Author Topic: Treatment naive but still detectable after 4 weeks (Read 14927 times)

Bchu · « **on:** October 31, 2015, 09:20:43 pm »

Hello,
I'm really wondering what it means that I am still detectable after 4 weeks on harvoni,
<15 at least it's lower than the 6 million that it was a month ago. Since I am only on 8 weeks of treatment are my chances of being cured decreased???
Should I ask my doctor to try and keep my me on harvoni for four more weeks.
I'm really confused, anyone with experience in something like this

Had hep c since 2008, never treated, before treatment VL 6 mil,
At four weeks <15 detectable, 23 25 ast alt.
Thanks everyone .

Lynn K · « **Reply #1 on:** October 31, 2015, 09:32:23 pm »

Hi and welcome to the forum,

It doesn't mean anything that you are still detected at 4 weeks the only test that matter is the 12 weeks after treatment has ended. There is no correlation with early not detected and eventual SVR with this new generation of meds.

There have even been a few here who were weakly detected at the end of treatment but went on to achieve SVR 12

If you have any questions about your treatment your doctor is your best source of information

good luck on treatment
Lynn

moz1959mel · « **Reply #2 on:** October 31, 2015, 10:46:53 pm »

I really hate to sound stupid but what does "SVR12" mean? I keep seeing it everyone (just joined 2 days ago).
Thanks and be blessed

Philadelphia · « **Reply #3 on:** October 31, 2015, 11:07:07 pm »

SVR12 means sustained virological response at 12 weeks after the end of treatment. If after 12 weeks post treatment there is no virus, i.e. A sustained response, you are considered cured.

Lynn K · « **Reply #4 on:** October 31, 2015, 11:08:47 pm »

SVR= sustained viral response meaning the after a given time post treatment you have a sustained response against the virus

SVR 4 means not detected 4 weeks after treatment has ended SVR 12 is 12 weeks after treatment has ended still being not detected which by most doctors means cured SVR 24 = 24 weeks post treatment which the remaining medical professionals want to see before they will call you cures

And welcome to the forum moz!

slats1056 · « **Reply #5 on:** November 01, 2015, 01:06:44 am »

Hey Moz, The only stupid question is the one that is never asked. Keep on asking . The forums are a wonderful place to get informed and educated in all sorts of areas where knowledge is lacking or needs updating!

moz1959mel · « **Reply #6 on:** November 01, 2015, 08:49:37 am »

Thanks so much you guys

JAF · « **Reply #7 on:** November 01, 2015, 10:34:32 am »

Bchu welcome! With a 6mill VL pre tx it's not a bad sign to have some VL still detectable. I haven't had my 4 wk labs yet but I am already preparing myself that there may be some detectable VL still hiding somewhere. As long as it's minimal I can accept it. My pre tx VL was slightly under 4.5 mill. Like mentioned above. Svr12 is our focus. Good luck

Else · « **Reply #8 on:** November 01, 2015, 11:41:18 am »

Welcome bchu,

Just think of it - from 6 million to less than 15 in four weeks! It sounds like you're doing great. The viral load test you took doesn't measure amounts under 15, hence the generic "<15". So for all you know that number could be 2!

A wonderful start. Congratulations!

Hi Moz. The board is full of HCV shorthand: tx, sxs, SVR, etc. So if you need the 411 on any FAQ, ask away.

gnatcatcher · « **Reply #9 on:** November 01, 2015, 08:11:27 pm »

About HCV acronyms: In January, moderator Lynn K. posted a list of them along with their meanings. Here is the link to her post:
http://forums.hepmag.com/index.php?topic=1653.msg12340#msg12340

Lynn K · « **Reply #10 on:** November 01, 2015, 08:12:38 pm »

Thanks for finding that Gnatty

I knew I left that somewhere lol

I see that SVR is missing from the list but we sure use it lot now!

OK edit SVR is on the list

JAF · « **Reply #11 on:** November 01, 2015, 08:45:26 pm »

There is just so much info on here and if you check in every day you'll learn all the acronyms very fast. I joined on day 6 of treatment and had to look up what SVR and sxs meant. Tomorrow is day 19 and I've learned so much already. We can't pick up the phone and call the doctor with every thought or question but there's always someone here to offer advice. Thanks guys!

Else · « **Reply #12 on:** November 01, 2015, 11:27:42 pm »

Great list! So I had a RVR. Hey, that's kind of a BFD.

Lynn K · « **Reply #13 on:** November 02, 2015, 12:45:17 am »

Today with the new DAA's RVR is not as much a BFD as it was in the past with P/R Tx. Now we look for SVR after EOT to determine if Tx was a success and the Dx can change to UND HCV RNA

LOL

gnatcatcher · « **Reply #14 on:** November 02, 2015, 02:43:37 am »

Thanks, Else, for giving me a chance to prove that I don't know much. Not finding BFD on Lynn's list of Hep acronyms, I Googled this new-to-me TLA. I take it you DON'T mean:
- Boston Fire Department
- Bidirectional Forwarding Direction
- a streamlined, fun and affordable software instrument for acoustic drums
- San Diego's savory deli Big Front Door
- Behindertenfahrdienst (German: Transport of Disabled)
- Budgerigar Fledgling Disease
- Breakfast for Dinner
or a host of other things (Acronym Finder lists 77 possible meanings).

BTW, I think I've figured out which one you DO mean

Gnatty

Else · « **Reply #15 on:** November 02, 2015, 12:20:16 pm »

I feel ya, Gnatty. I used SNAFU for decades before I even knew that it was an acronym.

Now that I think about it, SNAFU should definitely be on the list as part and parcel of your average medication approval experience.

slats1056 · « **Reply #16 on:** November 03, 2015, 08:44:43 am »

I don't guess We need to get into FUBAR, BOHICA, or FYJIMO as they might not be appropriate for sensitive ears! LOL.

sapphire101 · « **Reply #17 on:** November 03, 2015, 10:36:03 am »

Lynnk could you repost that acronym thread ASAP for newbies and even oldbies?
Get it to the top of the heap or maybe under a different title?

Shenny · « **Reply #18 on:** November 03, 2015, 11:23:26 am »

Hi all. First time on the site; long time HCV. Infected 1970; Diagnosed 1994. Viral load 7M+ F4-cirrhosis. Treatment naive because I heard the side effects of Ribavarin/Interferon were too debilitating. I was willing to take my chances and wait till something better came along.

Then along came Harvoni. I started 1st dose of a 12 week course on October 2, 2015. The side effects so far are minimal. I'm more tired than usual, but I can deal with that. I took my 1st blood test on October 27th and tomorrow I have my first follow up with the doctor after starting treatment. Needless to say I'm very anxious about this appointment. I will let you guys know the results.

I'm so fortunate. I was approved for the treatment within a month of taking all the required scans and blood work. My $3k monthly co-payment was absorbed by a foundation. I wish everyone good luck with this treatment. I hear it is miraculous.

gnatcatcher · « **Reply #19 on:** November 03, 2015, 11:37:29 am »

Welcome, Shenny. You're in good company. I, too, got HCV in the early 70's but took my chances waiting, even though it was hard on my liver (see the pre-treatment stats below). When my patient portal sent an email indicating there were results from my 4-week lab tests, my hand actually shook when I went to click on the link. It turned out that Harvoni is indeed miraculous. I predict you'll be on cloud 9 tomorrow, or at least cloud 7 if the HCV viral load is slightly detected rather than undetected. Either way, your odds for a cure are terrific. -Gnatty

Shenny · « **Reply #20 on:** November 03, 2015, 01:24:21 pm »

Gnatty-

Can you please tell me what FibroScan F4 kPa 19.5
05/15/15 FibroSure F2 Necroinflam.act.grade A3 means? I am F4 as well. I have asked my doc how bad is my cirrhosis, but he keeps giving me an evasive answer. I am trying to find out the amount of liver damage I've sustained from this disease.

gnatcatcher · « **Reply #21 on:** November 03, 2015, 02:50:30 pm »

The FibroScan kPa is a measurement which is explained in this chart: http://hepatitiscnewdrugresearch.com/fibroscan-results-the-scoring-card.html
Necroinflam.act.grade A3 is "Severe activity" (A3 is the worst; A0=No Activity, A1=Minimal activity, and A2=Moderate activity). Necroinflam. stands for necrosis + inflammation.
There are various ways of measuring whether there's fibrosis and, if so, how much. Biopsy is one way, FibroScan is another, and various blood tests such as the FibroSure are yet another way. They each come up with a fibrosis score, with stage F0 meaning no fibrosis and stage F4 meaning cirrhosis. No test is foolproof (even a biopsy sees just a bit of the total picture), which is why my FibroScan and FibroSure results, taken just two days apart, came to very different conclusions. It is also why your doc is reluctant to say just how bad your cirrhosis is.
One piece of good news is that a few recent well-conducted studies indicate that, once a cirrhotic is cured of hepatitis, the amount of fibrosis can decrease. Until very recently, it was thought that cirrhosis couldn't be reversed, but these recent studies indicate it is sometimes possible to improve enough to go from F4 to F3. A lot of us on these forums are looking forward to seeing if that will be true for us, and we are keeping our eyes out for more such studies.

HTH,
Gnatty

Lynn K · « **Reply #22 on:** November 04, 2015, 01:00:35 am »

Hi Shenny and welcome

Extent of liver damage once diagnosed with cirrhosis is basically based on if you are having symptoms of cirrhosis or not.

If you do not have symptoms you would be considered compensated if you begin to experience symptoms of cirrhosis you would be considered to be decompensated,

What is decompensated cirrhosis?

Cirrhosis

If you experience any of the serious problems described below, your disease has progressed from compensated cirrhosis to decompensated cirrhosis. You are then at risk of dying from life-threatening complications of liver disease, unless your sick liver can be replaced with a healthy liver (liver transplant).

Bleeding varices (internal bleeding)
Ascites (fluid in the belly)
Encephalopathy (confusion)
Jaundice (yellowing of eyes and skin)

http://www.hepatitis.va.gov/patient/complications/cirrhosis/decompensated.asp

I was diagnosed with cirrhosis 8 years ago and even though I had developed esophageal varicies that needed to be banded (enlarged blood vessels similar to varicose veins in your swallowing tube) and have some edema I am still considered compensated.

Another way that cirrhosis is staged for severity of liver disease is a scoring systems based on some of your blood test results

There is the MELD score (Model for End-Stage Liver Disease) which uses your INR, bilirubin, and creatinine scores to determine how high you would be on the liver transplant list. The score goes from 6 to 40 and at most transplant centers your score would have to be at least 15 to be on the transplant list.

For reference my MELD score is 8

http://www.mayoclinic.org/medical-professionals/model-end-stage-liver-disease/meld-model
Here is a Wikipedia article about the MELD score

https://en.wikipedia.org/wiki/Model_for_End-Stage_Liver_Disease

The other scoring system commonly used is the Child-Turcotte-Pugh score

It uses your PT (prothrombin Time or INR) results along with your albumin and bilirubin test results as well as whether you have any ascities or hepatic encephalopathy

Here is a calculator:
http://www.hepatitis.va.gov/provider/tools/child-pugh-calculator.asp

And a Wikipedia article
https://en.wikipedia.org/wiki/Child-Pugh_score

I am considered to be a Child "A" score.

The fibroscan only confirms cirrhosis the extent of damage is evidenced by symptoms.

One common early symptom is a low platelet count minimum normal is 150 mine is about 80 to 90 I have seen some with numbers as low as 50 or lower.

What happens is that due to the scaring of the liver it is difficult for blood to flow through the main vein in the liver called the portal vein. This causes high blood pressure in that vein aka portal hypertension. This can cause esophageal varicies as well as cause the spleen to enlarge and begin to sequester platelets which is what causes the low platelet count.

The good news is that with cure of hep c our livers won't get any worse and may begin to improve with time. with cure we can with care and kindness to our livers expect to live a normal life span.

I hope this helps somewhat let me know if you have any more questions and I will try my best to answer them.

Good luck on treatment

Lynn

BillT · « **Reply #23 on:** November 04, 2015, 06:56:15 am »

I'm confused Else,
Aren't SNAFU and SX the same thing?

Else · « **Reply #24 on:** November 04, 2015, 10:39:20 am »

LOL Not always, Bill. It was a happy surprise to me that there can be positive Sx. It's a roll of the dice.

And thank you to Tommy for expanding my acronym lexicon.

slats1056 · « **Reply #25 on:** November 04, 2015, 03:10:34 pm »

More like a crap shoot, but I digress!!! $:-\$

Else · « **Reply #26 on:** November 04, 2015, 04:47:55 pm »

How ya feelin' Tommy? Still hankering to get out to your High Lonesome for some quiet time?

slats1056 · « **Reply #27 on:** November 04, 2015, 10:18:56 pm »

Hey Else, Feeling kinda funky the last few days. No energy or appetite. Having some lower G.I. issues again. Can't seem to get by it. Doc says oh well, as long as no high fevers or dehydration problems keep on keepin on.
Trying to scrape up some extra scratch to make it out to Gods' Country for a little one on one with the Big Guy!
BTW, just noticed the avatar

$:-\$

No more disenfranchised semi angry rapper left in You? :)LOL.

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Author Topic: Treatment naive but still detectable after 4 weeks (Read 14927 times)