Enrolled in Sofosbuvir/Velpatasvir/GS-9857 clinical trial
Hoodietree said
Aug 26, 2018
Didnt notice that thank you Tig! Guess I wont start tapping my foot waiting.
Tig said
Aug 26, 2018
Hoodie,
FYI: Michael (Webtomass) hasn’t been active in two years. He may not get your message.
Hoodietree said
Aug 26, 2018
webtomass wrote:
BCAAA aminos powder 3 times a day
NALT once a day.
Matt, can you go into more detail about these two please? Im not familiar.
Also have you (or anyone) tried Acetyl L-carnitine + Alpha Lipoic Acid for fatigue and brain fog? I found that helpful pre-treatment and I miss it a lot right now at 4 weeks on treatment.
I understood BCAAs were for muscle repair and never heard of supplementing with that outside of a fitness/weight lifting protocol.
Never hear of NALT is that naltrexone?! Anyone tried that at low doses?! Ive heard its good for folks like us but hard to get your hands on.
Would love to hear more. Many thanks in advance.
-- Edited by Hoodietree on Sunday 26th of August 2018 02:02:22 PM
Tig said
Aug 26, 2018
Hi Mak,
If you read his signature, he mentions he was a genotype 4, which is a less common genotype and found more often in the African continent and some southwest Asian areas. He completed Vosevi treatment successfully, in April of 2016.
mcmaklin said
Aug 26, 2018
Have you been treated Webtomas? And what genotype ?
Canuck said
Apr 15, 2016
Hi WTM,
Great you're finished, and great you were UND at WEEK 8, and now, are just waiting for your (12 week) EOT VL.
I agree, I too think vel will prove to be a real winner. Thank you for keeping us posted.
I am waiting for my WEEK 4 VL drawn April 7 - I will also post this as soon as I know it. C.
Tig said
Apr 13, 2016
Congrats WTM!! EOT and already having that kind of energy is an excellent indication of a quick recovery. That's quite a supplement plan you've got going! Good luck and do keep in touch regarding your post treatment labs.
webtomass said
Apr 13, 2016
forgot... on top of a weekly B-12 shot take 1000mcg sublingual B12 everyday and Folic Acid. Add a B Complex if you can. Nutrients adequately taken solve many health issues.
webtomass said
Apr 13, 2016
B-12 injection once a week
BCAAA aminos powder 3 times a day
NALT once a day.
Exercise and replenish calories when you burn them.
There are other things I take but the above is what is helping.
Cheers, M
webtomass said
Apr 13, 2016
Hi Matt,
Completed treatment and will get blood results end of next week. No sides this is a breeze nurse told me not same for some who will have side effects but nothing major.What I'm really interested in is 3 months from now. Same as you Matt, at week 12 post treatment it came back on Vpak +Rib treatment. But from my calculation considering how low my liver panel reading got right away after 2 weeks, I have a good feeling I'll stay SVR. ITs interesting you reached SVr with Harvoni alone after your first treatment.
As for physical activities is concerned, well let me tell you I put lots of mileage on this body and no problem getting the blood to extremities of my body. I blade 18K under 1 hour. 2 days on 1 day off on and on. I also take lots of BCAA and NALT. That also helped getting oxygen to entire body and muscles.
I will post my EOT result when it comes in. I think this is really the treatment that will be taken by all very soon. As far as I'm concerned the debate is over. Gilled is the winner.
Cheers, M
Matt Chris said
Apr 2, 2016
Hello Webtomass
Congrats on achieving UND, stay physically active as you can during the last of your treatment with the goal of moving your blood to the deep recesses of your body.
I also relapsed during the Abbvie Clinical trial for Vieira Pak + Ribavirin treatment, but reached SVR with Gileads "Harvoni"
matt
wmlj1960 said
Apr 2, 2016
HEY!, I want to know your secret for getting those platelets to improve every time. I need some of what you've got Webtomass. What ever you're doing, keep doing it!
RAGDOLL said
Apr 2, 2016
Excellent News! You are doing great. Have a great week-end. CC
Cinnamon Girl said
Apr 2, 2016
Hi Webtomass, thanks for sharing your results so clearly, you`re obviously responding very well indeed. Congrats on your 8 wk UND viral load!
You must have been so pleased to get into this trial after your previous tx with Vik Pak + riba didn`t work out, this is such a powerful and effective drug combo, and we`re very interested in following your progress.
Good luck, and keep us updated!
Canuck said
Apr 2, 2016
Congrats webtomass!
Must feel great to get that undetected!
So glad for you.
Too bad you could not have known your WEEK 2 and WEEK 4 VL's, as you probably could have been celebrating your undetected status even sooner than at WEEK 8! But very glad your sixth sense is "on" and that it is also telling you - "It's gone".
No noticeable sides at all? I notice minor gastric roiling and some headaches, maybe some increased fog - I wonder if it is from the GS-9857?. Who knows. But if they are sides, then they are a very small price and well tolerated. tkflex36 (SOF/VEL) 12 WEEKS said the same as you - no sides.
Very interesting to see your progress (yours, mine and tkflex36's) - so glad you updated us, and VERY pleased for you.
Just waiting for robertamx to join this velpa party now!
Great news! Happy for you. C.
wendyo said
Apr 2, 2016
Looking good Web. NICE results.
Sydhanrahan said
Apr 2, 2016
How exciting Webtomass,
those bloods look awesome. It's very satisfying to hear that someone who's already been through the mill once, looks like finally reaching their destination.
Now, just go and chillax in a recliner in the first class club over the other side of the tracks and your final bloods won't be too far away.
Syd
robertsamx said
Apr 2, 2016
Hi Web... Your in a good spot at 8 weeks. The LFT's look good especially the UND!! And to think you have 4 more weeks of treatment drugs to go! Now your throwing knock out punches. Keep swinging! RC
webtomass said
Apr 2, 2016
Hi all,
A quick update from the Golden TGV Bullet Train that arrived at Week 8 gate on March 14. The service in first class has been tremendous so far. Feeling very good no side effects. 9 days left and I'm done. I'm interested 3 months post EOT but something inside tells me not this time. Its gone. More to come soon.
PRIOR TREATMENT:
ALT: 65 AST: 54 Eosinophil 7.5 a little high (range:0.0-6.8) Platelets 86 (Low) HCV RNA: 336,000
WEEK 1
ALT: 55 AST: 50 Eosinophil 0.18 (normal range) Platelets 100 (Low) HCV RNA: Here's the kicker, study specifics blocker are inlace for subjects results BUT will know more next week.
WEEK 2
ALT: 49 AST: 38 Platelets 102 HCV RNA: Unknown
WEEK 4
ALT: 37 AST: 28 Platelets: 104 HCV RNA: UNKNOWN - specifics blockers are in place for subjects results. Week 8 visit on March 14.
Hi Web-- just stopping by to see how things are going? Hope all is well. Any news on your blood work? RC
wmlj1960 said
Jan 29, 2016
Hi Michael, and welcome from me also. No side effects so far sounds encouraging and we hope it stays that way. Looks like you've got your strategy for staying healthy through this all planned out and that should help a lot. Hopefully the sleep will come once you get settled in to this routine. We'll be watching for your updates and certainly wish you well throughout treatment all the way to SVR. Glad to have you on board!
Tig said
Jan 29, 2016
It is a great protocol and trial. Hoping you get into the active meds first off. You mentioned no side effects and that's good to hear too. We'll be keeping a close eye on ya Michael! Stay in touch
robertsamx said
Jan 29, 2016
Web, Yep you pulled a great Trial. Your going to kick its butt. Happy for you!! RC
webtomass said
Jan 29, 2016
Hi RC,
Thanks for the welcoming. Believe its referred as Polaris 3.
https://clinicaltrials.gov/ct2/show/NCT02607735
There's 3 arms I'm in the Deferred Treatment Subsidy group. This study just started and believe I might be one of the first to start the treatment. Its ongoing. So no early results. Will keep everyone informed. Did week 1 blood tests this last Tuesday.
-- Edited by webtomass on Saturday 30th of January 2016 05:18:50 AM
robertsamx said
Jan 29, 2016
Welcome Webtomass. Glad you found us. Are you on the Polaris study? The combo you are on should do the trick! I can't wait to see the results of this trial, It's too bad we may not know the results for a year or better. Ask your study nurse how the others in the study are doing, are they clearing the virus early? Best of luck to you. RC
webtomass said
Jan 29, 2016
Hi Tig,
Thanks for the feedback. Yes I cleared a long list of nutrients and amino acids for this trial. I stopped many of them before I started. i.e. NAC, Milk Thistle, Trans-Resveratrol, and other liver herbal concoctions. My main source for nutrients during this trial are not uncommon for the main part. i.e. BCAA, B complex + B12 injection once a week, Vitamin D,E,A etc... But most of all PH balance +8 water lots of it and green juices and shakes. Lots of organic food. So far this is been a breeze frankly. I do take a sleeping pill every other day as this is my main liver symptoms... Can't fall asleep easily.
-- Edited by webtomass on Saturday 30th of January 2016 03:01:51 AM
Tig said
Jan 29, 2016
Hi Michael,
Welcome to the group! Congratulations for getting on the trial, it's looking very promising. We've got another member that is on that trial too and doing well.
I have to ask, what kind of supplements are you taking and have you cleared them with the trial head? They often are deadset against the use of them during treatment and very particular during a trial. A good nutrient rich diet is great, make sure you're getting plenty of fluids too.
We've got some others here on or finished with V Pak, one relapse. They'll introduce themselves soon. Lots of good people here! Good luck...
webtomass said
Jan 29, 2016
Hi Everyone,
New treatment: Sofosbuvir, Velpatasvir, GS-9857. 1 pill a day with food. I'm in the Deferred Treatment Substudy. This will be the one for all genotypes that will hit the market later this year or early next year.
Its been 10 days and no side effects whatsoever. Vieira Pak + Ribavirin treatment relapsed @ 12 weeks EOT this past fall. I run, Inline Skate (over 50 K in last week) and consume lots of very good nutrients, supplements, and food. Hopefully this one does its magic. I'm doing all I can on my own but need this. Anybody else failed to cure on Viekira Pak? Feedback or insight from anyone would be gratefully appreciated.
-----------------------------------------
Contracted 1980's - blood transfusion Relapse on first treatment - Viekira Pak + Ribavirin Fibr. Stage F4 Severe Fibrosis Fibroscan score 28 kpa Genotype 4 - VL 233,000 at beginning of treatment Current Treatment: Sofosbuvir, Velpatasvir, GS-9857 Gilead clinical trial - NCT02607735 Start: 01/19/16 12 weeks treatment
-- Edited by webtomass on Saturday 30th of January 2016 01:30:40 AM
-- Edited by webtomass on Saturday 30th of January 2016 01:34:58 AM
[edited dotted line to fit forum display] -- Edited by wmlj1960 on Friday 1st of April 2016 05:33:05 AM
Didnt notice that thank you Tig! Guess I wont start tapping my foot waiting.
Hoodie,
FYI: Michael (Webtomass) hasn’t been active in two years. He may not get your message.
Matt, can you go into more detail about these two please? Im not familiar.
Also have you (or anyone) tried Acetyl L-carnitine + Alpha Lipoic Acid for fatigue and brain fog? I found that helpful pre-treatment and I miss it a lot right now at 4 weeks on treatment.
I understood BCAAs were for muscle repair and never heard of supplementing with that outside of a fitness/weight lifting protocol.
Never hear of NALT is that naltrexone?! Anyone tried that at low doses?! Ive heard its good for folks like us but hard to get your hands on.
Would love to hear more. Many thanks in advance.
-- Edited by Hoodietree on Sunday 26th of August 2018 02:02:22 PM
Hi Mak,
If you read his signature, he mentions he was a genotype 4, which is a less common genotype and found more often in the African continent and some southwest Asian areas. He completed Vosevi treatment successfully, in April of 2016.
Have you been treated Webtomas? And what genotype ?
Hi WTM,
Great you're finished, and great you were UND at WEEK 8, and now, are just waiting for your (12 week) EOT VL.
I agree, I too think vel will prove to be a real winner. Thank you for keeping us posted.
I am waiting for my WEEK 4 VL drawn April 7 - I will also post this as soon as I know it.
C.
Congrats WTM!! EOT and already having that kind of energy is an excellent indication of a quick recovery. That's quite a supplement plan you've got going! Good luck and do keep in touch regarding your post treatment labs.
forgot... on top of a weekly B-12 shot take 1000mcg sublingual B12 everyday and Folic Acid. Add a B Complex if you can. Nutrients adequately taken solve many health issues.
B-12 injection once a week
BCAAA aminos powder 3 times a day
NALT once a day.
Exercise and replenish calories when you burn them.
There are other things I take but the above is what is helping.
Cheers, M
Hi Matt,
Completed treatment and will get blood results end of next week. No sides this is a breeze nurse told me not same for some who will have side effects but nothing major.What I'm really interested in is 3 months from now. Same as you Matt, at week 12 post treatment it came back on Vpak +Rib treatment. But from my calculation considering how low my liver panel reading got right away after 2 weeks, I have a good feeling I'll stay SVR. ITs interesting you reached SVr with Harvoni alone after your first treatment.
As for physical activities is concerned, well let me tell you I put lots of mileage on this body and no problem getting the blood to extremities of my body. I blade 18K under 1 hour. 2 days on 1 day off on and on. I also take lots of BCAA and NALT. That also helped getting oxygen to entire body and muscles.
I will post my EOT result when it comes in. I think this is really the treatment that will be taken by all very soon. As far as I'm concerned the debate is over. Gilled is the winner.
Cheers, M
Hello Webtomass
Congrats on achieving UND, stay physically active as you can during the last of your treatment with the goal of moving your blood to the deep recesses of your body.
I also relapsed during the Abbvie Clinical trial for Vieira Pak + Ribavirin treatment, but reached SVR with Gileads "Harvoni"
matt
HEY!, I want to know your secret for getting those platelets to improve every time. I need some of what you've got Webtomass. What ever you're doing, keep doing it!
Excellent News! You are doing great. Have a great week-end. CC
Hi Webtomass, thanks for sharing your results so clearly, you`re obviously responding very well indeed. Congrats on your 8 wk UND viral load!
You must have been so pleased to get into this trial after your previous tx with Vik Pak + riba didn`t work out, this is such a powerful and effective drug combo, and we`re very interested in following your progress.
Good luck, and keep us updated!
Congrats webtomass!
Must feel great to get that undetected!
So glad for you.
Too bad you could not have known your WEEK 2 and WEEK 4 VL's, as you probably could have been celebrating your undetected status even sooner than at WEEK 8! But very glad your sixth sense is "on" and that it is also telling you - "It's gone".
No noticeable sides at all? I notice minor gastric roiling and some headaches, maybe some increased fog - I wonder if it is from the GS-9857?. Who knows. But if they are sides, then they are a very small price and well tolerated. tkflex36 (SOF/VEL) 12 WEEKS said the same as you - no sides.
Very interesting to see your progress (yours, mine and tkflex36's) - so glad you updated us, and VERY pleased for you.
Just waiting for robertamx to join this velpa party now!
Great news! Happy for you.
C.
Looking good Web. NICE results.
How exciting Webtomass,
those bloods look awesome. It's very satisfying to hear that someone who's already been through the mill once, looks like finally reaching their destination.
Now, just go and chillax in a recliner in the first class club over the other side of the tracks and your final bloods won't be too far away.
Syd
Hi Web... Your in a good spot at 8 weeks. The LFT's look good especially the UND!! And to think you have 4 more weeks of treatment drugs to go! Now your throwing knock out punches. Keep swinging! RC
Hi all,
A quick update from the Golden TGV Bullet Train that arrived at Week 8 gate on March 14. The service in first class has been tremendous so far. Feeling very good no side effects. 9 days left and I'm done. I'm interested 3 months post EOT but something inside tells me not this time. Its gone. More to come soon.
PRIOR TREATMENT:
ALT: 65
AST: 54
Eosinophil 7.5 a little high (range:0.0-6.8)
Platelets 86 (Low)
HCV RNA: 336,000
WEEK 1
ALT: 55
AST: 50
Eosinophil 0.18 (normal range)
Platelets 100 (Low)
HCV RNA: Here's the kicker, study specifics blocker are inlace for subjects results BUT will know more next week.
WEEK 2
ALT: 49
AST: 38
Platelets 102
HCV RNA: Unknown
WEEK 4
ALT: 37
AST: 28
Platelets: 104
HCV RNA: UNKNOWN - specifics blockers are in place for subjects results. Week 8 visit on March 14.
WEEK 8
ALT: 39
AST: 30
Platelets: 107
HCV RNA: Undetected
Me too! Mee too!
As is tkflex36, I am sure!
Canuck
I am also interested.
JimmyK
Hi Web-- just stopping by to see how things are going? Hope all is well. Any news on your blood work? RC
Hi Michael, and welcome from me also. No side effects so far sounds encouraging and we hope it stays that way. Looks like you've got your strategy for staying healthy through this all planned out and that should help a lot. Hopefully the sleep will come once you get settled in to this routine. We'll be watching for your updates and certainly wish you well throughout treatment all the way to SVR. Glad to have you on board!
It is a great protocol and trial. Hoping you get into the active meds first off. You mentioned no side effects and that's good to hear too. We'll be keeping a close eye on ya Michael! Stay in touch
Web, Yep you pulled a great Trial. Your going to kick its butt. Happy for you!! RC
Hi RC,
Thanks for the welcoming. Believe its referred as Polaris 3.
https://clinicaltrials.gov/ct2/show/NCT02607735
There's 3 arms I'm in the Deferred Treatment Subsidy group. This study just started and believe I might be one of the first to start the treatment. Its ongoing. So no early results. Will keep everyone informed. Did week 1 blood tests this last Tuesday.
-- Edited by webtomass on Saturday 30th of January 2016 05:18:50 AM
Welcome Webtomass. Glad you found us. Are you on the Polaris study? The combo you are on should do the trick! I can't wait to see the results of this trial, It's too bad we may not know the results for a year or better. Ask your study nurse how the others in the study are doing, are they clearing the virus early? Best of luck to you. RC
Hi Tig,
Thanks for the feedback. Yes I cleared a long list of nutrients and amino acids for this trial. I stopped many of them before I started. i.e. NAC, Milk Thistle, Trans-Resveratrol, and other liver herbal concoctions. My main source for nutrients during this trial are not uncommon for the main part. i.e. BCAA, B complex + B12 injection once a week, Vitamin D,E,A etc... But most of all PH balance +8 water lots of it and green juices and shakes. Lots of organic food. So far this is been a breeze frankly. I do take a sleeping pill every other day as this is my main liver symptoms... Can't fall asleep easily.
-- Edited by webtomass on Saturday 30th of January 2016 03:01:51 AM
Hi Michael,
Welcome to the group! Congratulations for getting on the trial, it's looking very promising. We've got another member that is on that trial too and doing well.
I have to ask, what kind of supplements are you taking and have you cleared them with the trial head? They often are deadset against the use of them during treatment and very particular during a trial. A good nutrient rich diet is great, make sure you're getting plenty of fluids too.
We've got some others here on or finished with V Pak, one relapse. They'll introduce themselves soon. Lots of good people here! Good luck...
Hi Everyone,
New treatment: Sofosbuvir, Velpatasvir, GS-9857. 1 pill a day with food. I'm in the Deferred Treatment Substudy. This will be the one for all genotypes that will hit the market later this year or early next year.
Its been 10 days and no side effects whatsoever. Vieira Pak + Ribavirin treatment relapsed @ 12 weeks EOT this past fall. I run, Inline Skate (over 50 K in last week) and consume lots of very good nutrients, supplements, and food. Hopefully this one does its magic. I'm doing all I can on my own but need this. Anybody else failed to cure on Viekira Pak? Feedback or insight from anyone would be gratefully appreciated.
-----------------------------------------
Contracted 1980's - blood transfusion
Relapse on first treatment - Viekira Pak + Ribavirin
Fibr. Stage F4 Severe Fibrosis
Fibroscan score 28 kpa
Genotype 4 - VL 233,000 at beginning of treatment
Current Treatment: Sofosbuvir, Velpatasvir, GS-9857
Gilead clinical trial - NCT02607735
Start: 01/19/16
12 weeks treatment
-- Edited by webtomass on Saturday 30th of January 2016 01:30:40 AM
-- Edited by webtomass on Saturday 30th of January 2016 01:34:58 AM
[edited dotted line to fit forum display]
-- Edited by wmlj1960 on Friday 1st of April 2016 05:33:05 AM