Hep C Discussion Forum

Sydhanrahan · Guru

RE: No EOT blood work???????

Loopy Lisa · Guru

Hi Canuck,

I have every month a blood check to see how my general stats are OK - ALTs etc, but no viral count. I am OK not knowing as I think I will clear regardless. As I knew this in advance, it hasn't worried me at all.

At Tom, like Jimmy said, if it worries you so much get an independent test, or ask your general GP to do one. I think they understand patient worry, or I hope.

Fingers crossed your all free for what sounds an amazing holiday. :D

Linuxter · Guru

Can totally relate Tom,

Only one HCV RNA for me so far, that came at week 4 and was <15 DETECTED ... they won't give me another till July when I'm EOT+12.

Between the Riba Rage and not getting to see UND yet I've pretty much been a bit PO'd this whole time.

Periodic Viral Load results, however, are a mixed blessing IMO, I've seen many on this forum second guessing this and that and worrying about 1 or 2 points difference etc ... it's almost better to just do the time and find out when we find out.

Hey, at least you have something very entertaining and fun to do while you wait.

Enjoy,

Dave

JimmyK · Guru

Hiya Tom.

No problem if my response was < that which rocks. It is just kind of the way it is.

A HCV RNA at EOT is kind of worthless really. Once you hit UND on Harvoni you stay that way through treatment. Your blood test at EOT would be UND. Even still and knowing that, it is the 12 weeks later that matters, and even if you pay for them to tell you UND on the 27th that fact is I can tell you that you will be, for free.

The guys that set the protocol are actually the Insurance Company. They are also the ones who paid out the $94,500 in pills alone on a 12 week course of Harvoni, not to mention the Doctors visits, and blood tests that really matter.

Sure it may provide a moral boost but still and all, the fact is other than that, the test would be worthless.

I am very grateful that my Insurance Company paid to treat my wife. I am very grateful they also approved me. That is like $283,500 in Harvoni alone not to count the additional costs. Sometimes it is easy to forget the cost when we are greeted at the door by the dude in the little brown shorts as he asks for a signature. In my case the cost does not even take into account the prior treatment.

I would just like for us to be grateful for what we have been blessed with. Yea it is a little frustrating waiting to learn the news that one is SVR-12. But we need to remember those who have never waited for news like that because they never had the opportunity of treatment, let alone one with a 97% success rate.

My Brother In Law simply waited to die. And he did, never having so much as a glimmer of hope.

Shoot I don't fault you for being anxious. Truth be told so am I where Carolyn is concerned. I want to hear the words UND in her case more than anything life has to offer, but I also know I want to hear it at 12 weeks post Treatment. That will be August 20th and as far away as that feels, I don't want to hear anything any sooner because I know it does not matter. August 20th and thereafter matters and God willing the news will be what we are praying to hear.

I hope you have a great time down South. Enjoy the surf and know your day is coming and well worth the wait. We have come a long way my friend and truly, each of us are blessed.

Your Brother

JimmyK

Tig · Admin

Hey Tom,

It stinks to have to wait. I believe an EOT+4 is the perfect test, along with the EOT+12 of course. Nearly everyone is going to be undetected at EOT, and if someone is going to relapse on these new DAA's, which is rare, it generally happens by the EOT+4 date. If it remains undetected at that test, SVR is almost a given. There's about a .5-1% difference in rates of success between the two. But +12 is the real deal and what counts.

All that said, if you can't get a doctor to do a VL and you can't take the wait, you can do it on your own without a doctors order, but it's going to cost ya! Not sure what the going rate is now, they can tell you.

Private Testing

wendyo · Guru

Yes it sucks when we don't get what we want. Even if the doc told you one thing at the beginning and now it is different. Have you been praying for patience (just kidding). I am going to say what I thought and I am not tryng to be a jerk, but if you can afford to go to Nicaragua you can afford the blood test if you want it that badly and cannot wait. Another voice of reason. I am Jimmy's lil sis ya know.

Shadowfax · Guru

I am really sad they are doing this! I went 12 weeks on treatment without a C VL and although I knew it did not matter and really does not matter until EOT +12 .. Where is the compassion, the human element in this.

Why do you have to wait that long to know if the drug has worked ... having said that I used my LFT's as a good indicator because they were normal for the first time in over 40 years. This gave me hope that there was nothing causing my liver grief at least during treatment.

I am waiting for EOT+12 now but I would really approach any other doctor if you able to for routine blood work and LFT's that are typically included in that. Knowing those numbers and seeing them down will give you a good guideline.

As was said by Canuck and Pablo, and repeating myself, you can get them done yourself, and as I understand it easier than in Canada where Canuck and I reside. I would have gladly paid $150 or more for my C VL but I did wait.

Fingers crossed for you.

SF

** Jimmy is the voice of reason and an angel in disguise.

-- Edited by Shadowfax on Tuesday 21st of June 2016 06:56:07 PM

Tom · Member

You guys rock, except of course for Jimmy!!!!!!!! I don't want to hear reason, Jimmy! You sound like Dr. Alnoah's (who I love) staff. I was SO looking forward to good news. I wanted something real to celebrate. I will inquire about test costs... Harvoni for 12 weeks, Cheddy

Thanks, y'all. Even daggone JimmyK.

Canuck · Guru

Tom and Loopy,

Aw, that is just NOT fair!!

I find this SO maddening to see them keeping people waiting for VL's with NO feedback.

Why, oh why, do they do this to people! They know full well it is a relief to see your VL, ALT's and AST's crash.

I don't know, but your "protocol doc" should BE drawing regular ALT's, AST's, LFT's (and other bloods), and, at least knowing those blood results, would be comforting (to witness the crash of your Alt/Ast).

Even with no VL's, surely, "protocol" entails drawing LFT's and other bloods, (I would think it unlikely that they would NOT be doing some ALT's and AST's!). Get those, at least that feedback will be of comfort as you see them crash.

If you are NOT getting ANY cooperation from your "protocol" people (with even getting ALT and AST feedback), then I would consider going to (ANY) other more understanding, cooperating doc (another GP or family doc perhaps), explain the "lack of feedback" problem, and ask them to assist you in obtaining at least some periodic ALT's, AST's.

That' all I can think of! hmm C.

Cheddy · Moderator

Hi Tom, I'm not sure what treatment you've been on but protocols are different for different meds. Usually, with ribavirin, there are tests along the way to access sx or abnormalities, particularly anemia. Yes, it would be nice to have more assurance, especially since you expected it, but do your best to think the best and keep taking good care of yourself. Unless there is new information, try not to keep going over the same thoughts and worries -easier said than done, but shoot for it!

Pablito · Senior Member

Hi Tom

I hear your frustration, especially if you were told you'd have an EOT VL. But, ultimately, Jimmy is right: the only one that counts is the EOT+12 weeks.

During treatment/pre-EOT+12 VLs are a double-edged sword. I had a week 4 VL as part of the trail I did. It came back at 269. I spent much of the rest of the time on the trial worrying - needlessly as it turned out - that I wouldn't become UND.

That said, if you are super-keen on a VL you could get one done privately at a lab.

Pablo

JimmyK · Guru

Hi Tom,

Pretty much standard procedure. Carol had her HCV RNA run at week 4 of treatment. Week 12 is a Short Panel. Next HCV RNA is during EOT+12.

An EOT HCV RNA is kind of worthless. During treatment it serves to establish treatment is working. This is why if detected at week 4 then they tend to do a week 6 just to ensure no 10 fold increase.

EOT is just that, end of treatment so the only one that means anything is 12 weeks later.

They seem to be following standard protocol so no worries.

JimmyK

Tom · Member

No, Lisa, I have waited 12 weeks blindly, drinking three to four liters of water per day and having exhausting dreams, but otherwise just hanging in there and doing my job. EOT is Monday, June 27. I will have to wait until September 19 for a blood assay. I'm neither trusting nor patient, and I was told in advance that there would be an assay at EOT. Fretting? I'm very good at that. Just watch for the next 12 weeks... I do look forward to getting final results. Obviously the folks who developed this protocol haven't spent 12 or 24 weeks taking a miracle drug to eliminate Hep C.

I'll be on an annual surfing excursion in Nicaragua beginning 9/22, so I'll have to "trust" the medical staff will share my outcome via email. I'm glad my life doesn't depend upon that. "Enjoy your vacation, Herder."

Loopy Lisa · Guru

Oh bless you.

I have to wait until my 12 weeks is finished for a VL count, I will be blind through all of my treatment. I don't actually mind though as I might fret if its not what I want it to be. :D

I guess, you just hae to trust you are gonna be fine and look forward to getting the final results. :)

Tom · Member

I called my doctors office to arrange a prescription for a post TX blood test next Tuesday. No.
They won't prescribe another assay until 12 weeks out. Protocol.
I was initially told by his PA and by the pharmacist that I'd have three tests:
One for the insurance company before the last four week scrip. One EOT. And one EOT+12. Now they're saying there's no reason for inconclusive blood work at EOT, shut up, and wait.

I feel like they pulled the rug out from under me.

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