal ranges.
The following user(s) said Thank You: Vororo, mgalbrai, Ariel, splitdog

Prof Gane's remarks: implications for relapse 8 years 1 week ago #10655

Exactly Sir.
This should be a very happy time. I am virus free for the first time in my adult life. I am elated. The main thing is, right now, the virus is not destroying my liver.
I plan to be able to say that every day from now on.
If a problems arises, I will deal with it.
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
The following user(s) said Thank You: Vororo, sabrecat, Ariel

Prof Gane's remarks: implications for relapse 8 years 1 week ago #10656

  • Vororo
  • Vororo's Avatar
  • Offline
  • Platinum Member
  • Platinum Member
  • Posts: 334
  • Karma: 15
  • Thank you received: 1047
Yeah, seconded.

Please can someone change the title of this thread to "Prof Gane's remarks: implications for total recovery", move it to the "Don't Worry" archive, and then close it from further posts?
Diagnosed Jan 2015: GT3, A0+F0/F1. Fatigue + Brain-Fog.
Started Sof+Dac from fixHepC 10-Nov-2015. NO sides.
Pre-Tx: AST 82, ALT 133, Viral Load 1 900 000.
Week4: AST 47, ALT 58. VL < 15 (unquantifiable).
Week12 (EOT): AST 30, ALT 26, VL UND
Week16 (EOT+4): AST 32, ALT 28, GGT 24, VL UND
Week28 (EOT+16): AST 26, ALT 22, GGT 24, VL UND
Ever grateful to Dr James.

Relapsed somewhere after all that... Bummer!

Jan 2018: VL 63 000 (still GT3).
The following user(s) said Thank You: pat1, mgalbrai, Ariel

Prof Gane's remarks: implications for relapse 8 years 1 week ago #10657

Whether we relapse or not is actually irrelevant. We still must do all we can at a specific time and that time is now for most of us. You can't just sit and wait forever for 'something better to come along'. It has. We did. It's good. Thank you. (bowing........bowing again) :P
This email address is being protected from spambots. You need JavaScript enabled to view it.

Genotype 3
VL 4,100,000
ALT 101 AST 71
Treatment Naive
Started Sof/Dac Jan 12, 2016
VL= <15 4 weeks in. AST/ALT normal.
VL=UNDETECTED 8 weeks in.
SVR4= Virus back. 3,300,000

Started generic Epclusa Sep. 23, 2017

4 weeks in <15 *Detected.
12 weeks in <15 *Not Detected.
16 weeks in <15 *Not Detected.
Finished 24 weeks treatment 3-17-18
SVR5 <15 Not Detected.
SVR 20 <15 Not Detected.
SVR 44 <15 Not Detected.

Thank you Jesus.
Thank you Dr. James
The following user(s) said Thank You: Vororo, mgalbrai, sabrecat, Gaj, Jaz

Prof Gane's remarks: implications for relapse 8 years 1 week ago #10659

splitdog wrote: Whether we relapse or not is actually irrelevant. We still must do all we can at a specific time and that time is now for most of us. You can't just sit and wait forever for 'something better to come along'. It has. We did. It's good. Thank you. (bowing........bowing again) :P


Makes sense to me.

We have had it drilled into our heads that we wait.......

I will now happily wait for anything; the difference is my LFT's are somewhat normal and any Hep C virus is hard to find.

What Prof Gane says is undoubtedly relevant and needs consideration.

Heard the concerns (always is about generics) before though, and made a decision that is applicable to me.

I am not posting this just to talk myself into believing everything will be okay. I just keep looking at the signatures and find that more relevant to me.


yours


J.
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.
The following user(s) said Thank You: Archer, Vororo, mgalbrai

Prof Gane's remarks: implications for relapse 8 years 1 week ago #10660

What we all are and have been participating in all along is a HUGE clinical trial. The results of which will have far reaching impacts on the availability of affordable HCV medications to all that need them. REDEMPTION is just a name for it.
This is the beginning of the end for HCV.
Now we will have some war stories to tell in our later years.....
Because we can have some later years in which to tell them.
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
The following user(s) said Thank You: 2b, Ariel, splitdog

Prof Gane's remarks: implications for relapse 8 years 1 week ago #10670

  • Ariel
  • Ariel's Avatar
  • Offline
  • Platinum Member
  • Platinum Member
  • Cured, SVR 24
  • Posts: 1064
  • Karma: 31
  • Thank you received: 3084
Yup exactly Mike :)
I threw a big cool bucket of water out yestey here didn't it splash far enough ;)
Yes we are the early cohort
Let's be happy
I'm sure a lot of these remarks by Gane are trying to be constructive and can be interpreted a thousand ways but we are safe with our choices and in FANTASTIC care here with James and team
Here is some more soothing cool water

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: mgalbrai
Time to create page: 0.094 seconds

Copyright © 2015-2020 FixHepC

Back to Top