Author Topic: After tx (POST) 4wk or 12 wk SVR results (Harvoni only) - CHECK IN HERE PLEASE! (Read 755779 times)

gnatcatcher · « **Reply #1200 on:** June 16, 2016, 03:38:52 am »

Wonderful news, jakas!
You've helped many people here, too.

beto · « **Reply #1201 on:** June 16, 2016, 09:49:18 am »

Nice Jakas...feels good don't it

concerned father · « **Reply #1202 on:** June 16, 2016, 10:14:20 am »

Congrats to all and keep it coming I love it.

kimlav · « **Reply #1203 on:** June 16, 2016, 11:29:07 am »

Congratulations to everyone slaying so many dragons of late.

I just learned yesterday that my 12 week EOT result was yes yes target not detected! SVR 12 as they say.

As you all well know, I think the wait for results was the hardest part of the 8 week Harvoni treatment. Needless to say, I burst into tears when I found out. It is still hard to believe but I am working on that.

Good luck to everyone still awaiting results or presently on treatment. Next up, SVR 24..

Kim

gnatcatcher · « **Reply #1204 on:** June 16, 2016, 12:01:19 pm »

and now you can write "HAD" -- congratulations, Kim!

jakas · « **Reply #1205 on:** June 16, 2016, 01:35:22 pm »

Quote from: beto on June 16, 2016, 09:49:18 am

Nice Jakas...feels good don't it

YYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYES !!!!

Philadelphia · « **Reply #1206 on:** June 16, 2016, 05:50:24 pm »

Great news Jakas! Those are great words to hear

FutureThinker · « **Reply #1207 on:** June 16, 2016, 08:28:44 pm »

Jakas and Kimlav, DOIN' THE HAPPY DANCE FOR YOU!!!!!!! Tears of joy are a very good thing and I'm sure when I get my SVR12 news, I'll be doing the same thing. All the best to you both -- the future is very bright!! FT

brie41 · « **Reply #1208 on:** June 16, 2016, 09:23:38 pm »

Congrats Jakas and Kimlav,

It is wonderful news for both of you and wishing you continued success. I am late getting my 4 week eot test done. I must do it next week and hope to join you all!!! Brie

Philadelphia · « **Reply #1209 on:** June 17, 2016, 03:34:22 am »

Kimlav, I missed yours! Congratulations are most certainly in order.

AussieRosa · « **Reply #1210 on:** June 17, 2016, 03:57:02 am »

Congratulations, Jakas and Kimlav. So many people achieving SVR. It's always such heartening news. Thanks for letting us know.

Lynn K · « **Reply #1211 on:** June 17, 2016, 04:07:07 am »

Congrats to Jakas, Kimlav and to all our fellow warriors who have beat the dragon! Good luck to those still in the fight

slats1056 · « **Reply #1212 on:** June 17, 2016, 03:50:03 pm »

What is that

An earthquake

Nope , just the evergrowing Happy Hepper Conga Line snaking around the globe adding folks as is expands ever larger each and every day!

All Hail Heplandia!!

I HAVE SEEN BETTER DAYS , BUT I HAVE ALSO SEEN WORSE. I DON'T HAVE EVERYTHING I WANT , BUT I DO HAVE ALL THAT I NEED! I WOKE UP WITH SOME ACHES AND PAINS , BUT I WOKE UP! MY LIFE MAY NOT BE PERFECT , BUT I AM BLESSED.

concerned father · « **Reply #1213 on:** January 26, 2017, 02:12:21 pm »

My daughter has just received her result of her one year after treatment results. UNDETECTED.

gnatcatcher · « **Reply #1214 on:** January 26, 2017, 02:16:20 pm »

-very glad to read the good news.

lporterrn · « **Reply #1215 on:** January 26, 2017, 03:27:46 pm »

Wonderful news! All undetectable results are cause for celebration, but I particularly like hearing them from parents!

FutureThinker · « **Reply #1216 on:** January 26, 2017, 04:58:29 pm »

Concerned Father - HAPPY DANCIN' TIME!! I am sure you are so relieved and now all can get on with their lives. All the best, FT

bharrisrn · « **Reply #1217 on:** January 26, 2017, 11:57:55 pm »

12 week Harvoni post treatment PCR RNA on 1/1/2017 undetectable. Previous history of Interferon 1 million units three times per week in the late 90s with no response (viral load was higher than when I started). Genotopye 1A. I don't remember my initial viral load.

bharrisrn · « **Reply #1218 on:** January 27, 2017, 12:00:31 am »

1. 12 wk Post EOT VL status - Undetected
2. Treatment duration - 12 wks
3. tx naive or experienced - tx experienced
4. Genotype (1a or 1b) - 1a
5. F1-F4 fibrosis status (date) - F3
6. Don't remember initial viral load

gnatcatcher · « **Reply #1219 on:** January 27, 2017, 08:14:06 am »

bharrisrn, congratulations on reaching SVR12!

Gnatty

slats1056 · « **Reply #1220 on:** January 27, 2017, 08:42:35 am »

Happy belated congratulations to You guys!

Angelica · « **Reply #1221 on:** February 19, 2017, 04:59:02 pm »

1. 12 wk post treatment UNDETECTED
2. Treatment duration: 8 weeks
3. tx naive or experienced: tx naive
4. Genotype (1a or 1b): 1a
5. F1-F4 fibrosis status (date):no fibrosis

Lynn K · « **Reply #1222 on:** February 19, 2017, 05:08:46 pm »

Hi Angelica and welcome to the forum!

Congrats on your EOT results of not detected.

Is this just your EOT result? Not a big deal but the topic is "After tx(POST) 4wk or 12 wk SVR RESULTS."

If you haven't made those milestones yet please do come back and update when you get there!

Good luck on making it to SVR12 and officially cured!

Angelica · « **Reply #1223 on:** February 19, 2017, 05:33:25 pm »

Hi Lynn,

thank you. I have changed my previous post and I hope it is now clearer. I am 12 weeks post treatment already.

Angelica

Lynn K · « **Reply #1224 on:** February 19, 2017, 07:37:50 pm »

Alright awesome sorry for my confusion and congrats on your cure!

Beautiful word cured

SomewhereinTX · « **Reply #1225 on:** February 19, 2017, 09:26:09 pm »

1. 4wk - 12 wk EOT VL status 12 week SVR- undetected
2. Treatment duration- 8 weeks
3. tx naive or experienced- tx naive
4. Genotype (1a or 1b)- 1a
5. F1-F4 fibrosis status (date) - F2 (8.5kpa) a week and a half before beginning treatment, F3 (11.5kpa) 24 weeks after EOT
6. Initial VL (date) 1.1mil

Did not expect my fibrosis level to be increased. I expected it to be the same or, hopefully, improved.
Received no explanation, no advice, no thoughts from my Liver Specialist upon the current Fibroscan results.
Only thing that happened was for another Fibroscan to be scheduled for one year from now.
I requested blood work for a 24 week SVR test but was told no "because I was cured".

I feel like I was left hanging with no help and an increasing problem. I feel like that because I was.

Lynn K · « **Reply #1226 on:** February 19, 2017, 09:37:11 pm »

Fibroscan results in mid ranges are not that accurate.

Per the American Association for the Study of Liver Diseases (AASLD)

http://www.hcvguidelines.org/full-report/monitoring-patients-who-are-starting-hepatitis-c-treatment-are-treatment-or-have

Monitoring Patients Who Have Completed Treatment

Patients who do not achieve an SVR, because of failure of the treatment to clear, or to maintain clearance of HCV infection with relapse after treatment completion, have ongoing HCV infection and the possibility of continued liver injury and transmission. Such patients should be monitored for progressive liver disease and considered for retreatment when alternative treatments are available. Patients who have undetectable HCV RNA in the serum, when assessed by a sensitive polymerase chain reaction (PCR) assay, 12 or more weeks after completing treatment, are deemed to have achieved an SVR. In these patients, HCV-related liver injury stops, although the patients remain at risk for non-HCV-related liver disease, such as fatty liver disease or alcoholic liver disease. Patients with cirrhosis remain at risk for developing hepatocellular carcinoma.

gnatcatcher · « **Reply #1227 on:** February 20, 2017, 03:40:58 am »

Quote from: SomewhereinTX on February 19, 2017, 09:26:09 pm

1. 4wk - 12 wk EOT VL status 12 week SVR- undetected
2. Treatment duration- 8 weeks
3. tx naive or experienced- tx naive
4. Genotype (1a or 1b)- 1a
5. F1-F4 fibrosis status (date) - F2 (8.5kpa) a week and a half before beginning treatment, F3 (11.5kpa) 24 weeks after EOT
6. Initial VL (date) 1.1mil

Did not expect my fibrosis level to be increased. I expected it to be the same or, hopefully, improved.
Received no explanation, no advice, no thoughts from my Liver Specialist upon the current Fibroscan results.
Only thing that happened was for another Fibroscan to be scheduled for one year from now.
I requested blood work for a 24 week SVR test but was told no "because I was cured".

I feel like I was left hanging with no help and an increasing problem. I feel like that because I was.

There are a lot of possible causes for a seeming increase in kPa score, such as fasting for fewer hours this time than last, weighing more, operator error (e.g., pinging a rib instead of the liver), operator choosing a different setting.... My first time, they'd had the machine only a week or two, so they hadn't yet learned how to deal with people like me whose ribs are very close together. This third time the gal removed the pillow and had me contort like a banana so she could get the pings between my ribs, and it took her more than ten pings to get ten valid pings. She thought it very possible that my first reading had been too high because some pings might have been of a rib rather than my liver. After my first time (pre-tx), I read a study that recommended fasting for at least 4 hours (the hep doc's office always says 3 hours), so for #2 and #3 I fasted 5 hours, which may have helped lower my score. The middle time (different gal), I commented that I was rooting for a score below 12 kPa; when it came out 12.2, she said there was a setting she could adjust somewhat, that "they" didn't like her adjusting it beyond a certain point, so she adjusted that setting a little, did ten more pings, and got 11.4 kPa.

I hope this confirms what Lynn said about results in mid ranges not being that accurate. Your hepatologist's office leaves a lot to be desired in the "bedside manner" department. If I were in your shoes, I'd probably be feeling like you are. Incidentally, even though my kPa scores have decreased and I had post-tx VLs at 12, 24, and 50 weeks (all UD), my hepatologist (who just turned my liver care back to my PCP) still wants me to have VLs done at 2 and 3 years post-EOT and ultrasounds every six months unless my final FibroScan (in a year) is below 9 kPa. He doesn't expect any problems; that's just his protocol. Is there any chance you can get your PCP to order the 24-week SVR test? Odds are, you're fine, but you'd feel better knowing that the rise in kPa was a fluke.

Good luck,

Gnatty

SomewhereinTX · « **Reply #1228 on:** February 20, 2017, 07:38:36 am »

Quote from: gnatcatcher on February 20, 2017, 03:40:58 am

There are a lot of possible causes for a seeming increase in kPa score, such as fasting for fewer hours this time than last, weighing more, operator error (e.g., pinging a rib instead of the liver), operator choosing a different setting.... My first time, they'd had the machine only a week or two, so they hadn't yet learned how to deal with people like me whose ribs are very close together. This third time the gal removed the pillow and had me contort like a banana so she could get the pings between my ribs, and it took her more than ten pings to get ten valid pings. She thought it very possible that my first reading had been too high because some pings might have been of a rib rather than my liver. After my first time (pre-tx), I read a study that recommended fasting for at least 4 hours (the hep doc's office always says 3 hours), so for #2 and #3 I fasted 5 hours, which may have helped lower my score. The middle time (different gal), I commented that I was rooting for a score below 12 kPa; when it came out 12.2, she said there was a setting she could adjust somewhat, that "they" didn't like her adjusting it beyond a certain point, so she adjusted that setting a little, did ten more pings, and got 11.4 kPa.

I hope this confirms what Lynn said about results in mid ranges not being that accurate. Your hepatologist's office leaves a lot to be desired in the "bedside manner" department. If I were in your shoes, I'd probably be feeling like you are. Incidentally, even though my kPa scores have decreased and I had post-tx VLs at 12, 24, and 50 weeks (all UD), my hepatologist (who just turned my liver care back to my PCP) still wants me to have VLs done at 2 and 3 years post-EOT and ultrasounds every six months unless my final FibroScan (in a year) is below 9 kPa. He doesn't expect any problems; that's just his protocol. Is there any chance you can get your PCP to order the 24-week SVR test? Odds are, you're fine, but you'd feel better knowing that the rise in kPa was a fluke.

Good luck,

Gnatty

Thanks Gnatty!
I will try with my PCP.

Odd that I called my Liver Specialist to double-check whether I needed to fast or not and if so for how long. They told me that I did not have to fast at all and I ate after leaving work immediately prior to this last fibroscan.
They were aware that I had just eaten.

Angelica · « **Reply #1229 on:** February 20, 2017, 07:50:30 am »

SomewhereinTX

I am very glad to hear that. It totally explains the results of your fibroscan.

SomewhereinTX · « **Reply #1230 on:** February 20, 2017, 10:15:09 am »

I wonder how many of us were told to fast or didn't need to fast before a fibroscan.

Lynn K · « **Reply #1231 on:** February 20, 2017, 01:00:00 pm »

I know several people have mentioned about fasting before a Fibroscan but I haven't seen that anywhere in the literature does someone have a reference?

gnatcatcher · « **Reply #1232 on:** February 20, 2017, 03:31:29 pm »

Lynn, I don't recall whether this commentary on a study is what I saw when I had searched last spring, but it does recommend fasting for at least 4 hours:
http://onlinelibrary.wiley.com/doi/10.1111/apt.12598/full
My hepatologist says no food or water for three hours before.

Lynn K · « **Reply #1233 on:** February 20, 2017, 10:47:37 pm »

Hi Gnatty

Thanks for the research I will check it out

yeah no one at my doctors said anything about it

Edit:

Hummm I guess if I do a future Fibroscan I will have to make sure I am fasting then they will think my liver is improved.

My pre treatment Fibroscan was 27 and my one year post cure was 33 certainly disappointing. Maybe I hadn't eaten before the 1st one and I had before the second one.

SomewhereinTX · « **Reply #1234 on:** February 23, 2017, 01:31:16 am »

With my first Fibroscan I had not eaten since early morning and had it done in the late afternoon and as mentioned ate immediately before the second one.

I am seeing suggestions of several hours of fasting prior to testing and commentaries of differences in results in searches.

elias · « **Reply #1235 on:** February 23, 2017, 02:00:11 am »

Fibrosure blood test for fibrosis requires eight hour fasting prior:

Quote

Patient Preparation

Patient should be fasting for at least eight hours.

From: Labcorp.com

So it's not just Fibroscan that requires it. Fibrosure as well.
=============
I did not at all fast prior to that Fibrosure test last September, and I drank very high calorie drink in dr's office while waiting for the tests including the Fibrosure. So I'm now wondering if my real fibrosis level might not be a bit lower than F3 on account of this?

D63 · « **Reply #1236 on:** July 17, 2017, 11:47:58 am »

Genotype: 1A
Contracted tattoo
Dx in 1990
Fibroscan: 11/15/2016
Stage: F-0, 5.4 Kpa
Tx naive
Started Harvoni: 1/30/2017 - 8 weeks Tx

Week 1 Starting VL: 3,044,516
AST: 36
ALT: 63
Cryoglobulinemia: POSITIVE 12.00

Week 2:
AST: 15
ALT: 20

Week 4 VL: 0- UD
AST: 16
ALT: 20

Week 8 EOT VL: 0-UD
AST: 15
ALT: 18
ALKALINE PHOSPHATASE: 66

Cryoglobulinemia: NEGATIVE

Week 12, after EOT: VL: 0- UD

lporterrn · « **Reply #1237 on:** August 28, 2017, 01:00:58 pm »

All these wonderful outcomes make especially good stories. Please tell your hep story at Hep Stories https://www.hepmag.com/category/hep-stories

cementjungle · « **Reply #1238 on:** January 18, 2018, 03:21:38 pm »

Just had my 12 week post treatment testing and it came back undetected!!

12 week Harvoni treatment. Treatment was uneventful the first 2 months, but for the 3rd month I had weird skin peeling issues on hands and feet. Perhaps dehydration or something, who knows... but rubbing Avacodo oil on hands and feet seemed to help it heal back up.

gnatcatcher · « **Reply #1239 on:** January 18, 2018, 05:28:34 pm »

cementjungle, glad to hear your great news -- both the SVR12 and your healed skin.

cementjungle · « **Reply #1240 on:** January 18, 2018, 08:24:55 pm »

Thank you Gnat!!!

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Author Topic: After tx (POST) 4wk or 12 wk SVR results (Harvoni only) - CHECK IN HERE PLEASE! (Read 755779 times)