Hep C Discussion Forum

Cheddy · Moderator

RE: Tanner's Trek with Epclusa

Tig · Admin

Hi Tanner,

I‘m anxiously awaiting the good news, too! I’ve got my tights and pom pom’s ready to go, woohoo! That’ll be a treat, lol!

I haven’t heard any recent updates from Annie. She still checks in regularly, so I think she must be soaking up all the good news. I hope to hear from her soon! (Hint-Hint, Annie) wink

Iris Dragonfly · Guru

Hey Tanner, keeping fingers crossed. We'll be there to cheer you across the Zero line.

BB, Iris

tanner · Senior Member

Went to the lab yesterday; hoping to hear very soon. Can anyone tell me how Annie is doing? Thanks.

polosilver · Senior Member

Hey Tanner ---

Hope to see you at Club Zero soon!

ps

Tig · Admin

Hello Tanner,

It’s nice to hear from you! Glad you’re back and can get your lab work completed. I’m confident that all will be excellent and accompanied by a BIG FAT ZERO!

Observer · Guru

Looking forward to seeing your (nonexistent) viral load tanner.

Sure sounds like a lot of travel...hope you feel well.

5-1-18 · Guru

good luck with the the labs tanner

tanner · Senior Member

Cheddy & Tig, I am soooo sorry I haven't been on for so long. We just returned from Canada where I don't go online much. Before that it was trips to Chicago and DC. Now that I'm back I can go in and get my viral load checked. Couldn't do it any sooner. Hope you are both doing well.

Cheddy · Moderator

I've missed you Tanner. I've been wondering how things are progressing. Hopefully you are enjoying your summer digs. Please let us know how you are wrapping things up.

Tig · Admin

Helloooo Tanner,

If my figures are correct, you have just reached EOT +12, WOOT!! If you get this message, please let us know how you're doing. I hope all is well!

Canuck · Guru

Hey tanner,

Your doc is optimistic (and rightly so) as these new DAA's are just too good! But it is true "officidom" dictates that we cannot call each other "cured" (officially)" until your blood shows you are UND at 12 weeks past your EOT. SVR12 is your "sustained virological response", it shows you are UND at 12 weeks after your EOT. Tig is pointing out that nothing has changed in the guidelines, historically, SVR12's are done at EOT+12 weeks.

All of us and your doc can see the "writing on the wall", with you having two lovely UND's so far under your belt, one at 4 weeks and then another at EOT, your cure is almost already permanently carved in stone - but the lady doesn't officially sing "cured" until the PCR is done at EOT+12 weeks and you get your SVR12.

It's not always easy to interpret what your docs and nurses really mean, perhaps what they are really thinking, what they "sound" like their saying sometimes! Regardless, I am thinking (so far) that what you have ended up with for testing hasn't been too bad (on my scale of liking very frequent bloods! : ) You got, at least, the 4 week UND drawn, because you asked for it, so that was good (very good). (BTW, i don't think you ever verified with us whether you got LFT's or other bloods drawn along with that 4 week UND - those would be good to know).

It sounds like you will soon get some EOT LFT's drawn (at least a little late ALT and AST) because you made this inquiry of your doc - so that is also good. Just more info to add to the file, and in my world, more info is good/never hurts.

In my world, I like frequent blood draws and info gathering. Pre-treatment, I like very thorough assessment labs, PCR/LFT's, many other routine bloods, kidney function tests - then I like to see quite a few of those repeated at the 4 week mark of treatment, just to verify that all is on track, nice when PCR and LFT's are also done at EOT, and of course, I would want a SVR12 PCR and LFT's done at EOT+12 weeks. But, if all you end up with is getting a 4 week PCR, an EOT PCR and ALT/AST and then SVR12 PCR and LFT's, then that's not too bad.

One way or another (with this doc or even just a regular GP) you WILL be able to get a SVR12 draw done, you just have to ask the right doc at the right time - do not sweat it - just make sure you pursue the lab req. prior to the EOT+12 week time, and you'll be able to get it done. : ) C.

5-1-18 · Guru

yes, they wait to declare sustained viral load response.... or something like that. even tho und. declares we have killed off the virus. the svr declares that none of them snuck thru.

with the new daa's the first und usually does sustain.. ,

Tig · Admin

They know how effective these treatments are and most people are oblivious to what guidelines are. The doctors are witnessing near 100% rates of success, so they assume the best results will continue and in the majority of cases, it’s true. Still, SVR to me is analogous with a cancer patient being told they are cancer free. How do they determine that? Testing, until it’s proven to be eradicated. In our case, that’s a PCR at EOT+12. Don’t be too hard on her, she probably don’t have patients that are familiar with AASLD guidelines.

tanner · Senior Member

Tig, it is not good to know the doctor is confused. I'm messaging her now.

Tig · Admin

Hi Gail,

Your Doctor is confused about SVR. You haven't achieved SVR yet. That is determined 12 weeks following the end of treatment by another undetected viral load test. I’m sure you will be, so don’t sweat the outcome. It can be confusing at times and I’m seeing more doctors assuming that no detected virus at the end point of treatment equates SVR, it doesn’t. The AASLD clearly states SVR is determined at EOT+12 by another PCR.

tanner · Senior Member

Thanks, lamassu!

tanner · Senior Member

Thanks, Annie!

tanner · Senior Member

Tig and Canuck, I did message my doctor. She has now placed an order for the ALT/AST but seems to feel the SVR is self-explanatory. Do you believe she will order the liver function tests at the 3 months-after mark? Here's the response:

"I hope today finds you well. Unfortunately, there is no more information other than HCV Undetected, that means there is no virus detected and it is not quantifiable. I have placed an order for your hepatic function labs, as you know they were normal when we originally tested them. Feel free to go to any lab to have your bloodwork done. Your last two viral load tests that have been negative confirm you have reached SVR (the hepatitis C is cured).

-- Edited by tanner on Friday 17th of May 2019 10:35:47 AM

Observer · Guru

Hurray for UND tanner.

Canuck · Guru

Ya, altho your ALT/AST were within normal limits pre-treatment (what you had posted early on in your sig. line) sometimes they can still decrease a bit with cure, maybe they will, maybe they won't be decreased, it really doesn't matter as long as they remain within normal limits, being that normal is normal! : ) Sometimes we have small blood elevations of this or that (even if normal), sometimes they can re-adjust themselves a bit, and over time after cure we see them decrease a tad. Sometimes, not always. They can well just continue to stay the same or fluctuate a bit, and it does not mean much as long as they remain normal - it is more just a curiosity on my part to see if they ever go down just a tad or stay about the same after cure. What is stellar here is that great big lovely UND! The right and deserved result for you for all your hard work. : ) C.

Tig · Admin

Hi Gail,

The ALT/AST results are included in the Liver Function Tests (LFT or CMP). I would be surprised if they didn’t do them, they typically do at EOT. You don’t get a SVR score, that is achieved after you retest the PCR viral load at EOT+12 weeks. When the result returns undetected again, they crown you with the title SVR12!

Sustained Viral Response 12 = The Cure

It takes more of that anxiety laden time, but it’ll go by quickly!

tanner · Senior Member

Thanks, Canuck. My ALT and AST numbers were both normal before treatment and they did not give me an SVR number. I just messaged my doctor;'s office to see if they even tested that.

Canuck · Guru

Big congrats Tanner!

Und, just as it should be. Lovely. I am so glad that hard work is done for you. You did such an exemplary job with it all, that's for sure. Now, just for your SVR's to come.

Did you mention what your other blood results were, your Alt/Ast, etc.? Just curious. : ) C.

Annie · Member

Woo-hoo Tanner!!! So excited for you.

5-1-18 · Guru

5/14/19: NO HCV DETECTED!!

it's a beautiful thing

tanner · Senior Member

Thanks to all for your congrats! Who, besides Annie, is on treatment right now?

lamassu · Senior Member

Tanner congrats!

Tig · Admin

Congratulations, Gail! I knew it would be good news. Stay the course and success is yours. Don’t forget to stay hydrated!

5-1-18 · Guru

tanner, i'm so glad to hear of your undetected

yep, we do get cured fairly easily these days, still sadly life can be sad in other ways cry

Cheddy · Moderator

EXCELLENT!!!!

I'm so sorry the sadness. Joy still abounds. It's just harder to see right now. Time WILL heal the wounds, and new windows WILL open. 'Done it lots of times.

I hope to find you dancing soon, one step at a time.

tanner · Senior Member

FINALLY - got the results just now. Sorry I've not been on since last week. Of course, I'm jumping for joy but, the whole situation with Emily overwhelms everything with deep sadness. I hope to be a cheerleader of everyone going through the treatment.

HCV RNA by PCR

HCV RNA not detected by PCR.

-- Edited by tanner on Tuesday 14th of May 2019 10:46:50 AM

Canuck · Guru

We develop these weird love/hate relationships with our lab people when we need these VL results back, it's like having a bad girlfriend or something!

https://www.youtube.com/watch?v=Hz64hWng2vM

Some us know how it feels.

I am long cured, but I too had a VL drawn recently (just a repeat/routine draw), on April 25th, still waiting for the results back!

Patience IS a virtue they say. Brother eh?

Your VL's (especially around treatment times and until SVR12) feel so important to know, as soon as possible - even when we know in our hearts that all is going to be OK. We get ya Tanner. Hang in there. C.

Cheddy · Moderator

Very well said, again, Tig.

Waiting is another one of the weird zones. As I said when you (Tanner) were getting the insurance goons in a row, there are several phases to this cure. You're in the waiting room, now. Next is clearing out he weirdness that these powerful treatments may include. It all goes rear view mirror in no time, leaving behind another course in power building.

I'm so glad you got this new treatment.

I'm ready for the happy dance.

Tig · Admin

Hey Gail,

You're not kidding! The wait is as oppressive as the humidity down here today! 90 degrees with 87% humidity, ugh! I remember my heart feeling like it was skipping beats as I waited for some of my viral load reports. My doctor always kept the report to himself until I came in (during treatment). I still remember the antiseptic smell in the office I was lead to. They would close the door and there I would sit, left to my own imagination. Back then, the rates of success were about 20-60%, depending on what you were taking and for how long. It was truly a wait and see situation. Now, these new DAA's are 95+% and that's probably a low estimate. They are so effective.

I know I can't eliminate your anxiety, but allow me to tell you and those still waiting, this stuff works. Those people that take treatment seriously and do their part, always succeed!

tanner · Senior Member

Oh the waiting is the hardest part.... Tom Petty.

Tig · Admin

Indeed! Let the good news flow....... smile

5-1-18 · Guru

waiting .......... yes tanner, it's got to be good news

tanner · Senior Member

Hi Tig, just waiting on results.....

Cheddy · Moderator

Oh yeah. I thought this was health updates, too.

Congrats again, Tanner!

Cheddy · Moderator

That's great, Harry, that you are getting the CT scan. it makes total sense to me that numbness in the fingers and toes could be caused by a pinched nerve in your neck. The connection is direct. Are you having pain? That's a sure cause of fatigue. Whatever it is, I'm glad you are pursuing help. I don't recommend calling it age, as it makes it sound like you can't do anything about it. Be as well as you can!

Let us know what you learn.

Canuck · Guru

Hey Harry! - I wrote to you over in "Health Updates". : ) C.

Harry · Senior Member

Hope you're going ok Tanner, I also get exhausted easily since finishing a successful treatment with epclusa,hope it passes soon ,I have had a pinched nerve in my neck for 20 yrs my Dr has me booked in for a CT scan tomorrow hopefully that will be causing the numbness in fingers toes maybe the exhaustion as well ,then again it may be just an age thing getting older,that's a great picture 5 where is it ? Tig I also spent bit of time in s.e..asia magic place, never been to Paris long way from here Asia closer ,I just don't like hearing of the changes going on there ,oh well nothing can be done ,IV read about VL lately I had my virus for a long time I think I just about fell over when I read mine had gone from 8 mill 12 MTHS later 15 mill then last one I got was 20 mill ,I'd been having influenza vaccine every year wondering if that may have caused the increase, I live a healthy lifestyle eat well I guess ,main thing is it's gone now !!has anybody else heard of VL numbers that high? I can't find much info on it .starting to cool down a bit over here now,it's great after such a hot summer ,just hope flu vaccine does its job, really don't feel like catching the flu,hope the best for all take care everyone.Harry.

Cheddy · Moderator

Oh boy. That's music to my ears. You are coming to the end of an important chapter. Congratulations, Gail. Time to turn the page.

5-1-18 · Guru

EOT ! EOT

Tig · Admin

Helloooooooo!?! I believe today is the End of Treatment for you. Yes? If not I’m pretty sure I’m close! Congratulations, you can detrain and board the next luxury train to SVRVille smile

It gets better and better...

Ashenvale · Member

Hi Tanner - glad to hear your hand is healing well! About the water, it wasn't from forum (this is the only forum I post on). I do lurk/ read on various cancer forums, FB groups whatever, but do not participate. This is the only one I found interesting / useful, and I have read it regularly for a good couple of months, before deciding to join. I liked the people, and how organised and well informed it was.

The 'new devilry' (haha) did not come from the liver/hep angle but cancer nurses. Basically I have mild ascites and a bit of a kidney trouble, neither of which have been investigated but their immediate advice was 'lay off water' which I have done - especially because the Epclusa treatment was finishing anyway. But because I no longer had the disciplining effect of "aim for a gallon", I ended up not drinking enough, and feeling worse for it I think.

(Sorry if my initial post was confusing, it was because it started off twice the length, with all the details - brevity is not my strength! - but then I decided to cut half of it so as not to clutter your thread with irrelevant info, and paste extra details it in another thread or save for later, but then of course the context disappears and the meaning might get skewed).

-- Edited by Ashenvale on Monday 25th of March 2019 05:14:38 AM

-- Edited by Ashenvale on Monday 25th of March 2019 05:19:55 AM

tanner · Senior Member

Aw thanks, Ash. Yep the swelling is almost all gone so soon I will go in and see what can be done with the broken rings. I will be honest about the water, I rarely got to a gallon but pretty much drank 80 oz. a day. Yes, I believe the water is very much tied into fatigue. And I have also kept the pill to breakfast time.

So what's going on with drinking less water? What new devilry is this? (Boromir) What forum are you discussing this in?

tanner · Senior Member

seine boat.jpg seine bridge.jpg

So Tig, here's the boat you can be captain of. All expenses paid! Of course they do have trains in France if you prefer.

Ashenvale · Member

Hello Tanner! Wow so much has happenned, for sure this is a great result, and yes you can believe it (I also couldn't believe my eyes when mine said negative after 4 weeks). At 12 weeks I came for my EoT bloods and the nurse said she can tell me without any test that right now it will be negative because I was still on Epclusa recently and the drug is just so powerful that if you respond after 4 weeks then it's pretty much plain sailing. (It is less straightforward for those with severely compromised immune systems - I will post more on this in another thread, but generally from what I understood, if it has worked already, and no immune issues, then it is likely to continue in the same vein).

I hope your mother is OK, and I am very impressed that you went skiing! Sorry to hear about the fall, is your hand recovering? Haha, I know about gravity, I tried a bike a few weeks ago after many, many years, and the old adage was not working for me. I didn't fall but only because I kept the seat so low that I could always put my foot on the ground as soon as I wobbled (which happened like every 3 min). Skiing - that's really brave!

About water, I can relate to what's been said before. I hardly ever managed a gallon, but it did help me to aim for it, even if I did not reach it. I am pretty sure that otherwise I wouldn't have managed to drink half as much as I did. But now I am advised to drink less (for various reasons, more in the other thread) and I can tell you that the fatigue is worse. Whether it's related to drinking less, or just the coincidence we'll never know, but I am going to try and increase my water drinking just a little bit. I basically do not have a huge trust in the doctors' understanding of these things, the nutrition advice we are giving as cancer patients amount to 'eat cake' lol I am not joking just slightly exaggerating. I have learned so much more from this forum - and I know what you mean about comparing it with FB groups too. This forum is so well organised and structured, so much to learn.

About the tablets, I didn't manage to keep to a very strict timetable, but just made a rule that I will always have it with breakfast, whenever that happenned to be (8 am, 9 am or 10 am) helped to ensure that I will remember to take it, and it will be roughly the same time of day, if not the same hour. Of course, for you guys the timezones present an additional consideration, gosh so many things to bear in mind!

Anyway, congrats again on your results Tanner, hopefully the rest of the treatment will be fine too, wishing you all the best!

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