Merck 3682B which is combination of MK 5172, MK 5682, MK 8408
angelseven said
Mar 15, 2016
well best of luck Matt and thanks for that detailed information... I am going to hold out for one year maybe two, I have no idea, I am sure with the added riba you will kick butt, I just know riba would not be good for me
Peace, angel/connie
JimmyK said
Mar 14, 2016
Thanks Matt, I appreciate the comments.
My mutations have been identified and my Doctor has little concern for those based on which ones they are. His only concern is taking Omeprazol so the dosing guidelines of fasted conditions and at the same time are very important. He feels that plus the 24 week hammer w/o RBV should do the trick.
If the Insurance folks green light me I am on it. As always I will keep everyone up to date.
Thanks again!
JimmyK
Matt Chris said
Mar 14, 2016
Hey Jimmy & Angel7
Having been a particapant in Abbvie's Cilnical trial for the V-Pack with RIBA and relapsed at EOT week 4 then waited for 1 1/2 years for the Gilead's "Harvoni" the time between treatments allows you to ponder all the options and that's really a good thing.
If you wait until Gilead's new combo gets approved in June, and get 12 weeks it might be the ticket. Or the 24 weeks of "Harvoni" with or without RIBA would likely do the task.
On a 2nd treatment attempt with DAA's one has to consider RAVs on the NS5 address's as the most important consideration because of there durability. Choosing a DAA that covers the mutated HCV is very important, therefore knowing what your mutations are is necessary.
In my case Abbvie finally released my RAV's data after my repeated request, which disclosed that I had none. (Hard to beleive I know) so I decided to cover myself by requesting my Doctor for 24 weeks of "Harvoni with RIBA, which he agreed but felt that 800 mg per day was sufficient. My thinking was, one more time with full guns loaded on the Dragon just in case I had any leftover RAV's that Abbvie wasn't telling me about.
Jimmy & Angel if you go with the 24 Weeks approach IMO it will work, whether it be "Harvoni or the new Gilead DAA, adding RIBA would be insurance for very little extra cost if your body can handle it.
matt
JimmyK said
Mar 12, 2016
To be honest, if my Doctor, who is incredibly well respected in the field, were to approach me with such, I would do so without batting an eye. But the fact it was he who approached me on the 24 weeks of Harvoni, I am going with that for the same reason. That being a deep respect for this mans knowledge and experience.
A Doctor who is so well published definitely has my ear and confidence. I feel very fortunate to have him caring for Carolyn and me.
So baring the Insurance Company coming back with a no, it's off to see the Wizard via the Harvoni Brick Road.
JimmyK
angelseven said
Mar 12, 2016
why not hold out for sovaldi and GS5816 (Velpatisvir (sp?) set for approval by fda the end of June??
JimmyK said
Mar 11, 2016
Brother Tig, many thanks.
I have read so much in the last six months that I have become convinced that the new DAA's do not cause damage to the eyes. The endless hours of reading up on them does. LOL
Thanks bro!
JimmyK
Tig said
Mar 11, 2016
Jimmy,
This is 4 years old but is very interesting nonetheless. It has some interesting information on the NS5A, 5B and the NS3 mutations. Look at the contributors to these findings, impressive credentials. Seems they were onto this stuff and fairly accurately years ago. Trials take a long time when you're waiting for the answer, yet here they are....
This is technical but I believe you can all gain some good history and useful info from it.
I strongly suggest you get back to Baylor, yes! Sussman knows this stuff quite well. Q80k is in the NS3 class and if that is the only one you have you could easily jump on Harvoni again. Sussman is pushing me into Harvoni x 24 no Riba and I have Q8k and D168Y at NS3 and M28T at NS5A.
Harvoni has shown to nail them if proper time is allotted. The resistance is weak. Q80K has no predicted resistance to the components of Harvoni.
There were many that failed 8 weeks that later cleared with 12 or 24.
Stick with Baylor.
JimmyK
angelseven said
Mar 11, 2016
No I never found out and my hepatologist was not interested in the resistance testing.... I am going to switch over to my old doctor at Baylor and see what he says about the resistance testing... I am in no rush. No one knows what caused the failure.. I do know I have the Q80K variant...there appears to be a lot of unknowns regarding resistance...I am sure I will eventually get rid of this virus with all the new drugs coming out!!! I must be patient considering my liver damage is so minimal after having this virus for over 40 years.
peace, angelseven
Matt Chris said
Mar 11, 2016
Hey Angel7
Did you ever find out what caused your relapse, specifically which if any Ravs / mutations / address caused the failure?
Reason I ask it may guide your decision on which DAA to choose.
matt
angelseven said
Mar 11, 2016
This trial is not happening for me now... discovered I could get riba...............peace to all
angelseven said
Mar 10, 2016
yes thanks, I will try to work something out... !!!!
Tig said
Mar 10, 2016
Angel7,
Does it not say that the 16 week tx is specifically with Ribavirin? Appears that way to me unless I'm missing something. The only Riba free course is the 24 week arm. I would mention that you won't accept the 16 week treatment and see if that's a deal breaker. Might make your decision an easy one. Good luck!
JimmyK said
Mar 10, 2016
Not really. With or without means just that and tell her you are a without kind of gal! ;)
angelseven said
Mar 10, 2016
I just got the info from her and it says with or without riba, I will not take riba..... soooo I think that puts an end to that trial
JimmyK said
Mar 10, 2016
When you go in she will have a packet of stuff for you to read and agree to. They run a tight ship. She is very cool. LOL tell her the dude with the Red Hair rejected for Omeprazole said hey!
JimmyK
angelseven said
Mar 10, 2016
the Baylor gal says 16 or 24 weeks, no riba... I will not take riba... I am waiting for her to send me the information, thanks for the link!! I haven't started digging around on line yet!!!
The guy is fantastic and if you want someone that will dig he is your guy. He has published some extremely impressive work and 35 years direct experience.
I see him in The Woodlands now as does my wife. I would not trust her care to anyone else in Houston.
Go for it and Welcome Sister!
JimmyK
Good Lord I can't even spell CARE. LOL
-- Edited by JimmyK on Thursday 10th of March 2016 10:03:34 PM
-- Edited by JimmyK on Thursday 10th of March 2016 10:04:43 PM
angelseven said
Mar 10, 2016
he was my doctor in 2011!!! I switched because I had trouble getting anyone on the phone... maybe things have changed in that respect, looks like I will be back to see him as I believe they will take my new marketplace insurance "community health choice"
JimmyK said
Mar 10, 2016
Greetings,
I will say this, that facility you are at is incredible. I am one floor below you seeing Doctor Sussman. If it were me I would absolutely jump on it.
JimmyK
Sydhanrahan said
Mar 10, 2016
I know nothing about the drugs being offered, just a lot about the dragon's srealthy footsteps as it sneaks around your body doing a little bit of damage here, a little there.
if other more educated members say yes, I can't see what you have got to lose except certain ongoing liver damage in the future. If they think something more effective is just around the corner and you're guaranteed to get it, thats the only reason I'd wait.
goid luck with your choice,
Syd
angelseven said
Mar 10, 2016
so glad you are undetected following harvoni!!!! I know you are happy, I will continue to contemplate this!!
Gracie said
Mar 10, 2016
That's a hard call Angel but if it were me, I'd go for it. The liver damage has a way of sneaking up on you and these new drugs are pretty amazing. Especially with hardly any reported side effects.
angelseven said
Mar 10, 2016
I relapsed one year ago after 8 weeks of harvoni... next month I start with some cruddy Marketplace insurance until I get medicare in 3 years
I got a call from the Baylor Clinical trial folks in Houston and i could start a trial as soon as I want... the drug is Merck.... MK 3682B which is a combination of MK 5172, MK 3682, and MK 8408... in phase 2, people are reporting no side effects, although maybe slight headache but there are not many on it , you take 2 pills once a day for either 16 or 24 weeks... I am waiting for more information.. for genotype 1.. anyone that knows anything about this , please advise.. I haven't started looking things up yet, pretty sure i have heard of some of those drugs... I DUNNO.. for people that failed harvoni or merck's other drug (not sure what that is), you can have cirrhosis
I am so on the fence about this because my blood work is all good. My liver enzymes aren't even elevated and a fibroscan now says I have .5 fibrosis... my liver must have healed while I was cleared of the virus for 10 weeks while on harvoni...
If anyone knows anything about this combo, please let me know
well best of luck Matt and thanks for that detailed information... I am going to hold out for one year maybe two, I have no idea, I am sure with the added riba you will kick butt, I just know riba would not be good for me
Peace, angel/connie
Thanks Matt, I appreciate the comments.
My mutations have been identified and my Doctor has little concern for those based on which ones they are. His only concern is taking Omeprazol so the dosing guidelines of fasted conditions and at the same time are very important. He feels that plus the 24 week hammer w/o RBV should do the trick.
If the Insurance folks green light me I am on it. As always I will keep everyone up to date.
Thanks again!
JimmyK
Hey Jimmy & Angel7
Having been a particapant in Abbvie's Cilnical trial for the V-Pack with RIBA and relapsed at EOT week 4 then waited for 1 1/2 years for the Gilead's "Harvoni" the time between treatments allows you to ponder all the options and that's really a good thing.
If you wait until Gilead's new combo gets approved in June, and get 12 weeks it might be the ticket. Or the 24 weeks of "Harvoni" with or without RIBA would likely do the task.
On a 2nd treatment attempt with DAA's one has to consider RAVs on the NS5 address's as the most important consideration because of there durability. Choosing a DAA that covers the mutated HCV is very important, therefore knowing what your mutations are is necessary.
In my case Abbvie finally released my RAV's data after my repeated request, which disclosed that I had none. (Hard to beleive I know) so I decided to cover myself by requesting my Doctor for 24 weeks of "Harvoni with RIBA, which he agreed but felt that 800 mg per day was sufficient. My thinking was, one more time with full guns loaded on the Dragon just in case I had any leftover RAV's that Abbvie wasn't telling me about.
Jimmy & Angel if you go with the 24 Weeks approach IMO it will work, whether it be "Harvoni or the new Gilead DAA, adding RIBA would be insurance for very little extra cost if your body can handle it.
matt
To be honest, if my Doctor, who is incredibly well respected in the field, were to approach me with such, I would do so without batting an eye. But the fact it was he who approached me on the 24 weeks of Harvoni, I am going with that for the same reason. That being a deep respect for this mans knowledge and experience.
https://www.researchgate.net/profile/Norman_Sussman2/publications
A Doctor who is so well published definitely has my ear and confidence. I feel very fortunate to have him caring for Carolyn and me.
So baring the Insurance Company coming back with a no, it's off to see the Wizard via the Harvoni Brick Road.
JimmyK
why not hold out for sovaldi and GS5816 (Velpatisvir (sp?) set for approval by fda the end of June??
Brother Tig, many thanks.
I have read so much in the last six months that I have become convinced that the new DAA's do not cause damage to the eyes. The endless hours of reading up on them does. LOL
Thanks bro!
JimmyK
Jimmy,
This is 4 years old but is very interesting nonetheless. It has some interesting information on the NS5A, 5B and the NS3 mutations. Look at the contributors to these findings, impressive credentials. Seems they were onto this stuff and fairly accurately years ago. Trials take a long time when you're waiting for the answer, yet here they are....
This is technical but I believe you can all gain some good history and useful info from it.
https://www.iasusa.org/sites/default/files/tam/20-4-139.pdf
I strongly suggest you get back to Baylor, yes! Sussman knows this stuff quite well. Q80k is in the NS3 class and if that is the only one you have you could easily jump on Harvoni again. Sussman is pushing me into Harvoni x 24 no Riba and I have Q8k and D168Y at NS3 and M28T at NS5A.
Harvoni has shown to nail them if proper time is allotted. The resistance is weak. Q80K has no predicted resistance to the components of Harvoni.
There were many that failed 8 weeks that later cleared with 12 or 24.
Stick with Baylor.
JimmyK
No I never found out and my hepatologist was not interested in the resistance testing.... I am going to switch over to my old doctor at Baylor and see what he says about the resistance testing... I am in no rush. No one knows what caused the failure.. I do know I have the Q80K variant...there appears to be a lot of unknowns regarding resistance...I am sure I will eventually get rid of this virus with all the new drugs coming out!!! I must be patient considering my liver damage is so minimal after having this virus for over 40 years.
peace, angelseven
Hey Angel7
Did you ever find out what caused your relapse, specifically which if any Ravs / mutations / address caused the failure?
Reason I ask it may guide your decision on which DAA to choose.
matt
This trial is not happening for me now... discovered I could get riba...............peace to all
yes thanks, I will try to work something out... !!!!
Angel7,
Does it not say that the 16 week tx is specifically with Ribavirin? Appears that way to me unless I'm missing something. The only Riba free course is the 24 week arm. I would mention that you won't accept the 16 week treatment and see if that's a deal breaker. Might make your decision an easy one. Good luck!
Not really. With or without means just that and tell her you are a without kind of gal! ;)
I just got the info from her and it says with or without riba, I will not take riba..... soooo I think that puts an end to that trial
When you go in she will have a packet of stuff for you to read and agree to. They run a tight ship. She is very cool. LOL tell her the dude with the Red Hair rejected for Omeprazole said hey!
JimmyK
the Baylor gal says 16 or 24 weeks, no riba... I will not take riba... I am waiting for her to send me the information, thanks for the link!! I haven't started digging around on line yet!!!
Read.
https://www.clinicaltrials.gov/ct2/show/NCT02613403
;)
The guy is fantastic and if you want someone that will dig he is your guy. He has published some extremely impressive work and 35 years direct experience.
I see him in The Woodlands now as does my wife. I would not trust her care to anyone else in Houston.
Go for it and Welcome Sister!
JimmyK
Good Lord I can't even spell CARE. LOL
-- Edited by JimmyK on Thursday 10th of March 2016 10:03:34 PM
-- Edited by JimmyK on Thursday 10th of March 2016 10:04:43 PM
he was my doctor in 2011!!! I switched because I had trouble getting anyone on the phone... maybe things have changed in that respect, looks like I will be back to see him as I believe they will take my new marketplace insurance "community health choice"
Greetings,
I will say this, that facility you are at is incredible. I am one floor below you seeing Doctor Sussman. If it were me I would absolutely jump on it.
JimmyK
I know nothing about the drugs being offered, just a lot about the dragon's srealthy footsteps as it sneaks around your body doing a little bit of damage here, a little there.
if other more educated members say yes, I can't see what you have got to lose except certain ongoing liver damage in the future. If they think something more effective is just around the corner and you're guaranteed to get it, thats the only reason I'd wait.
goid luck with your choice,
Syd
so glad you are undetected following harvoni!!!! I know you are happy, I will continue to contemplate this!!
That's a hard call Angel but if it were me, I'd go for it. The liver damage has a way of sneaking up on you and these new drugs are pretty amazing. Especially with hardly any reported side effects.
I relapsed one year ago after 8 weeks of harvoni... next month I start with some cruddy Marketplace insurance until I get medicare in 3 years
I got a call from the Baylor Clinical trial folks in Houston and i could start a trial as soon as I want... the drug is Merck.... MK 3682B which is a combination of MK 5172, MK 3682, and MK 8408... in phase 2, people are reporting no side effects, although maybe slight headache but there are not many on it , you take 2 pills once a day for either 16 or 24 weeks... I am waiting for more information.. for genotype 1.. anyone that knows anything about this , please advise.. I haven't started looking things up yet, pretty sure i have heard of some of those drugs... I DUNNO.. for people that failed harvoni or merck's other drug (not sure what that is), you can have cirrhosis
I am so on the fence about this because my blood work is all good. My liver enzymes aren't even elevated and a fibroscan now says I have .5 fibrosis... my liver must have healed while I was cleared of the virus for 10 weeks while on harvoni...
If anyone knows anything about this combo, please let me know
Peace, angelseven