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TOPIC: Hard to treat Gt3 - Another stage of the journey

Hard to treat Gt3 - Another stage of the journey 3 years 3 months ago #19872

  • Gaj
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:whistle: Thanks Fretboard. :lol:

Yep, G3 is a few percent down but the new DAAs look to be lifting us back up there based on the trial data. :) :+1:
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
:cheer: :cheer: :cheer:
Last Edit: 3 years 3 months ago by Gaj.
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Hard to treat Gt3 - Another stage of the journey 3 years 3 months ago #19873

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Hi Price,

Low carb diet, fats for energy, lots of greens. Got it! Thanks. :+1:

Good link too. :)


......coconut oil? ugh!
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
:cheer: :cheer: :cheer:
Last Edit: 3 years 3 months ago by Gaj.
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Hard to treat Gt3 - Another stage of the journey 3 years 3 months ago #19874

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Londongirl, thin people can also be insulin resistant and steatosis but obviously if you're underweight then loosing weight would not be recommended. But diet can always be improved. I would concentrate on having less carbs and more protein if ok with your doc (since he's the one familiar with your case).

Thanks Price, yes, definitely more protein, but even with that it's hard to keep the weight on. Initially put some deperately needed kgs on with starting treatment, but still low.

I had a LiverMultiScan and it showed no fat (unsurprising!) - but I do feel cholesterol profiles are relevant in some way and feel there are central areas of liver where DAAs had a harder time reaching on me, fat or no fat. What is the cause? LMS showed more intense fibrosis in this area center ribs and where that area has more blood flow? It's a complex issue for sure, things not working right, gaining too much fat, losing too much weight, low Absorption and I guess High Absorption too (although I'm sure not the correct term!) I have read quite a bit on this in the past and instinct telks me this area needs to be looked at more in regard to pre treatment testing. My cholesterol profile wasn't measured by hospital, it was a private blood test. Somehow I think there are some links between how our bodies are responding to the medicines, especially if a slower response, maybe cross GT and Steatosis / Congestion and such areas. I wouldn't even begin to understand this complex thing, but I have learned we are all unique and 'one size' doesn't fit all. This is the big problem with NHS England eg One set route for all, thankfully their narrow option was not a path I took. ie the option of 8 weeks Harvoni, not that I was actually offered that, but it would have been likely as they took fibroscans from the right side flank, not near the center where my fibrosis readings are higher.

One thing I feel for sure is exercise is key for all if able, swimming in particular good for those with joint pain.

ps on starting treatment I had a huge craving for carbs.
ppsSorry to digress somewhat from the GT3 thread, but I do think there may some issues in common that are not GT3 specific although less apparent in GT1s, especially GT1as
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
Last Edit: 3 years 3 months ago by LondonGirl. Reason: edit + LGs spetacular typos!
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Hard to treat Gt3 - Another stage of the journey 3 years 3 months ago #19878

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Hi Gaj it was only last night that I started catching up with this thread. Until then I had no idea you had relapsed. :( I am so sorry about it. At the same time I am impressed by both your positive attitude and the level of care and love shared herein by everyone who knows you. It came to my mind also - that DAAs have indeed given us all a " break" (interlude) from Hep C and if I were to relapse too - I would have been happy just by the very fact that for few weeks I felt well and "normal" again. Good to hear you are stronger physically and that you are determined to keep up with a good diet and plenty of exercise. And hey...you will SVR at some point as everyone has already mentioned here because the DAA industry won't leave Gt3s alone!! We will all make sure of that! :cheer:
Big hug from Brazil! #love
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)
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Hard to treat Gt3 - Another stage of the journey 3 years 3 months ago #19880

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Hi GAJ, not been on for ages, came on to catch up with people's SVR s and was very sorry to read your news. By now you will be acclimatised to it and getting on with things. Meg has written such a lovely post there, and totally agree, the DAAs have given your liver a break and with your healthy living plan until you re-treat - you will get there! #love . You are such a lovely guy and such a support to everyone here, it's not fair really, but I know your positive attitude will get you through.
Lots of #love, also thinking of Sabrecat and Splitdog,
Debs X
Geno 1a, F1, tx naive, had it 35 yrs.
Started Cipla HepcvirL on 12/01/16
Starting VL 490,000
At 16 days in <15
4 week results: UND
8 week results: UND
5 weeks EOT alt 25
SVR 15 - Not Detected
6 months EOT - Not Detected
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Hard to treat Gt3 - Another stage of the journey 3 years 3 months ago #20007

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Gaj wrote:
......coconut oil? ugh!
It's either that or beef tallow :sick:
P
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Hard to treat Gt3 - Another stage of the journey 3 years 3 months ago #20064

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here is a link about the studies being made for SOF+VEL when treating for GT3 and GT2 patients. To be noted that GT3 success rate is increased, at 95% (ASTRAL-3 Trial).
www.nejm.org/doi/full/10.1056/NEJMoa1512612#t=article

Cheers,
RHF
In fiecare an HCV ucide peste 500000 oameni.Medicamentele generice pentru hepatita C functioneaza. Nu deveni statistica! Cauta pe Google “medicamente generice pentru hepatita C”.
HCV kills more than 500000 people every year. HCV generic drugs work. Don't become a statistic.
By sharing this Youtube video you might save someone’s life!
My TX: HEPCVIR-L[generic Harvoni]-India
SVR52 achieved
Last Edit: 3 years 3 months ago by rohcvfighter.
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Hard to treat Gt3 - Another stage of the journey 3 years 3 months ago #20065

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Thanks RHF, with the slight caution that the 95% SVR is the overall result for all G3s. Previously relapsed patients and those with cirrhosis don't quite acheive that level. But it does look like a promising option. :cheer:
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
:cheer: :cheer: :cheer:
Last Edit: 3 years 3 months ago by Gaj.
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Hard to treat Gt3 - Another stage of the journey 3 years 3 months ago #20174

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Well that sucks Gaj and Splitdog, I know exactly how you guys feel being in the same boat myself and 4 1/2 months into re treatment.

I have a fatty liver confirmed by ultrasound which probably contributed to the relapse. Now thinking how do we get the meds into the fatty deposits. I take regular asprin and hoped that may do the trick or do we need a higher dose of meds. Maybe it's that E thing that needs looking at , you know excercise i'm allergic to it :) Or do we need a very strick protein diet ?

I'm happy to take the DAA's for a year if needed as i'm feeling well again on tx, any thoughts.

cheers
Two time relapser.

SVR 4 achieved 12/16 at last
SVR 12 achieved 22/02/2017 The Bastard has been defeated :):):)

GT 3 - about 28 yrs with HCV
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Hard to treat Gt3 - Another stage of the journey 3 years 3 months ago #20175

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Hi Paul and fellow posters

I'm G1a and waiting on SVR12 (hopefully). Here goes

Everyone is different and we have to find what works for us once we get rid of the gift that keeps on giving (and WE ALL WILL!!!)

I worry about the strict protein diet on many levels, the first being ethics.

I wonder how sustainable a high protein, low carb diet is for our bodies in the long term.

A few years ago I joined a personal training gym and adopted their way of eating, did weights and lots of hard cardio (this was post diagnosis - I'd started getting acupuncture and it made me feel well enough to be able to consider this). Getting fit made me feel very good but I noticed my cholesterol levels went up a bit. I lost lots of fat and put on some muscle and looked pretty good. I thought I'd killed the fat kid that lives in my body. :)
But no :(
I think that way of eating is unsustainable on many levels - the impact it has on the planet, our bodies and our wallets, not to mention the animals who suffer in brutal conditions and die horribly to put food on our plates.

I don't know the answer to the food question or the exercise question. :unsure:

But I do know that if you don't use it you lose it and it's important to find some activity we enjoy be it walking, swimming, Yoga, lawn bowls or whatever.

I am fortunate in that I have activities that I love and are good for me but unfortunately they aren't enough to keep the weight off at a level I would like. (Can't do impact cardio any more due to low back injury). The fact that I don't have a fatty liver (well, no one has mentioned it) is more good luck than good management.
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
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Hard to treat Gt3 - Another stage of the journey 3 years 3 months ago #20176

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Velpatasvir & Sofosbuvir (Epclusa) generic now available from Beacon Pharmaceuticals of Bangladesh

www.sofosvel.com

The new generic that is 95%+ cure for all genotypes, not just gen 1
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
Last Edit: 3 years 3 months ago by Greedfighter.
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Hard to treat Gt3 - Another stage of the journey 3 years 3 months ago #20178

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Greedfighter wrote:
Velpatasvir & Sofosbuvir generic now available from Beacon Pharmaceuticals of Bangladesh

www.sofosvel.com

The new generic that is 95%+ cure for all genotypes, not just gen 1

I hope it comes in 28 pill packs not the 6 pill pictured.
Two time relapser.

SVR 4 achieved 12/16 at last
SVR 12 achieved 22/02/2017 The Bastard has been defeated :):):)

GT 3 - about 28 yrs with HCV
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Hard to treat Gt3 - Another stage of the journey 3 years 3 months ago #20179

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Price wrote:
Gaj,


hepatitiscnewdrugresearch.com/fatty-liver-and-hcv.html

Reducing dietary saturated fat is associated with an increase in LDL-receptor abundance (which helps the virus multiply) of magnitude similar to the decrease in serum LDL-cholesterol (which is what happens with geno 3).

So it looks like your new diet will have to include restriction of PUFAs in favor of big fat steaks, and eggs and bacon for breakfast instead of cereal, butter, coconut oil :sick: ....and treat during winter when chol is higher (because of seasonal variations in bile acids). :woohoo:

P

So no carbs, more greens and animal fats/protein ?
Two time relapser.

SVR 4 achieved 12/16 at last
SVR 12 achieved 22/02/2017 The Bastard has been defeated :):):)

GT 3 - about 28 yrs with HCV
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Hard to treat Gt3 - Another stage of the journey 3 years 3 months ago #20180

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Hey Gaj
Having had a mini break I haven't written a whole lot lately and sorry I haven't written personally to you yet. Relapse is no friend of ANYONES that's for sure and I send you big empathy on that.
However
I'm certain that if anyone can finish this race it's you
You're always keeping ahead of the latest data and treatment options to the point you help others with information re same.
The recent treatment has given your liver a good break and yes you have a healthy lifestyle too.
Another fork in the road, but one with new improved meds coming.
You deserve the best Gaj and I am backing you for the next tx.
Splashes of hope and wellness
Ariel #flower
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
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Hard to treat Gt3 - Another stage of the journey 3 years 3 months ago #20182

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I'm sure that 28 pill bottles will eventually be available; remember these folks will also have competition from India, if you want it now, here it is. If I needed this I would crawl there for 6 dose blisterpacks. Beacon is saving somebody's life, probably more than one.

If Hillary gets elected she will pass TPP quickly, this opportunity may evaporate. USA residents are encouraged to move forward quickly
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
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