Re: something else instead of Vox (GS-9857)?, to add to a sof/vel treatment?? Other protease inhibitors/NS3/4A's aside from Vox? I don't know, I never did get back to researching all the NS3/4A's out there (much past the newer Vox), but ... there is "talk" about "other kinds of additives" such RG-101, even using RG-101 with sof/vel/vox, but RG-101's use is mainly in light of wanting to "shorten lengths of treatment" - the recent article that mentions it (possibly using RG-101 with sof/vel/vox) is over in "GT 3's and SOF/VEL trials". But we don't get to see too much data published yet on the likes of RG101 (nor on new protease inhibitors like Vox)!
RG101- is a different thing tho - "a host-targeting agent such as RG-101, an miR-122 antagonist". I don't know anything about these "course shortening/host-targeting agents" other than that. I recall Matt Chris (I believe) and Mallani were discussing RG101 a while ago, it seemed slow to be trialed/used.
As far as other NS3/4A's (protease inhibitors that are not vox), I never did get back to having another longer, deeper look at some of the other existing 3/4A's (and i did not research finding out how many 3/4A's in total are actually out there (below is something I posted, on another thread, work I never got back to, but lists 3/4A's:
... To get my head around gs9857(Vox), I have been trying to read up on "older" 1st generation NS3/4 (P.I.'s) protease inhibitors, such as: boceprevir, telaprevir. Some later and newer and second generational ones - danoprevir, vaniprevir, as well as paritaprevir, simeprevir, grazoprevir. With the development of same, much has to be sorted as far as me EVER understanding how to separate them apart within their "class"(s) of P.I.'s!! Big difs. between "aco-molar" (gs9857, now called VOX), subnanomolar (vaniprevir?), and macrocyclic (grazo)!!! Very tech. and well beyond me!! But you do glean some teeny tidbits along the way, like how some P'I';s must be doled out, not at all, or, "with care" in high classed decompensating livers ...
Sorry, I am not up on PI's, at all.
I liked the link Tig sent you on sof/vel/vox - if they are not already over in "GT 3's and SOF/VEL trials" - I should copy it over there, especially that one that nicely lists all the classes of C drugs - if that particular one isn't over there already, I will stick it there.
Now, mind you I am prejudiced, but I really liked tig's 3 suggested choices to you, sof/vel/GS-9857, OR, sof/vel/vox, OR, sof/vel/voxilprevir! hee hee
C.
Tig said
Jun 26, 2016
Have you given Zepatier any consideration? Might fit into a treatment regimen with Sovaldi.
Thanks Pablo. I'm so glad you did well on your treatment!! RC
Pablito said
Jun 26, 2016
If anyone deserves it you do.
robertsamx said
Jun 26, 2016
Lisa-- I will get UND
Tig-- The Sov-vel is coming soon to the market, but it will most likely be next year early like March-June to gey the vox That's why I'm looking for a vox substitute?
Loopy Lisa said
Jun 26, 2016
I'd love to see UND on your profile RC, I get the feeling this time you'll kick its ass (am I allowed to say that) this time.
We want to see you get through this and celebrate a happy ending!
Tig said
Jun 26, 2016
I have to disagree with you RC. You can't settle on 83, which will be a nice achievement, but if we're going to shoot for the stars, I'm going to have to change your expectations to at least 95 or 100. As fast as 60 is coming up, I'm thinking back 23 years and it wasn't that long ago. Since we're currently the same age, we've got to raise that expectation a bit and go for the gold, which just happens to be 95-100. I might be wearing diapers, but I'll be having fun with it!
As far as a combination I would like to see you on? That would be the Sovaldi/Velpatasvir/GS 9857 (Vox) triple.
One more thing, My liver Dr has run so many trials, and written tons of stuff on treatment, and has done and is doing trials and research on post transplant HCV treatments. I really feel that I have the best liver Dr west of the Mississippi River. My team in Seattle has my back!
RC
robertsamx said
Jun 26, 2016
Hi All-- As I said before, the transplant Dr wants me to cure asap, preferably before the switcharoo . Sof-vel will be out very soon. (Around 6-28-16) I think I need to hit the virus hard at 5-a,5-b,and 3/4. Week after next I will see my Liver Dr and see what we are going to do About treatment. I really want the new Gilead triple all my fellow 3's all cured on!! I need two DAA's and one PI and I think that would get the job done. In my perfect world it would go like this-get cured of the virus and as the little HCC's showed up we treat them,I stay compensating, live to be 83 and all will be good!
How about this treatment---- Gilead SOF-VEL. And some other 3/4 PI ??
Any ideas on which PI I should shoot for??
You guys are great! Thanks for chiming in! RC
Sydhanrahan said
Jun 26, 2016
Hi RC,
great to see that you have a number of options to work on. Eradicating those three little HCCs seems like a great place to start. Do they only take into account Meld score when determining transplant priority? Surely the HCCs would bump you up the waiting ladder some?
Im sure that there must be a drug regime now that would eradicate your Hep C either before, during or after treatment.
Good luck with it all. So pleased you have got the ball rolling so quickly.
Syd
Canuck said
Jun 26, 2016
Hey RC,
Further to any differing thinking (opinions) each of your specialty docs may hold on the premise/importance of treating/eradicating C first, or after, transplant, in regard to daa treatment for orthotopic liver transplant (OLT) patients - I keep seeing "this subject" popping up/being discussed/written about more frequently in different articles (the argument about whether to treat to erradicate C before, or after, transplant).
Article excerpts:
... Since 2013, we have entered the era of all oral direct acting antiviral agents for hepatitis C with sustained response rates that are consistently above 90% in nontransplant patients.
Recent findings The introduction of direct acting antiviral agents to posttransplant patients has demonstrated that sustained virologic response rates that are comparable with nontransplant patients can be achieved with excellent tolerability. The combinations of sofosbuvir/ribavirin, ledipasvir/sofosbuvir/ribavirin, daclatasvir/sofosbuvir/ribavirin, sofosbuvir/simeprevir ± ribavirin, and paritaprevir/ombitasvir/dasabuvir/ribavirin have all achieved high sustained response rates posttransplants. The previously dreaded complication of fibrosing cholestatic hepatitis C can now be effectively treated - the era of oral DAA agents has changed this, and at this time, those who are post-OLT with hepatitis C should be expected to achieve sustained response rate at similar rates as those who have not undergone OLT. . We have now entered the era of all oral DAA therapy for hepatitis and posttransplant patients can now achieve SVR rates not different from those who are not liver transplant recipients. the era of oral DAA agents has changed this, and at this time, those who are post-OLT with hepatitis C should be expected to achieve sustained response rate at similar rates as those who have not undergone OLT.
Summary In the era of all oral therapies, no patient who undergoes transplant for hepatitis C-related cirrhosis should have their graft fail because of recurrent hepatitis C. It is expected that long-term survival of those who undergo orthotopic liver transplant for HCV-related cirrhosis will be comparable to those without hepatitis C ...
I wanted to see sof/vel/vox listed in the line-up of daa's they talked about above tho!!!
Just info you are probably already well aware of, but that I thought is good news. C.
-- Edited by Canuck on Sunday 26th of June 2016 07:39:38 AM
JimmyK said
Jun 25, 2016
Thanks Tig. Neat calculator. I saved that one to mess with later.
JimmyK
Tig said
Jun 25, 2016
Jimmy,
I realize he isn't on the transplant list, but a MELD score can still be determined by lab values. It is used to determine placement on that list. We have had members that were classed in an ESLD category and the MELD score is used as a predictive value of disease progression and can be indicative of need and urgency for transplant. As RC said, it's as clear as mud right now... Guess I needed to be clearer.
"....Curious if you know what your MELD score is? I don't recall you mentioning that before. If you're not on a transplant list, that tells me you don't need to be....."
Brother I believe this is a matter of going after the Dragon first. Remove the Hep C then get on a transplant list.
I could be wrong, however they do not put you "formally" on a list until The Dragon is slayed.
That said, I believe he has a great team and this will all happen as it should and when it should.
JimmyK
Tig said
Jun 25, 2016
I agree that this is good news. Going forward with a viable plan is always a positive direction. If you're like me, you're ready to get this train rolling. I'm excited for you RC, this is going to work, I feel it!
Curious if you know what your MELD score is? I don't recall you mentioning that before. If you're not on a transplant list, that tells me you don't need to be. Once you get this next procedure complete, then it's on to some serious Dragon killing! Start polishing your armor, I'll provide you with my sword, I kept it sharp for the next warrior needing it!
wendyo said
Jun 25, 2016
Its a step in the right direction and good to see the the procedure is right around the corner. Thanks for the update RC and have a good weekend!
Linuxter said
Jun 24, 2016
Good to hear that you're getting closer RC, hope you get on the list soon but the orientation clears you of one more hurtle.
Prayers are with ya!
Thanks for the update, we're all thinking about ya.
Dave
JimmyK said
Jun 24, 2016
Well brother it is movement so it is welcome news.
You stay on my mind and in my prayers. Together we are going to do great things. ;)
Your Brother!
Jimmy
robertsamx said
Jun 24, 2016
Hi All. We just got off the phone with Swedish Hospital, I'm going over July 7 for transplant orientation- it's a day long class! Then on the 8'th I will have the T.A.C.E procedure done on three HCC's. At this point I am NOT on the transplant list. I'm hoping to see my Liver Dr on the 6th or 8th to discuss virus treatment options.That's all the news I have . RC
Loopy Lisa said
Jun 20, 2016
Damn it, I was hoping for a much better outcome. I hope you are coping ok? It is tough to receive such crappy news even with a decent road map and a way forward.
I hope you keep us updated on how this is going with you. We are all rooting that this is going to be resolved fast and effectively. I guess you are going straight on the transplant list.
Your journey is certainly a tough one and I respect how you handling this, I'm not sure I would be so brave.
I'm keeping my thoughts with you, and hoping you get that lucky break soon.
Re-Buy said
Jun 18, 2016
Hi rc.
I see that you have had a tough row to hoe the last while. A prayer from me for you may do more harm than good. I still have a handful of luck left in my stash that you are welcome to. I will send it right now by airmail. Good luck r.c.
Sydhanrahan said
Jun 18, 2016
Hi RC,
not sure why I so didn't expect this outcome.,whether it was my friends experience or just this feeling that we all have that you so don't deserve this.
Hopefully the localised chemo will work. In the meantime your calm positivity is a privilege to bear witness to. Let's hope this is just another bothersome bump on your road to wellness.
You are in all our thoughts.
Syd
Cinnamon Girl said
Jun 17, 2016
Just catching up on your latest update, RC, and I`m sure this wasn`t what you wanted to hear, it`s not what any of us wanted or expected to hear.
But moving along from that, it looks like your medical team has very quickly put together a new plan of action which is very good news, and also something very positive for you to adjust your focus towards.
I`m not around on the forum much at the moment, busy with other things, but you`re in my thoughts a lot and like everyone else here, I wish you all the very best.
Hang on it there while the mud is settling, and do your best to keep your spirits up, there are much better, healthier times ahead of you once this is all over...
JimmyK said
Jun 17, 2016
RC the bunch of grapes you described before did not leave me in a position where I could say this is not what I was expecting to hear.
However, the plan is music to my ears right now! That is a great way to go after this and to be honest, I am relieved to hear that this is the planned route.
This is extremely promising news and as far as I am concerned a true answer to many prayers on your behalf.
Hang in there brother! You have a great team!
JimmyK
wendyo said
Jun 17, 2016
Trying to take the good with the bad and remain upbeat. We are with you buddy! Your doc/team sounds pro active and hopeful so that's the route I'm going too. Keeping you in my prayers.
Canuck said
Jun 17, 2016
RC,
Sounds like the best plan, "a brand new slate" to provide the ultimate advantage. If your liver condition is "in the way", and HCC trumps all, then there comes, at some time, a non-sensical point of no return in trying to flog a sick liver into a "better" degree of wellness. If this IS what happens (that you get the prize of a brand new liver), you will have it made ... even if they only knock down your load prior to transplant, they will be able to treat a brand new liver for HCV SO much better, no? Given the disadvantages you have been encountering and forced to work through, I really am excited by the thought that you might soon have a whole, REALLY healthy liver - a huge, immediate improvement to work with. (Easy for me to say! eh - you know that I don't know enough about anything! - but I can only speak from my gut here!)
Is this what your doc meant when he said "get ready for a marathon"? TACE the HCC, lower your load and transplant? Or, IS there a possibility that they expect you to respond so well to TACE and C treatment that you might not get a "new" liver?? I am still a bit confused as to what the plan is going to end up being. But I am glad to hear they are considering all.
What do you think? Damned mud all-round!
A promise to you, C.
wmlj1960 said
Jun 17, 2016
I was expecting different news too but this plan sounds very promising. HCV free with a new healthy liver will be a fitting outcome for you after being such a fearless warrior. And it looks like they aren't planning on wasting any time so that's a definite plus. I know you are sick and tired of all the waiting you've had to do in the past. When the mud clears we will be here to cheer you on through this next battle. I'm going to really enjoy seeing you beat this thing in the end. Keep us up to date on your progress RC. Victory will be yours!
Linuxter said
Jun 16, 2016
Right there with ya RC, you DO have an excellent team of Doctors on this, at least they gave you a roadmap and have a solid plan going ahead, that's good news. Sounds like they are moving right ahead with the TACE and getting on the transplant list now will ensure that you can get one when you are ready for it. Curing the HCV becomes a priority, hopefully that will help you get the best of the best DAA's available ASAP. It's still a long road ahead but like you say, when it all clears a little you'll be moving ahead and have good direction. I'm so glad you have great Doctors, they are going to make this happen and we'll all be right here pullin' for ya. I too like the sound of your positive tone, you are still right on track and I would imagine getting on the transplant list is very reassuring. You've got this RC ... hang in there and thanks for keeping us posted, the more we know, the more we can help you get through this ... and get through it you will my friend.
Dave
Tig said
Jun 16, 2016
Well damn RC, we all wanted different news. The positive tone from you gives me a good feeling on the outcome though. You mentioned that your liver looked like a clump of grapes and he couldn't see back there very well. I'm glad they will get on top of this right away and then get your HCV destroyed ahead of the transplant. The pre transplant HCV protocol has been very successful in preventing reinfection of the new liver. Is there a chance you could receive a graft? They regenerate so fast, it might be possible. I've got enough for both of us if'n you need a piece! Slightly used, but available. Just say the word...
Keep us informed of everything and remember we'll be the one's cheering the loudest out here! We love ya Brother....
robertsamx said
Jun 16, 2016
Well, That didn"t go so well. Last months ablation did not get all the HCC tumor. There is still 50% of it remaining, and they found two more HCC tumor's. Next step Transcatheter arterial chemoembolization. (TACE). They will go after all three , most likely will happen in the next two or three weeks. They are also puting me on the transplant list because I'm such a good tumor maker!! The Surgeon wants me to treat the HCV, then have the transplant. The water's a little muddy right now, but as the mud settles to the bottom I will be able to see things more clearly, and will move forward. RC
Loopy Lisa said
Jun 16, 2016
Hey RC,
I just read this thread, I hope you have some good news for us. :D
That breakfast sounded delicious, I wouldn't mind that myself.
Thinking about you!
robertsamx said
Jun 16, 2016
Thanks everyone. Just had breakfast at hotel. French Toast, Turkey sausage, hot Seattle coffee !! Had a good nights sleep last night . Things are really looking up. Have the MRI at noon today, then see DR at 3:15 this afternoon. He will have MRI results then. Thank you everyone for your support. Will report back late afternoon. RC
Sydhanrahan said
Jun 16, 2016
Hi RC,
it must be tomorrow for you about now so I'm sending some positive vibes to Seattle and a certain person waiting for MRI results. You so deserve a chance to just come up for air and breathe for a while - you seem to be just wiping the last of the muck from one eye when you're hit in the face with some more. At least most of the post op pain has gone and since there is no sign of anything sinister12 months after my friends ablation, I'm hoping it will be a piece of cake for you too.
Thinking of you, Syd
Canuck said
Jun 16, 2016
RC,
Things are moving right along again - walking in there on your two feet, offending GB turfed out, all appropriate holes plugged up, one month post-op under your belt (hope your abd. IS getting less painful now), lab work done, MRI done, follow-up, check, check, check. Hope your appointment goes well and that you do get to ask ALL your questions, and get some answers. We'll wait for your news. Glad you are on the move again. C.
Pablito said
Jun 15, 2016
Robert - your attitude is to be admired. I don't think I would have handled everything you have had put on your plate with such good grace.
Pablo
wmlj1960 said
Jun 15, 2016
Good luck RC and keep us posted. I've got a feeling you'll be choosing your next and final HCV Tx regimen Friday. Prayers sent!
Linuxter said
Jun 15, 2016
You're doing great RC, best of luck with the testing, thoughts and prayers heading your way.
Onward ...
Dave
Tig said
Jun 15, 2016
We'll be waiting for your call, RC! Good luck Brother, next stop, the Treatment Train station. One day at a time, we've got your transfer paperwork ready to go...
wendyo said
Jun 15, 2016
Good luck RC
robertsamx said
Jun 15, 2016
Heading to Seattle this morning, blood work this afternoon, MRI tomorrow (thurs), Dr Appt Thursday afternoon. It's the one month post HCC ablation check up. All the puncture wounds have healed over in my abdomen. I'm walking pretty good on my foot. But both feet ache at the end of the day, but getting better. I will post the MRI results by Friday. RC
Loopy Lisa said
Jun 7, 2016
Bless you, I would feel depressed too if I had been through so much. Keep going x
robertsamx said
Jun 7, 2016
Thanks Jimmy- I never thought it would turn out this way, I just figured take the new hcv drugs,get a quick 16 week cure and get on with my life. I have always looked for the quick fix if you know what I mean, funny how things work out. I had to work hard as a kid growing up in a very dysfunctional household , nothing was easy,not to mention I had 5 sisters.
I have always took things head on, conquere, and pillage, and move on! This bump in the road has got my attention. I will fight,conquere, and pillage, and move on this time also!! RC
JimmyK said
Jun 7, 2016
RC there are many stories of treatment here on the Forum. Not taking away from any of the others, but yours by far establishes you as my idea of a true Warrior.
If you knew me better you would know I would never make such a statement lightly.
Much Respect!
JimmyK
wmlj1960 said
Jun 6, 2016
Your right RC, it is true that you have a better chance of beating hep c if you don't have cirrhosis and the same applies to having HIV too, but I did it and there is no reason you can't do it too. I've taken Zoloft and although it didn't do anything for pain, it did help with my depression. And as your doctor will confirm, there are plenty of other AD options if you don't feel like Zoloft is for you. You have reason to be depressed but you have reason to be hopeful also with all the treatment options available. Remember that it's darkest before the dawn and you have a bright future to look forward to. I believe we need the hard times in order to appreciate the good times and you've been through enough that your days ahead are bound to be very joyful. Keep pushin' on RC - you day is coming.
Linuxter said
Jun 6, 2016
Good to hear you voice your feelings RC, it's completely understandable that depression would be a part of what you are feeling now. Be sure and let the doctors know your concerns and how you're feeling, they undoubtedly expect it but may help you understand more of what's going on if you tell them. You've come a long way and will soon be moving past many of these obstacles and on to the next. You've got this RC and we are right along side you the whole way.
Our best wishes and prayers are with you,
Dave
Tig said
Jun 6, 2016
No doubt RC, you've been through the Boar War and are still standing Brother. Time to load the musket and get ready for the next idiot that comes along and thinks they can take you down. We'll be standing there with ya, ready to help you through it. I want to believe that you're going to get a good report from the doctor next week. You've come a long way in a month, no reason to think there haven't been great strides made in the right direction. You knew this was going to be a journey and you're well on your way. Let's get you through the next MRI and then back on that trial train. The Polaris trials are fabulous, I want you to keep that foremost in your mind. There's one out there for you and if it isn't a trial, then you're homing in on the approval of that protocol anyway. We should know something this month sometime.
If you continue to experience bouts of depression, talk to the good doctor about it. There's no reason to go around feeling that way. You've dealt with enough ups and downs. If you have the option of an AD, consider it. I did and it's working a hell of a lot better than without. The old Interferon treatments did me in and changed that one working brain cell I've got left into an unhappy one. Good ol Dr. Zoloft has brightened my day considerably and they're telling me it might even help with the pain, but they might just be pumping smoke up my skirt on that one! Whatever it takes Brother, investigate your options.
One word of caution though, don't go trying out for the place kicker position on the Seahawks just yet. Give it a couple months, lol!
wendyo said
Jun 6, 2016
I think feeling depressed is quite normal considering all you have been through. You have numerous issues all at once, it's not like you have hangnail and are being a whiny baby. I am glad to see you posting and sharing how you feel....step in the right direction with that new and improved foot
robertsamx said
Jun 6, 2016
Thanks Everyone for all the kind words and encouragement. The last 28 months have been tough. I can remember the day in Dec of 2013 when I found out about Clinical Trials, and this new drug Sofosbuvir! I sent out e-mails to trials, and finally got a phone number to a live person. she was a Trial nurse in San Francisco CA. She gave me a number to a trial nurse in Seattle WA. and I was enrolled by Jan 2014. After 30+ years I was going to get treated. I just knew this was going to cure me. Looking back , I wish I would have tried something early on and not have let my liver get cirrhosis, You have such a better chance at killing the virus if you don't have cirrhosis, The info on this forum is so valuable to people who need answers on there treatment choices. DONT WAIT----
It's been 3 weeks ago that I had my HCC ablation, and gallblader removed. 6 puncture points in my abdomen . It still hurts somewhat, but it's manageable. I thought that Laparoscopic surgery was suppose to be less painful? Really glad they dident need to cut me wide open. I'm going back to Dr next week for a follow up MRI to see if they got it all. My liver is in tough shape so I'v been down in the dumps about that. I have a lot of questions to ask the doctor next week, and will report back on them.
All in all I'm doing better, but have been very depressed, and I don't have a history of depression . Thanks. RC
wmlj1960 said
Jun 2, 2016
Thanks for the kind words but I'm just getting things done with what I have and I have no monopoly on doing that. Actually everyone here is a warrior getting things done to defeat the dragon. Some are having a smooth ride and some have had to fight like hell. Harvoni treated me well, but RC has had a tougher road to hoe and he is still kicking ass. He inspires me! I'm well beyond the hard part and am concentrating my efforts now to encourage those still fighting. RC you're going to win this just like I did but your SVR party is going to have a lot more fireworks and baloons. Just one more reason you'd better get that dancing foot back in tip top shape pretty quick. Racing, dancing and SVR is in your future.
Cinnamon Girl said
Jun 2, 2016
Hey Mike, all good wishes from me too with getting your new prosthetic socket, sounds like it`s going to be a big improvement for you.
And now I want to know... what crazy ideas are you and Tig hatching up for Plan B??!
RC,
Re: something else instead of Vox (GS-9857)?, to add to a sof/vel treatment?? Other protease inhibitors/NS3/4A's aside from Vox? I don't know, I never did get back to researching all the NS3/4A's out there (much past the newer Vox), but ... there is "talk" about "other kinds of additives" such RG-101, even using RG-101 with sof/vel/vox, but RG-101's use is mainly in light of wanting to "shorten lengths of treatment" - the recent article that mentions it (possibly using RG-101 with sof/vel/vox) is over in "GT 3's and SOF/VEL trials". But we don't get to see too much data published yet on the likes of RG101 (nor on new protease inhibitors like Vox)!
RG101- is a different thing tho - "a host-targeting agent such as RG-101, an miR-122 antagonist". I don't know anything about these "course shortening/host-targeting agents" other than that. I recall Matt Chris (I believe) and Mallani were discussing RG101 a while ago, it seemed slow to be trialed/used.
As far as other NS3/4A's (protease inhibitors that are not vox), I never did get back to having another longer, deeper look at some of the other existing 3/4A's (and i did not research finding out how many 3/4A's in total are actually out there (below is something I posted, on another thread, work I never got back to, but lists 3/4A's:
... To get my head around gs9857(Vox), I have been trying to read up on "older" 1st generation NS3/4 (P.I.'s) protease inhibitors, such as: boceprevir, telaprevir. Some later and newer and second generational ones - danoprevir, vaniprevir, as well as paritaprevir, simeprevir, grazoprevir. With the development of same, much has to be sorted as far as me EVER understanding how to separate them apart within their "class"(s) of P.I.'s!! Big difs. between "aco-molar" (gs9857, now called VOX), subnanomolar (vaniprevir?), and macrocyclic (grazo)!!! Very tech. and well beyond me!! But you do glean some teeny tidbits along the way, like how some P'I';s must be doled out, not at all, or, "with care" in high classed decompensating livers ...
Sorry, I am not up on PI's, at all.
I liked the link Tig sent you on sof/vel/vox - if they are not already over in "GT 3's and SOF/VEL trials" - I should copy it over there, especially that one that nicely lists all the classes of C drugs - if that particular one isn't over there already, I will stick it there.
Now, mind you I am prejudiced, but I really liked tig's 3 suggested choices to you, sof/vel/GS-9857, OR, sof/vel/vox, OR, sof/vel/voxilprevir! hee hee
Have you given Zepatier any consideration? Might fit into a treatment regimen with Sovaldi.
ZEPATIER
Thanks Pablo. I'm so glad you did well on your treatment!! RC
If anyone deserves it you do.
Lisa-- I will get UND
Tig-- The Sov-vel is coming soon to the market, but it will most likely be next year early like March-June to gey the vox That's why I'm looking for a vox substitute?
I'd love to see UND on your profile RC, I get the feeling this time you'll kick its ass (am I allowed to say that) this time.
We want to see you get through this and celebrate a happy ending!
I have to disagree with you RC. You can't settle on 83, which will be a nice achievement, but if we're going to shoot for the stars, I'm going to have to change your expectations to at least 95 or 100. As fast as 60 is coming up, I'm thinking back 23 years and it wasn't that long ago. Since we're currently the same age, we've got to raise that expectation a bit and go for the gold, which just happens to be 95-100. I might be wearing diapers, but I'll be having fun with it!
As far as a combination I would like to see you on? That would be the Sovaldi/Velpatasvir/GS 9857 (Vox) triple.
Sov/Vel/Vox Triple
Gilead Triple
NS3/4A Protease Inhibitor GS-9857
One more thing, My liver Dr has run so many trials, and written tons of stuff on treatment, and has done and is doing trials and research on post transplant HCV treatments. I really feel that I have the best liver Dr west of the Mississippi River. My team in Seattle has my back!
RC
Hi All-- As I said before, the transplant Dr wants me to cure asap, preferably before the switcharoo . Sof-vel will be out very soon. (Around 6-28-16) I think I need to hit the virus hard at 5-a,5-b,and 3/4. Week after next I will see my Liver Dr and see what we are going to do About treatment. I really want the new Gilead triple all my fellow 3's all cured on!! I need two DAA's and one PI and I think that would get the job done. In my perfect world it would go like this-get cured of the virus and as the little HCC's showed up we treat them,I stay compensating, live to be 83 and all will be good!
How about this treatment---- Gilead SOF-VEL. And some other 3/4 PI ??
Any ideas on which PI I should shoot for??
You guys are great! Thanks for chiming in! RC
Hi RC,
great to see that you have a number of options to work on. Eradicating those three little HCCs seems like a great place to start. Do they only take into account Meld score when determining transplant priority? Surely the HCCs would bump you up the waiting ladder some?
Im sure that there must be a drug regime now that would eradicate your Hep C either before, during or after treatment.
Good luck with it all. So pleased you have got the ball rolling so quickly.
Syd
Hey RC,
Further to any differing thinking (opinions) each of your specialty docs may hold on the premise/importance of treating/eradicating C first, or after, transplant, in regard to daa treatment for orthotopic liver transplant (OLT) patients - I keep seeing "this subject" popping up/being discussed/written about more frequently in different articles (the argument about whether to treat to erradicate C before, or after, transplant).
-- Edited by Canuck on Sunday 26th of June 2016 07:39:38 AM
Thanks Tig. Neat calculator. I saved that one to mess with later.
JimmyK
Jimmy,
I realize he isn't on the transplant list, but a MELD score can still be determined by lab values. It is used to determine placement on that list. We have had members that were classed in an ESLD category and the MELD score is used as a predictive value of disease progression and can be indicative of need and urgency for transplant. As RC said, it's as clear as mud right now... Guess I needed to be clearer.
TACE procedure + HCV treatment = Happier Liver & Dead Dragon
MELD Score
Brother I believe this is a matter of going after the Dragon first. Remove the Hep C then get on a transplant list.
I could be wrong, however they do not put you "formally" on a list until The Dragon is slayed.
That said, I believe he has a great team and this will all happen as it should and when it should.
JimmyK
I agree that this is good news. Going forward with a viable plan is always a positive direction. If you're like me, you're ready to get this train rolling. I'm excited for you RC, this is going to work, I feel it!
Curious if you know what your MELD score is? I don't recall you mentioning that before. If you're not on a transplant list, that tells me you don't need to be. Once you get this next procedure complete, then it's on to some serious Dragon killing! Start polishing your armor, I'll provide you with my sword, I kept it sharp for the next warrior needing it!
Its a step in the right direction and good to see the the procedure is right around the corner. Thanks for the update RC and have a good weekend!
Good to hear that you're getting closer RC, hope you get on the list soon but the orientation clears you of one more hurtle.
Prayers are with ya!
Thanks for the update, we're all thinking about ya.
Dave
Well brother it is movement so it is welcome news.
You stay on my mind and in my prayers. Together we are going to do great things. ;)
Your Brother!
Jimmy
Hi All. We just got off the phone with Swedish Hospital, I'm going over July 7 for transplant orientation- it's a day long class! Then on the 8'th I will have the T.A.C.E procedure done on three HCC's. At this point I am NOT on the transplant list. I'm hoping to see my Liver Dr on the 6th or 8th to discuss virus treatment options.That's all the news I have . RC
Damn it, I was hoping for a much better outcome. I hope you are coping ok? It is tough to receive such crappy news even with a decent road map and a way forward.
I hope you keep us updated on how this is going with you. We are all rooting that this is going to be resolved fast and effectively. I guess you are going straight on the transplant list.
Your journey is certainly a tough one and I respect how you handling this, I'm not sure I would be so brave.
I'm keeping my thoughts with you, and hoping you get that lucky break soon.
Hi rc.
I see that you have had a tough row to hoe the last while. A prayer from me for you may do more harm than good. I still have a handful of luck left in my stash that you are welcome to. I will send it right now by airmail. Good luck r.c.
Hi RC,
not sure why I so didn't expect this outcome.,whether it was my friends experience or just this feeling that we all have that you so don't deserve this.
Hopefully the localised chemo will work. In the meantime your calm positivity is a privilege to bear witness to. Let's hope this is just another bothersome bump on your road to wellness.
You are in all our thoughts.
Syd
Just catching up on your latest update, RC, and I`m sure this wasn`t what you wanted to hear, it`s not what any of us wanted or expected to hear.
But moving along from that, it looks like your medical team has very quickly put together a new plan of action which is very good news, and also something very positive for you to adjust your focus towards.
I`m not around on the forum much at the moment, busy with other things, but you`re in my thoughts a lot and like everyone else here, I wish you all the very best.
Hang on it there while the mud is settling, and do your best to keep your spirits up, there are much better, healthier times ahead of you once this is all over...
RC the bunch of grapes you described before did not leave me in a position where I could say this is not what I was expecting to hear.
However, the plan is music to my ears right now! That is a great way to go after this and to be honest, I am relieved to hear that this is the planned route.
This is extremely promising news and as far as I am concerned a true answer to many prayers on your behalf.
Hang in there brother! You have a great team!
JimmyK
Trying to take the good with the bad and remain upbeat. We are with you buddy! Your doc/team sounds pro active and hopeful so that's the route I'm going too. Keeping you in my prayers.
RC,
Sounds like the best plan, "a brand new slate" to provide the ultimate advantage. If your liver condition is "in the way", and HCC trumps all, then there comes, at some time, a non-sensical point of no return in trying to flog a sick liver into a "better" degree of wellness. If this IS what happens (that you get the prize of a brand new liver), you will have it made ... even if they only knock down your load prior to transplant, they will be able to treat a brand new liver for HCV SO much better, no? Given the disadvantages you have been encountering and forced to work through, I really am excited by the thought that you might soon have a whole, REALLY healthy liver - a huge, immediate improvement to work with. (Easy for me to say! eh - you know that I don't know enough about anything! - but I can only speak from my gut here!)
Is this what your doc meant when he said "get ready for a marathon"? TACE the HCC, lower your load and transplant? Or, IS there a possibility that they expect you to respond so well to TACE and C treatment that you might not get a "new" liver?? I am still a bit confused as to what the plan is going to end up being. But I am glad to hear they are considering all.
What do you think? Damned mud all-round!
A promise to you,
C.
I was expecting different news too but this plan sounds very promising. HCV free with a new healthy liver will be a fitting outcome for you after being such a fearless warrior. And it looks like they aren't planning on wasting any time so that's a definite plus. I know you are sick and tired of all the waiting you've had to do in the past. When the mud clears we will be here to cheer you on through this next battle. I'm going to really enjoy seeing you beat this thing in the end. Keep us up to date on your progress RC. Victory will be yours!
Right there with ya RC, you DO have an excellent team of Doctors on this, at least they gave you a roadmap and have a solid plan going ahead, that's good news. Sounds like they are moving right ahead with the TACE and getting on the transplant list now will ensure that you can get one when you are ready for it. Curing the HCV becomes a priority, hopefully that will help you get the best of the best DAA's available ASAP. It's still a long road ahead but like you say, when it all clears a little you'll be moving ahead and have good direction. I'm so glad you have great Doctors, they are going to make this happen and we'll all be right here pullin' for ya. I too like the sound of your positive tone, you are still right on track and I would imagine getting on the transplant list is very reassuring. You've got this RC ... hang in there and thanks for keeping us posted, the more we know, the more we can help you get through this ... and get through it you will my friend.
Dave
Well damn RC, we all wanted different news. The positive tone from you gives me a good feeling on the outcome though. You mentioned that your liver looked like a clump of grapes and he couldn't see back there very well. I'm glad they will get on top of this right away and then get your HCV destroyed ahead of the transplant. The pre transplant HCV protocol has been very successful in preventing reinfection of the new liver. Is there a chance you could receive a graft? They regenerate so fast, it might be possible. I've got enough for both of us if'n you need a piece! Slightly used, but available. Just say the word...
Keep us informed of everything and remember we'll be the one's cheering the loudest out here! We love ya Brother....
Well, That didn"t go so well. Last months ablation did not get all the HCC tumor. There is still 50% of it remaining, and they found two more HCC tumor's. Next step Transcatheter arterial chemoembolization. (TACE). They will go after all three , most likely will happen in the next two or three weeks. They are also puting me on the transplant list because I'm such a good tumor maker!! The Surgeon wants me to treat the HCV, then have the transplant. The water's a little muddy right now, but as the mud settles to the bottom I will be able to see things more clearly, and will move forward. RC
Hey RC,
I just read this thread, I hope you have some good news for us. :D
That breakfast sounded delicious, I wouldn't mind that myself.
Thinking about you!
Thanks everyone. Just had breakfast at hotel. French Toast, Turkey sausage, hot Seattle coffee !! Had a good nights sleep last night . Things are really looking up. Have the MRI at noon today, then see DR at 3:15 this afternoon. He will have MRI results then. Thank you everyone for your support. Will report back late afternoon. RC
Hi RC,
it must be tomorrow for you about now so I'm sending some positive vibes to Seattle and a certain person waiting for MRI results. You so deserve a chance to just come up for air and breathe for a while - you seem to be just wiping the last of the muck from one eye when you're hit in the face with some more. At least most of the post op pain has gone and since there is no sign of anything sinister12 months after my friends ablation, I'm hoping it will be a piece of cake for you too.
Thinking of you, Syd
RC,
Things are moving right along again - walking in there on your two feet, offending GB turfed out, all appropriate holes plugged up, one month post-op under your belt (hope your abd. IS getting less painful now), lab work done, MRI done, follow-up, check, check, check. Hope your appointment goes well and that you do get to ask ALL your questions, and get some answers. We'll wait for your news. Glad you are on the move again. C.
Robert - your attitude is to be admired. I don't think I would have handled everything you have had put on your plate with such good grace.
Pablo
Good luck RC and keep us posted. I've got a feeling you'll be choosing your next and final HCV Tx regimen Friday. Prayers sent!
You're doing great RC, best of luck with the testing, thoughts and prayers heading your way.
Onward ...
Dave
We'll be waiting for your call, RC! Good luck Brother, next stop, the Treatment Train station. One day at a time, we've got your transfer paperwork ready to go...
Good luck RC
Heading to Seattle this morning, blood work this afternoon, MRI tomorrow (thurs), Dr Appt Thursday afternoon. It's the one month post HCC ablation check up. All the puncture wounds have healed over in my abdomen. I'm walking pretty good on my foot. But both feet ache at the end of the day, but getting better. I will post the MRI results by Friday. RC
Bless you, I would feel depressed too if I had been through so much. Keep going x
Thanks Jimmy- I never thought it would turn out this way, I just figured take the new hcv drugs,get a quick 16 week cure and get on with my life. I have always looked for the quick fix if you know what I mean, funny how things work out. I had to work hard as a kid growing up in a very dysfunctional household , nothing was easy,not to mention I had 5 sisters.
I have always took things head on, conquere, and pillage, and move on! This bump in the road has got my attention. I will fight,conquere, and pillage, and move on this time also!! RC
RC there are many stories of treatment here on the Forum. Not taking away from any of the others, but yours by far establishes you as my idea of a true Warrior.
If you knew me better you would know I would never make such a statement lightly.
Much Respect!
JimmyK
Your right RC, it is true that you have a better chance of beating hep c if you don't have cirrhosis and the same applies to having HIV too, but I did it and there is no reason you can't do it too. I've taken Zoloft and although it didn't do anything for pain, it did help with my depression. And as your doctor will confirm, there are plenty of other AD options if you don't feel like Zoloft is for you. You have reason to be depressed but you have reason to be hopeful also with all the treatment options available. Remember that it's darkest before the dawn and you have a bright future to look forward to. I believe we need the hard times in order to appreciate the good times and you've been through enough that your days ahead are bound to be very joyful. Keep pushin' on RC - you day is coming.
Good to hear you voice your feelings RC, it's completely understandable that depression would be a part of what you are feeling now. Be sure and let the doctors know your concerns and how you're feeling, they undoubtedly expect it but may help you understand more of what's going on if you tell them. You've come a long way and will soon be moving past many of these obstacles and on to the next. You've got this RC and we are right along side you the whole way.
Our best wishes and prayers are with you,
Dave
No doubt RC, you've been through the Boar War and are still standing Brother. Time to load the musket and get ready for the next idiot that comes along and thinks they can take you down. We'll be standing there with ya, ready to help you through it. I want to believe that you're going to get a good report from the doctor next week. You've come a long way in a month, no reason to think there haven't been great strides made in the right direction. You knew this was going to be a journey and you're well on your way. Let's get you through the next MRI and then back on that trial train. The Polaris trials are fabulous, I want you to keep that foremost in your mind. There's one out there for you and if it isn't a trial, then you're homing in on the approval of that protocol anyway. We should know something this month sometime.
If you continue to experience bouts of depression, talk to the good doctor about it. There's no reason to go around feeling that way. You've dealt with enough ups and downs. If you have the option of an AD, consider it. I did and it's working a hell of a lot better than without. The old Interferon treatments did me in and changed that one working brain cell I've got left into an unhappy one. Good ol Dr. Zoloft has brightened my day considerably and they're telling me it might even help with the pain, but they might just be pumping smoke up my skirt on that one! Whatever it takes Brother, investigate your options.
One word of caution though, don't go trying out for the place kicker position on the Seahawks just yet. Give it a couple months, lol!
I think feeling depressed is quite normal considering all you have been through. You have numerous issues all at once, it's not like you have hangnail and are being a whiny baby. I am glad to see you posting and sharing how you feel....step in the right direction with that new and improved foot
Thanks Everyone for all the kind words and encouragement. The last 28 months have been tough. I can remember the day in Dec of 2013 when I found out about Clinical Trials, and this new drug Sofosbuvir! I sent out e-mails to trials, and finally got a phone number to a live person. she was a Trial nurse in San Francisco CA. She gave me a number to a trial nurse in Seattle WA. and I was enrolled by Jan 2014. After 30+ years I was going to get treated. I just knew this was going to cure me. Looking back , I wish I would have tried something early on and not have let my liver get cirrhosis, You have such a better chance at killing the virus if you don't have cirrhosis, The info on this forum is so valuable to people who need answers on there treatment choices. DONT WAIT----
It's been 3 weeks ago that I had my HCC ablation, and gallblader removed. 6 puncture points in my abdomen . It still hurts somewhat, but it's manageable. I thought that Laparoscopic surgery was suppose to be less painful? Really glad they dident need to cut me wide open. I'm going back to Dr next week for a follow up MRI to see if they got it all. My liver is in tough shape so I'v been down in the dumps about that. I have a lot of questions to ask the doctor next week, and will report back on them.
All in all I'm doing better, but have been very depressed, and I don't have a history of depression . Thanks. RC
Thanks for the kind words but I'm just getting things done with what I have and I have no monopoly on doing that. Actually everyone here is a warrior getting things done to defeat the dragon. Some are having a smooth ride and some have had to fight like hell. Harvoni treated me well, but RC has had a tougher road to hoe and he is still kicking ass. He inspires me! I'm well beyond the hard part and am concentrating my efforts now to encourage those still fighting. RC you're going to win this just like I did but your SVR party is going to have a lot more fireworks and baloons. Just one more reason you'd better get that dancing foot back in tip top shape pretty quick. Racing, dancing and SVR is in your future.
Hey Mike, all good wishes from me too with getting your new prosthetic socket, sounds like it`s going to be a big improvement for you.
And now I want to know... what crazy ideas are you and Tig hatching up for Plan B??!
Good luck!