Hep C Discussion Forum

polosilver · Senior Member

RE: Hoodies Epclusa journey starts 7/26/18

Shemp · Senior Member

Hey Hoodie,

Congrats on EOT and of course UNDETECTED.The word kind of stuns you at first,takes a while to sink in.And,congrats on your new job!If treatment teaches us anything,it's that nothing is imposible.You have an amazing attitude and outlook on life,and I know you'll do well no matter what you choose to do.It's great you have some time between jobs.Rest up,regroup,relax.Then,you can begin writing the next chapter of your life.I'm sure it will be great.

Cheddy · Moderator

How are feeling post treatment so far? Any improvement with fatigue?

Canuck · Guru

Yup, me too, was wondering (but kinda expecting) that very nice EOT UND! Congrats! We can hardly keep up with all your good, "new" news! smile C.

lamassu · Senior Member

Hi Hoodietree,

I was wondering about you congrats on undetected at EOT!

Tig · Admin

Hoodster,

How absolutely wonderful to hear your EOT viral load was zippity, nada, nothing! "Undetected" will forever be a word that holds special meaning. It does for all of us and I know that SVR will also prove true for you. I'm feeling it!

Ride out your last days with Company A with a smile on your face and the knowledge of great days ahead with Company B. I know you're going to do well, just look at how successful you are right now! Much to be thankful for, no question about that. You're winning and will continue to. After your probationary period and promotion to manager, combined with successful treatment and SVR, life is going to continue to improve in ways you only dreamed of 6 months ago. That's what hard work and a positive attitude will get you!

Woot!!

5-1-18 · Guru

Image result for happy dance gifs

Hoodietree · Senior Member

Iris, for sure the air quality here is very bad, but I dont seem to be too terribly affected by it. its just a little depressing thats all, knowing that people are suffering so much.

Cheddy, thanks for checking on me Cheddy. I gave two weeks notice at my current job so my last day there is 11/27. My new job starts December 10, so that gives me 12 days off between jobs, yay! And yes I totally have imposter syndrome! But I know its going to be fine. The company is super profitable and its employee culture is renowned. But its the big time so Ill definitely need to perform in order to be promoted to manager in 6 months, which is what I interviewed for. They were nervous about hiring me directly into that role, so they hired me as an individual contributor with the expectation that I will be promoted in six months. To be honest Ill be happy either way.

Canuck, sorry I forgot to update you all! I did get the results of my viral load and they verbally told me over the phone that its undetected. Come January Ill get confirmation of that and then we will all do a big happy dance together!

Iris Dragonfly · Guru

I imagine she is being affected by the smoke from the Camp Fire, there in the bay area. Saw a pic of the bridge disappearing into the smoke.

Cheddy · Moderator

How are you feeling Hoodie? Any changes? How are your nerves holding up?

You are going to be so freaking thrilled! I just know it.

How the new job? I remember when I started a new job, I would freak out thinking, "Oh my god. Why did I say I could do this?!" 2 weeks later I would be be saying, "What was that all about?"

Well, I hope all is well and improving. I don't think you will settle or less.

Canuck · Guru

Hoodie,

It's getting to be almost a couple weeks ago you were getting the EOT labs you requested, your ALT and AST came back, nice and lovely and low (10 and 13), but what ever happened to the VL results?? uh, did I miss it, on another thread?? confuse C.

Canuck · Guru

Ya lamassu - I loved best of all, the studies where they showed 100% of certain sectors of us good folk gettin all cured up with Epclusa! wink C.

lamassu · Senior Member

Hi Hoodietree,

For Epclusa I got the overall 99% cure rate for GT2 and 95% for GT3 from this reference on PubMed. You can read the entire article at the NEJM here. For a wealth of knowledge about HCV I refer to the course modules at Hepatitis C Online at uw.edu.

Note that in the ASTRAL-3 (Epclusa) study of the 231 GT3 patients without NS5A resistance associated variants at baseline, 225 (97%) had a sustained virologic response.

Don't fret I'm confident you are cured and you should be also. Because Epclusa is so successful across all genotypes testing for NS5A resistance before starting treatment is not the standard of care for patients with GT3 at present. Vosevi is never initially used for treatment naive patients but held in reserve for patients who have previously been treated with a Hep C regimen containing an NS5A inhibitor like Epclusa and do not achieve SVR12.

-- Edited by lamassu on Saturday 27th of October 2018 12:16:26 PM

Iris Dragonfly · Guru

Definitely keeping my fingers crossed for you, I wonder why that "what if's" sneek in. I'm with ya...worries like this do plague me as well. Keep the faith. Does your 12 mo fall in December or January? Probably January huh?

Blessings, Iris

Hoodietree · Senior Member

You guys, THANKS!!

Don't have VL numbers yet but AST is 13 and ALT is 10. All signs point to CURED. Sorry for the freak out will update you with VL number ASAP!

Mwah!

canuck:

> Read ALL the study stats, 93-97% for people taking Epclusa - we are right up there! wink C.

didnt know that! Someone was saying GT3s can be resistant and if course I took that and ran wild with it, heh. Then the nurse said "false hope" and I ran wild with that too. All good, I'm gonna be fine

-- Edited by Hoodietree on Friday 26th of October 2018 11:10:59 AM

Canuck · Guru

Hey Hoodie,

Good for you in persisting (about getting them to agree to doing your EOT VL and LFT's) even if those labs will be drawn a little later than your actual EOT date.

Your 4 week VL and LFT's were a bit late also (at week 6ish?, or so, I can't recall right this very second), but ... being that ...

(1) you got Epclusa (phht your cure is a done deal!), and ...

(2) that you have already gone UND ...

I am sure you are still und, and will be, forever more.

So, your question was ... what? ... " do you know what my odds are by any chance? ". Um ... (in my book) you have already been cured, the wait for the EOT+12 week labs is a mere but important technicality to prove your SVR 12.

Having this additional VL UND and labs under your belt at EOT will make you feel better about things.

That's a couple times now you have thrown around this dismal low percentage of cures for GT3's, it just not accurate, maybe back in the interferon days, I tried to counter it before, but to no avail, we 3's (nowadays, with the likes of epclusa and all our lovely new DAA's) are not much different a population to cure, NOT as difficult to cure, in fact, we are now boasting extremely high cure rates, much like everyone else. Read ALL the study stats, 93-97% for people taking Epclusa - we are right up there! wink C.

-- Edited by Canuck on Saturday 27th of October 2018 12:04:55 AM

Cheddy · Moderator

Oh yeah, I hear you Hoodie.

Nothing is quite enough until you get that SVR12. Even the EOT viral load can still leave a gap. It's hard to help it when the treatment has been so long and laborious. Every step bares some kind of anxiety - being diagnosed, deciding on treatment, getting coverage, getting treatment, waiting for test results, let alone the crazies. No wonder we build character.

The process is the same: hang in there and wait for the science to show you.

I don't have diagnostic powers, but I would find it really hard to believe that you are not at the end of this road, in part because the treatments are sooo good and because you have persevered mightily.

I have always been surprised that you managed to go to work through all the side affects. You've also held such a good attitude for others, showing your true optimism.

Can you stop second guessing for a little longer, one hour at a time?

Just keep rocking it, girlfriend. I have faith in you.

5-1-18 · Guru

hoodie, yep that little nagging fear is there cos we waited so long cry , and our hopes are so high.

i worried too. nobody here wants more treatment for you either, so we are sending thots and prayers to your blood as it goes thru it's testing that it is UND.:

Hoodietree · Senior Member

I'm so happy for you and it really gives me hope so THANKS

Pretty new profile pic too!!

-- Edited by Hoodietree on Thursday 25th of October 2018 10:32:07 PM

SeeTheLight · Senior Member

Hoodie try not to worry. I know its hard but Miracles do Happen. The only test that matters in SVR 12 so hang in there. Epclusa is the real deal even for us gen 3's.

cant tell I'm happy today can you.

Hoodietree · Senior Member

Thanks y'all. I'm freaking out a little to be honest. What do you suppose the chances are that I won't be cured? Like does GT3 have an 80% cure rate? Instead of 90%?

Lamassu do you have the actual numbers by any chance?

> The worst that could happen to you is that if the virus is still detectable at EOT + 12 weeks you would have to go another round of treatment with Vosevi.

I super don't want that though

Canuck if you're reading, do you know what my odds are by any chance?

-- Edited by Hoodietree on Thursday 25th of October 2018 10:20:01 PM

5-1-18 · Guru

hoodie yes i am praying for you. you will be joining the UND of us

lamassu · Senior Member

Hi Hoodietree,

Glad you got my note and are having the tests done right away. My prayers that you are undetectable right now.

You are young and have a very low F score which is great news. The worst that could happen to you is that if the virus is still detectable at EOT + 12 weeks you would have to go another round of treatment with Vosevi. That could happen to any of us. The difference between you and me is that I am Genotype 2 which has the highest cure rate with Epclusa while you are the tougher to treat Genotype 3.

Hoodietree · Senior Member

Update! just got off the phone with the nurse. She ordered the liver function test as well as a viral load. I think I'll go get it done today

She also said that she didn't want to give me any false hope, because she said that it doesn't even matter what the results are right now, it only matters what the results are in 12 weeks. Aargh

Oh well I think I'll be fine? Pray for me please

Hoodietree · Senior Member

Lamassu thanks for the info!! I will follow up with them right now And keep you in the loop on my progress. Really appreciate your care and concern

Hoodietree,

Its your body and your peace of mind, just tell your doc to quit screwing around and write you the damn lab order for a viral load and LFTs. As long as your insurance covers the cost I would expect your doc to be more receptive and caring. You could remind him/her it is the standard of care to check viral load and LFTs at end of treatment with Epclusa, and then again at EOT + 12 weeks. Especially for GT3 patients.

I don't mean to be a "Debbie Downer" here but you are Genotype 3 and while Epclusa is the best first choice for treatment naive HCV patients with GT3 according to the Astral 3 study the cure percentage at 12 weeks post treatment is lower than other genotypes depending on whether or not you are NS5A resistant.

Please don't stress out about this (I am sure you are cured!) but I would think you need the EOT viral load plus the EOT + 12 week follow up to confirm you are cured. In the rare event you are not HCV undetectable at EOT + 12 weeks you have the evidence to prove to your insurance carrier that they need to cover an additional round of treatment with Vosevi. Again, please don't stress out. I just want you to receive the best care possible.

Hoodietree · Senior Member

Thank you so much for all the well wishes and congrats everyone. You guys truly are the greatest support EVER!

Just to give you a little background on the "Appaloosa"my iPhone AutoCorrect's Epclusa to Appaloosa so that's how it got its name. It's a little "in joke" with me and my sister

Lamasu - I read a post by you in a different thread where you said that you had a hard time for the first 10 weeks. Well that was my experience as well the first 10 weeks were filled with fatigue and weirdness especially brain fog. When that lifted I was in a state of transition and probably should've scaled back on my coffee because I no longer needed it as much. But I was still drinking the same amount of coffee and had a ton of anxiety! Live and learn Now that I'm done with the Appaloosa I'll just have to wait and see when my energy levels out to a more steady state. Definitely can't drink as much coffee without experiencing a ton of anxiety now that the fatigue is lifting. Curious to see when other good things start being possible, like clearer thinking for one. Maybe that will come when I start hiking again looking forward to that!

-- Edited by Hoodietree on Friday 19th of October 2018 07:35:55 PM

polosilver · Senior Member

Congratulations Hoodie!!!!!!!!!!!! WOW, a major milestone has been reached, you did it. I love those little ponies, they look so happy! The way we are all supposed to be, kick up your hooves and smile!

ps

SeeTheLight · Senior Member

EOT ......Wow Hoodie. On ya. Bet you thought this day would never come. I know it was exciting, to know I had made the finish line, yet daunting to no longer have to focus on taking my magic bean every morning. Soon got over it though.

lamassu · Senior Member

Hoodie,

Congrats on EOT! Have your side effects gone away? I would insist on a viral load right now, you deserve it.

Observer · Guru

yay

cute babies smile

5-1-18 · Guru

you made it to the eot finish line....woohoohoo, ya hoodie!! congrats to you, and yes....sleeping a little longer in the morning is always fun biggrin

Tig · Admin

Congratulations, Hoodie! So happy for you smile Just look back and realize how far away this day seemed in the beginning and how fast that time went by. You did it!!

Hoodietree · Senior Member

Thank you darlings, yes, I just took my last Epclusa Appaloosa. I really wonder what kind of twists and turns the rest of this journey will take.

Canuck, I honestly don't remember if they want me to do another blood draw now or if they want me to wait 12 weeks. I'll let you know as soon as I find out. I'm curious so I will probably give them a jingle to find out. You had asked some specifics about my last bloods. I haven't had a chance to update my bio with this yet but on 9/15/18 my ALT was 17 and my AST was 20.

It will definitely be weird to not hear and anticipate that 7:30 alarm every evening!!

My sister, such a sweetie, texted me these pics to celebrate my EOT. They're BABY APPALOOSAS!! We cuted out on them together

Cheddy, no worries, I'll stick around. Gotta see that cute lil orange kitty butt in your avatar

-- Edited by Hoodietree on Wednesday 17th of October 2018 10:43:31 PM

Canuck · Guru

So! Was it the last lonely miracle pill down the gullet today??

Is it tomorrow that you wake up, with no more mental notes ... "don't forget to take my epclusa pill"?

It is a nice but funny feeling to be finished taking the pills isn't it - knowing you are cured, but used to the comfort of taking the pills because you know they are helping you.

You have maxed out - you have taken in every grain and mg of goodness epclusa has kindly given you - from now on you get to reap rewards for your long efforts and 12 weeks of dutifully taking the plls and taking such good care of yourself!

EOT! Happy day. Tell me again - do you get EOT bloods? Just a short gallop now to SVR12. ;) C.

Cheddy · Moderator

Oh, Hoodie,

I'm so glad you are at the end. Just you wait, with your good attitude, you'll be better and better in no time!

Don't leave us though. I always like hearing your reports, honesty, and good cheer.

Cheddy

Iris Dragonfly · Guru

I hear you are about to pop the final pill! down the hatch and Boom! all gone. all good, all better.

exit station comin up!!! biggrin

blessings to you!, Iris

lamassu · Senior Member

I would not tell an employer about treatment for Hep C. There is too much of an association of Hep C with IV drug use regardless of how you contracted the virus.

Cheddy · Moderator

Hoodie,

I didn't tell very many people when I was on treatment. I didn't want to deal with being misunderstood. Too fragile. I did say, when I felt I had to, that I was dealing with a serious health issue and that I didn't want to talk about it just then.

Now I'm all out and try to be an inspiration to others who are facing any big health issues. It adds comfort and promise.

I agree with Tig, no shame!! That stuff's toxic. Just don't let other people's opinions hijack caring for yourself. You're very good at it.

Tig · Admin

Now I thought (being an old military guy) that HE was the temperament of your HR department HE = High Explosive! You don't have to tell them what is going on, but you know, in a smallish work environment, the rumor mill starts in. Of course, don't let that stop you from doing what is best for Hoodie. There is no shame in going through what we have all dealt with for decades. If informing them of your treatment works best for you, then do it. It's a personal decision and each of us is presented with a different set of circumstances, especially at work.

It won't take long and this will all be behind you. As PS mentioned, you're doing great and the care you're taking of yourself is admirable. Keep it up and you'll be celebrating the end of all of this and the demise of one pesky Dragon...

Hoodietree · Senior Member

polosilver wrote:
my only concern in sharing could be that if you use them for a reference in obtaining new job.

Excellent point polo, and one that I had not thought of. I am very glad now that I'm like you stoic, sucking it up, doing the best I can, making Lemonade out of lemons

On edit: I post exclusively from my phone and sometimes find weird formatting errors so I edited my previous post where "HE" should be HR, you might've figured that out already but just FYI

-- Edited by Hoodietree on Thursday 11th of October 2018 11:38:48 AM

polosilver · Senior Member

Hoodie -- Hang in something will turn up that will be right and good for you. I did not tell my employer when I was going through treatment. I do tend to be a bit stoic, so just sucked it up. That said, I work remote with occasional travel. Since I am not in an office everyday it made it easier. In my opinion weigh the pros and cons and do what is right for you. Easier said than done..my only concern in sharing could be that if you use them for a reference in obtaining new job. If you have great references, then no worries on that end. You will know what is right for you as you continue to listen to your inner self. It seems that you are doing wonderfully at taking care of yourself and overall health. Keep it up!

ps

Hoodietree · Senior Member

Wow polo its great to know we have so much in common! I'm hopeful but trying not to get my hopes up too high. Hey, did you tell your employers you were undergoing treatment for Hep C. I have not revealed that info but sometimes when the anxiety kicks in at work I think I should tell HR that I'm going through a health crisis (but not reveal that it's Hep) as a means of protecting myself.

-- Edited by Hoodietree on Thursday 11th of October 2018 11:33:46 AM

polosilver · Senior Member

WTG Hoodie!!! I had a job for years that was a tech sweat shop and thought I couldn't work anywhere else...and then I finally took action and life is wonderful on the other side. There is more than work, work, work..got to have the balance in there. With your attitude you will find the right op for you! You go girl!!

I can get a sense of that high you are on...awesome!! Glad you are taking the rest you need though. Keep giving yourself that time to DREAM. Its working!!

oh...adding that I still work in tech, but it isn't a sweat shop and I have fun and get paid.

ps

-- Edited by polosilver on Wednesday 10th of October 2018 10:58:20 PM

Hoodietree · Senior Member

Shemp wrote:
That's GREAT Hoodie.
I'm going back to the grind today,I only hope I can stay as positive as you.

Hang in there Shemp, it gets better. I promise

Thanks for all your kind words and encouragemen everyone. You guys are the best

Shemp · Senior Member

That's GREAT Hoodie.

I'm going back to the grind today,I only hope I can stay as positive as you.

Tig · Admin

Thanks for the update, Hoodie! You go girl and good luck on the interview!

Observer · Guru

Yay yay yay and YAY Hoodie.

so glad youre feeling energized and brave and less nappy.

Its just so great to hear that smile

everyday is thanksgiving when youre getting free from the dreadful dragon

Cheddy · Moderator

Hoodie,

What a great change. You see, you are getting your energy and confidence back already. I'm proud of you. No soul deadening for you. You know how to go forward in the face of fear. Very, very cool.

I'm eager to hear your updates. Be sure to check in, please.

Cheddy

Canuck · Guru

I like the sounds of that! Go Hoodie. biggrin C.

5-1-18 · Guru

hoodie... woohoo

Hep C Discussion Forum

Legal Disclaimer: