Hep C Discussion Forum

Bloomster · Senior Member

RE: Should I ask for a 12 week check?

DJ · Senior Member

Well Biggyb, I bet we will both be pleased with our 6 month results. It just really helps to hear things are still good at 12. And mallani, thanks! That is good to hear. I am feeling more confident, but of course with each UND test it feels even better :)

Biggyb · Guru

Very good news DJ, i don't blame you for getting the 12 week VL done. I also had to talk my Dr into giving me one. I too UND, but still nervous about the 6 month one just like you. Just hoping for the best. Good luck to you..

mallani · Guru

Hi Deb,

Congrats, that's great news. Very few (if any) patients relapse between 12 and 24 weeks post Rx. The Trials and my conservative doc, accept SVR12 as a viral 'cure'. Start the celebrations. Cheers.

DJ · Senior Member

Thanks Jill.....and can I just say, you are such a blessing to everyone on here. I honestly don't know what I would have done without you and this group. You were so helpful when I had questions in the beginning, especially since we had the same genotype. 15 months ago when I got the news that I had Hep C I felt like my whole world was falling apart. I was so scared and felt so alone. This site is what got me through and I will be forever grateful :)

DJ · Senior Member

Well this week I had my annual physical with my regular doctor and I asked if she would be willing to order a viral load test for me since my Hep Dr wants to wait until the 6 month mark. At first she didn't seem to want to because she wants me to do all of those things through the specialist, but I told her I just want peace of mind and if it comes back showing a viral load I will contact my Hep Dr. and tell her what is going on.

So she agreed and gave me an order for the test (that way I didn't have to pay for it, I know I could have done it on my own but then my insurance would not have covered it).

Well it came back NOT DETECTED!!!!!! I do understand that this could still change, right? It might still come back at the 6 months mark (which is why I assume the special wants me to wait until then). But I do feel a little bit less stress now during the wait.

Thank you all for you advice and support :)

Cinnamon Girl · Guru

Hi DJ, that`s fantastic news, and I don`t blame you for getting this vl test done, waiting 24 weeks really takes a toll on anyone`s patience.

Well, you`re over the 12 weeks post tx mark, and still being UND at this point pretty much guarantees your SVR... it`s very unlikely you`ll relapse now especially as you`ve been UND right through from week 4. It`s still worth having your 24 wk test done, just for peace of mind, but it looks very much like you`ve cracked it!

Congratulations!! biggrin

mallani · Guru

Hi Carol,

Hubby's going to get his SVR so it depends on whether you can convince your doctor to do a 12 week test. If he won't, it's up to you. If you want the 12 week test you'll have to pay for it, and if you don't want to pay, just bite the bullet and wait for the 24 week one. Both will be Undet. but it depends on whether you are prepared to wait.

Biggyb · Guru

Good luck Carol, i don't understand the EOT plus 10 days. But i guess each doc is different. Did he also get one at EOT? then another 10 days later.

Carolinca · Senior Member

My husband's doctor is having him do a viral load at EOT plus 10 days and EOT plus 6 months. I figure that we will first get the EOT plus 10 days done first, and then we can worry about asking his doctor to do an EOT plus 12 weeks. One step at a time.

~

Carol

DJ · Senior Member

Well if my doctor will order it, then it is free. So I will ask my primary doctor first, and if not, I will call the lab and see if I can have it done myself and how much. I am sure in three months I will want to know. So far my insurance has paid 100% of my labs.

Thanks!

Zlikster · Guru

DJ you can have it done, without any doc ordering i think...here it costs (at state hospital) round 100$ (in private labs is round 150$). I pland to do it on 3rd month of course, screw my insurance and their policy only one PCR EOT @ 24w

as i mentioned i have paid from my own pocket to while on tx 4w and 8w PCR, since insurace was only covering 12w one.

DJ · Senior Member

Thanks everyone. I do have an annual physical with my primary doctor coming up in a couple of months. Maybe I can ask her if she would order a test. I can't hurt to ask!

mallani · Guru

Hi Deb,

I think that's mental cruelty making you wait until EOT +24 weeks. Why don't you point out that an Undet. at EOT +12weeks is now accepted as SVR by the Trials, and many Hepatologists. The chance of relapse between 12 and 24 weeks is miniscule. Good luck.

Bills · Guru

I forget where I heard this

about additional testing.

(He ) was on a BLIND / BLIND trial and couldn't get his viral load test from the drug company, the treatment center couldn't order test on side either ( they violate the agreement with the drug company ) and he would be kicked off the trial

His insurance covered at least (2) VL test at his primary MD doctors request. It looked like ( his primary MD Dr. ) wanted the testing separate and apart from what was going on with the trial or any Dr.s at the Hematology liver group he went to. . He also shared those results with liver Drs and gave them information they couldn't get. He didn't get any information on anything from the Trial till months after the 48 week Trial ended he and already relapsed at 45 weeks How would have been, nice to find out months later.

I cant speak for everyone's coverage his happens to be very good. But it won't hurt to ask your regular MD if he can do it. As he said make sure you get the tests you need to see. I think it's VL and Quantification not just a HEP C antibodies test. And make sure it will be covered before do it.

Just saying

Bill S

ucbgal · Senior Member

dj,

knowledge is power! after all the hard work anyone on tx has done their drs. should respect there requests. i have a standing weekly test order my dr. sent to lab corp. you may want to request something similiar w/ 3 month intervals. good luck.

sandy,ucbgal

Bills · Guru

I'm glad your getting a post TX test it should ease your mind. If it's good just live like it's over until you get SVR

BillS

Biggyb · Guru

Love the pict Zlikster, you said you were gonna do it. And there it is. Nasty drugs.

Zlikster · Guru

while on tx, i've paid for 4th and 8th week pcr (my insurance was covering only 12w pcr)

so, i plan to do on my own 12w eot one too. peace of mind is much more worth than 100$.

cheers

DJ · Senior Member

Cinnamon Girl wrote:
Oh well, it was worth asking, DJ. It`s usual to have an `end of treatment` viral load test done, so that`s why you`ll be having one next week. I had mine about a week after I`d finished tx too. Best of luck with that one anyway!

Oh OK, I guess I didn't remember reading about the end of treatment test. Thanks.

Cinnamon Girl · Guru

Oh well, it was worth asking, DJ. It`s usual to have an `end of treatment` viral load test done, so that`s why you`ll be having one next week. I had mine about a week after I`d finished tx too. Best of luck with that one anyway! smile

DJ · Senior Member

Well it was a 'no go'. My doctor wants me to do a viral load test next week (10 days after treatment stopped) and won't order another for 6 months. I asked her about the 12 week, and she said that wasn't necessary. She does a post treatment test and a 6 month one. So I guess....it is what it is. I mean knowing at 12 weeks versus 24 isn't going to change the outcome. I don't understand the test next week. I would prefer for it to be at 12, but this office does it this way so oh well.

Thanks for the input everyone. I guess now I will find out at Christmas.

news · Guru

DJ,

I think there is nothing better than knowing, even if the news is bad. If they'll pay for it, get the tests. There was one fellow around here when I was in treatment whose doctor told him he had SVR at 12 weeks post, because "nobody relapses after twelve weeks". Well, my doctor made me wait the full 24. And believe it or not I just came from the labs where I got a 48-week post treatment suite of tests. It was primarily for prep for some endocscopy stuff (esophagus for varices and sygmoidoscopy for Incivek damage), but I couldn't help noticing there was a viral load included, along with the normal stuff to include AST/ALT, etc. So, a year after finishing treatment, I have that old, familiar anxiety about lab results coming.

Best to you and all the others.

Alan

JoAnneh · Guru

DJ, glad you decided on getting test
EOT 12 week. I still have 2 weeks before my
Test. I haven't kept much anxiety but closer
It gets the more its on my mind.
I feel hopeful it's gone! That's my story
And I am sticking to it.
Hope you and BIGGY are feeling better daily.

-- Edited by JoAnneh on Tuesday 2nd of July 2013 12:21:11 PM

DJ · Senior Member

Biggyb wrote:
DJ wrote:
It was so exciting to end treatment....but a whole new 'anxiety' over waiting to see if it really worked. I guess it is all part of the process.
I know exactly how you feel, especially the 'anxiety'. Take care and try to relax.

Thanks :)

Biggyb · Guru

DJ wrote:
It was so exciting to end treatment....but a whole new 'anxiety' over waiting to see if it really worked. I guess it is all part of the process.

I know exactly how you feel, especially the 'anxiety'. Take care and try to relax.

DJ · Senior Member

OK thanks everyone. You are right. It is best to know....sooner than later. I have my appointment tomorrow so I will ask. My blood tests are 100% covered by insurance (as long as I used a certain lab, which I do). So I just need the doctor to write out the orders. I would bet if I asked she would do it.

It was so exciting to end treatment....but a whole new 'anxiety' over waiting to see if it really worked. I guess it is all part of the process.

Zlikster · Guru

hey DJ, my doc told me EOT PCR straight away and 6 months EOT, but i will do 12w one to on my own, just for peace of mind

Biggyb · Guru

DJ wrote:
So do most of you get a 12 week? Or just wait for the 6 months?
Thanks

I Also went to my EOT Doc appt. last week. He said he checks in 6 months. I said 3 would ease my mind some, so he said ok. He cool like that.

I am prepared for the worse. it's hard not to be when you've relapsed twice before. But svr would be awesome..

edmed · Veteran Member

Hi DJ, I'm shaky grounds with my TX for the moment because at my 12 WK blood draw i'm still DET. I would want to know how I'm doing with TX if i could help it. The doctor i see has no problem testing me every 12 wk, while on TX.

I would think if you ask your doctor and your INS allows it!! Then why not!!!

Bills · Guru

I'm also a little surprised they would wait a full six months If it were me I'd want to know and get relief that it was worth it so far and if it was successful

My last treatment also failed and I wanted to know ASAP if it fails. I would have went another unnecessary 6 months if I didn't insist

I hope you get the green light Good luck

Another trick is go your primary doctor and ask for the test. Just make sure you are asking for the correct tests

I'm sure someone here can list them for you. So long as your insurance will cover it Most will

Bill S

marktrux · Senior Member

My Dr had me do a EOT+6 week test. Which is different than most Drs but his reasoning is, and I can't argue with him, that most people that relapse, do so quickly after treatment. I've relapsed 3 times before and every time it all went to s#$t by the 4 week test. I guess it really depends on the Dr and your wishes. It could cut your worry time in half but it could also be heartbreaking to find out later that things had gone bad after the 12 week test.

DJ · Senior Member

I finished up all of my treatment last week and tomorrow I see my doctor. I remember when I started in January the nurse mentioned to me (when we were alone) that the doctor usually orders blood work at 6 months, but that I could request a 12 week check after treatment.

Should I do this? Is it worth while? I mean, if I am still UND at 12 weeks post treatment, it that a pretty good indication that it was successful? I realize if it shows back up at 12 weeks that it means it didn't work.

So do most of you get a 12 week? Or just wait for the 6 months?

Thanks

Cinnamon Girl · Guru

DJ wrote:

Should I do this? Is it worth while? I mean, if I am still UND at 12 weeks post treatment, it that a pretty good indication that it was successful? I realize if it shows back up at 12 weeks that it means it didn't work.

Hi DJ, yes you`re right, if you`re going to relapse it usually happens within the first 12 weeks post tx, so if you`re still UND at that point it`s a very good indication that you`ll achieve SVR at your 6 mnth test. I would think it would be a very good idea to get a 12wk viral load test done, just for peace of mind. I had to wait till 6 months post tx and it`s a long time!

Congrats on finishing your tx, best of luck with a speedy recovery!! smile

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