Full report: the Appaloosa/Epclusa high kicked in about 10 days ago. I FEEL SO MUCH BETTER. Still sleeping 10ish hours a night but now I have a feeling of confidence with a side order of energy. Sadly theres a fair amount of anxiety as well but thats pretty typical.

My job is a soul crushing, overworked, over stressed, under-paid, white collar sweatshop. So I updated my LinkedIn and set my profile to //interested in opportunities//.

Friends, in the past 10 days Ive had FOUR phone interviews with top-notch technology companies in the bay area. Tomorrow Im going on site for an in-person interview at a tech company that was voted one of the //best places to work//.

Ill let you know how it goes. 

Im a little scared but I dont care. Im going for it! What have I got to lose?

Thanks again for all your support: I couldnt have gotten through this without you guys. 

Much love and gratitude,

your Hoodie

Hi dear friends  

Thank you so much for asking about me, I am doing GREAT and I will give you a full report later when I have more time. Im rushing to get to work on time right now.  But Ill read all of your recent posts and reply thoroughly later on. 

Peace and love!

Hope to hear from you soon, Hoodster! Keep your chin up and confidence blazing. 

Hi Hoodie --- 

I imagine you are feeling better now that you are UND...I am hoping you will be joining us at Club Zero before too long...that would be sweet. Keep drinking the water and hang, just a little longer..you are doing it!!

ps

Hey, Hoodie.  Where did you go?  How are you feeling?  Wow, you're almost done and soon to start the recovery phase of treatment.  I have every confidence in a good and improving outcome.  I really do.

We're missing you over here.

Hey Hoodie,

How's it goin?  

Any changes, for the better or worse lately?? Are things still about the same - how is the work, energy and sleep departments? 

I see your EOT is coming up, right shortly .... yay! Won't be long now and you'll be all done with this pill popping. Only about 10 more sleeps

Your 4 week bloods (LFT's and VL) which were actually taken closer to the 8 week mark, we all HAPPILY know you had a great big beautiful UND then!, but, we never did find out what your 8 week ALT/AST was ... I realize your ALT/AST were not very high pre-treatment, but it would still be interesting to know what your ALT/AST was at the 8 week mark - maybe you said, but i can't see it.

Remind me again, what bloods they planned on doing for you at EOT - will you get the "works" at EOT?, or what.

Our other lovely "apaloosa" lady, STL, will also be having her long awaited (EOT+12 week) bloods done soon, next week I think. 

Thank goodness Gilead invented Club 0 for us.  C.

THANKS YOU SWEETIES

Hey sweetie!  Sorry to be late to the party, I was trying to find you a happy dance.

Congratulations on your excellent news!!! So happy to hear it YEAAAAAAAAAHHHHHH !!!

[video=https://m.youtube.com/watch?v=IeTllComh0A]

That was to say, fricking. Dang spell check.

Hoodie,

I'm so fracking glad to here this!!!!!!!!!!!!!!!!!!!!

Your are on your way out!  I'm really anxious to here the improvements I know are coming your way.

Hey, Tig.  Looks like it's time to polish up those dancin' shoes.  We can boot scoot around the internet, just for Hoodie. Probably more like a two step, my toes, your toes...

No worries Tig,saw this pic the other day and it just seemed appropo

Thanks everyone!

scruffy no worries! 

Hey Shemp,

Sorry, had to reduce that pic back to the attachment. HD photos of that size take over the entire page, especially on mobile devices. Great picture, though! Must be the way Hoodie felt after her lab report!

That's GREAT news.SO happy for you.

Way to go Hoodie. I never get tired of seeing that word UNDETECTED. Sorry for being harsh 

yay

Hooooo-ray Hoodie - it's a done deal! Lovely to have that UND isn't it? - the rewards will keep on coming now, you'll see! Rest easier tonight. So happy you got your UND!   C. 

I knew it was so! I saw that Dragon hauling butt, weeks ago. It was no match for the Hoodie and Epclusa, one-two punch! BOOM!

Congratulations  

, yay hoodie! it sure makes the rest of tx easier to take.

Hey guess what! I got a call from Kaiser today letting me know that Im 

UNDETECTED!!!

Edited to add:

Iris yes 2/3 done.  SO VERY GRATEFUL for all the support guidanc and friendship here. Thanks you all so much  

There has been a clear hesitation to use the word “cure” when referring to the successful treatment of HCV, for years. That isn’t something we dreamed up, but the medical community. As we all know, when we remain undetected after 12 weeks post treatment, we are considered SVR or as having a sustained viral response. That simply means our own immune system is now capable of sustaining an undetected viral response on its own, without the need for additional treatment.

The rate of relapse can persist, although the rate is less than 1/2 of 1% and some now consider that to be higher than it actually is. That chance kept the medical community from using the word “cure”. They just didn’t know how long we might be able to actually sustain the undetected viral response. The medical community responsible for all of this approximation, has now decided the term “cure”  is more closely accurate than previously believed. Why? Because people achieving SVR aren’t relapsing, even at rates of less than .5%. Even the old SOC’s, that had 20-50% rates of success, have provided sustained, long term undetected viral responses. It often took us two or three times to do it, but once achieved, we are still undetected. 

You will continue to hear people question the use of the word “cured”, but in my humble opinion, it is more accurate than the term “remission” some used to describe SVR. Either way, I believe it’s time to throw out the idea that we are anything but cured. We will always test positive for the Hep C antibody, that’s just the way it is.

SVR is viable and once achieved, consider yourself cured. That’s also the way it is! 

I havent had a drink in 18 years and I dont plan to destroy my sobriety today. I dont think its uncommon to wonder if its possible after Im cured. I didnt know we dont use the word cured. Thanks for the info.

---------------------------------------

cool that you've made it 18yrs, sounds like you made the decision

i learned a lot in AA, like how to live sober.

yep, even i wondered about the drink .hahaha, but knew my liver would be so sad if nothing elsel.

i say cured, for me it means the virus is und and not causing me further damage ...

we got this 

Scruffy wrote:

---

Others are there because for one reason or another can't drink but wish they could. You can tell right away who's who by there fondness of "war stories".

If Hoddie said that four years ago here (hugs Hoodie) she would have been pounced on. We care. While i'm on my rant we never used to use the word CURED here. I'll leave it to Tig to shine some light on that. After Tig chimes in you'll see why drinking post treat is still a no no.

---

 1. We try to avoid judgement in my AA community. Yes its hard and people will judge but if you have a desire to be sober and youre struggling weve found that love and service is a good approach. Judgement doesnt really help because it ignores many realities of the disease of alcoholism. One being that its common to have thoughts about drinking and keeping them inside is harmful. Being honest about it helps me and it helps others. 

2. Im glad there is no pouncing on people here. But you can feel free to respecfully explain why we dont use the word cure and why even after treatment drinking is a no no. It would help me and anyone else who is not aware of those nuances. 

3. Thanks and love

4. I appreciate the feedback. I havent had a drink in 18 years and I dont plan to destroy my sobriety today. I dont think its uncommon to wonder if its possible after Im cured. I didnt know that we dont use the word cured. Thanks for the info.

5. Dont worry, 5-1 got it right: being open and honest about my thoughts helps me stay on the right track. Keeping secrets is poison. Im going to be fine and Im going to be sober. Because I WANT to stay sober and I have the tools to accomplish that by the grace of God

Perhaps I was a bit harsh.But it's because I care that I said what I did.I've watched countless people make a split second decision and lose everything.I always ask myself if I had said somthing,would it have changed.Is there something I could have done.One in particular haunts me to this day.I just wanted Hoodie to know that when things look darkest,she can count on me.

(BIG HUG)

Your right Canuck

The gloves came off. Sorry about knocking AA but I've been through a few programs not AA but have friends that have. Problem is you have some that get there support because they

don't want to drink and its good. Others are there because for one reason or another can't drink but wish they could. You can tell right away who's who by there fondness of "war stories".

If Hoddie said that four years ago here (hugs Hoodie) she would have been pounced on. We care. While i'm on my rant we never used to use the word CURED here. I'll leave it to Tig to

shine some light on that. After Tig chimes in you'll see why drinking post treat is still a no no.

 Had to edit this . Not just AA but most programs

i am def all about being open and honest about what i'm thinking and feeling so i can see what my mind is up to .hahahahahaha

that's the only way i can tell it something different

heehee Scruffy!! (I love your posts! - every single one of them dear! ) Fat people! ... outside of McDonald's!! Oh my goodness me - the gloves are off eh? Knocking AA! uh,oh ... oh dear.  And ya couldn't leave oldtimers out of it either eh, well hey I'm old, but I too can make an oldtimer cringe - won't ya still like me later too Scruffy, please! heehee My Mom, my Dad, my Brother, Sister and Brother-in-law and a few other significant others, all had drinking issues, all with varying forms of really well-practised alcoholism and throw in a few other layers of serious addictions on their pile.  I myself tried real hard with alcohol (I gave it a real good go to become an alcoholic) but being that i had some failure issues early in life I did not succeed on that front for some reason , i just never got there, I never got to battle that addiction, but regardless I was quite familiar with many forms of addiction.  

(So weird tonight, me on a dif thread, and you and Shemp here, all quoting AA prayers!)

Ya, me too Hoodie - I have to admit I noticed item #9 too, your use of words "in the foreseeable future" ... that was the bit that got me ... but ... I wasn't gunna say anything (really, honest, I wasn't going to) I was just gunna kinda skip over it as I know you will never be able to go there again anyway - I was tempted to speak about my recent quitting smoking and about how I dare not, cannot, ever, ever, never, go there again, I cannot risk that doom, but i did not say anything (earlier) as smoking is not a very good comparable/analogy ... but ... now that the boys have ganged up on you for your own good it seems, I'm throwing my pack of cigs into the pile.

Oh you poor dear, you must be wondering what they heck is it with all these people, jeeze all I said was ...

Hoodie take us with a grain of salt (not straight up). heehee 

How I love all the openness and sharing, revelations/wisdoms that get shown around here - never could you learn more about people/life, your own life, than right here on this channel!   C.

First of all, Hoodie, you have nothing to worry about. Geno 3, as you know, can offer up some additional concerns for some that go decades undiagnosed. That can amount to faster fibrosis staging, steatosis (fatty liver), and used to involve longer courses of care. If Shemp had dual genotypes, including geno 3, that could’ve changed the approaches to his treatment. You?re fine and I know from following your progress, things are going ?swimmingly?! These are awesome treatments and they have improved light years, certainly when compared to the Drano I took for 7 months.

Trust ol Tig, you’re golden! 

Hoodie,

There's that strong person I've been reading about.We're not in this world to see through one another,but to see one another through.Stay strong.

Hi Hoodie,

The family is doing well and they were blessed with the return of power already. She lives on the same power grid as a local hospital, so they were restored first. There are thousands without power and imminent flooding across the state. The wind was bad, but nothing compared to the rain and storm surge. It’s a mess. It’s the price we pay for living on the eastern seaboard. Knowing that doesn’t make it easier, but it helps us prepare as best as one can for a disaster of this scale. Shoot, I’m still repairing damage from Hurricane Irma, last September. I’m waiting on tile to replace my damaged roof, A YEAR LATER! At least I’m not leaking. I don’t care where people live, natural disaster can strike. Sometimes we’re lucky to have some warning, sadly, sometimes we don’t. The one thing I know though, is it’s times like these when we all come together and our differences go away. It’s the way it should always be... 

Dear friends,

Thank you so much for listening and hearing me! Im really grateful for the love and support we give each other here. Tig, how are you holding up under that dang hurricane?! Hope all is well, Im praying for you and your family (hugs). 

Canuck youre too kind! I used to be beautiful but Im old now and settling into that new phase of life. Its not bad, but it can be hard to let go of what I used to have. On the plus side now I have experience and hard earned knowledge so that is a gift I will treasure. 

5, scruffy, shemp and those of us in recovery: thanks for the feedback and sorry for making you cringe. Talking about my crazy thoughts openly and honestly helps, so thanks for listeyand then setting me straight. I appreciate it more than you know! Im gonna be ok, that much I know. and you guys are too!! were all in this together and we are here to help and guide each other through lifes ups and downs. Its really beautiful

peace out will post results as soon as I get em!

Hey Hoodster,

You’re doing great and slaying a formidable beast! You describe quite a complex journey and it has worked for you, keep it up. Whatever it takes to walk the high road, is what you should concentrate on. Sometimes that path is the most difficult, but most rewarding as well. You’re a strong person, with clear goals, follow them and do it without letting the confusing thoughts get in your way. Look how far you’ve come already! Don’t look back, don’t question the goals you’ve set for yourself and the obstacles you’ve cleared already. Obstacles can be painful, don’t return to the hurt they caused you along the way...  We know you will prevail.

Hoodie,I know I'm new here but that statement made me cringe as well.Learning to drink like a normal person is whats known in the program as stinkin thinkin.Do you not begin every meeting asking God to grant you the serenity to accept the things you cannot change.The courage to change the things you can.And the wisdom to know the difference?Are you really going through all of this so one day you can bomb your liver with drinks?I havn't picked up a drink in 32 years.Probobly why I'm still on this side of the grass.But I know the wolf is at the door.He always will be.Sometime he knocks,sometimes he don't.When he does,I go out the window.Stay strong.you are I can tell.

Hoodie

 I stop drinking about two years before I knew for sure I had hep c probably why I'm still here. Once I stopped I still went out on my bike with friends to the bars and drank soda.

I noticed how much people changed after just one drink. At the time I lived close to a bar it was the first stop and the last they closed at 5 am. There idea of closing was locking the door

so no new people could come in and all that wanted to leave could do so before they "closed". An alcoholics dream. I haven't had a drink in maybe 20 years and drugs 30 years don't miss it a bit. Theres a big world out there 

that doesn't revolve around drugs or drinks once you discover it. I was never an AA member but what ever works ( no offence on AA but to me its like fat people standing out side Mcdonalds smelling the food)

So the new hep c drugs do have a side effect  "some day maybe I could learn to drink like a normal person" is a side effect of having no side effects. Sorry Hoodie but that statement made some of us old timers cringe.

But we still love ya. Find yourself.

Scruffy

hoodie you are doing so good

knowing what is going on is such a good relief

and soon knowing your VL will also bring more relief

i'm so glad you are getting the sleep you need as your body is def working hard with your job and the healing going on.

hepC drove me into recovery too , so it saved my life in a way

rock on hoodie

Oh Hoodie, 

Juuuuuuuust about 66.6% done, or in other words ... nearly 2/3's of the way home! Almost 2 out of 3 bottles down ... or just shy of 8/12ths? ...

Anyway you look at it, or say it, you are the epitome of positive progress! I like your found wisdoms, epiphanies and reflections. 

I'm glad you got the missing 4 week VL labwork done now and figured out as to what happened there. So, that will make this VL about an 8 week VL instead of a 4 week one - I bet the results either way were and will be very good news.  

I am betting my bottom dollar that one day you will be pleasantly surprised to start feeling this fatigue recede/improve, we do not know when and by how much, but i am SURE you will have this as one of your improvements post-cure. What on earth will you do with all that extra time!! Until then, I consider your sleep, beauty sleep (gorgeous person). Already being beautiful, you will not be needing those extra winks in future anyway (post-cure).  C.

With 51 days of treatment completed and 33 to go I have the following observations:

1. On the weekends when Im recovering from the work week I end up sleeping in more, and Im not doing my usual routine of drinking about a quart of water upon awakening at 7. That sets me back in terms of my energy for the day. 

2. Turns out I probably do need more than 10 or 11 hours of sleep per day to recover from the stress of commuting and working 8-10 hours a day. So I set my bedtime for 7:30 PM which is the time that I take my pill. And I sleep until around 7 or so in the morning.

4. Sometimes I awake naturally before the alarm around 6-6:30 and thats when I meditate and have quiet time still in bed until the alarm goes off at 7.

5. If I stay up past my bedtime of 730 like I did Friday night when I met my friends  at the movies to go see White Boy Rick, I pay for it for the next couple days. Luckily its the weekend and I have time to recover before its back to the old grind on Monday. 

6. I have a theory about why my periods are so hard both on treatment and for decades that I had Hep C. Estrogen has to be processed in the liver. So depending on hormonal elevations and so forth the liver may need to process more or less estrogen. It might also struggle with that, and that struggle may also contribute to stress intolerance, fatigue, and emotion regulation.

7. Im grateful for this knowledge, and the self awareness that brought me into mindfulness-based stress reduction about 7-8 years ago.

8. Im also grateful for my AA program and the 11th step which suggests to us that we improve our conscious contact with a God of our understanding through prayer and meditation. Ironically it was the Hep C diagnosis that brought me into the program but I stayed for the fellowship and the good advice, and also because Im an alcoholic/drug addict who needs to practice a program in order to live a happy and useful life. So this is what they mean by grateful alcoholic

9. If I ever start thinking that it would be a good idea to start drinking again when Im cured from this disease, please everyone feel free to talk me down off that ledge! Who knows though life is long, and change is possible. I wonder if I could someday learn how to drink like a normal person? Right now I think its too risky so that means a sober life for hoodie for the foreseeable future

And heres a couple updates:

1. I picked up my 3rd and final bottle of Epclusa on Friday (yay).

2. I also got my blood work done, and while I was there I made some inquiries regarding the viral load debacle from the last prescription pick up/blood draw. You may recall that the receptionist did not order the viral load test. Well I found out that the viral load test was ordered on 8/22 but I was cleared to pick up my prescription and get the 4-week blood draw on 8/17. Well 8/17 was only three weeks! And I remember specifically asking the Hep C pharmacist about it. Anyways, turns out it was not the fault of the lab receptionist, and Im glad I did not file a complaint against her. Mystery solved! No harm done. I might go ahead and provide this feedback to the hep C pharmacist, however.

Hiya hoodie

Tig made me chuckle a bit. The new drugs seem to work in the background with little or no side effects. With the old treatments we had no doubt (one foot in the grave) they were doing something.

New treatments ROCK sides have little or nothing to do with the out come now.

Awwww THANKS YOU GUYS. Your support and encouragement truly mean the world to me. 

Love

Hoodie

Oh Hoodie.  

Even your doubts and anxiety are side affects.  I'm so sorry you are having to suffer them.  It's a state of mind, not a state of science.  Blood tests will confirm how you are doing.  You are pretty close to EOT, aren't you?

I sympathize.  I was so overwhelmed with fatigue, I could hardly crawl up the stairs.  And I was really grumpy.  I could not have done what you are doing - going to work and all.  There were times I just laid there, desperate for the time to pass, and worrying that I was permanently going to feel that way.  

I hope you can give yourself some credit for doing this at all, let alone while working.  I don't know what you will feel like at EOT, but with time, your body will continue to heal, not only from HepC, but from the cure.  You're eating bullets for breakfast!  

But you know what, one day you will find your old self.  I was surprised to find how much stronger I had become.  Now I know I can face what feels like defeat, BUT ISN'T.  Your not getting beat, you're actually getting stronger.  Ironic, yes.

Grit your teeth, don't believe everything you think, and especially what you are guessing. This is not the best time.

For today, accept our strong arms and cyber hugs.  Reach out anytime. My heart goes out to you.

Cheddy

Actually, we used to consider side effects as a representation of the drugs working properly. As we witnessed our body fall apart, the aches, pains, brain fog and plummeting white counts, we knew the beasties were being blasted. Sometimes these drugs exhibit no side effects at all and people have the same concern, are they working? The proof is in the results and that's one reason I like to see periodic blood tests to confirm something is happening. It's mentally liberating, not always necessary as we have mentioned before, but they give you a bit of a morale boost to see some action. For now, I encourage you to trust in the rates of success and the people that have come before you. This stuff works!

Hoodie, you said ..."Hey (bad thought) You dont think theres any correlation between the 10% of people who dont get cured and the severity of their side effects do you?" ...

Well, if ya were ta ask me, I'd say ... a BIG, HUGE, NO! would be the answer. BUT, there does seem to be a VERY strong co-relation between negative thoughts that we see in MANY smart people who are in midst of being cured - it's one of the kinda strangest (but not the hardest to take) side of all! hee hee.

We always have to default to the "everyone is dif rule", it seems that rule is so, so true (I think), from whether we have any sides at all, to what particular might get, to how much of it we get. 

But you should also know ... that the "everyone is dif rule" is actually ALSO dif for everyone, take ME for example! - I am dif but I am also waaaay more dif than you, in fact I am probably waaaay more dif than many people. heehee

I see your math might be as bad as mine (now that is a serious side) - and, you got that upside-down glass thing going on too! That "is the glass is half full or half empty"? thing. You got 10% of people failing?? It might have been more correct to say that 90% of people are getting cured - but regardless, your math is still wrong. Percent-wise (across the board) epclusers are boasting about 98%. So back to your theory that maybe it's 2% or people who are not feeling great who are not getting cured? Answer is still no. 

Oh dear I forgot about the chicken and the egg rule (which came first, the fatigue or the treatment), oh and darn, that math exponents rule ... when you take med X's yuck to the 6th power.

Hang in there hoodie, I think you got things pretty well figured out, you're a smart cookie and quite strong, maybe even stronger than you think, we all waver during these times, you have some options, you have cards you can play, you are figuring it out and will roll with everything to a good end. How ever you decide to handle things, you are doing great and will do great. The yuck will get better in future.  C.

No, I dont think side effects would be indicative of treament failure.  I had terrible terrible side effects from hives to worse than normal insomnia to unbearable peripheral neuropathy pain to worse than normal fatigue to riba rage, (I cant even remember all my sides they morphed week to week) and I am cured and crashing fatigue rarely happens to me anymore.  It took me a while to normalize because after treatment I had a tumour, had to get it blasted with microwave (ablation) yadda yadda an extra year slipped by...but now any of my hep related damages and symptoms are so much more manageable and I no longer feel like I am actively dying.  

Youre getting there Hoodie.stay strong

no hoodie, my hubs had the worst side effects and he is cleared, und. at 7months after tx. and as has been in most cases, that's as good as cured.

i only did 8wks on the harvoni and i know i would have taken a medical leave or fmla if i had 4 more weeks added to that.

Thank you Canuck and 5 for your support and encouragement. 

Will keep you all in the loop on when/if I get my energy back. 

Hey (bad thought) You dont think theres any correlation between the 10% of people who dont get cured and the severity of their side effects do you?

oh my , the monthly

but at least you know the reason behind the extra tiredness and ickyness.

i have been needing a lot of rest for a few years now and am hoping that being cured will cure that as the months roll out . now i have weeks of more energy then weeks of more rest. but it's good to be cured

hang in there hoodie, this is the trip of a lifetime

Hoodie, 

You remind me of me (except that I am old, not young, nor beautiful or talented or  smart like you!!!!) but ... we seem alike in the battling of fatigue dept. - the amount of sleep i required when I had HCV was absolutely mind-boggling (beyond belief!) in the last years as i approached treatment and never was it more ingrained, pronounced/profound as when i arrived to treatment, I just "did it", (the fatigue) before, and, during treatment with quiet amazement (very quiet - pun ) that a body and mind could "do", have to do (or require) THAT much down time. I could wake from a sleep wondering how could I possibly still be so tired and roll over and sleep some more!

I couldn't rightly believe it, except for the fact that I was living it! The naps, so overtaking and so irresistably overwhelming, I couldn't possibly have imagined how i could have worked (at least through the treatment period), it was getting increasingly very difficult to operate the last few years especially prior to treatment with such a heavy sleep requirement.

The good news is that (mind you it took me a very good long time after cure) the fatigue did start to lighten, and I am back to waaaay more normal ratios of sleep/wake time now. None of this overwhelming/overtaking crashing naps anymore, well, very rarely anyway, a nap nowadays, if it occurs, is a merely a more "normal" nap affair. The profound fatigue stopped, it WAS due to my health, my illness and treatment, and after cure as i mended, things improved dramatically in the fatigue dept and in many other ways.

I am betting everything that your fatigue will change/improve too in future - that you may well find you will not have as high of a sleep demand in future after your cure. Wait for it, it will come.  C.

Oh duh. Im due for my period in a few days. 

Epclusa seems to take every existing condition (fatigue, PMS) and just ratchets it up to 11. My fervent hope is that I can outrun it and get to a place of recovery before I get to the age where fatigue sets in in earnest. 

So endeth your monthly melodramatic post by yours truly