Hep C Discussion Forum

Observer · Guru

RE: New Member - just started Zepatier

Cocojojo · Member

Yay! You're done! Well done Jen xxx

Tig · Admin

Yeah, Jen! That’s outstanding, congratulations! The BIG EOT is a monumental achievement and SVR 12 will take you over the top! Don’t worry, it’s coming quick!!

WOOT!!

polosilver · Senior Member

You are rockin' it now Jen! Congrats on completing your HCV Treatment! Hoorah! Way to go at hanging in there with us.

Lindsmatt52 · Senior Member

WOO HOO!! Congrats Jen!!

Canuck · Guru

We've provided the sound effects, but you are going to have to provide the middle part (the good news part) dear.

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

(insert your missing VL info here - between these 2 links) hee hee

https://www.youtube.com/watch?v=XUBFeV9cLq8

Ya, I'm with you Jen, ring phone!, ring already!

I can't stand it - you phone them OK!!

Set your alarm to remind you to phone them about every ten minutes, use the re-dial button, until they tell you what your VL is!! smile C.

Jen · Member

No More Pills!, No More Alarms (to remind me to take my pill)

I am soooo Happy biggrin biggrin biggrin

No VL results i am still waiting for that call. disbelief

Canuck · Guru

Last day!!!!!!!

One more sleep.

Can't wait!

Related image

Canuck · Guru

Last day!!!!!!!

One more sleep.

Can't wait!

Related image

Jen · Member

After 16 weeks its come down to 1 pill remaining. biggrin Finally my VL results are in - Just waiting on the call from the Doc "Come On" phone, ring.

Have an awesome day everyone and keep hydrated.

Thanks for the amazing support during my treatment everyone, i certainly would not have been able to get through this without each and everyone of you helping to keep me positive and giving me the push up when i was feeling really crappy.

i know i keep saying it - but i just hadn't come across people so giving and willing to assist strangers, you guys have helped make me a better person.

THANK YOU!

Tig · Admin

Hello Jen,

I like the positive sound of your message! In spite of the obvious hardships in your life right now, you can still see the light through the trees. Keep your spirits up like that and nothing will stop you from the life you’re working so hard to achieve. The hardest battles are often the bloodiest, but they can also be the most rewarding, after the dust settles.

I found being around avid social drinkers to be both hilarious and depressing. More than once I realized that I used to act just like that and wasn’t amused or proud of what I had been. I realize not all are like that, but I was and much of the crowd I ran with was, too. It often takes hitting rock bottom to realize that, fortunately we have another go at it.

Two more weeks and you’ll have another date to celebrate on your way to SVR. Stay focused and you’ll be enjoying another successful leg in your journey!

wendyo · Guru

I applaud your courage Jen. Walking through all you have to and doing it with dignity.

As we say in my homegroup, sobriety is not for pussies.

Observer · Guru

Great post Jen, you have such a positive and grateful attitude.

I know what you mean about being around people that are drinking. usually makes people quite fake and rather boring. I was 24 when I got my HCV and besides a wee dram of scotch for a toast when my brother died...I havent had a drink in 34 years, and I havent missed it at all. I was always the designated driver from dinners or parties.

You're so close to done YAY...14 days

and I also agree.... Canuck totally rocks!

Alison

-- Edited by Observer on Wednesday 1st of November 2017 05:07:35 AM

polosilver · Senior Member

Happy 14 day countdown Jen!! Good to see your post here and I also want to add how much I appreciate Canuck! She is amazingly awesome and kept me going when my anxiety level was pushing blast off levels. Soooo...cheers to Canuck from PS as well.

ps

Hang in there Jen, you are almost there!!

Jen · Member

Good Morning,

So sorry about my tardiness in responding but i have been running around like a blue arse fly for the last 3 weeks.

Taking care of my brother and arranging all the palliative support services we need, then (you wouldn't believe it) i have to argue with the government as they want to send my brother on job interviews Lol - 3 - 6 months to live, what a joke. confuse

Feeling a little down with all the bees crap i have to tolerate of the last few weeks - its terribly hard on the emotions to watch and fight for someone you love who has a terminal illness whether or not they have brought it on themselves, it still terribly hard on the loved ones left to fight the fight.

On my own little dragon battle i am feeling lucky - lucky i had a doctor who was understanding and non judgmental, Lucky i had you guys our educator's and counselors for all things viral.

If i keep going down like this (i mean my numbers) bad, bad minds! biggrin there will be no stopping me - someone asked me yesterday how i felt not having a drink in over 4 months well i can answer - Fabulous drinking isn't my demon and i have realised that sitting back and being abstinent from drinking while watching other partake has made me see the situation in a different light; i don't like drunk people - people use alcohol to be someone they are not - people say things on alcohol they would not normal have the guts to say when sober.

I have missed nothing in the past four months away from alcohol and i have given myself a path to life that i didn't have in the past 30+ years and that is an amazing feeling that i carry with me every moment to remember where i came from and where i want to go in the future.

Zepatier has saved my life and has given me the opportunity to take life back on - i am so thankful for the researchers in the medical field who seek to find the answers to find cures for these diseases that reek havoc our bodies.

But i am sad for all those people who don't seem to respond to treatment i meet a man yesterday and after four months on treatment (not zep) he was still diagnosed now that's sad - i don't know his full story but i know after seeing me he was a little sad, he kept saying "your so lucky" and i am - i guess this man didn't have a support group like i do, or had the information that you all poured on to me that help me to help my treatment by eating healthy, not drinking anything outside of water and not taking any drugs prescribed or otherwise, i can only hope this man returns to his doctor and tries again.

Canuck i can not thank you enough for all the encouragement and kind words, i do believe your involvement was the key the turned me and gave me the strength to fight especially in those first four weeks when i felt down and out and could not see how i could ever feel better on these pills especially when i was feeling worse everyday, mentally, emotionally and physically - now 14 weeks later there is a new Jen she is positive, she is happy but most of all she is excited about the future - as now i am guaranteed i will be in it.

I will be the happiest in 14 days when i do not have to see another torpedo pill in my life!!!! biggrin biggrin biggrin the countdown is on......

Canuck · Guru

Jen,

(Pre) (8 wk) (12 wk)

ALT - 44, 22, 14

AST - 42, 37, 25

GGT - 61, 23, 21

All this teeny-weeny disappearing-act LFT number stuff (for week 8 and week 12) is looking really mighty fine to me. Man, you keep going like this Jen, and we won't even be able to read your 16 week LFT lab numbers, they'll be so tiny!! All has been in full reverse (and probably) started LONG before you ever got wind of your 8 week LFT lab results. I am betting that you are UND already, and maybe were quite a while ago! Hm, objectively, based on these great LFT's, what would you think this person's VL has been doing all along??

Too bad you have not had the benefit of having/knowing your VL's all along, mind you, you (and we) have been privy to your stellar LFT drops occuring, (BTW, very good you post them in your sig line, so easy to scan at a glance) and your LFT's, all by themselves, in absence of known VL's, bodes very well. LFT's (such as yours) herald the "telling" and very good signs we want to see, but of course everyone wants to know of their VL UND's to top off the good news.

Folks on 12 week regimes (many dif DAA regimes) most often get VL's at 4 weeks (1/3 of the way through) and then at 12 weeks (their EOT), where as you, on a 16 week regime, (apparently) the plan was to have VL's at 8 weeks (1/2 of the way through, for you) and then (again) at 12 weeks?, and then (likely) at EOT. Different, but timing and frequency of VL's does all depend on what your doc, higher ups and recommendations dictate.

Just too bad at your 8 week mark, that they did not give you your VL then, then you would not be having to be second guessing so much what your 12 week VL might be now (that is IF you got a VL for 12 weeks!), I'm still not sure/convinced, for sure, how many VL's were planned and carried out for you during treatment. Regardless of how many you did get during treatment, surely (for certain) you will get a VL at 16 weeks (at your EOT) and then at EOT+12 weeks, and then EOT+24weeks!

Your LFT's are wonderful rewards and the best of news (thus far) - get prepared! ... for just more and more good news. biggrin C.

Tig · Admin

Those are very good results, real pretty as a matter of fact! Your liver appears to be happily chugging along, inflammation free. The only thing that closes the book on your Lizard is that viral load. I do have to add that your results would have me polishing my dancing shoes!

We’ll be waiting with our shoes on.....

Jen · Member

Good Morning Fellow Warriors,

Jen Drew 2nd Blood and the results are positive, GGT 21 - Alt 14 - Ast - 25

Still waiting on the VL results hmm But what do you guys think ? Dragon Slayed ? Doc says results are good but we need to wait for VL to confirm - how good. biggrin

I will wait to see what you guys think - before getting excited.

polosilver · Senior Member

Congratulations Jen!!

Hooray! A life accomplishment to make it through the treatment. I am cheering you on today! Best wishes and all things good at the doc's office and labs! We are here for you.

ps

Lindsmatt52 · Senior Member

Jen- You're on the final lap and I have no doubt that your positive attitude will get you to the end in no time. I agree with you that the people in this group are indispensable in helping us to understand and cope with this disease. I can't imagine how lonely and isolated I would feel if I didn't have this safe place to go. Good luck with your blood draws and doctor's appointment today!

Jen · Member

I'm with you Tig First Class is the only class to travel.

In this country all the Bogan's (Rednecks or Chavs) are on the cruise liners.

we should hold the world's first Viral Games biggrin between all of us here we could come up with some really fun and interesting games to compete with each other over.

Lets put our thinking caps on, whilst I'm waiting for you guys - anyone interested in a Egg and Spoon Race ? wink

Thanks for the pic - Noice~ Bogan talk for ya!

Jen · Member

Hey C

Loved the song in more ways than one - Roll On, certainly fits within my scope - My hubby would say it was written for me ! biggrin biggrin biggrin

Tig · Admin

Hey Jen!

I’ve always thought it would be a great time to get all of us together for a big party. We’ll need to set up a world cruise because we’ve got friends everywhere! First class berthing with staterooms and big balconies! Only the best wink

You‘re coming down to the wire. It‘s an exciting time. Of course, the last couple of weeks seems to take the longest. It’s also the time we all get anxious. Keep your eyes on the prize, SVR. It’s just around the bend! You should already be able to smell the pungent aroma of smoked Dragon!

Here‘s a photo of the Zep Ray in action!

Canuck · Guru

Yay Jen,

Glad to hear from you. Only a wee while for you to go now. That's great.

I am liking the sounds of your attitude, and of your musically inspired dreaming! hee hee

Here's one that you have probably never heard, it's not Flloyd, but it may make you forget about Geroge Michael for a minute!

Ok, Ok, it IS dif kind of freedom this guy sings about, but ... there are parallels there that are found in the lyrics (that I like) in this song. I liked his singin' too. https://www.youtube.com/watch?v=6yCmgkVaKXw. (Even tho it gets hard sometimes I know, roll on, roll on.)

Hope all is going as well as possible on the home front.

Hooray for more bloods tomorrow. smile C.

-- Edited by Canuck on Thursday 19th of October 2017 07:03:29 AM

Jen · Member

Hi Guys

Hope everyone is doing well, I am finally in week 13 on treatment - tomorrow is the 12 week blood test Woo Hoo! and boy, do i have a list of tests for the Doc LOL biggrin After the last blood draw and the mess up in what was tested for and what wasn't confuse , i decided to take control and make up my own list of required test at least this way i will finally get some answers regarding my VL .

Since I've opened the last pack of Zep, i have had George Michael singing Freedom in my head, i awoke in the middle of the night only to hear GM singing

Freedom! (I won't let you down)
Freedom! (I will not give you up)
Freedom! (Have some faith in the sound)
You've gotta give for what you take
Freedom! (I won't let you down)
Freedom! (So please don't give me up)
Freedom! ('Cause I would really, really love to stick around) - (That why i started treatment) biggrin
You've gotta give for what you take.

it must be a sign - cause personally i'm a big Floyd fan with a lot of Powerfinger thrown in.

Have a great day all smile pls turn your radio's up to help free my head of GM wink .

Jen · Member

Thanks guys your support as always has been above and beyond.

Your right positive results lead to positive thoughts and a positive outlook for the future, it's a wonderful feeling knowing you have taken control of your future and that now you can see the results of the effort you have put in and feel the results the Meds have made.

I started exercising again this week Yeah ! smile Small steps a 4 k walk daily - so far, so good.

I now think back to when i was hiding my illness and being too afraid to open up about it, having real fear of how others would react stopped me from dealing with the condition for over 30 years - now i just feel i wasted so much time worrying and doing nothing that i actually made the situation worse and allowed the disease to grow and take control of me, Boy! what an idiot i was - what i have learnt on this journey

Being honest about your condition is the key for others to understand what you are going through.

Finding a support group that can give your courage, strength and knowledge to continue your fight and help others to slay their dragons/demons.

Having someone who will just love you, even though they do not understand all you are feeling but by listening and being there for you to whinge, wine and complain to makes a huge difference.

Listening to the advise of your support group and taking the advise on board - has been the greatest gift i could of received and following the advise is the highest form of respect.

Educating yourself on your illness, you don't need to be an academic to learn how to help yourself, I'm a high school drop out and i certainly don't always understand everything i read about my condition but i have learnt that no question is stupid so when in doubt ASK away.

I could not have come this far without each and everyone of you who have traveled this road with me to help make my journey a little easier to bare, Thank you all so much for your continued support.

I only hope i can help and assist another as you guys have supported me.

Jen

Tig · Admin

I’m really liking what I’m hearing! There’s a lot of positivity here and more than anything, that is what it takes to succeed in this battle against our collective Dragons. That and a good dose of DAA’s! The efforts you’re making now will provide you with the health needed to make your future bright. Stay focused and the prize will soon be yours!

Canuck · Guru

Hey, our Jen and Jojo are just smokin right along on ZEP! This team, now both with 8 week labs under their belts (well ... save still awaiting on Jen's 8 week VL) but still!!, both of you showing just wonderful responses to your therapy! Congrats to both of you for your brave stick-with-its and good lab fortunes. Like a relay race, Jojo carrying the UND batton for 3 legs, Jen carrying it on for 4 legs (a shared batton), to the winners circle at the grand final finish line. The batton, right shortly, about to be passed to Jen for her final push! You are both winning, this team race. smile

Only about one more week of effort Jojo, how nice! - do you have another ALT/AST or labs to show, or maybe they still withhold doing AST's?

So nice you both have each other's back and can count on each other's support (teamwork) to get through this for the win! Can you two hear us cheering?? Your fans are excitedly here, with hoarse voices! Can't wait! C. biggrin

Cocojojo · Member

Hi again Jen, those results look encouraging! Let us know as soon as you get confirmation of your VL, I'm sure it will be good news. I'll be going into week 11 of Zep on Thursday. The end is in sight now and all is well. Side effects (tiredness and strange taste) annoying but manageable. I've decided to stop worrying about them and focus on the positives - what was that you said in an earlier post - you decided to look for the joy in each day, or something like that? That was brilliant advice. Oh - and I finally got my 8 week blood test results on Monday - still UND! So there's a huge reason to be cheerful. Raising a glass (of water!) to you, keep at it girl. Jojo xx

Tig · Admin

Outstanding results, Jen! You can be very pleased with those improvements. The good news? They will continue to get better and SVR will follow!

robertsamx · Guru

Hi JEN. Most of us understand your statement about hiding it for so many years. I was the same way,and keeping it inside tore me up for so Long. I used the secret viru as an excuse to propitiate my bad habits, which diden't help my liver one bit. It felt good to finally tell my family and close friends, let it out into the light. Its like now your sharing the burden and the load is lighter. (22&37)are low normal. Your on your way to SVR. RC

Cinnamon Girl · Guru

Great to see that your tx is going so well, Jen! Yes, you should be very happy with those numbers, it`s all looking good!

Good luck with your VL result! smile

Canuck · Guru

Agree, the signs ARE good, it IS goin down!, you SHOULD be feeling happy with this news! biggrin YAY JEN!!

I don't know about "slower" than others tho, think you're wrong on that, you really have NOT been privy to your VL (as yet), nor have you had any/many opportunities to see any ALT/AST's along the way!!

AND your week 8 ALT/AST's and GGT says it all, they are stellar drops - and as you know, that's just what we want to see!

Hate that, when they keep you waiting for a VL to return, they used to do that to me too to sometimes.

Until then, these bloods are m-m-good! C.

Jen · Member

Finally, I have more results to share with you guys.

Ok ALT was 44 down to 22

AST was 42 down to 37

GGT was 49 down to 23

Viral load is not back from lab.

All signs are good that i am kicking the Dragon's Butt, a little slower than some on this road - but never the less, it's Going Down!

I am so happy with this news smile after hiding it for so many years, to know i am only weeks away from being cured is an amazing feeling. biggrin

Today i end my tenth week of treatment and begin my eleventh week on treatment it's going to be an interesting 12 week blood test, hopefully the lab won't mess us around to much with the next results.

Need info update guys - sorry been missing due to my brother (i am doing another thread regarding my brother as i need help with some info and what i will be facing with his condition - look for - Jen needs your help )

Jojo how'd your results go?

Iris are you on the the Zep train ?

Jen

Canuck · Guru

Hey! Nice Jen - your 8 week ALT being 22! smile Good stuff. You have halved your former ALT of 44! All the right signs. I can't wait to hear the rest of your results, your AST, and VL in particular! I'll do all the nashing, pacing and waiting for you - you go put your feet up for a bit. wink C.

Jen · Member

Hello Iris

Thanks for your message, it has been a long nine weeks but over that time i have had the opportunity to find some real gems in this world, and they all come from this site - the people within have given me strength, support, knowledge and the courage to continue the battle when i didn't think i had any energy left.

The one thing that i like about this site is no one has asked me how i contracted the virus - it seems to be of no importance, what is important - is that we all what to slay the dragon!

I am so glad i began this journey no matter how stressed i have felt along the way, it certainly was the right decision for my life and one i am proud of myself for taking rather than doing what i had been doing for years - living with my head in the sand.

Good luck with Zepatier just remember the Golden Rule - Drink Water, Eat Fresh, remain positive and you will be fine...

Now Go Slay Your Dragon - your Sword is awaiting.

Cinnamon Girl · Guru

Iris... hello!!!

Like C, I`m very excited at the thought of you finally getting your tx approved, do keep us posted on your news! smile

Canuck · Guru

Hey Iris!!

Does this mean you might be approved for Zep? - soon? Great news if so. : ) C.

Iris Dragonfly · Guru

Hey Jen! Just wanted to pop in and say congrats on your dragon slaying journey. biggrin I was really able to relate when you said you had felt like a leper, that's something that has bugged me very much. Soon this will be a past (bad) memory. With any luck I will be shortly behind you with the Zep sword, please check in an let us all know how you feel weeks and months later, I will be very interested in everyone on the Zepatier train.

Many blessings, Iris

Jen · Member

G'Day Canuck

You make me laugh! Good news ALT is at 22, waiting on the AST results as doc blaming lab for not analyzing the blood properly.

These idiots /morons who have degree's haven't got the slightest understanding that the results may have been important to me, you and the rest of the commonwealth! LOL.

Instead we must continue to show patience, while we wait to slay the dragon from within.

Fscore i would assume has been taken from blood work as i have not had a scan, Last Wednesday i asked Doc what my Fscore was- which is how i got the 2.6 figure - He then said we would be looking for a Fscore of 0 when your treatment is concluded.

I know if i went to a specialist i would get better understanding of the results than by my local general practitioner but you have to take what you get and make the most of it and i have you guys something better than a specialist - real life cases, real life experiences and real understanding of the symptoms and side effects something a doctor can not give me through text book training so i think i a better off with you guys in my corner.

I have found a light over the weekend to find the strength i need to push past these feelings of fatigue and that is to take control back of my mind and not allow myself to feel so depleted - and that is Happiness it has always been the key to success in life and in relationships.

I will get the Ast results in a few days and fingers crossed it will be another good result.

Thanks for the info on fscore i will check it out later.

Anyway Ava good one C

Canuck · Guru

Hey Jen and Jojo,

Lookie us, all dressed up in our best "united nations" UND uniforms, well (technically) Jen is still getting dressed, but she'll be along right shortly.

Can't wait to hear of both of your next imminent UND lab results! : )

Gee look how far we have come, Jen halfway home and you 3/4 the way there!! How time flies (sometimes).

A lot of us here know the ass-dragging debilitating fatigue you have both refered to, lucky are the ones who virtually have felt nothing or very little from having their HCV, or before, during, after treatment! There have been some who have felt nothing, believe it or not! Dif drugs, dif conditions, dif strokes, for dif folks I guess. We had one fellow here who was in a trial similar to mine, but he got the "double" Epclusa, where I got the "triple" Vosevi - when he started his trial he waited with trepidation to see how he was going to "feel" - NOTHING!, so alarmed he was at this, he actually suspected they had him on a placebo, by mistake! No such thing of course, he got the real deal and he got real cured too. Having no choice in being able to take some "time off" (for when you have little energy or are feeling poorly) does add an extra element of difficulty to treatment, as more rest and the least stress would always be better.

jojo, your question about writing on Jens thread here? You are welcome to post comments/thoughts (share) anywhere (on any thread and on any topic) that has an interest to you, especially when you are sharing a common thought/experience/journey/problem/perspective/question - but generally (as I understand it?) there IS a kinda loosely conformed to etiquette. ie.- you can start you own "On Treatment" thread, a place all of your own, where you can write at length unfettered on ANYthing you want to about your experiences, it's a convenient one-stop-shopping for yourself (or anyone) to easily follow your particular journey (more holistic sometimes). But then, there are also other choices, you can also use the commonly shared threads, like "Zepatier Warriors" where all Zeppers can flock to, to share, if they wish, (and some Zeppers have their own "On Treatment" thread as well, in addition to posting in the common "Zep Warriors" thread). And of course then we just see people sharing all sorts of things with others, within someone else's own "On Treatment" thread. The sharing is what is of the most importance here - that, and not sidetracking another persons own "On Treatment" thread far off the original course. You have certainly not sidetracked, stepped on, buried or hijacked Jen's thread. Rather you are doing a wonderful job in sharing, and you and Jen are sharing a common journey and are being particularly helpful to one another! You can choose NOT to have your own "On Treatment" thread, but it may restict you a wee bit though, should you wish to expound more on your own particular experiences, you may feel less comfortable or restrict yourself from expounding/sharing at length while on someone else's thread. For instance, I would be very interested in knowing more about your Ca journey, but would not ask you about it here on Jens thread. (ha ha - see how cleverly i got that in!!) hee hee. Don't feel overly restricted or obligated one way or another! We enjoy hearing from everyone, no matter how we do it!. : ) C.

Cocojojo · Member

Hey there fellow citizens of the Commonwealth, thought I'd check in with you! Jen, I've just been for my eight-week check up and blood test too (yesterday) - won't get my results for a week though. Maybe you have your results now? I'm really hoping it's great news for you. I had a long chat with the nurse about side effects. I'm really feeling the tiredness now - ass-dragging I think Canuck called it and that's a pretty accurate description for how I feel most days. Some days start ok and then the fatigue descends in the afternoon. Some days i feel like I never get going and have a cotton wool head and shaky legs all day. Working fulltime is do-able but sometimes feels soooo hard. That and the weird taste/mouth feel, which the nurse tells me is a common thing for Zeppers. I've actually put on weight because snacking makes it feel better! She reassured me that it will all get better after EOT and I've just got to hang in there. And when I think what some folk went through with the older treatments.....well then I feel bad for moaning! By the way hope I'm ok posting this on Jen's thread - or should i start my own? I'm not quite sure of the etiquette? Canuck will tell me how it works! Jojo xx

Canuck · Guru

I KNOW you are doing your VERY best gal on the rest and stress front (and you ARE doing a fine job with all that has been thrown at you), just wish you had more help/support at home.

I would never shame you for not wanting to do the extra 4 weeks of therapy - who would (if they had a choice), sometimes longer therapy is easier to swallow (sorry, pun) if good reasons for it can be brought to the fore. I do understand why you had hoped the doc "might" shorten the course for you. I would have 12 week envy too, seeing other folk getting shorter courses. Take solace in knowing that you (being a 16 weeker) can exert maximum killing power against the viral foe. The shoe is on the other foot now - you hold all the max lethal weapons, locked and loaded, all the firing power is on your side now - and not your foe's.

Never in a million years would I have guessed what AG 16 was - it's more to do with "general" health chemistry than it is directly relating to liver, per say, (electrolyte/acid/alkaline balances and such). But, good to know your doc is doing some other general bloods on you..

Aside from VL's, ALT, AST's - people most often post things more to do with LFT's (liver functions tests, or liver "panels"). Things like GGT's (which you posted), or like ALP (alkaline phosphatase), or Bilirubins or AFP's, and maybe other pre-treatment/assessment tests or on-treatment tests, especially if they show up as "abnormal", like ... if you have had any abnormals "flagged" to do with blood sugars or kidney function tests, or cholesterol panels sometimes. Anything the lab or doc has flagged "out of range, high/low, abnormal" would be good to note and keep an eye on.

Poor Jen, I will wear you out with questions! Now that I know FS means Fibro score to you, I still need to know the name of the actual test(s) you had to determine that 2.6 number. I still cannot tell what KIND of test your "Fibro score of 2.6" came from. Sorry.

Most of us use the term "Fscore". Basically, a Fscore (a fibrosis score) and it can be expressed in a range of F0, F1, F2, F3, F4. It can be determine by various blood tests only, and/or, by a scan as well (a "Fibroscan").

Your "Fscore" can be determined by a "Fibroscan", a scanning machine, which can give you measurements such as F0 thru to F4, and/or the Fibroscan results can be expressed in a kilopascal number measurement, which can be converted to the F0 thru F4 scale.

If you have not had a "Fibroscan", then your Fscore will have likely come from various blood tests - such as a blood test called a "Fibro-test" or maybe called "Fibro-sure". Do you know what the test "name" is that your 2.6 number came from?

If you had Fibroscan kilopascal measurement of 2.6 kPa's, that coverts to having an Fscore of F0. Here is a link for that conversion: FibroScan Scoring Chart

Here a link about some blood method fibrosis tests: Fibro-sure (also called Fibro-test), the Acti-test, and the Apri-test

Your first (pre-treatment VL) will likely be found in some of your older/very first assessment lab tests - might say words/measurements like ...

HCV RNA PCR Quantitative - with a small number noted in "log", or a large number noted in "IU/ml".

I DO love your sayings ... I got my partner to 'splain kyber to me, right after he finished chuckling. hee hee. : ) C.

Jen · Member

I got my lingo from the Aussie Doctor abbreviations - cause you guys all looked so smart and had your own lingo - so i educated myself with Abbreviations to keep up. biggrin

FS - Fibro score 2.6, Anion Gap 16, VL - will check Friday Arvo cant see it on my lab results, unless it's under a certain abbreviation i haven't educated myself with ! LOL

I might message "my mallards" and see if we had similar experiences as i feel a little lost with how i am feeling and how to cope at times when I'm under so much stress because believe me i try and avoid it (stress) like the plague but the little rat just keeps coming back.

You are 100% right i am lucky to be on treatment and i am thankful that my government has allowed me to be treated and has covered the cost of this treatment for me, i do feel privileged, thank you for reminding me that whinging abt an extra 4 weeks on treatment is inappropriate for me to me.

Thanks C gave myself a kick up the kyber - know how you just love my sayings!

Have a great day !

Jen

Canuck · Guru

Hey Jen,

Good to hear from you! Hope we hear from coco soon as well! The common wealth nations called to assembly-like. (Love your "Jen drew first blood") hee hee (warrior-speak).

I am surprised you did not get the flu (right along with the rest of your family) last woman standing stuff ... I bet you were taking care of everyone else except yourself, being that we know you are strrrrrretched to your limits and at risk of such things like flu. Lucky you didn't get it, but really too bad you are feeling as depleted as you are - good you brought this fatigue problem up so clearly with your doc. There is a phenomenon, called "hitting the wall", it tells you in no uncertain terms you when you met your limit, and must stop pushing yourself - our other cured zepper "MyMallards" also "hit the wall" at one point. It's not nice or good. The hard way to try to lay down. But I am betting you are trying to do everything else right for yourself, trying to eat well, and trying keep up the LOTS of drinking. You just enjoy that sweet little lemonade - my partner hails from abroad and that is what he calls it too. Cream soda is his fav - he smacks his lips while drinking it and exclaims ... "ahhhh, Nector of the Gods"!

This zep is being hard for you, but many anti-viral treatments are not always easy to take (and not just DAA HCV anti-virals either), other treatments for other viral conditions are not always pleasant therapy either - so, we HCV-ers on meds have company elsewhere. I keep hoping you will "turn the corner" soon, and your body will not feel the effects of this viral war you are waging (and winning) within you so much, some folk DO start feeling some lessening in the later part of therapy, wish your "coasting" time would kick in. The only basic things you can do to prevent or lessen it, is the rest, sleep, good food, water, gentle movement and excercise, fresh air, and keeping demands and stress to the min.

Halfway home! Wonderful. And awaiting some very good lab news (I am sure the lab results WILL help make you feel better about things and all you have been going through). Betcha ANYTHING your ALT/AST's have come down!

Good job on the sig line! So good (in fact), lingo SO pro-looking, that I can't figure it out! OK, you had to 'splain KISS to me, so now you are going to have to decipher what "AG 16, and FS 2.6" is?? Also ... what was your pre-treatment viral Load (VL)??? Not in sig line and can't find it in the thread.

Believe it or not, you are lucky to get 16 weeks of zep - it is your safeguard. Your doc is simply trying to ensure your cure for you - he and you want to do everything for this to work the first time (and it will). There may well be some justifiable reasons for you to have 16 weeks. Length of treatment can be based on your VL (that is partly was why I was asking) - for some of these DAA's, if your VL is over 6 million they may lengthen treatment, or for other reasons such as based on your GT subtype, RAV testng or depending on your levels of cirrhosis - those things too can extend treatment lengths or require other drugs to be added to a double, to make it a triple therapy. You are going to get a "thorough" cure - perhaps the 16 week thing is likely due to your VL. I know, it's hard to be glad for their thorough generosity and due diligence.

Re: your ques. on GT and subtypes ... About Genotype/Subtype - Lists - Geographical Locations

Did you ever find anyone to give you a hand around the home what with your Mom/daughter/family all having needs, or to help you out in ANY way?? I know everything is "on you", but please do keep trying, keep putting your thinking cap on and see if you can't find ANYbody to run you an errand, do you a favour or two, save you a bit of time or effort here or there. Sitting, errands, shopping, laundry, cleaning ,,. we would help out at your house if we could!

Hope your labs come on Friday. :) C.

Jen · Member

Hey I'm back - "Jen drew first Blood"

Finally, i am at the half way point over the past few weeks things have been tough - struggled somewhat to cope with treatment. The whole family came down with the dreaded influenza except for me, well what happens when you don't have time to take care of yourself and your on treatment, you collapse into exhaustion - this is where i ended up last week and i am still recovering from the sx.

I have fixed up my signature line with the results from my July test and i should know the results of the blood test by Friday afternoon so that's exciting.

I ask my doctor if i could of gotten CFS whilst on treatment as i have gotten so tired over the past eight weeks and the tiredness is just getting worse - he also run some blood for that as well - but did say it was a sx but not a sx the doctors are open about - Gee if they were open - it may have helped me to realize what was happening and i'm not going insane.

I was hoping i could finish my tablets by the 12 week if the results came back clear but no luck for Jen 16 weeks i must remain on due to my viral load. NOT A Happy Jen! disbelief

ATM i am drinking lemonade (Sprite) - God it feels good to be having something that i have avoided in 8 weeks - a sugary drink biggrin That'll get me jumping ! it certainly has help my mood just as sitting here speaking to a fellow warrior as also help me feel better.

Some days are just hard but its nice to know you have a friend near if you need it, Thank you..

Are you able to tell me what the different Geno types stand for ? i am oddly interested.

Gotta go again this thing called work just keeps getting in my way !

Be Safe, Speak Soon

Jen

-- Edited by Jen on Wednesday 20th of September 2017 02:53:06 AM

Cocojojo · Member

Hi Jen

I am not doing too badly with side effects. The tiredness is the worst I think, and even that isn't too bad - I'm still managing work ok, just don't feel like doing much when I get home! From time to time I get a weak and wobbly feeling in my legs and a strange metallic taste too, but it's all a lot better than I thought it was going to be. Like you, I do feel like I'm looking better too, I went through a lot of stress and anxiety when diagnosed and feel like I'm finally getting my glow back...

We are both into week 7 now, just think that by Christmas this will all be in the past!

I had a 2 week and a 4 week blood test, the VL had dropped to just 110 at week 2, and I was undetected at week 4!! My next test is at 8 weeks, same as you, I feel sure you're going to have the same good news then and I'm looking forward to celebrating with you.

As Canuck said in a comment to me, your thread is turning into a Commonwealth symposium, with Oz, Brit and Canuck delegates! We may be far flung, but it's good to know there are friendly folk out there watching out for each other :)

Jen · Member

Hi JoJo

Thanks for the message it certainly feels better knowing your not travelling this road alone. I am so jelly over you guys being on a 12 week course when i first applied to go onto treatment that's what my GP said however the powers above decided i would be more suitable for the 16 week course, Lucky Me!

I hope you have not suffered with to many side effects - i seemed to get them all in the first 4 weeks but since then they have calmed down dramatically only side effects remaining is the slight rash under my hairline at the base of my scalp and the general tiredness that i feel all day it's a little frustrating as i loved to exercise before going onto treatment.

I don't know about you but after six weeks on treatment i know i look better on the outside it may be because i no longer stress about the virus or it could be, i am actually feeling the benefits of the medication either way i am taking it as a positive.

Have you had any blood taken yet? if so how were the results?

Have a great week ahead and DRINK WATER!

Cocojojo · Member

Hi Jen

Just wanted to say hello - I started on Zepatier the day after you so I feel like we're going through this together! I'm on a 12 week course though, so maybe that's a difference between the way they do things in Oz and here in the UK. I'll be keeping my fingers crossed for your 8 week blood test, not long now How are you doing with the side effects? Hope things have got easier for you.

Jojo x

Canuck · Guru

Ya, I twigged you were from beautiful Oz. I happen to be an Common Wealth inmate of Canada, thus explaining some of my oddities and handicaps. Indeed, we ARE from all over the place here - Poland, Nigeria, India, think I saw a post from USSR once? Many countries come and go here through here, Zepperanians, Epclusers, the rare Riba-landers . You are right about feeling it is a "viral" family here, I have felt I have made many viral friends here - my "virtual" friends, like no others, seperated by ponds that mean nothing. Worldy time warp in the nicest ways. (Jeesh we sound like we are talkin about some happy collective commune of cure, some just arrived later for the meeting!) How does that go again, family that cures together stays together? something like that anyway.

The only thing we ever wish away here is illness, love people, abolish HCV.

You sound a bit better, I hope things are going a little bit easier. I got the part about bloods to be done at 8, 12 and 16 weeks, it was just that 4 week "doc appointment" you mentioned that i wondered about - so, no bloods for that one - just a "4 week visit" - was the visit OK - did he offer you any sleep advice, or anything?

Believe me, we will be all over your "1/2 way home", 8 week labs, like vampires too! Looking forward to you soon getting some good news feedback. THAT will feel good. You are a strong lady, keep on, keep on - you are "doing it" as we speak! : ) C.

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