Hep C Discussion Forum

Ruby Red · Senior Member

RE: On my way to Club Zero

Ruby Red · Senior Member

Awww thanks for being so happy for me smile It's been a long road to this point. Since 2007 it's been a roller coaster of emotion, from disbelief in being diagnosed, failed treatment, always being plagued by the knowledge of the virus living in my body doing it's best to take me down, to the realization that I must try treatment again and all that entailed then today! I've been emotional since seeing my results and feeling a sense of relief, a sort of emotional exhaustion. smile Grateful and thankful that my prayers are being answered.

So onward it is to the sweet SVR. The dragon is going down!!!!

We've got this my friends

robertsamx · Guru

Good news RR

Looks like you went und really soon into treatment.That's great news.Love seeing all you on Epclusa clearing the virus . Congratulations. RC

Phoenix17 · Senior Member

Happy UND day to you,happy UND day to you, Happy UND day dear Ruby, happy UND day to you! (sung to the happy birthday song) That is wonderful news! So happy for you. Week 6 rocks!

Canuck · Guru

Hey, hey Ruby!!!!

Nice. THAT's the way we do it!

Ya, it's funny alright, how jarring, impinging that UND is, in print, jumping out at you and into your mind for processing!!, the very busy happy but pre-loaded emotional jostling of that und now entering into and banging up against the grey matter, tends to make one temporarily forget all about the lab tech!

I found the "welling" was not only tears in my eyes, but a "welling" in my mind, even with my first VL crash to 237!, and then with every ALT and VL following. I knew I was free.

Ah, velpa, C.

Cheddy · Moderator

Oh Ruby Ruth. That's so good to hear. It even leaves the nasty blood draw in the dust. You'll be finished in no time. evileye biggrin Ever onward!

JimmyK · Guru

Hiya RR.

Indeed, it is a great feeling the first time you see or hear the coveted UND. Almost unbelievable but the evidence is all around us here. This stuff works! wink

Keep up the great work! We are all cheering you on to Victory!

JimmyK

Ruby Red · Senior Member

Hi Everyone

I just got back my appointment with my RN, she pulled up my VL results and said, come and take a look, NOT DETECTED is what it read. I had to read it again and must admit it made me well up.

Week 6 starts today

EricChuckFar1 · Veteran Member

Cinnamon Girl wrote:
Hi RR... I was squirming in my chair as I read your account of the blood draw, ouch!!
But...wow!... ALT of 26, now that is very good news indeed!!! I don`t think you have any need to worry about the missing AST result, annoying and frustrating though it is!
Excellent progress, keep going!

I have to agree. I was squirming too as I read the post!

Congratulations on the good progress Ruby. Now onto the next step!

Tig · Admin

You've got a lot to look forward to! These are effective protocols and you're going to be very pleased with the coming results. Let's hope that lab tech didn't put it in her pocket and take it home! Pfffft..... You can giggle next time, just don't tell her why! You may end up with another sore arm! We'll all be waiting to hear the good news!!! smile

Ruby Red · Senior Member

Thank you everyone for you support. I also believe that the other results will be as positive. Fingers crossed I may have VL results Wednesday.

Ruby Red · Senior Member

Thanks for the belly laugh Tig.....I'm going to giggle next I watch the opening of the swab smile

Cheddy · Moderator

Ruby,

That's very good news on the ALT.

The rest is just part of a day gone by at a clinic. You are on your way to bigger and better things.

I'm glad your health plan is coming along.

Cheers,

Cheddy

Phoenix17 · Senior Member

Great news Ruby!!! Why they have people that don't know what they are doing is beyond me. Frustrating! The only thing that matters is that your levels are down. Awesome!!!

Tig · Admin

That ALT is a beauty! If the ALT is down, I'm confident the AST is too.

Sorry about the unskilled and uncaring phlebotomist. I think many labs are hiring people with limited or no experience and trying to teach them in the back room. I remember when I started drawing blood and giving injections, they made me practice on an orange for days until they liked the technique. Then they made us practice on each other in class. You learn when you're the guinea pig. Handling the syringe/needle is vital to a comfortable experience. So is experience on the job. Sounds like she had little of both. I get concerned when I see them having to read how to open the alcohol wipe....

Cinnamon Girl · Guru

Hi RR... I was squirming in my chair as I read your account of the blood draw, ouch!!

But...wow!... ALT of 26, now that is very good news indeed!!! I don`t think you have any need to worry about the missing AST result, annoying and frustrating though it is!

Excellent progress, keep going! smile

Canuck · Guru

Jeez,

Gotta be the same tech from hell as SF's!

But, OH-MY .... we all know what that ALT means ... don't we!! biggrin biggrin

I am SO glad she only wasted the AST, and that you did get the ALT (albeit the hard way).

Ah my dear, you are on your way, same as the rest of us epclusians!

Now, THAT's how we do it!!!!! Yay ALT, yay Ruby, yay velpa! Stoked for ya. biggrin C.

Ruby Red · Senior Member

Hi Everyone

As you all know I have been, like every one else, looking forward to my blood tests/results. Wednesday I had my blood drawn knowing I would be waiting a week or so for my VL but I would have my LF results in 24 hours. Thursday I looked up my LF results and found only ALT was tested, so off to the lab again yesterday to rectify that. This morning I again looked on line only to find this as a result

"AST : Specimen hemolyzed. Unsuitable for measurement of this analyte"

I have no idea what happened here....the technician was terrible...she would not use a smaller needle which I need as my veins roll (inherited that from my Mom) and while she was drawing she was moving the needle around and literally pinching my flesh around the syringe. Whether she went right through my vein I don't know, I can tell you it was uncomfortable to say the least. I imagine I will be going back this week again. Needless to say I am frustrated and actually "pissed off" that these 2 mistakes happened. grrrrrr

On a brighter note: My ALT is 26 smile In August/16 it was 72. So although even this seems to be like pulling teeth I'm very happy to see my ALT reduced considerably

Your happy yet frustrated friend

Ruby Red · Senior Member

Thank you Everyone for your lovely words :)

I have to share.....Unfortunately more times than not I have had to deal with judgemental lab technicians BUT not today I had this lady who was friendly and actually shared with me that her brother in law has recently been diagnosed, infected by a transfusion in the late 80's. We spoke frankly and discussed the stigma that comes with being infected with this rotten virus. Actually we had a few laughs. Such a turn around, it actually made my day :)

Apparently my vl test results can take up to 2 weeks but I should have my LF numbers tomorrow...that will get me through till the 31st when I see my doc.

Phoenix, look at us, we are 3rd of the way through already...whoohoo! I'm looking forward to hearing the good news your blood work is going to report as well!!

RR

Phoenix17 · Senior Member

It went fast Ruby! Post numbers when you have them. I am right there with you!

Cinnamon Girl · Guru

I`m cheering you on as well from over here, RR! Great to hear you sounding so positive.. but why wouldn`t you!

These last 4 weeks seem to have flown by.... hope it feels that way for you too! Good luck!! smile

EricChuckFar1 · Veteran Member

Ruby Red wrote:
Four weeks done....blood drawn tomorrow I must say, for the most part Epclusa has been quite easy. I am so grateful!
RR

Good luck tomorrow!! Congrats on being done with the first four weeks!

Tig · Admin

Good luck, RR! I know you'll be pleased with the results. It only gets better from here! smile

Canuck · Guru

Yay tomorrow!

You're gunna get some good news, and you deserve some!

Well ... I know ... just getting the epclusa was really good news, but ... there will be much more!

This is nice! (and for me too)!!

Loved your thought - "Never have I looked forward to blood work until now". smile C.

Ruby Red · Senior Member

smile Four weeks done....blood drawn tomorrow smile I must say, for the most part Epclusa has been quite easy. I am so grateful!

RR

Tig · Admin

Don't worry about the week 4 test. If it's undetected, great. Many people don't test until 6 or eight. I know someone that was detected at the end of treatment, yet was SVR12. These drugs work differently and we respond similar but different. How's that for spin? Ha! You'll get there when the Dragon can take no more!

I never turn down a viral load test when offered. It's a party in my own mind every time I see that word: UNDETECTED. If you can get them when you want them, go for it. A little suspense is good for the soul however! Good luck... smile

Ruby Red · Senior Member

smile Yes we are are on our way. I will be having blood work done at 4, 8 & 12 weeks. Never have I looked forward to blood work until now lol

Canuck and Tig I knew I'd have to wait till my 4 week mark but I'm going to the doctors a week early as the next week is Thanksgiving and having a short week things can get hectic. I want that requisition in my hand lol It was suggested that blood be done at 4 weeks and then 12 but after my last treatment fail we decided to have it done at 8 weeks also. I realize that my four week mark may not come back undetected and I will not be concerned. I'm not thinking that way however I'm just going to roll with it IF and that's a big "if" it comes back that way. I know I will have better liver function numbers for sure. This virus will no longer inhabit my body and I must continue my stand! smile

Phoenix17 · Senior Member

2 weeks under our belt Ruby! I have blood work scheduled at 4 weeks, then not again until 12 weeks after the last pill is gone. I can't wait to hear how your 4 week numbers are!

Canuck · Guru

Yep, I would want (ask for it) a 4 week PCR and LFT's, but, we can't always get what we want! (some people have found). Even finding out what your LFT's are now (your ALT alone!), would be nice! It is always such reassuring feedback, to be able to see that ALT when it first starts to tick downward! Oh this is going to be so exciting! I can hardly wait too!.

I was just lucky (ONLY because of my trial requirements) that I got very frequent bloodwork feedback (at week one, two, four and EOT eight). So I was able to know my ALT and load had already started it's crash at week one! So far, for all of the Alt's we have seen for those on sof/vel or sof/vel/vox regimes, we are seeing really good and telling drops in ALT's (and loads) by about week 4. Some more, some less, some very early, others slower, but all basically following this stellar suit!

Don't be surprized or disappointed if you are told no bloods until week 4, the wait is hard, but the results will only be sweeter! smile C.

Tig · Admin

Hi Ruby,

Good luck on the testing. I would want to wait until week 4 if you can. That's a good starting point and is going to tell you more than getting one too soon. There will no doubt be some good indicators from the Liver function tests, but the viral load may not be undetected yet. It happens, but less frequently. If you don't have any problem getting approval for another viral load test at week 6 or 8 (in case the first is still detected) then go for it. Some insurances and doctors are very stubborn about requesting them. They can be very expensive. Some members don't get one at all during treatment, maybe at the end and some not until week 12 after the end of treatment. Be sure to ask when you see the doc on Monday.

Ruby Red · Senior Member

Hi Canuck

I have a Doctor's appointment on Monday and he will give me the blood requisition at that time. I will get the blood test done as soon as I can. He would probably want me to wait till I complete week 4. before I get tested. Any which way, I can't wait. I will be sure to post the results when I get them.

Canuck · Guru

Go Ruby go!! Yer killin' it girl!

When is your next planned PCR and LFT's? biggrin C.

Ruby Red · Senior Member

Epclusa and I have been working together for 2 weeks and all is well. Two down, 10 to go!

-- Edited by Ruby Red on Tuesday 27th of September 2016 09:51:30 PM

Sydhanrahan · Guru

So happy to hear that work one was a walk in the park Ruby. And having moments if feeling really good!

Fantastic news,

Syd

Cheddy · Moderator

Good news, indeed. These new treatments bode well for a much less complicated treatment future. I was so very lucky to be diagnosed, treated, and cured in a six month span, although I lived with far too much misdiagnosed fatigue. Education and testing is key. So many people still don't know that there is a cure.

Thanks from the bottom of my heart to all the brave pioneers.

Shadowfax · Guru

Great news and why are we not surprised!

It just gets easier from here now you have passed the initial concerns of starting TX.

Please keep us posted on your progression as labs are done.

SF

Ruby Red · Senior Member

Thank you everyone!

I was all set, probably over prepared to start Epclusa (first dak/sol), thinking I'll be ready for any sides, again anxiety from treatment past but Epclusa couldn't be further from the past. I have to say there have been a few days that I've felt better than I have in years lol

I will no longer allow that rotten virus to inhabit this body...standing firm AND drinking lots of water lol

Have a wonderful day all! For the first day of fall we are still experiencing summer weather whoohoo!

Tig · Admin

T Minus 11 and counting, lift off of Week 1 = Total Piece of Cake! Woot!

Congratulations Ruby, you go girl! Keep drinking that water...

Canuck · Guru

Ruby,

Can't tell ya enough, how tickled I am for ya (understatement), you being the first fellow Canuck getting it by script and all, but equally ecstatic I am for ALL our fellow epclusians on board now! (as I am for all the prior sof/vel trial folk here, and us sof/vel/vox trial ginny pigs who share your good fortune). Yay, yay, yay! KILL, KILL, KILLLLL!!!!! biggrin C.

Phoenix17 · Senior Member

Awesome Ruby!

Ruby Red · Senior Member

smile One week done, 11 more to go and I have to say I'm feeling great! smile

Phoenix17 · Senior Member

Glad to hear it Ruby! My first few days were pretty good. A few small headaches the first day. today the headaches were better. Just a little when I woke up. So far so good!

Ruby Red · Senior Member

Hi Phoenix 17 My first day has been ok actually. How about you on your second day? I'm hoping all is well!

Phoenix17 · Senior Member

How was your first day Ruby Red?

Sydhanrahan · Guru

So much news in one short thread. Congrats on your meds Ruby. You must be really chuffed. And Pablo - that's like a bad dream. How could they do that? Have you had a chance to phone them? i know, I know... Human error and all that but when you have a job where information is literally life and death and at the very least, a total head f~%, surely you have a duty of care to casually match up birth dates on letters and results.

'Take care,

Syd

Ruby Red · Senior Member

Canuck I am the first to receive Epclusa at the Hep clinic where my doc is and was the first to be approved for sol/dak as well. I do have private insurance but that didn't eliminate the wait. They had to make sure I am sick enough to be approved for such a costly therapy. I am truly thankful that I do have the extra insurance to say the least. lol My pharmacy was amazed I have been given a prescription for a drug so new to the market also.

Ontario Health, I hear is offering sol/riba under Compassionate approval.

Yes I'm happy....the Epclusa wasn't delivered today but it will be tomorrow so I will commence my 3 month sprint tomorrow :)

Phoenix 17.... I see you started tonight at 7...lol tomorrow evening we will both being taking our little warrior at the same time smile

In the past few months have increased my water intake to ready myself...you know getting in the habit lol I heard 3 litres is the ticket.

My Doc knows I have been taking Essiac and I have to say my white blood cell and platelet count has increased since I have, he doesn't believe it's the essiac lol We did go over my BP meds which are ok, I take nothing else except for my supplements he said ok however I do not want to put any further stress on my liver especially during treatment so I have decided to stop.

Thank you Cinnamon Girl for the info about the supplements and the info on the smoothies. I have prepared quite a few vegies/fruit which are waiting in my freezer for the new concoctions I will be making lol Thanks for sharing the site, I will check that out asap.

Pablo I am very sorry to hear of the mix up...rest assured when the results come back with all "your" info it also will say UND. Just a hurdle...don't get discouraged...think positive!! Club Zero!!

This whole process has a way of keeping us humble, grateful and so thankful all at the same time...my opinion for what it's worth

Tig56 You are a walking wealth of information as well as other administrators, including senior members. Thank for all the research you all do for us.

Thank you so much for your words of encouragement, it means so much. As many of you know it's difficult to discuss what's happening to us, what we are going through with others, they just don't understand...I have to thank God they don't and never will!!

I'll keep you all posted smile

Ruth

Phoenix17 · Senior Member

Congratulations Ruby!!! I am excited for you. It sounds like it's been a long road, but it's all great now. I started tonight at 7:00 pm on advice from others.

Yes, you are on your way!

Pablito · Senior Member

Oh, I've just looked at blood result form again and not only is the DOB wrong but the subject initials are wrong so they've sent me the wrong patient's blood results. That's frustrating to say the least...it's anxiety-provoking enough waiting for the most important VL post-treatment without all this. So I must now wait until Thursday (the next day the clinic is open) to find out if I am UND or not. Really!

Pablito · Senior Member

Hi Ruby

I took it in the evening around 7:30pm. My thinking was that if I got side-effects then I'd sleep through them. The reality was the side effects were so minimal it wouldn't have mattered when I took it so it's really up to you and when you feel is the time of day you'll most remember to take it.

I set a reminder in my phone to take it each day. And I carried a spare tablet with me in case I got locked out or whatever.

I got my EOT+12 result on Monday (UND). But then I noticed that the DOB was wrong on the blood result form. It's the correct year of birth but not day and month. I'm assuming it's just an admin error but it's left me wondering if they sent me the wrong person's result. There's no name on it because I was in a trial.

Pablo

Canuck · Guru

Dear Ruby,

CONGRATS!!! Wow, you get epclusa! I'm just thrilled for you! Good job!

I am so excited that a CANADIAN has got their epclusa by prescription!!! As far as I know, you are the first Canadian I have heard of (at least on this site anyway), that has got it by prescription!!! Yay! Maybe you ARE the first! Did your doc tell you he had anyone else on it?? Maybe many are already getting it in other Provinces?, maybe I just live in a silent nutshell here in BC!

I am more than stoked (as Gracie would say in her lovely Canadian understated way) that epclusa indeed appears to be rolling out in this country!

Do you have an extra/private drug insurance plan, maybe that helps? Maybe the prior failure helps (as twisted as that sounds!)?

All I know is that in my case, in BC, as a treatment naive, I was offered only sof/rib via our BC Pharmacare/public Medical Services Plan, and, I would have had to flunk sof/rib first to even be offered sof/dac, thus why I got into a trial instead. Maybe Ontario Health Insurance (OHIP) is more on the ball than our health folks in BC!

I don't really need to know how or why - all I know is that I am thrilled for you to get it. Sof/dac would have done it, but i am convinced sof/vel is the number one choice for many people.

Time of day dosing , see what I wrote to Phoenix.

The Essiac, personally I would drop it. Did you not speak with your doc about it?

For my trial, they and I, were extremely careful to document everything and anything I was taking (but mind you it was a trial), data is important to them. I was taking quite a few minor mineral and other supplements and I minimized them, very much, (my own decision) during treatment, but they knew exactly what I was taking. Every appointment they would ask if I had changed ANYTHING (I phoned for permission from my trial doc, first, if I needed to take an antibiotic script from my GP for example). I did not increase any supplement I was on during treatment, nor did add anything new, if anything I decreased/minimized my supplements. Unless you are convinced your supplements are critical, I would drop them, but that needs to be a discussion between you and your doc.

I hear Essiac has some definite effects, so I would definitely ask about anything you would be tempted to take additionally during epclusa treatment, even ask about any regular scripts or over-the-counter drugs you are currently on, if you have not had that discussion with your doc.

Water - important, see what I wrote to Phoenix.

You are a lucky gal! You got it made this time with epclusa. I am so glad you got it! To tell you the truth I was bummed thinking you would have a long wait to get it (as if it hasn't been a loooong enough wait/road thus far!!), so, I am overjoyed it worked out and you got approval. Sheesh - only in Canada you say! biggrin C.

-- Edited by Canuck on Tuesday 13th of September 2016 04:45:43 PM

Hep C Discussion Forum

Legal Disclaimer: