Hep C Discussion Forum

Canuck · Guru

RE: starting epclusa in two days!

5-1-18 · Guru

yyay woody! so glad to hear things are going easy for you and that you are enjoying eating

Observer · Guru

Great to hear you are breezing through treatment , Woody. smile

Eating like a horse...yay

Sleeping well...double yay

You are working while doing treatment, eh? How is your energy for that?

Canuck · Guru

Yay Woodie - Thanks for updating us, and with all good news too. Whether you get your next VL done at EOT or at EOT+12 weeks, they will be sure to confirm when you should show up at the lab.

I would always opt for frequent bloods and feedback, cause that's just the kinda gal i am. Many docs use their discretion, and are guided by likelihoods and bugetary restraints, about when they will spend money on labs, at 4 weeks, at EOT or at EOT+12 weeks, and even the EOT +24 week ones - it's all up in the air these days. Some countries are testing more, or less, than other countries. (And in our world we could find each Province acting differently from one another too!) - docs can and do seem to be exercising their discretion on frequency.

I like the sound of that eating like a horse and sleepin like a baby! Do keep us posted, we like good news. biggrin Let us know when they say your next bloods are, whether they have made up their minds if you are a GT3 or a GT2, and maybe what some of your old ALT's, AST's etc. were (only when you find any of this out).

After all that prior deliberation, aren't you glad now that you did decide to go ahead?? No time like the present to deal with things I say. wink C.

SeeTheLight · Senior Member

Hi Woody, glad to hear you are doing so well. You must be so pleased.

Tig · Admin

They sometimes test at the end of treatment, but some doctors don't test until 12 weeks following the end of treatment, or the medical acronym, EOT +12. If your viral load remains undetected at that time, you're considered SVR12 (cured). You’ll do it!

woodytwoshoes · Member

Thanks Tig, my nurse said they don't test me until well after the treatment is over, i think she said 12 weeks. They are so sure the treatment works i guess. Lots of people here on Epclusa, hearing about new ones weekly.

Tig · Admin

Hey Woody,

That sounds good to me! Eating well, sleeping well and having no problems. Wow! Im jealous, lol! Keep it up, I like the way this is progressing. Keep drinking that water and enjoy the easy journey...

woodytwoshoes · Member

well, day 10, no side effects except eating like a horse and much calmer. sleeping like a baby.

woody

Canuck · Guru

Hail woody,

Let us know how all is going for you! Smoothly I hope.

I guess eventually you will be able to get it sorted to receive old and new lab result copies (one way or another, on-line or just from the docs office), but DO make sure you phone and ask for lab requisitions for your 4 weeks blood tests, which will hopefully include a viral load - if they refuse to offer you 4 week labs including viral load, then immediately request an appointment with the doc expressly so you can ask him for same in person.

BTW - you could always just use the sample sig. line we did up for you (below), until you get further data to add. Sig. lines can always be corrected/modified as info arrives. smile C.

You and Obs have it right, that we have a complicated weird cut up bits and pieces Health Info sharing system in BC, like ... if labs/tests are done within the Vancouver/Coastal Health Authority area, then (often) the tween shall never meet when you try to access those records from outside that area, like ... if you live within the Interior Health Authority area, but you want result from tests done in the Coastal zone! - you would have to be signed up to be "on-line" for both Health Authority areas - jeeeze - just what does user friendly mean anyway, they're allllways making things complicated!

In your case Woody, I am not sure how your doc has it arranged with Gilead to give you your drugs (I know how you have described the delivery, etc., versus just picking the drugs up from your doc office) but what I mean is how the BC MSP/and Fair Pharmacare, and, any private health insurance you might happen to have, may all be combined and so worked out with the doc in some fashion while accommodating Gileads involvement. For your courier door delivery ... was it the Gilead company address, in the US, listed as the sender? - just curious.

My drug "trial" treatment in BC (with Gilead drugs) was different, meaning, my specialist and I routinely dealt with labs in BC, but as well, we had to get lab results back from US labs, as some of my ongoing bloods had to be sent to the US, as dictated by and for Gileads purposes. Those US ones would have been impossibe for me to access on my own. My trial staff were the only ones who could get copies of them to give to me.

Observer · Guru

The lab at the hospital should be able to guide you to signing up with their lab number etc I think the labs in BC are all linked.

as I said, some specialized tests do not go on the site...like the hep C viral load...but all the regular tests (like ALT and AST etc) do.

woodytwoshoes · Member

i tryed it and it says i need a lab number which i don't have. i get the blood taken at the hospital lab and they send it somewhere else for hep c patients. ??????

Observer · Guru

Oh thats great, Woody smile another BCer. biggrin

Its called Myehealth and you just register and from then on, your lab tests get uploaded and you can see results lickedy split.

Tig · Admin

Either genotype, Woody, you’ve got this Dragon in the bag! You’re an official Slayer now. Do your part and these awesome drugs will do theirs. Are you drinking enough water? That’s on your short list of things to do, along with that Magic Bean!

5-1-18 · Guru

woody, that is cool that they will email with you. my doc's office does that too.

have a good beanie day

5

woodytwoshoes · Member

ya, im in bc so i will look into that. my nurse is very available re meals too so thats good. i just emailed her to find out what genotype i am. seems there is a mixup. dr. said 3, she says 2b. ill let ya all know.

Observer · Guru

So glad the pills are doing their miraculous battle with the dragon without dragging you down.

Not sure which province youre in , in BC they have a web site you can join (pamphlet at the blood taking place) and you can access your blood work results online as soon as the lab has done them . You should ask in your province. They dont let you access some tests like the viral load, but all the regular ones, hemoglobin ast alt etc

Im surprised they are being so indifferent about regular blood tests during your treatment. I had scheduled tests every 2 weeks for the beginning of my treatment and then because of the riba, every 1week for the 6weeks. Then 2 weeks after, 4 weeks, then 12 weeks..

Perhaps it was earlyish days of the DDAs or perhaps because I have cirrhosis.

Anyhoo...yay yay glad youre on the treatment train

A

Iris Dragonfly · Guru

ask for your medical records and copies of blood work and other tests. It's your right. Don't wait sometimes they charge you if they have to dig em up to copy, get copies every time you see the dr.

BB, Iris

woodytwoshoes · Member

Thanks tig , i will get my paperwork from my doctor soon so i can do a signature line. im in canada so i can get blood work done whenever i choose, all i have to do is ask my doc. i need to see him about the mistake in type at any rate. just took pill no.3 and im not noticing anything different. will stay in touch

Woody

5-1-18 · Guru

yay woody on day2 !

well, yea, go in making some noise about the different genotype diagnosis and wanting to know more about that ,and maybe they'll grant you an earlier viral load......

these daa's work so good that now they are not testing as frequently during and after tx.

have a day full of joy and water today woody

5

Tig · Admin

Hi Dave,

It‘s good to get started and the time between now and the finish line goes by quick. I’m scratching (shaking) my head about being given a diagnosis of genotype 3 and now told you’re a 2! Does their right hand talk to the left? Whatever the case, this is actually good news, geno 2 is easier to conquer, albeit all are just about assured with the correct treatment. Geno 3 has a history of more rapid advancement to cirrhosis, fatty liver and HCC, so their mistake is your gain.

See if they’ll provide you a written copy of your lab test results and file them away. They’re good to keep records on. I would appreciate it if you would establish your signature line with your history. Genotype 2, Liver tests, fibrosis. Follow ours for a guideline. It makes replying to you in the future much easier.

Some insurance providers refuse to do testing until 12 weeks after the end of treatment. Primarily based on cost. If you’re still undetected at that point, you’re considered SVR12 and that’s considered cured. Relapse beyond that is less than .5%. Paying for your own tests is always a choice, but it’s only as you say, “to see if this #&*@ is working”! It’s a good morale boost but not necessary in the big picture.

Hydrate!

woodytwoshoes · Member

the nurse said they don't do blood work till week 24 and thats it. im gonna ask for more. want to know if this **** is working or not :)

woodytwoshoes · Member

Day 2, all is wel, now they tell me i have gen 2. go figure

5-1-18 · Guru

yay dave, first magic bean down the hatch

we had to be home to sign for our harvoni from avella. but yea, that caused me some stress. wish we had a pick up point like in canada.

but so glad to hear they left yours there without a signature.

it's so exciting to be on the hepC cure , most awesome

Canuck · Guru

Suggested sig. line (when you get some further info to add). I added your mentioned F2, and corrected your SOT date. biggrin Yay for your Day One!

... ... Male, 67 years old, GT3 (a or b?) over 30+ years, since aprox age 30?. Pre-treatment ALT __, AST __, VL __ (low?), abdominal U/S and fibroscan done (verbal report was that they were "OK"). Fibroscan result _?_ kPa's = F2?. Tx Epclusa 12 weeks, SOT July 9 to EOT Oct 1?, 2018 ...

I would only be guessing (what blood draws your doc has planned for you while you are on treatment and when they should occur) - you should phone his/her office now, let them know you have started your pills (if they do not already know), and ask if you could please have blood tests (viral load and liver function tests) done at the end of week 4. They should confirm to you what tests they want done and when, and provide you lab requisitions for same, in advance. Get out a calendar and mark dates.

I would be wanting labs done (LFT's and VL) and then likely a doc office visit, right at or very near before - 4 weeks.

I would also be wanting labs (LFT's and VL), and likely another doc office visit, right at or very near before - EOT.

Ask if they will please give you (in advance) requisitions for these blood draws, so you can plan ahead for these blood draw dates, and so visit the lab on time. Same for any doc visits they may want you to come in for (at week 4 or week 12) - ask them to book the doc visit dates now, so you can plan ahead (as far as time off work, etc.). They should do this just for your convenience, plus, it is always good to have the labs and visits done in the timeliest fashion. While you are speaking to them about arranging all this, you might as well also ask for them to keep you supplied with paper copies of your pre-treatment labs/test results, as well as copies of the new ongoing ones.

While on treatment, you may only be required to have 2 blood draws done, and, maybe only see the doc twice, and if you are lucky and get the draw results back just before your doc appointment, then you get to discuss the labs results with your doc at the office appointment!

Once you are through treatment, future labs may be expected at EOT+12 weeks, and then again at EOT+ 24 weeks.

Here is one depiction of how to decipher what F2 may mean (how "liver firmness" is measured, roughly) by LSM (liver stiffness measurement) expressed in kilopascals (kPa's) which converts to a "fibrosis" score (Fscore), ranging between F0 to F4. There are actually many depictions that can be found, all quite close to one another, but can vary in exact cut-offs, and by cause. My doc, for instance, not so very long ago, made a change in his LSM guide and changed his prior F2 cut-offs (from 7.5-9.5) to be 8.0-10.5 instead. You would have to ask what exactly your kPa measurement was, and what cut-offs they go by, to know how F2 you are.

Image result for fibroscan score interpretation

Take it a bit easy when you are on treatment, maybe lay a bit low, and conserve some energy, reserve it for having to work etc, maybe less for competitive sport. Drink lots of H20, eat healthy, gets lots of sleep, get rest and calm. Do pleasant quiet things. Are you taking your epclusa with a meal?, I would - same time every day! C.

Tig · Admin

Congrats, Dave! You’ll be virus free in no time at all. I’m sure you’re well aware by now, you need to drink no less than 3-4 liters of water everyday. That will reduce or eliminate the side effects, such as, headaches and severe fatigue. You can expect a few days of oddness because your system will have to adjust to these medications. It will pass. You may avoid any of it since you sound like you’re fit and taking care of yourself already. Don’t push your fitness routine for the time being, there’s time for hard workouts after you’re done. Rest, good diet and hydration (compliance, too) are the tickets to success!

WOOT!

You’re on your way!

woodytwoshoes · Member

Well, i just took my first pill. Yes i have had hep c for years but im pretty healthy, good fibre scan results and he said im F2 whatever that means. I haven't had alcohol for years so not an issue, im in good shape physically, play squash, golf, and do hard work. How often do i get blood work done? Is it up to me to contact my doc to set this up? No one has really told me what the program is.

I wasn't home today but Puralator dropped off the drug on my doorstep which was nice. Thankful we have a safe town where theft is not a big issue.

I will keep posting as the days progress.

Thanks all

woody

robertsamx · Guru

Hi Woody, Glad to see your starting treatment. In a geno type 3 case, sooner is better. Have you read that we type 3s seem to progress much sooner into diabetes, steatosis, cirrhosis,HCC-liver cancer,and that type 3s tend to be more resistant to treatment drugs? Thats the bad news.

I would like to know what your fibroscan results are and your F-score. It sounds like you have been infected many years 30 + years? I hope I am wrong.

The good news is that you are treatment naive and living in a time where HCV can and is being CURED ! Epclusa is a great first treatment drug and you have a 97% guarantee of success. I have been following GIEADS drugs and clinical trials and S/X from Epclusa are minimal and fatigue was not a major factor, you should do well combining treatment and work. Just remember to drink your water.

Forget about the booze, alcohol and liver dont mix well at all. RC

Observer · Guru

Ya Im in BC...it is confusing all the people involved in getting the meds to you..family Dr sends you to the specialist, then there are his HCV team nurses, phone calls with the fair pharmacare program for people without private insurance or money..phone calls with the drug company advisers etc , then because I was afraid of having $90,000.00 worth of meds delivered to my house

I had mine delivered to my local Shoppers pharmacy so then they were involved too..

Anyhoo, itll all be fine, hope you get started soon

Alison

Iris Dragonfly · Guru

I get my meds by Fed Ex...I thought it was weird too.

Best wishes on your treatment!

Iris

-- Edited by Iris Dragonfly on Sunday 8th of July 2018 01:25:34 PM

woodytwoshoes · Member

Thank you all for the encouragement and tips. I don't have a lot of info yet, but im 67 and F2, gen 3. low viral load. Have to sort out all the details with Doc on tests and visits etc. Its a weird setup here in Canada, the Dr. can't prescribe the meds, some offshoot of Giliead handles the deductible and the ordering of meds that get delivered by courier to my door once a month. Very strange.

Thanks again

Woody

Tig · Admin

Good choice, Woody! As you’ve been told, you’ll avoid most, if not all side effects by simply guzzling the fluids. Keep your eye on the prize and power through it. You’re going to find out it’s easier than you might imagine. Open your mind to Dragon destruction, phase 1...

Observer · Guru

Good decision Woody,

It really will be worth it...I realize your disease hasnt progressed to a point of cirrhosis or anything, but I really think youll be glad to be rid of the nasty little dragon.

As far as side effects, on days that I forget to drink water, I had headaches, on days I remembered ...no headache...needless to say, its a good habit to be in and I still drink a ****on of water everyday.

look forward to hearing about your journey to the HCV free zone

A

Canuck · Guru

Hey woody,

Another big yay here for ya! biggrin

Glad you made the decision, we acknowledge it was kind of a tough one for you, what with almost starting earlier in June, and then having second thoughts - but good for you to think it all through, weigh risks and consequences, go back to doc and then decide to go for it now.

I think you might have based your decision on common sense likelihoods, I think you have made the best decision. NOTHING is more important than your health and your future health.

No time like the present to deal with a problem that needs to be solved and dealt with.

You will need a signature line ... try something like this and then just fill in the blanks, actual numbers/dates (lab results, etc.) if and when and as you find some of your labs out ...

... Male, 67 years old, GT3 (a or b?) over 30+ years, since aprox age 30?. Pre-treatment ALT __, AST __, VL __ (low?), abdominal U/S and fibroscan done (verbal report was that they were "OK"). Tx Epclusa 12 weeks, SOT July 10? to EOT Oct 2?, 2018 ...

If you ask your doc and his office, they should be able to provide you paper copies of all your labs and test results (from pre-treatment to ongoing), and from U/S reports to fibroscan numbers).

For your convenience, find out as soon (as you can) what exact days you are expected to go have blood samples drawn through treatment, and what days you may need to see the doc for an office visit, so you can plan ahead, to be able to accomplish these things on time.

Good on you for your soon to start "Day one"! : ) C.

PS - You are going to need one of these everyday, lug it around with you if you are on the move. wink

Image result for gal a day drinking water

SeeTheLight · Senior Member

Good Luck Woody. smile I hope you cope well with your treatment. I can't say I havent have some side effects, but honestly those I have suffered haven't impacted on my normal life. I don't work but I do keep fairly busy. Fair enough its not a heavy physical job but fatigue has not reared its head with me, so hope it wont with you either. I sleep 6 hours if i'm lucky. Drink plenty of water and stay positive. I have only 15 beans left to EOT. I look forward to reading how you are going.

5-1-18 · Guru

yay woody. biggrin biggrin

woodytwoshoes · Member

after much deliberation, i have decided to go ahead with treatment. was a bit concerned about the fatique thing as i work a very physical job. Just hoping i have the energy to do what i need work wise.

wish me luck

woody

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