Hep C Discussion Forum

Tig · Admin

ALL ABOARD THE VOSEVI TRAIN

mcmaklin · Senior Member

Thank you so much, I would like to ask more, How many people were enrolled in Trials with VOSEVI who had previously DAA treatment? I was takin Viekira/Exviera, my liver is F1-F2.

In Polaris IV there were no of them? So how can I know if Vosevi works for my L31M?

robertsamx · Guru

Mac, Sorry about my oversight. I have corrected my post. RC

Canuck · Guru

Hey, Hi Mak!

Good to see a post from you!

I replied to you over in your thread ... "Trial for people who failed DAA treatment ".... smile C.

mcmaklin · Senior Member

I Am not treatnet naive. I was taking viekira exviera. I am confused.

Compl. Viekira no Riba Nov2015. 1b,TT,F1, 1400000U start of treatm. After 2 weeks 120U. After a month below possib of detect. After 3 months UND.3EOT UND. 4wEOT RELAPSED,14Dec2016 VL 27000 IU.mL,Feb 2016 VL 24296 IU/mL, May 2016 VL 106675 IU/mL .L31M in NS5A.Y93H not pres. No NS3 D168/A/F/H/N/Y

-- Edited by Tig on Friday 20th of April 2018 05:31:46 AM

robertsamx · Guru

Hi Mac. Good questions. First off you are a 1b and as you know that is the most positive responding geno type to treatment there is. In laymens terms there are (5) sites on each HCV virus that are absolute in order for the virus to replicate.They are follows,NS3,NS4A,NS4B,NS5A,NS5B. If we can alter any one of these 5 sites by means of chemical degradation (sof) (vel) (vox) the virus has a hard time replicateing itself. Its a lot more complicated than what i have said above but this is how I interpret the scientific mumbo-jumbo. Think of the virus as a wheel with 5 spokes and each spoke represents one of the NS sites. It stands to reason that the more spokes you can knock off the wheel the better the chance of the wheel falling off.

SOF hits the NS5B spoke VEL hits the NS5A spoke VOX hits the NS3/4 spoke

RC

-- Edited by robertsamx on Friday 20th of April 2018 12:43:59 AM

mcmaklin · Senior Member

Tig wrote:
Hey Mak,
I see no benefit from adding 1 or 2 weeks of Ribavirin to anything, especially Vosevi. Theres no supporting evidence. They do have evidence that it doesnt improve the rates of success when added. It does cause side effects, some harsh. Why go through that if theres no proof that youre benefiting from it? I would do the 12 weeks of Vosevi and give the Riba a pass. Thats just my opinion, Mak. You have to discuss all these thoughts with your doctor and come up with whats best for you. The reports coming in for Vosevi are very good. Im confident that once you get started, youll see how good this stuff is! Good luck

Hello Thank you. It may happen I will start my treatment in October. But Riba is not funded with Vosevi so I will probably do not need it. Please let me know one thing that concern me a lot. The most popular genotype where all those trials were was 1a not 1b that I have - which differ a lot. And i have L31M and 1b but those scoentific papers mention usually L31V or something different. There are not so many people with L31M so how you know Vosevi will work with no Riba or generally?

2. I know somebow that my variabt is. suspectible for Velpatasvir, I know it has been tested

3. Why adding Vox to Veloatasvir and Sofosbuvir is so important here?

Cinnamon Girl · Guru

Wow RC, I just read your post... CONGRATULATIONS!!!!

It`s been a long time coming, and I`m so happy for you!!!

Wishing all the best for you and Chris... now you really can start living your lives again!

~ Jill

wendyo · Guru

Fabulous news RC. Bout time! Enjoy and hope you and Chris can start some new adventures.

Lindsmatt52 · Senior Member

Just saw your post R.C. That is such wonderful news!! Congrats!! So well deserved!!

Scruffy · Guru

YES!!!!!!! NICE

Observer · Guru

YAY. YAY. Hurray. and YAY.

Congratulations and Bravo

Canuck · Guru

Big hugs, to you and CC, it couldn't have happened to a nicer more well-deserving guy! FINALLY, you are 3-less (officially) FOREVER! Welcome to the club, it should have been you first, but, what a reward now, for all you have and are going through. Vosevi all the way! I wished so much that you could have enjoyed this momentous day, sooner, but, it just couldn't be - it was meant to happen today! Oh, glorious 12 week SVR, AND, with a beautiful young healthy liver again. You are firing on all cyclinders again. I am hoping that today feels like the joyous culmination of how many times your life has been saved - that can only help take the sting out of all the edeavours you are working your way back from today. Thank you Polaris 5, and thank-you RC for being my promise-keeper and such a model for all of us. Man you do things in big ways! My hero. ;) C.

Tig · Admin

Tig · Admin

WOOHOO!!!

Congratulations, RC! I’m beside myself with joy for you, Brother!

robertsamx · Guru

Hi all, After 4-1/2 years,3 treatments & a liver transplant I can finally claim

SVR-12

I did 16 weeks SOF/RIBA in early 2014, 12 weeks SOF/RIBA/PEG in late 2015, L/T Aug-2017 and 16 weeks VOSEVI/RIBA fall of 2017. I want to thank everyone on this forum for all your help and support.RC

Observer · Guru

Thanks for the update Robert. Glad that your immune system is strone enough for you to get off prednisone, that stuff is pretty awful (in my opinion). And am super glad you are walking everyday.

Im looking forward to reading your good news on Friday.

A

Canuck · Guru

By every hard-won inch, and every mile RC, you are doing it! We all await your very good news due this coming this Friday. smile C.

wendyo · Guru

What a long strange trip this has been for you RC! Great news that you are off those nasty meds. In my prayers for good results on these next labs. And as always, take care of U!

Tig · Admin

Thanks for the great update, RC! I’m thrilled to hear the good news. You mentioned how you wanted to avoid the Valcyte and you did, congrats on that and stopping the Prednisone. You must be noticing a significant difference from those changes.

Think about where you were just a year ago, things were let’s say, scary. You handled all of this like a pro. I don’t know if I could’ve shown the same bravery and confidence. You really have my respect Brother! You showed me how it’s done. I’m sure I can speak for all of us when I say that!

I‘m looking forward to your official EOT +12 viral load. I have no doubt you’ll be sharing it with us as SVR12. I’ll be needing your help to pull myself off the ceiling!

Well done my friend, well done...

robertsamx · Guru

Hi All. Its been a while, so here goes- I have Been chasing my blood work all over the place and I finally got the W.B.C and neutrophils in the average (normal)range. The HGB is almost in the normal range. The CMV went positive again and I refused to take the nasty Drug Valcyte ( its a tough drug on your gut) so they took me off of prednisone to see if my own immune system could kill it and that workd. Hopefully no more prednisone ever- its hard on your body. I had to have one or two more neupogen shots. Just after i stoped the prednisone I gained 7.5 pounds of water, just the opposite of what you might think would have happened and we think that tanked my Platelets to 66 They drooped from 170 to 66 in just one week. So we will see how thats doing on tomorrows blood work. Im walking 1.5 miles a day the last 4 days and all in all starting to feel much better. its going to be a long hall to get where i was before L/T. I will be 7 mo post transplant tomorrow on th 13th, and tomorrow will be 12 weeks post treatment. My T/P coordinator just called as I am typing this and wanted to remind me to have the HCV load tested tomorrow ( like I needed a reminder)!! I will have the results by this Friday and will post Friday nite on the 12 week Post results.I have been looking in on everyone, but have just been exhausted and sore. things are looking up. RC

Canuck · Guru

Gee RC,

That is an excellent spreadsheet system you have going there. Very clear and very informative. Much like your handwritten one posted last, this one, "printed" thus, is a very good way to keep track of all the records, trendings and complexities of the tests and numbers.

Very glad to see that the CVM was low load, went UND quite quickly, and that that anti-viral could also be d/c sooner than later. One less thing. Happy for to see your GFR back in friendly territory now, and your improving hgb's.

I hope the further distance from the riba you get, the better you will feel. Maybe they are decreasing prednisone?

Do you they provide these spreadsheets for you, in any way, or are you having to laboriously log all your own labs onto this format?

Ya, wow, what you and Wendy said ... holi-cow - 6 months! smile C.

-- Edited by Canuck on Monday 12th of February 2018 03:27:29 AM

Lindsmatt52 · Senior Member

Hi RC-You are such a trooper! Glad you're doing so well and pray that you stop having the unpleasant side effects from the medicines soon!

Tig · Admin

Hey Mak,

I see no benefit from adding 1 or 2 weeks of Ribavirin to anything, especially Vosevi. Theres no supporting evidence. They do have evidence that it doesn’t improve the rates of success when added. It does cause side effects, some harsh. Why go through that if there’s no proof that you’re benefiting from it? I would do the 12 weeks of Vosevi and give the Riba a pass. That’s just my opinion, Mak. You have to discuss all these thoughts with your doctor and come up with what’s best for you. The reports coming in for Vosevi are very good. I’m confident that once you get started, you’ll see how good this stuff is! Good luck

wendyo · Guru

I cannot believe it has been 6 months RC. Praying for continued good health!

mcmaklin · Senior Member

Can taking Riba for 1 week only or 2 weeks with Vosevi do worse things for SVR than no taking it at all? Or you have to take it for at least 4 weeks Otherwise you may do worse things than not to take at all. With Vosevi.

-- Edited by mcmaklin on Sunday 11th of February 2018 04:36:16 AM

Tig · Admin

Hey RC,

It’s good to hear from you! Those labs are looking very good as well. I‘m glad that you can rely on the Neupogen when necessary. It really made a positive difference for me.

I agree with your doctor on the rates of SVR12 after SVR4. .5-1% difference. I don’t know why they don’t revise those guidelines. At least we’re in the know and we know what we know! You know? Of course!

Steady as it goes, Brother. Looking forward to your next update!

robertsamx · Guru

Hi All, The last few weeks have had there ups and downs. I have been chasing my WBC and my NeutrophilS.They both have been low, Im a Neupogen shot junkie!! The Neupogen shot causes (stimulates)your bone marrow to go into over production of neutrophils, which quickly boost your wbc and neutrophils.My last shot was this last wednesday morning as I was leaving for Seattle for my 6 month post transplant check up.The check up went great, they say im in good shape and that the liver is doing great. They say I have the LFTs of a 15 year old! They cut my drugs back a little bit so I expect to feel better in a week or so. 7.5 weeks post hcv treatment and my LFTs are 15 & 22. My Dr told me that 98% of those that make it 4 weeks post UND go on to svr 12. He said I had this one in the bag. If I can just stop geting sick from the meds now, all is going to be ok. Below is a blood work timeline from the end of Sep 2017 to just the other day. I think the LFTs tell the story. One week post I was und, and at 4 weeks post i was und. RC.

-- Edited by robertsamx on Saturday 10th of February 2018 05:43:30 PM

Canuck · Guru

Hey! RC,

Darn you changed your photo! New pic is nice, (very nice actually), but man was i ever enjoying your old one - you were jes the cutest chubby-cheeked little tyke EV-ER, spurs and all. I had a baby pic like that, once, when I used to look cute, later, my Dad would say, ya, we dont know what happened exactly.

So, you could probably avoid the new 20-question-Canuck's questions more easily if you took a stab at the last 20 questions she she bombarded you with. I'm already started on the new set.

(1) How's it going?

(2) Can your printer print money?

(3) Are you about EOT+8 weeks?? Since your EOT+4 week VL, are you waiting until EOT+12 for your next one??

(4)

(5, 6, 7, 8, 9, 10, 11, 12, 13, 14, 15, 16, 17, 18, 19....

xoxo C.

Tig · Admin

It’s common to develop RAV’s to the treatment drugs if you breakthrough or relapse (fail). He may have benefitted from the addition of Ribavirin or extended Vosevi exposure. Vosevi is so new there isn’t much in the way of long term documentation. It’s all new, but the research into new DAA’s has slowed way down. I think they’re pretty happy with these new regimens. For now anyway. There’s always room for improvement! Like overnight wink

mcmaklin · Senior Member

Thank you. This is interesting. Do we know more about what this patient was taking before, what drugs?

"The overall SVR12 rate was 98%. Everyone who used the triple combination alone was cured (100% SVR12). However, one patient who added ribavirin relapsed at week 4 of post-treatment follow-up, resulting in an SVR12 rate of 96%."

Oh excuse me I have not seen it before :The sole relapser in this study was a 61-year-old black man with cirrhosis who had previously been treated with sofosbuvir/ledipasvir (Harvoni) for 24 weeks. He had three NS5A RAVs, but no NS3 or NS5B RAVs at baseline. After relapsing he had an additional NS5A RAV and four new NS3 RAVs."

Poor guy, but now it is half a year later, do we have any data about Vosevi in real life? I relapsed 1 month After the end of treatment after Viekira Exviera and genotype 1b. and they found L31M.

WHY THE GUY HAD MORE RAVs after Vosevi that he had before treatment?

-- Edited by mcmaklin on Monday 29th of January 2018 06:52:43 PM

Tig · Admin

Hey Mak,

The Polaris trials addressed the use of Ribavirin in combination with Vosevi and didn’t find any advantage with its use. Individual cases have been reported, our own RC was prescribed Ribavirin during his course of treatment, but his case is entirely different than yours. I don’t see any indication for your doctors to include it. Here’s one article that discussed it.

InfoHep Article

One more reference: Clinical Trials Result

mcmaklin · Senior Member

Hello, I am waiting for Vosevi. I am not on the train yet. I would like to ask did anyone of you took Vosevi with Riba? I hope (I am indeed afraid of side effects and I would like to know if Riba is necessary in my case) I do not need to take Riba. I am after my first treatment 2 years ago With Viekira+Exviera but I relapsed 1 month after the EOT. Then I have been found L31M variant.
I hope Vosevi can do it without Riba. Any data there about it? I am genotype 1b and F1.
Anyway I must wait and probably I will get drugs from India when they become available.

Canuck · Guru

I know what you mean RC, about waffle and angel and everybody being brave and doing so good. But come on - you have won the bravery award hands down.

I am amazed with this neupogen stuff, how quickly and effectively it works! Really did not know anything much about it, at all, before i came here! Thank goodness for it.

How's your hgb now? On a scale of 1 to 10 how much riba has left the room do you think? Are you off the anti-viral for the CMV yet, I assume you went UND for the CVM quickly?, so, how long after that did they or do they stop that particular anti-viral??

I am glad your GFR is back to 60 now.

Sorry you are feeling bottomed out, but ... on the other hand ... there is nowhere to go but up now, you have been dealt all the right cards, it just time now, it will come and things will stop see-sawing so much, even out and come back.

This is NO comparison (to all you have been through), but my partner went through a gruelling orthopedic surgery once, he finally made the decion to go ahead with the surgery he had put off for many decades, putting up with an amazing amount of pain and disabilty until a time came one day that he knew (along with the rest of us), that his physical impairment/injury(s)/deficits just could not possibly go on, and he submitted himself willingly for the ortho "re-engineering". It was quite a deal. Like you he was brave too, but, about 2 months into rehab he silently secretly said to himself (for a fair while) - oh, god what have I done - this surgery was a big mistake. An arm that was just a useless skinny bone covered with skin, frozen, not allowed to use it (at all) for a long time, then, we slowly started in on the 6 months of very purposeful, very pre-planned, graduated intensive rehab., (exactly as the surgeon and his phisio expert dictated), ALL kinds of combined phisio modalities were used, intensive and progressive, not to mention the work they taught him, that he had to do at home, to which he really dedicated himself to ... and, slowly and surely, by the end of that year, it all came back (he became their poster boy for how successful cooperative rehab and creative surgery can work out). He would tell you, it does get better when you think it might not. He put his doubt on the back burner, and the doubt and the problems did ebb.

BTW - dats just the most pwecious gall durn cutist pic of you as a little guy!! heehee Love the hat and outfit, you and Lamont, yer just as cute as buttons in thoses baby pics! Jes makes us wannna pinch yer little cheeks. Hey, maybe there was some kinda mix up at the hospital, maybe you and Lamont really are twin cuties, loan Lamont your hat, he doesn't seem to have a pony in his pic, (but is that a fringe jacket he has on?) and we'll see if there really is any resemblance tween the two of you bros.

You two shoulda shared a set of these! wink C.

Related image

Tig · Admin

Sounds very good to me! Your lab values are much improved. Neupogen is wonderful stuff. Have you had any aching in your upper legs? I did. The large bones were very achy. It was well worth the discomfort, a good trade off! GFR is looking better all the time. I imagine cutting back on those meds will also bring some renewed strength eventually. You’ve been through a lot and now it’s time to reap the rewards from all your hard work and commitment to health. Keep up the good work!

3D Cad and printer?? I’m jealous! I want to see a gnarly Dragon next. There must be something out there you can come up with. That would be too funny! I know what you mean about all the sitting, I’ve been doing it for 16 years... it sucks.

robertsamx · Guru

Hi all, Week 5 EOT the LFT"s are 16 & 22 -- 2 Neupogen shots last week got my Neutrophils AB up from 0.66 to 3.76, and my WBC up from 1.81 to 6.48 both in the low normal zone!! May not need to do the third shot waiting in the fridge for me. Feeling poor, all the meds are killing me. I should start coming off some of the meds in the next few weeks. GFR>60.

New hobby, Discovered 3-D cad and 3-D printing, easy to sit in my lazy boy and design stuff and print it out. Keeps my mind busy. I have been sitting for 3 months. Really weak now. I think I have hit bottom and i"m starting the climb out of this hole. Its nice to see angelseven doing so well on treatment, and waffle breezing right along--You both are so brave!! RC

Observer · Guru

Hurray yay and hurray and yay

congratulations Robert...you sure earned the dragon slayer title.

Canuck · Guru

Oh RC,

EOT+4 week UND BLISS! Golden!

How quick did the neupogen work this time? From what to what and when to when?

Never did find out how soon your CMV went UND and how long you were on that anti-viral to make that happen ...

man of concise brevity.

How's the hgb? How's the GFR?

Gunna be party-fit and loud by EOT+12 week, and I can't wait for your official party(s), although ... this one is pretty damned fine and officially good enough for the guys i go with. biggrin C.

Lindsmatt52 · Senior Member

Such wonderful news, RC!!! Congratulations on slaying that ugly old dragon!!

Tig · Admin

That‘s fantastic news, RC! The confidence level of SVR12 following a confirmed SVR4 is nearly equal. I’m in complete agreement, you’ve killed the beast. Now all you have to do is wait the 8 weeks for the +12 viral load to make it official. Since we know what that report will say, it gives you two months to plan the Wake. One wild party to celebrate something you have fought so hard to achieve. I’m looking forward to it. If we can find Jimmy, he can do all of the barbecuing! I wonder if Anheiser-Busch will spring for a keg of O’Douls? We’ll have to work on that!

Congratulations my Brother, this is great!

wendyo · Guru

Excellent news RC. Your LFT's are better than mine! How are you feeling i n general?

robertsamx · Guru

Hi all. 4 weeks post EOT UND Third time is the charm! LFTs 12 & 23. All as of Tuesdays blood draw. WBC tanked again- 3 neupogen shots later its gouging up. RC

robertsamx · Guru

Thanks everyone for all the well-wishing. Tig, That pic you put up is exactly how I feel, riding the beast into the ground. C, The video is cool, thanks for putting it up. The Polaris trials cured a lot of folks, and proved the value of Epclusa and Vosevi, two of the most lethal sabers in the fight against HCV. Polaris 1-5 trials were a complete success. Enavigo3891, My old bunk mate on the first SOF treatment train- glad your doing well! Looking forward to lots of folks finding SVR in 2018 as a result of all the DAAs available now. Thank you all who participated in past Clinical Trials, we have come a long way because of you.My fight has been unique, and definitely not the norm, But perseverance pays off. If your thinking about treatment, take the leap of faith, dont worry, everything will be all right. I promise you! RC

Observer · Guru

Fantastic news you dragon slayer you.

A lovely new liver and now that lovely UND!!!

Happiest New Year to you and Ragdoll

Canuck · Guru

UND, UND, UND RC!

As sure as the sun rises, the earth turns and stars shine ... Polaris led our way.

I am sure I saw two new stars up there, velpa and vox?

So, so happy for you.

https://www.youtube.com/watch?v=nam90gorcPs

-- Edited by Canuck on Saturday 30th of December 2017 02:52:09 AM

Enavigo3891 · Senior Member

RC!!! It's been so long since I've logged in here and for some reason I got an explainable urge this evening to sit down and pop in. After seeing your post today, I feel like it was fate! You may recall you and I started treatment the same week in Feb 2014. I'm sorry your journey was so intense but you sure are a fighter! I'm happy to read up on your progress. I wish you nothing but rainbows and unicorns from here on out!

wendyo · Guru

dragon! Another up yours dragon is in order. Best news for closing out 2017!

Lindsmatt52 · Senior Member

Hallelujah and Hurray!! What a great way to start the New Year! Congratulations RC!!! It is so well deserved!

Tig · Admin

HOORAY!!! WOOHOO!!! & CONGRATULATIONS!

Hey RC,

Well done my friend, well done! I am so happy for you, Brother. You have so much to be proud and thankful for. You are checking off the boxes faster and faster now. The journey has been long, but so worth it.

I found a picture of you this morning and all I can say is get down before you hurt yourself, lol! Looks like that Dragon is having a very bad day!

robertsamx · Guru

I AM A DRAGON SLAYER

One Thousand Four Hundred and Fourteen Days

Thats how long I fought the Dragon

Feb 4 2014 - Dec 18 2017

On Dec 18 I took my last Vosevi, I pulled out my Sabre and plunged it deep into the Dragons chest Piercing its Heart, I climbed down off the Dragon and pulled out my Dagger and pound it into the Dragons Forhead deep into its Skull. With just a whimper the Dragons body went limp and folder into a worthless pile of Dead Dragon Flesh.

the time has come to take out the garbage

RC- A Dragon Slayer

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