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Author Topic: On pins and needles  (Read 26789 times)

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Offline drummerman

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  • Posts: 538
  • For those regarded as warriors....
On pins and needles
« on: October 12, 2015, 08:56:19 pm »
Finally was able to log on to labcorp portal...

"no lab results available."

Blood was drawn last tuesday.  Usually have results in 2 to 3 days.  Maybe they just got real busy , plus Columbus day.

The waiting is making me a nervous wreck.

Web portal basically says , "wait at least 2 weeks before contacting us".

arghhhh!

dm
Diagnosed07
Interferon/riba 2008 - non-responder
5/16/15 - AST -34
ALT - 35_ HCV RNA - 10,783,000
 7/6/15 - started viekira/riba
8/11/15  Week 5 <15 vl,  AST 18, ALT 18
9/11/15 Week 9  "HCV NOT DETECTED"!
AST 16, ALT 11.  10/16/16 - 2 weeks post EOT = "HCV NOT DETECTED!   AST - 18,  ALT 14
12/29/15 -12 wk EOT-HCV NOT DETECTED! AST 23, ALT 15
3/26/16 - 24 wk post EOT - HCV NOT DETECTED!! AST 19, ALT 21
1 yr eot - AST 20, ALT 17

Offline Bree

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  • Posts: 576
  • "Today is a good day for a great day!"
Re: On pins and needles
« Reply #1 on: October 12, 2015, 08:59:43 pm »
DM,  I was thinking about you today and figured you would have your results.  I too was waiting to see you UND post.  Darn it!

I wouldn't wait two weeks to contact them.  You'll probably get it tomorrow.  I'm sure it's UND (I just looked into my crystal ball)!
Dx 1997 Geno 1a
2002-2003 PEG Intron/riba (48 wks) respond/relapsed
Pre-Harvoni - Viral Load: 13.5 M - Log 7.1
Fibrosure Score F1-2  Pre-Treatment:  AST 73 / ALT 88

7/6/15 Started Harvoni (12 weeks)
10/5/15 HCV NOT DETECTED (One week post EOT)
11/9/15 NOT DETECTED!!! (6 wk post)
12/21/15 NOT DETECTED (12 wk post) 
3/14/16  NOT DETECTED (24 week post)AST 26 ALT 18
SVR ACHIEVED!!! 
CURED YES!!!

Offline KimInTheForest

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  • Believe in yourself
Re: On pins and needles
« Reply #2 on: October 12, 2015, 09:00:17 pm »
Finally was able to log on to labcorp portal...

"no lab results available."

Blood was drawn last tuesday.  Usually have results in 2 to 3 days.  Maybe they just got real busy , plus Columbus day.

The waiting is making me a nervous wreck.

Web portal basically says , "wait at least 2 weeks before contacting us".

arghhhh!

dm

So frustrating! I know how you feel. Maybe your doctor's office? Do they get results sooner than they would be posted on the portal? If so they could tell you or email you results. I am sure your results will be what you have been waiting for. But I know how important it is to actually see those words in black & white from the lab.

rooting for you,
kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: On pins and needles
« Reply #3 on: October 12, 2015, 09:39:17 pm »
I had the lab corp account my results never showed up so I gave up on them fortunately my doctor uses MyChart so I get my results there

Hope you hear soon
Lynn
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Scoutdoy

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  • Posts: 452
Re: On pins and needles
« Reply #4 on: October 12, 2015, 10:29:29 pm »
dm,,,today is a holiday, I bet they will be up tomorrow and you will let us know your UNDETECTED!



GO ROYALS!
SCOUT
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline drummerman

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  • Posts: 538
  • For those regarded as warriors....
Re: On pins and needles
« Reply #5 on: October 13, 2015, 06:59:22 am »
Thanks everyone!

Hopefully today is the day!

I did notice on the labportal that it said they would not post until they had sent results to me doc.  I assume they send results electronically since I usually get contacted by my nurse in 2 to 3 days after blood draw.

Called nurse on Friday (blood draw was on previous tuesday) and she said they had  not received results.

I'll give em a couple more days then start calling.

ps - has anyone else had any problems with labcorp?

dm
Diagnosed07
Interferon/riba 2008 - non-responder
5/16/15 - AST -34
ALT - 35_ HCV RNA - 10,783,000
 7/6/15 - started viekira/riba
8/11/15  Week 5 <15 vl,  AST 18, ALT 18
9/11/15 Week 9  "HCV NOT DETECTED"!
AST 16, ALT 11.  10/16/16 - 2 weeks post EOT = "HCV NOT DETECTED!   AST - 18,  ALT 14
12/29/15 -12 wk EOT-HCV NOT DETECTED! AST 23, ALT 15
3/26/16 - 24 wk post EOT - HCV NOT DETECTED!! AST 19, ALT 21
1 yr eot - AST 20, ALT 17

Offline Lynn K

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Re: On pins and needles
« Reply #6 on: October 13, 2015, 03:29:58 pm »
I have and eventually gave up on their web site only got test results posted when I emailed them and not all of them ever but could be a local issue I am in WA state

Fingers, eyes, and toes crossed for ya!
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline dragonslayer

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  • Posts: 873
Re: On pins and needles
« Reply #7 on: October 13, 2015, 03:38:07 pm »
DM, the lab I use only processes RNA PCR tests on tuesday and thursday regardless of when they are drawn.  You might want to check when yours are processed.. Best of luck!!!!!!!!!!
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

Offline drummerman

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Re: On pins and needles
« Reply #8 on: October 13, 2015, 03:57:13 pm »
Thanks Lynn and Dragonslayer.

No word from them today (Tuesday).  Usually (always) my nurse has called by now.  Will call her tomorrow.

dm
Diagnosed07
Interferon/riba 2008 - non-responder
5/16/15 - AST -34
ALT - 35_ HCV RNA - 10,783,000
 7/6/15 - started viekira/riba
8/11/15  Week 5 <15 vl,  AST 18, ALT 18
9/11/15 Week 9  "HCV NOT DETECTED"!
AST 16, ALT 11.  10/16/16 - 2 weeks post EOT = "HCV NOT DETECTED!   AST - 18,  ALT 14
12/29/15 -12 wk EOT-HCV NOT DETECTED! AST 23, ALT 15
3/26/16 - 24 wk post EOT - HCV NOT DETECTED!! AST 19, ALT 21
1 yr eot - AST 20, ALT 17

Offline Rosie13

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  • Posts: 297
Re: On pins and needles
« Reply #9 on: October 13, 2015, 04:50:53 pm »
Dman,the same thing happened to me on 4wk labs.the 2 wks came back in 3 days so after waiting a week called Dr.they had not received.waiting is a pain but they finally came with all good news.yours will too but let's just hope it was the holiday weekend that slowed it. I was able to setup with quest labs to have an email alert when they posted them...they  have to send to Dr first though.
Labs August 15,2015
Genotype 1b
AST 112 U/L
ALT 181 U/L
HCV 192,000 IU/mL
Fibroscan F2-3
Started Harvoni Sept. 5, 2015
4wk. labs Oct. 2,2015
AST 21 U/L
ALT 27 U/L
HCV UNDETECTED!!
8wk. labs Nov.5,2015
AST 16 U/L
ALT 19 U/L
HCV UNDETECTED!!
12 wks.post tx.feb.11,2016
UNDETECTED!!!
24 wks. post tx. may 16,2016
UNDETECTED Fibroscan  F-0!!!!!

Offline drummerman

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  • Posts: 538
  • For those regarded as warriors....
Re: On pins and needles
« Reply #10 on: October 13, 2015, 05:52:13 pm »
hey rosie,

same here... they have to send results to my  doctor first.  I'm wonderin if the docs office must send a reply back to acknowledge they received, before the lab will then post results on my portal.

dm
Diagnosed07
Interferon/riba 2008 - non-responder
5/16/15 - AST -34
ALT - 35_ HCV RNA - 10,783,000
 7/6/15 - started viekira/riba
8/11/15  Week 5 <15 vl,  AST 18, ALT 18
9/11/15 Week 9  "HCV NOT DETECTED"!
AST 16, ALT 11.  10/16/16 - 2 weeks post EOT = "HCV NOT DETECTED!   AST - 18,  ALT 14
12/29/15 -12 wk EOT-HCV NOT DETECTED! AST 23, ALT 15
3/26/16 - 24 wk post EOT - HCV NOT DETECTED!! AST 19, ALT 21
1 yr eot - AST 20, ALT 17

Offline Rosie13

  • Member
  • Posts: 297
Re: On pins and needles
« Reply #11 on: October 14, 2015, 12:12:01 am »
Yep they seem to confirm Dr. receipt before letting me get it.Hope you hear soon..I was nervous too but like almost everyone those 4 wk. numbers were golden!
Labs August 15,2015
Genotype 1b
AST 112 U/L
ALT 181 U/L
HCV 192,000 IU/mL
Fibroscan F2-3
Started Harvoni Sept. 5, 2015
4wk. labs Oct. 2,2015
AST 21 U/L
ALT 27 U/L
HCV UNDETECTED!!
8wk. labs Nov.5,2015
AST 16 U/L
ALT 19 U/L
HCV UNDETECTED!!
12 wks.post tx.feb.11,2016
UNDETECTED!!!
24 wks. post tx. may 16,2016
UNDETECTED Fibroscan  F-0!!!!!

Offline drummerman

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  • For those regarded as warriors....
Re: On pins and needles
« Reply #12 on: October 14, 2015, 07:10:47 am »
Thanks Rosie,

I was just wondering cause none of my previous 2 blood lab results are on the portal.

Which makes me think that when the docs office receives , they are, perhaps, supposed to send an acknowledgment that lets labcorp know "ok now we can post results on portal".

Least thats my theory.

Everything about this experience has been fraught with people dropping the ball and at times total incompetence.

It was the same way the first tx.   Very few specialists around here and the ones that are available are too busy doing liver transplants.  You can't even get an appt. with one.

dm
Diagnosed07
Interferon/riba 2008 - non-responder
5/16/15 - AST -34
ALT - 35_ HCV RNA - 10,783,000
 7/6/15 - started viekira/riba
8/11/15  Week 5 <15 vl,  AST 18, ALT 18
9/11/15 Week 9  "HCV NOT DETECTED"!
AST 16, ALT 11.  10/16/16 - 2 weeks post EOT = "HCV NOT DETECTED!   AST - 18,  ALT 14
12/29/15 -12 wk EOT-HCV NOT DETECTED! AST 23, ALT 15
3/26/16 - 24 wk post EOT - HCV NOT DETECTED!! AST 19, ALT 21
1 yr eot - AST 20, ALT 17

Offline Rosie13

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  • Posts: 297
Re: On pins and needles
« Reply #13 on: October 14, 2015, 11:26:17 am »
Since my tx. I have not seen my real gastro Dr. at all. My hep nurse is my acting Dr.  Her name on my Harvoni script not the Mayo Dr. I don't care because I love my Nurse Kristen. She did my fibroscan & calls me all the time & is doing my appeal for 12 tx. I wonder if the liver transplant patients feel ignored too.
Labs August 15,2015
Genotype 1b
AST 112 U/L
ALT 181 U/L
HCV 192,000 IU/mL
Fibroscan F2-3
Started Harvoni Sept. 5, 2015
4wk. labs Oct. 2,2015
AST 21 U/L
ALT 27 U/L
HCV UNDETECTED!!
8wk. labs Nov.5,2015
AST 16 U/L
ALT 19 U/L
HCV UNDETECTED!!
12 wks.post tx.feb.11,2016
UNDETECTED!!!
24 wks. post tx. may 16,2016
UNDETECTED Fibroscan  F-0!!!!!

Offline drummerman

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  • For those regarded as warriors....
Re: On pins and needles
« Reply #14 on: October 14, 2015, 11:37:12 am »
I first treated at a major university hospital.  Never even saw the specialist except once in the hall.  When I question the nurse about this she told me he had looked over my records... yeah,... right.

dm
Diagnosed07
Interferon/riba 2008 - non-responder
5/16/15 - AST -34
ALT - 35_ HCV RNA - 10,783,000
 7/6/15 - started viekira/riba
8/11/15  Week 5 <15 vl,  AST 18, ALT 18
9/11/15 Week 9  "HCV NOT DETECTED"!
AST 16, ALT 11.  10/16/16 - 2 weeks post EOT = "HCV NOT DETECTED!   AST - 18,  ALT 14
12/29/15 -12 wk EOT-HCV NOT DETECTED! AST 23, ALT 15
3/26/16 - 24 wk post EOT - HCV NOT DETECTED!! AST 19, ALT 21
1 yr eot - AST 20, ALT 17

Offline Rosie13

  • Member
  • Posts: 297
Re: On pins and needles
« Reply #15 on: October 14, 2015, 12:00:16 pm »
I guess they think they have this in the bag with the new drugs. It would have been nice for the Dr. to call me with the lab results though. I would have had more face time if I had stayed in my little town but I was wanting a good appeal team & that is what I got .
Labs August 15,2015
Genotype 1b
AST 112 U/L
ALT 181 U/L
HCV 192,000 IU/mL
Fibroscan F2-3
Started Harvoni Sept. 5, 2015
4wk. labs Oct. 2,2015
AST 21 U/L
ALT 27 U/L
HCV UNDETECTED!!
8wk. labs Nov.5,2015
AST 16 U/L
ALT 19 U/L
HCV UNDETECTED!!
12 wks.post tx.feb.11,2016
UNDETECTED!!!
24 wks. post tx. may 16,2016
UNDETECTED Fibroscan  F-0!!!!!

Offline chino1969

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  • Posts: 117
Re: On pins and needles
« Reply #16 on: October 14, 2015, 03:10:21 pm »
The result times can vary.  I do believe the Dr. gets the results 1st and then notifies LabCorp it is acceptable to post.  The reason I say this is I have followed the process and sequence carefully.  LabCorp will post that new test results are in yet you cannot view them until several days later.  It makes sense that they would be sending the results to the Dr. first and then receiving approval to post.  Don't fret.

Offline Picnic

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Re: On pins and needles
« Reply #17 on: October 14, 2015, 03:25:41 pm »
Your results are definitely done! its the red tape that is causing the delay. Call Lab Corp and ask if you sign a release for your result will they give it to you. I do that at my lab. You can also  call the doctor and ask them to call the lab if it is not in yet! If you don't advocate for yourself then no one else will!
Larry

Offline drummerman

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Re: On pins and needles
« Reply #18 on: October 14, 2015, 07:43:07 pm »
Finally getting to the bottom of this.

Waited as long as I could and called docs office.  Asked reception to have my nurse call me when she had a change. 

"Oh she is not here today"

me - will she be in tomorrow.

receptionist - I don't know , she was sick yesterday and today.

me - is there someone else there that could give me my blood results for a blood draw that was over a week ago.

receptionist - sure, I will have Kelly (another nurse) call you.

Never heard back from Kelly.... maybe tomorrow... sigh...

this is so typical.

May have to call labcorp myself as suggested by picnic.

I'm starting to get really pissed off.

dm
Diagnosed07
Interferon/riba 2008 - non-responder
5/16/15 - AST -34
ALT - 35_ HCV RNA - 10,783,000
 7/6/15 - started viekira/riba
8/11/15  Week 5 <15 vl,  AST 18, ALT 18
9/11/15 Week 9  "HCV NOT DETECTED"!
AST 16, ALT 11.  10/16/16 - 2 weeks post EOT = "HCV NOT DETECTED!   AST - 18,  ALT 14
12/29/15 -12 wk EOT-HCV NOT DETECTED! AST 23, ALT 15
3/26/16 - 24 wk post EOT - HCV NOT DETECTED!! AST 19, ALT 21
1 yr eot - AST 20, ALT 17

Offline Scoutdoy

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  • Posts: 452
Re: On pins and needles
« Reply #19 on: October 14, 2015, 08:00:33 pm »
Dm... Here is my line on this...I will stay in hold while you locate the nurse because this is detrimental to my health...the stress alone from the lack of help alone is casing my blood pressure to go to dangerously high levels, so I will just wait until a doctor or nurse gets on the line! It pisses me off too dm.


Go Royals
Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline Lynn K

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Re: On pins and needles
« Reply #20 on: October 14, 2015, 11:36:35 pm »
Hi DM

If it helps at all as you were not detected on treatment as far as I know it is near 100% you will be not detected at EOT.

The real nail biter is the 12 week post test

Hope you hear tomorrow before you start biting their nails as I am sure yours are warn to the nubs by now.

Lynn
« Last Edit: October 15, 2015, 10:26:23 pm by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline gnatcatcher

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Re: On pins and needles
« Reply #21 on: October 15, 2015, 06:56:22 am »
I first treated at a major university hospital.  Never even saw the specialist except once in the hall.  When I question the nurse about this she told me he had looked over my records... yeah,... right.
dm, one reason for this may be that people with hep c are now beating down the specialist's door seeking treatment, both because the treatments are easier/shorter/much more effective and because many more people are getting tested for hep c. When I went to see about getting Harvoni, I had a 4 p.m. appointment; while the nurse was taking my Hx, the hepatologist popped his head in to say he was running at least an hour behind. He did eventually come in, palpate my liver, and answer my questions, but then the nurse took back over. She was very surprised that when she did the FibroScan I came out F4, so the nurse went to tell the hepatologist (also surprised) who came back in with some revised thoughts. By then it was 6 pm.; he slumped in his chair. I asked if they were getting hordes of people asking for Harvoni -- yes!

Fortunately, this practice (four hepatologists at a major university hospital) has put together a system that functions pretty well, given the onslaught. The nurse let me know exactly what to expect with possible insurance denials, specialty pharmacy, and the fact that my treatment would be in the hands of a NP. The NP explained that I would see the specialist again after the test for SVR12.

The nurse warned me that it would take time for the hepatologist to see my baseline labs and give permission to have them released to my patient portal, but that I could phone her voicemail 6 days after the tests and she would get back to me with results. Once I was on treatment, the NP said she never blocked letting results go to the portal, so my four-week VL posted the same day, but then the patient portal died on me again, so I didn't get to know the enzymes, etc. until 5 days after the tests when I saw the NP.

Sorry the system you must deal with is less well organized.

Gnatty
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline drummerman

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Re: On pins and needles
« Reply #22 on: October 15, 2015, 07:00:35 am »
Thanks Lynn!

and yes Gnatty they are very disorganized.... none of my prevous 2  labs are on the portal, which makes me think they are not responding electronically to labcorp,  hence labcorp never  posts my results.

Maybe my nurse will be back in today.  Will definitely call later in the day.

dm
Diagnosed07
Interferon/riba 2008 - non-responder
5/16/15 - AST -34
ALT - 35_ HCV RNA - 10,783,000
 7/6/15 - started viekira/riba
8/11/15  Week 5 <15 vl,  AST 18, ALT 18
9/11/15 Week 9  "HCV NOT DETECTED"!
AST 16, ALT 11.  10/16/16 - 2 weeks post EOT = "HCV NOT DETECTED!   AST - 18,  ALT 14
12/29/15 -12 wk EOT-HCV NOT DETECTED! AST 23, ALT 15
3/26/16 - 24 wk post EOT - HCV NOT DETECTED!! AST 19, ALT 21
1 yr eot - AST 20, ALT 17

Offline drummerman

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Re: On pins and needles
« Reply #23 on: October 15, 2015, 08:03:46 pm »
arrgghhh!

so today the nurse that is not sick (Kelly) calls, but I don't hear it cause I'm in a rehearsal.

She leaves voice mail saying to call her back.  So I do.  Receptionist says "she is with a patient , but will call you back."  She never calls back.

Gonna call them tomorrow and if I don't hear from Kelly by 2:30, I am just going up there and tell em I want a copy of my lab results.   Its just 2 blocks away.  I think this is the only way I am going to get them.

I should have stayed with the university hospital....but they scared me off when they put my blood vial labels on someone else's blood!  Yep, this really happened.

Why does everything about this tx have to be so eff'ed up???

dm
Diagnosed07
Interferon/riba 2008 - non-responder
5/16/15 - AST -34
ALT - 35_ HCV RNA - 10,783,000
 7/6/15 - started viekira/riba
8/11/15  Week 5 <15 vl,  AST 18, ALT 18
9/11/15 Week 9  "HCV NOT DETECTED"!
AST 16, ALT 11.  10/16/16 - 2 weeks post EOT = "HCV NOT DETECTED!   AST - 18,  ALT 14
12/29/15 -12 wk EOT-HCV NOT DETECTED! AST 23, ALT 15
3/26/16 - 24 wk post EOT - HCV NOT DETECTED!! AST 19, ALT 21
1 yr eot - AST 20, ALT 17

Offline sapphire101

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Re: On pins and needles
« Reply #24 on: October 15, 2015, 10:18:06 pm »
Only two blocks away?
Are you kidding me Drummerman I would have already been there kicking the door down days ago.
You are waaaaaaay more understanding than I could ever be. 
Sapphire101
Genotype 1a Fibrosis level 1
Viekira Pak with ribavirin 12 weeks
Pre treatment  VL  1.7 million, AST 45 ALT 65
EOT VL not detected, AST 21 ALT 21
12 week SVR not detected,24 week SVR not detected.
Cured! Class of 2015

Offline Scoutdoy

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Re: On pins and needles
« Reply #25 on: October 16, 2015, 12:02:47 am »
Wow dm, you have a lot more patience than me,,, but that's a very good quality. I would have already been arrested and been accused of stalking if this happened to me. Ummmm there is some crazy menopausal, PMSing, lady  camped out on the doctors doorstep,,  please give her the test results we are holding hostage!


Go Royals
Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline willie g

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  • geno 1 25million etc. s/o for treatment
Re: On pins and needles
« Reply #26 on: October 16, 2015, 12:50:36 am »
well SCOUT  lets hope you don't have to do a KILL BILL in regards to this issue, ha ha   but really the checks n the mail, you ll see,,,,,,,,   if you don't learn ANYTHING from this illness you will learn or have learned Patience  (if you mentioned that word to me before treatment I would say something like ''ya, you can put that word where the sun don't shine'')  I can actually go to the dr. now and enjoy the wait watching things come and go,, and people too,,ha    ha       ohBoyyyy    ''just Willie g' GatorFalls

Offline Scoutdoy

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Re: On pins and needles
« Reply #27 on: October 16, 2015, 01:29:37 am »
Willie ...did you go though treatment?



Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline drummerman

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Re: On pins and needles
« Reply #28 on: October 16, 2015, 07:12:22 am »
Thanks guys

they thing is , I learned a long time ago  that the doc and the nurses hold all the power.

Best just to smile, be polite and get the hell out of there.

Gonna call today and let the receptionist know that I will be there at 2:30 and if some one could copy my test results , I will just pick them up.  Phone tag just isn't cutting it.

All with a smile on my face.

dm
Diagnosed07
Interferon/riba 2008 - non-responder
5/16/15 - AST -34
ALT - 35_ HCV RNA - 10,783,000
 7/6/15 - started viekira/riba
8/11/15  Week 5 <15 vl,  AST 18, ALT 18
9/11/15 Week 9  "HCV NOT DETECTED"!
AST 16, ALT 11.  10/16/16 - 2 weeks post EOT = "HCV NOT DETECTED!   AST - 18,  ALT 14
12/29/15 -12 wk EOT-HCV NOT DETECTED! AST 23, ALT 15
3/26/16 - 24 wk post EOT - HCV NOT DETECTED!! AST 19, ALT 21
1 yr eot - AST 20, ALT 17

Offline willie g

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Re: On pins and needles
« Reply #29 on: October 16, 2015, 10:16:53 am »
yes I did go thru treatment  if you look under folks nicknames you will see  genotype s/o for me solvadi and oylisio  viral load but I never updated my profile as far as results, readings  and all the technical paperwork I received, when I was told on my 6 month post visit my blood was better than BETTER,! I left the ground and have just returned,lol   I remember when I asked my dr. in summer of 2014 hows everybody doing on theses new drugs, he laughed and said your my first which kind of thru me, and he is a well known gastro, hepc man so I knew I wasn't with just some quack.but yeah I couldn't go out all Summer due to oylisio because of sun, I got blisters, eyes felt like they were flashburned,  I even lost chunks of hair so ya the best summer for riding was HOT and SUNNY,, I tried covering all up but it wasn't worth it due to heat and sun so I became a vampire for my treatments and basically stayed on this great forum for the whole time making a pain in the arse of myself during then. bologna ,I mean harvoni ,ha ha was just being talked about halfway thru my treatment and right before that solvadi and oylisio [my spelling on those two meds may be a little off] were the newest greatest thing that hit the market, some folks didn't get sun symptoms and others we all experienced which was great for them so you see everyones different. this harvoni was launched as the greatest and leases of side effects[just headache supposodely]  LUCINDA PORTER was one of the main moderators at the time, great great lady and as I have mentioned before she has published two wonderful books on her journeys[yes, JOURNEYS,she had a rough time because of old drugs so she had Multiple treatments.until finally the majic bullet hit,,,get and read the books ,very inspiring, very helpful on day to day care, one day at a time type scenario for one book and her complete story in other, both very reasonable and she is ONE OF US! and theres MIKE , he had just finished up as I was getting on board ,another great person,, of course they are still around and LUCINDA has her own newsletters and blogs which are also GREAT, I believe this was truly her calling and I will give away one cool part of her book, she went to college at su Syracuse university and also is and worked as a HIGH VOLTAGE ELECTRICAN, during times of all men doing that work [hell shes not that old but you know how us men are, a lot of whistling and ya baby, especially on worksites of major construction, ha ha  [SHES GOING TO CHOKE ME,a few times thru my treatment she was very patient and understanding so I have to gie her a special plug] if you have any questions, stats, numbers, anything just say HEY MIE you out there and he magically appears with an answer for you as well.  so ya class of 2014 and I must honestly say it took me a good while to readjust physically and mentally from my journey. some its a whiz all the way, some tougher for others so I check back in here and there to cheer on the new,old, and whoever victims because everyone sure helped me a lot.   well that's enough out of me, you get better and yes I am HEP FREE and the awful pain I had in my liver that kept me up for nights on end and the sweating and sicknesses have subsided greatly, it feels good to actually lie on my right side. I'm still working on getting out more because somehow I kinda lost myself as far as being inside for that period and the period where I didn't know what the heck was wrong with me.  you have a good day my friend and that goes for all you hep c critters [please don't mind my humor sometimes,it gets a little wacky]  ''just Willie g '' GatorFalls

Offline drummerman

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Re: On pins and needles
« Reply #30 on: October 16, 2015, 11:50:55 am »
10:46 - just got off the phone with my nurse (she's back!) and she told me I was still UND!  So time to adjust signature.

I told her real nice how I had registered on the labcorp portal but my results were never posted.  I said that i believed the reason they don't show up is that they must recieve and acknowledgement from your office before they will post my results on line.

She replied "I don't know anything about that"   duh... no shite.   Isn't technology wonderful when you don't use it!

I asked her how they received results and she said by fax.  Apparently they have not explored how to make the portal available for their patients.

She did say she would mail me my results and she is always real good about that.

Now the 3 month wait begins.

dm
Diagnosed07
Interferon/riba 2008 - non-responder
5/16/15 - AST -34
ALT - 35_ HCV RNA - 10,783,000
 7/6/15 - started viekira/riba
8/11/15  Week 5 <15 vl,  AST 18, ALT 18
9/11/15 Week 9  "HCV NOT DETECTED"!
AST 16, ALT 11.  10/16/16 - 2 weeks post EOT = "HCV NOT DETECTED!   AST - 18,  ALT 14
12/29/15 -12 wk EOT-HCV NOT DETECTED! AST 23, ALT 15
3/26/16 - 24 wk post EOT - HCV NOT DETECTED!! AST 19, ALT 21
1 yr eot - AST 20, ALT 17

Offline drummerman

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Re: On pins and needles
« Reply #31 on: October 16, 2015, 12:01:33 pm »


I wouldn't wait two weeks to contact them.  You'll probably get it tomorrow.  I'm sure it's UND (I just looked into my crystal ball)!

Hey Bree,
your crystal ball was correct!!!! you nailed it!

dm
Diagnosed07
Interferon/riba 2008 - non-responder
5/16/15 - AST -34
ALT - 35_ HCV RNA - 10,783,000
 7/6/15 - started viekira/riba
8/11/15  Week 5 <15 vl,  AST 18, ALT 18
9/11/15 Week 9  "HCV NOT DETECTED"!
AST 16, ALT 11.  10/16/16 - 2 weeks post EOT = "HCV NOT DETECTED!   AST - 18,  ALT 14
12/29/15 -12 wk EOT-HCV NOT DETECTED! AST 23, ALT 15
3/26/16 - 24 wk post EOT - HCV NOT DETECTED!! AST 19, ALT 21
1 yr eot - AST 20, ALT 17

Offline willie g

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  • geno 1 25million etc. s/o for treatment
Re: On pins and needles
« Reply #32 on: October 16, 2015, 12:05:17 pm »
good for you DRUMMERMAN!        ''JUST WILLIE G''

Offline drummerman

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Re: On pins and needles
« Reply #33 on: October 16, 2015, 12:12:59 pm »
good for you DRUMMERMAN!        ''JUST WILLIE G''

thanks Willie G!

dm
Diagnosed07
Interferon/riba 2008 - non-responder
5/16/15 - AST -34
ALT - 35_ HCV RNA - 10,783,000
 7/6/15 - started viekira/riba
8/11/15  Week 5 <15 vl,  AST 18, ALT 18
9/11/15 Week 9  "HCV NOT DETECTED"!
AST 16, ALT 11.  10/16/16 - 2 weeks post EOT = "HCV NOT DETECTED!   AST - 18,  ALT 14
12/29/15 -12 wk EOT-HCV NOT DETECTED! AST 23, ALT 15
3/26/16 - 24 wk post EOT - HCV NOT DETECTED!! AST 19, ALT 21
1 yr eot - AST 20, ALT 17

Offline drummerman

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Re: On pins and needles
« Reply #34 on: October 16, 2015, 12:23:09 pm »
Haven't posted details lately...

I was really worried about my last blood lab cause I have been feeling so bad, I was convinced that the virus had returned.

I feel exactly like I did the last time I treated with interferon/riba and that lasted 6 months.  I actually felt better when I was on the meds.  Very disappointed that this is happening again.  Hopefully it won't last 6 months this time around.

I was always under the impression it was the interferon that got to me , but apparently its the riba.

I do feel a bit better everyday,  but it is very slight.

Glad I'm still UND though!

dm
Diagnosed07
Interferon/riba 2008 - non-responder
5/16/15 - AST -34
ALT - 35_ HCV RNA - 10,783,000
 7/6/15 - started viekira/riba
8/11/15  Week 5 <15 vl,  AST 18, ALT 18
9/11/15 Week 9  "HCV NOT DETECTED"!
AST 16, ALT 11.  10/16/16 - 2 weeks post EOT = "HCV NOT DETECTED!   AST - 18,  ALT 14
12/29/15 -12 wk EOT-HCV NOT DETECTED! AST 23, ALT 15
3/26/16 - 24 wk post EOT - HCV NOT DETECTED!! AST 19, ALT 21
1 yr eot - AST 20, ALT 17

Offline Scoutdoy

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Re: On pins and needles
« Reply #35 on: October 16, 2015, 12:56:17 pm »
I told you dm,,,,all good.  I have to be honest though the other day I felt like shit and with 2 days left I thought OMG it's back...went to the doctor and they said to relax...I have a cold.two days later that was confirmed when both my children got sick..ugggg it just scares me. I have lived with this so long...I want it over

Congrats dm, I am happy for you.


Go Royals
Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline drummerman

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Re: On pins and needles
« Reply #36 on: October 16, 2015, 02:18:41 pm »
I told you dm,,,,all good.  I have to be honest though the other day I felt like shit and with 2 days left I thought OMG it's back...went to the doctor and they said to relax...I have a cold.two days later that was confirmed when both my children got sick..ugggg it just scares me. I have lived with this so long...I want it over

Congrats dm, I am happy for you.


Go Royals
Scout

Thanks Scout!

I guess I (stupidly) thought when I finished meds I would just feel fine.  I should have known better.  But I thought new tx would be easier and it was during, but afterwards....ugghhh.

Now that being said, this is not true of everyone, so if anyone reads this be aware , every case is different.

dm
« Last Edit: October 16, 2015, 02:33:48 pm by drummerman »
Diagnosed07
Interferon/riba 2008 - non-responder
5/16/15 - AST -34
ALT - 35_ HCV RNA - 10,783,000
 7/6/15 - started viekira/riba
8/11/15  Week 5 <15 vl,  AST 18, ALT 18
9/11/15 Week 9  "HCV NOT DETECTED"!
AST 16, ALT 11.  10/16/16 - 2 weeks post EOT = "HCV NOT DETECTED!   AST - 18,  ALT 14
12/29/15 -12 wk EOT-HCV NOT DETECTED! AST 23, ALT 15
3/26/16 - 24 wk post EOT - HCV NOT DETECTED!! AST 19, ALT 21
1 yr eot - AST 20, ALT 17

Offline Lynn K

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Re: On pins and needles
« Reply #37 on: October 16, 2015, 02:38:40 pm »
Great news DM congrats!!!!

Lynn
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline drummerman

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Re: On pins and needles
« Reply #38 on: October 16, 2015, 02:52:48 pm »
Thanks Lynn,

Don't know if you noticed.... but my eot labs were 2 weeks after eot.

Which means my 12 week test will be 2 weeks late too.

I know it probably doesn't make a difference, but I am inclined to reschedule so it does occur at 12 weeks after eot instead of 14 weeks.

That would be 2 more weeks I don't have to worry.

thoughts?
dm
Diagnosed07
Interferon/riba 2008 - non-responder
5/16/15 - AST -34
ALT - 35_ HCV RNA - 10,783,000
 7/6/15 - started viekira/riba
8/11/15  Week 5 <15 vl,  AST 18, ALT 18
9/11/15 Week 9  "HCV NOT DETECTED"!
AST 16, ALT 11.  10/16/16 - 2 weeks post EOT = "HCV NOT DETECTED!   AST - 18,  ALT 14
12/29/15 -12 wk EOT-HCV NOT DETECTED! AST 23, ALT 15
3/26/16 - 24 wk post EOT - HCV NOT DETECTED!! AST 19, ALT 21
1 yr eot - AST 20, ALT 17

Offline Scoutdoy

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Re: On pins and needles
« Reply #39 on: October 16, 2015, 03:01:12 pm »
Dm, I  would think that rescheduling at 12 weeks would be good because a 12 week EOT should be at 12 weeks not at 14 weeks


Go Royals
Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline KimInTheForest

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Re: On pins and needles
« Reply #40 on: October 16, 2015, 03:18:46 pm »
Congrats DM on your UND at EOT (or rather at 2 weeks after EOT) !!!

As for the post-tx problems, it's weird how many people are affected with some sort of problems that take a while to go away. A lot of people on treatments with no riba are also experiencing this. So I don't know if we can lay it off on the riba. Although everyone is different. In your case, perhaps the riba is the main culprit. In my case, I am still sticking to my theory that my immune system was left temporarily overstimulated post-treatment. All of my symptoms in my post-tx malaise (which has now gone away) could be attributed to an immune system acting up when there is nothing to defend against.

Our bodies have been through an enormous change in a very short period of time. So I guess their readjustment to a new life & liver free of HCV for first time in years/decades just takes the time it takes…

Hope your readjustment is speedy!
kim :)
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline drummerman

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Re: On pins and needles
« Reply #41 on: October 16, 2015, 07:44:09 pm »
Dm, I  would think that rescheduling at 12 weeks would be good because a 12 week EOT should be at 12 weeks not at 14 weeks


Go Royals
Scout

thats kind of what I thought.

Has anyone else had their labs done late?

dm
Diagnosed07
Interferon/riba 2008 - non-responder
5/16/15 - AST -34
ALT - 35_ HCV RNA - 10,783,000
 7/6/15 - started viekira/riba
8/11/15  Week 5 <15 vl,  AST 18, ALT 18
9/11/15 Week 9  "HCV NOT DETECTED"!
AST 16, ALT 11.  10/16/16 - 2 weeks post EOT = "HCV NOT DETECTED!   AST - 18,  ALT 14
12/29/15 -12 wk EOT-HCV NOT DETECTED! AST 23, ALT 15
3/26/16 - 24 wk post EOT - HCV NOT DETECTED!! AST 19, ALT 21
1 yr eot - AST 20, ALT 17

Offline drummerman

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Re: On pins and needles
« Reply #42 on: October 16, 2015, 07:45:03 pm »
Congrats DM on your UND at EOT (or rather at 2 weeks after EOT) !!!

As for the post-tx problems, it's weird how many people are affected with some sort of problems that take a while to go away. A lot of people on treatments with no riba are also experiencing this. So I don't know if we can lay it off on the riba. Although everyone is different. In your case, perhaps the riba is the main culprit. In my case, I am still sticking to my theory that my immune system was left temporarily overstimulated post-treatment. All of my symptoms in my post-tx malaise (which has now gone away) could be attributed to an immune system acting up when there is nothing to defend against.

Our bodies have been through an enormous change in a very short period of time. So I guess their readjustment to a new life & liver free of HCV for first time in years/decades just takes the time it takes…

Hope your readjustment is speedy!
kim :)

Makes sense to me!  I like your theory Kim.

dm
Diagnosed07
Interferon/riba 2008 - non-responder
5/16/15 - AST -34
ALT - 35_ HCV RNA - 10,783,000
 7/6/15 - started viekira/riba
8/11/15  Week 5 <15 vl,  AST 18, ALT 18
9/11/15 Week 9  "HCV NOT DETECTED"!
AST 16, ALT 11.  10/16/16 - 2 weeks post EOT = "HCV NOT DETECTED!   AST - 18,  ALT 14
12/29/15 -12 wk EOT-HCV NOT DETECTED! AST 23, ALT 15
3/26/16 - 24 wk post EOT - HCV NOT DETECTED!! AST 19, ALT 21
1 yr eot - AST 20, ALT 17

Offline Butterflykisses

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Re: On pins and needles
« Reply #43 on: October 16, 2015, 08:11:05 pm »
AWESOME news DM, I personally know the waiting is the hardest part.  Thinking of you and so glad to hear your eot labs are UND.  I am few weeks behind you, eot for me was 10/11, labs will be done this week. 

Wishing you the best, congrats.
Butterfly
GT: 1a
2008: Interferon/Riba NR
VL: 851,413
7/20/15:  Started Harvoni (12 Weeks)
8/17/15:  4 week Lab VL Undetected
9/16/15:  8 week Lab VL Undetected, ast 20, alt 18
10/21/15:  EOT Lab VL Undetected, ast 15, alt 13
1/18/16:  14 Weeks Post VL Undectected, AST 21, ALT 15

Offline drummerman

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Re: On pins and needles
« Reply #44 on: October 16, 2015, 08:34:38 pm »
AWESOME news DM, I personally know the waiting is the hardest part.  Thinking of you and so glad to hear your eot labs are UND.  I am few weeks behind you, eot for me was 10/11, labs will be done this week. 

Wishing you the best, congrats.
Butterfly

Thanks Butterfly!

Looks like your EOT lab is late like mine was ( 2 weeks after EOT) .  Will your 12 week lab be truly 12 weeks after EOT or will it be late as well??

dm
Diagnosed07
Interferon/riba 2008 - non-responder
5/16/15 - AST -34
ALT - 35_ HCV RNA - 10,783,000
 7/6/15 - started viekira/riba
8/11/15  Week 5 <15 vl,  AST 18, ALT 18
9/11/15 Week 9  "HCV NOT DETECTED"!
AST 16, ALT 11.  10/16/16 - 2 weeks post EOT = "HCV NOT DETECTED!   AST - 18,  ALT 14
12/29/15 -12 wk EOT-HCV NOT DETECTED! AST 23, ALT 15
3/26/16 - 24 wk post EOT - HCV NOT DETECTED!! AST 19, ALT 21
1 yr eot - AST 20, ALT 17

Offline Butterflykisses

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Re: On pins and needles
« Reply #45 on: October 16, 2015, 09:23:56 pm »
My EOT labs will also be late.  My Dr put the lab orders in for after 10/19.  If all goes well, I should get the report from quest before my next f/u visit in Nov.  Drs office does not call with labs unless it's something urgent.  I've had hyper thyroid issues during treatment, they did call to adjust my meds.  I've not been sleeping well the past few nights, still have a rash from treatment,  they say it will take time.  I am hopeful, trying some Benadryl tonight.

Celebrate your great news, relax and enjoy the wkend.
Butterfly

GT: 1a
2008: Interferon/Riba NR
VL: 851,413
7/20/15:  Started Harvoni (12 Weeks)
8/17/15:  4 week Lab VL Undetected
9/16/15:  8 week Lab VL Undetected, ast 20, alt 18
10/21/15:  EOT Lab VL Undetected, ast 15, alt 13
1/18/16:  14 Weeks Post VL Undectected, AST 21, ALT 15

Offline Bree

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Re: On pins and needles
« Reply #46 on: October 16, 2015, 10:46:18 pm »
DM were your labs two weeks late or did it just take that long for them to get the results to you?  On my labs, it has test date and results date... which is different from the date I get them.

The other thing I did was tell the nurse at the specialist office (my doctor would just wait till my next appt.) that I needed all my labs released to the internet portal as soon as they become available and at the same time the doctor gets the report.  I told them I know how to read my labs and if there is anything questionable I can get in touch with them ASAP or vice versa.  She said, I'll make sure you get them (so even if they come in Sat morning at 3 a.m. I don't have to wait for the doctor who wouldn't call anyway).  I'm sure I see the results  before the doctor and wonder if they even look at them until right before my next appt.  Worked for me....  it could be the way the different labs and portals work though (not to mention certain doctors), each could be different.

Now... if I can only get my doctor to order the right VL test next time...! ha.

For me, as long as they are coming back UND, I don't care about exact number of weeks, except I do everything I can to just get the test and marginalize anxiety around it in every way I can think of.  I'm happy you have confirmation of the UND!  That's what's important.
Dx 1997 Geno 1a
2002-2003 PEG Intron/riba (48 wks) respond/relapsed
Pre-Harvoni - Viral Load: 13.5 M - Log 7.1
Fibrosure Score F1-2  Pre-Treatment:  AST 73 / ALT 88

7/6/15 Started Harvoni (12 weeks)
10/5/15 HCV NOT DETECTED (One week post EOT)
11/9/15 NOT DETECTED!!! (6 wk post)
12/21/15 NOT DETECTED (12 wk post) 
3/14/16  NOT DETECTED (24 week post)AST 26 ALT 18
SVR ACHIEVED!!! 
CURED YES!!!

Offline Lynn K

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Re: On pins and needles
« Reply #47 on: October 17, 2015, 01:28:37 am »
My doctor wanted an EOT  I would have been happy with skipping the EOT and just doing a 4 week post.  I pretty much control my testing dates I just make sure that the referrals get to the local lab when they need to be there. 

So I did an EOT test on the day that I took my last pill I did a four week just exactly 4 weeks after I finished my treatment and I did a 12 week just exactly 12 weeks after I finished my treatment and next Monday will be exactly 24 weeks after I finished my treatment and I'll be doing a viral load test that day just to be sure.

But yeah if you can I would do the test at 12 weeks post

Good luck
« Last Edit: October 17, 2015, 01:30:21 am by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline drummerman

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Re: On pins and needles
« Reply #48 on: October 17, 2015, 07:03:40 am »
DM were your labs two weeks late or did it just take that long for them to get the results to you?  On my labs, it has test date and results date... which is different from the date I get them.

The other thing I did was tell the nurse at the specialist office (my doctor would just wait till my next appt.) that I needed all my labs released to the internet portal as soon as they become available and at the same time the doctor gets the report.  I told them I know how to read my labs and if there is anything questionable I can get in touch with them ASAP or vice versa.  She said, I'll make sure you get them (so even if they come in Sat morning at 3 a.m. I don't have to wait for the doctor who wouldn't call anyway).  I'm sure I see the results  before the doctor and wonder if they even look at them until right before my next appt.  Worked for me....  it could be the way the different labs and portals work though (not to mention certain doctors), each could be different.

Now... if I can only get my doctor to order the right VL test next time...! ha.

For me, as long as they are coming back UND, I don't care about exact number of weeks, except I do everything I can to just get the test and marginalize anxiety around it in every way I can think of.  I'm happy you have confirmation of the UND!  That's what's important.

Thanks Bree!

yes, for me my EOT lab was 2 weeks after I actually took last pills.  And my 12 week test will be actually 14 weeks after last pill.  I know that technically it doesn't matter... but it would be nice not to have to endure an extended , unnecessary  wait. 

As far as the portal...my nurse was completely in the dark.  Did not have a clue what I was talking about. 

dm
Diagnosed07
Interferon/riba 2008 - non-responder
5/16/15 - AST -34
ALT - 35_ HCV RNA - 10,783,000
 7/6/15 - started viekira/riba
8/11/15  Week 5 <15 vl,  AST 18, ALT 18
9/11/15 Week 9  "HCV NOT DETECTED"!
AST 16, ALT 11.  10/16/16 - 2 weeks post EOT = "HCV NOT DETECTED!   AST - 18,  ALT 14
12/29/15 -12 wk EOT-HCV NOT DETECTED! AST 23, ALT 15
3/26/16 - 24 wk post EOT - HCV NOT DETECTED!! AST 19, ALT 21
1 yr eot - AST 20, ALT 17

Offline drummerman

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Re: On pins and needles
« Reply #49 on: October 17, 2015, 07:06:55 am »
Congrats DM on your UND at EOT (or rather at 2 weeks after EOT) !!!

As for the post-tx problems, it's weird how many people are affected with some sort of problems that take a while to go away. A lot of people on treatments with no riba are also experiencing this. So I don't know if we can lay it off on the riba. Although everyone is different. In your case, perhaps the riba is the main culprit. In my case, I am still sticking to my theory that my immune system was left temporarily overstimulated post-treatment. All of my symptoms in my post-tx malaise (which has now gone away) could be attributed to an immune system acting up when there is nothing to defend against.

Our bodies have been through an enormous change in a very short period of time. So I guess their readjustment to a new life & liver free of HCV for first time in years/decades just takes the time it takes…

Hope your readjustment is speedy!
kim :)

Kim,
Do you have any links regarding your theory about the immune system during tx.  Would love to learn more! 
dm
Diagnosed07
Interferon/riba 2008 - non-responder
5/16/15 - AST -34
ALT - 35_ HCV RNA - 10,783,000
 7/6/15 - started viekira/riba
8/11/15  Week 5 <15 vl,  AST 18, ALT 18
9/11/15 Week 9  "HCV NOT DETECTED"!
AST 16, ALT 11.  10/16/16 - 2 weeks post EOT = "HCV NOT DETECTED!   AST - 18,  ALT 14
12/29/15 -12 wk EOT-HCV NOT DETECTED! AST 23, ALT 15
3/26/16 - 24 wk post EOT - HCV NOT DETECTED!! AST 19, ALT 21
1 yr eot - AST 20, ALT 17

Offline Scoutdoy

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  • Posts: 452
Re: On pins and needles
« Reply #50 on: October 18, 2015, 09:29:30 am »
Dm....haha I finally made it!!! Last pill is gone and the bottle got tossed in the trash! Going for my blood test tomorrow morning. How are you doing?



Go Royals
Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline drummerman

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  • For those regarded as warriors....
Re: On pins and needles
« Reply #51 on: October 18, 2015, 09:38:55 am »
Dm....haha I finally made it!!! Last pill is gone and the bottle got tossed in the trash! Going for my blood test tomorrow morning. How are you doing?



Go Royals
Scout

Fantastic!!  Feels good , don't it?

I'm ok.  Not feeling great, but able to go to work each day.

Takes awhile for the meds to get out of my system.

dm
Diagnosed07
Interferon/riba 2008 - non-responder
5/16/15 - AST -34
ALT - 35_ HCV RNA - 10,783,000
 7/6/15 - started viekira/riba
8/11/15  Week 5 <15 vl,  AST 18, ALT 18
9/11/15 Week 9  "HCV NOT DETECTED"!
AST 16, ALT 11.  10/16/16 - 2 weeks post EOT = "HCV NOT DETECTED!   AST - 18,  ALT 14
12/29/15 -12 wk EOT-HCV NOT DETECTED! AST 23, ALT 15
3/26/16 - 24 wk post EOT - HCV NOT DETECTED!! AST 19, ALT 21
1 yr eot - AST 20, ALT 17

Offline drummerman

  • Member
  • Posts: 538
  • For those regarded as warriors....
Re: On pins and needles
« Reply #52 on: October 18, 2015, 09:41:17 am »
My doctor wanted an EOT  I would have been happy with skipping the EOT and just doing a 4 week post.  I pretty much control my testing dates I just make sure that the referrals get to the local lab when they need to be there. 

So I did an EOT test on the day that I took my last pill I did a four week just exactly 4 weeks after I finished my treatment and I did a 12 week just exactly 12 weeks after I finished my treatment and next Monday will be exactly 24 weeks after I finished my treatment and I'll be doing a viral load test that day just to be sure.

But yeah if you can I would do the test at 12 weeks post

Good luck

Thanks Lynn,
I am going to call and try to get them to adjust my 12 week test date so that it is truly  12 weeks post EOT.
dm
Diagnosed07
Interferon/riba 2008 - non-responder
5/16/15 - AST -34
ALT - 35_ HCV RNA - 10,783,000
 7/6/15 - started viekira/riba
8/11/15  Week 5 <15 vl,  AST 18, ALT 18
9/11/15 Week 9  "HCV NOT DETECTED"!
AST 16, ALT 11.  10/16/16 - 2 weeks post EOT = "HCV NOT DETECTED!   AST - 18,  ALT 14
12/29/15 -12 wk EOT-HCV NOT DETECTED! AST 23, ALT 15
3/26/16 - 24 wk post EOT - HCV NOT DETECTED!! AST 19, ALT 21
1 yr eot - AST 20, ALT 17

Offline Scoutdoy

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  • Posts: 452
Re: On pins and needles
« Reply #53 on: October 18, 2015, 10:03:26 am »
Dm,,,,yes, it feels fantastic! Thankfully I took Harvoni with no RIBA. I have had a relatively easy time with the Harvoni suffering very few side effects during the treatment. I am glad your going to adjust your testing, less stress the better. I will be at the blood sucker tomorrow at 8 am and my appt with hep specialist is the following Monday! My hep doc does not mess around when it comes to this treatment and scheduling. He is also one of the trial study doctors and has a huge staff that really have their crap together. I wish more people had access to a hep doctor that has it so together. It still amazes me because my first appt with him was in June. Biopsy, insurance, meds, and now Oct 18 I am Done! That was pretty fast I think


Go Royals
Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline drummerman

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  • For those regarded as warriors....
Re: On pins and needles
« Reply #54 on: October 18, 2015, 10:06:02 am »
Dm,,,,yes, it feels fantastic! Thankfully I took Harvoni with no RIBA. I have had a relatively easy time with the Harvoni suffering very few side effects during the treatment. I am glad your going to adjust your testing, less stress the better. I will be at the blood sucker tomorrow at 8 am and my appt with hep specialist is the following Monday! My hep doc does not mess around when it comes to this treatment and scheduling. He is also one of the trial study doctors and has a huge staff that really have their crap together. I wish more people had access to a hep doctor that has it so together. It still amazes me because my first appt with him was in June. Biopsy, insurance, meds, and now Oct 18 I am Done! That was pretty fast I think


Go Royals
Scout

You are lucky to have a team that cares.

dm
Diagnosed07
Interferon/riba 2008 - non-responder
5/16/15 - AST -34
ALT - 35_ HCV RNA - 10,783,000
 7/6/15 - started viekira/riba
8/11/15  Week 5 <15 vl,  AST 18, ALT 18
9/11/15 Week 9  "HCV NOT DETECTED"!
AST 16, ALT 11.  10/16/16 - 2 weeks post EOT = "HCV NOT DETECTED!   AST - 18,  ALT 14
12/29/15 -12 wk EOT-HCV NOT DETECTED! AST 23, ALT 15
3/26/16 - 24 wk post EOT - HCV NOT DETECTED!! AST 19, ALT 21
1 yr eot - AST 20, ALT 17

Offline Bree

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  • Posts: 576
  • "Today is a good day for a great day!"
Re: On pins and needles
« Reply #55 on: October 18, 2015, 03:18:27 pm »
Yes, Scout I'm glad you have a great team.  If I had listened to my specialist I wouldn't have even gotten Harvoni.  He wrote the script and orders testing and knows how to interpret, that's about it.

DM, I was thinking 12 weeks post for us is Dec. 21.  It would be cool if we could get results by Christmas!  As it is it might be before New Years.
Dx 1997 Geno 1a
2002-2003 PEG Intron/riba (48 wks) respond/relapsed
Pre-Harvoni - Viral Load: 13.5 M - Log 7.1
Fibrosure Score F1-2  Pre-Treatment:  AST 73 / ALT 88

7/6/15 Started Harvoni (12 weeks)
10/5/15 HCV NOT DETECTED (One week post EOT)
11/9/15 NOT DETECTED!!! (6 wk post)
12/21/15 NOT DETECTED (12 wk post) 
3/14/16  NOT DETECTED (24 week post)AST 26 ALT 18
SVR ACHIEVED!!! 
CURED YES!!!

Offline drummerman

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Re: On pins and needles
« Reply #56 on: October 18, 2015, 05:25:00 pm »
.

DM, I was thinking 12 weeks post for us is Dec. 21.  It would be cool if we could get results by Christmas!  As it is it might be before New Years.

Yep!  That would be very cool.
dm
Diagnosed07
Interferon/riba 2008 - non-responder
5/16/15 - AST -34
ALT - 35_ HCV RNA - 10,783,000
 7/6/15 - started viekira/riba
8/11/15  Week 5 <15 vl,  AST 18, ALT 18
9/11/15 Week 9  "HCV NOT DETECTED"!
AST 16, ALT 11.  10/16/16 - 2 weeks post EOT = "HCV NOT DETECTED!   AST - 18,  ALT 14
12/29/15 -12 wk EOT-HCV NOT DETECTED! AST 23, ALT 15
3/26/16 - 24 wk post EOT - HCV NOT DETECTED!! AST 19, ALT 21
1 yr eot - AST 20, ALT 17

Offline Cal

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  • Cal on Viekira Pak
Re: On pins and needles
« Reply #57 on: October 18, 2015, 05:53:48 pm »
Hi DM,
I wondered where you were. You're on "the other side" . Good on you for UND. Sorry you were mucked around with the results.
Crap that you are still feeling bad. But you are able to go to work ok? So it's like post tx from your first tx? I reckon it's the ribas, and we know they stick around for a while. At least you haven't relapsed DM, your biggest fear. You're winning, just have to go with the flow and cope as best you can. If you can keep working, you're doing good and will get better quicker. Don't forget last time you were post tx you still had the virus, it makes a big difference. You're doing good. Cal :)
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline drummerman

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Re: On pins and needles
« Reply #58 on: October 18, 2015, 05:55:43 pm »
Hi DM,
I wondered where you were. You're on "the other side" . Good on you for UND. Sorry you were mucked around with the results.
Crap that you are still feeling bad. But you are able to go to work ok? So it's like post tx from your first tx? I reckon it's the ribas, and we know they stick around for a while. At least you haven't relapsed DM, your biggest fear. You're winning, just have to go with the flow and cope as best you can. If you can keep working, you're doing good and will get better quicker. Don't forget last time you were post tx you still had the virus, it makes a big difference. You're doing good. Cal :)

Thanks Cal.  Just taking it one day at a time.  Yes, it feels just like the first time post...
so weird.  I know my first time, I just woke up one day and felt fine.  Hoping that day comes soon this time., although sometimes I think I feel a little better day to day..
 
who knows.   Like I said, its weird.  Just really glad I am still UND!

dm
« Last Edit: October 18, 2015, 06:00:19 pm by drummerman »
Diagnosed07
Interferon/riba 2008 - non-responder
5/16/15 - AST -34
ALT - 35_ HCV RNA - 10,783,000
 7/6/15 - started viekira/riba
8/11/15  Week 5 <15 vl,  AST 18, ALT 18
9/11/15 Week 9  "HCV NOT DETECTED"!
AST 16, ALT 11.  10/16/16 - 2 weeks post EOT = "HCV NOT DETECTED!   AST - 18,  ALT 14
12/29/15 -12 wk EOT-HCV NOT DETECTED! AST 23, ALT 15
3/26/16 - 24 wk post EOT - HCV NOT DETECTED!! AST 19, ALT 21
1 yr eot - AST 20, ALT 17

Offline slats1056

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  • SVR to all and to all a good life!
Re: On pins and needles
« Reply #59 on: November 04, 2015, 11:33:24 pm »
 Drummerman, where You at Man? Long time no hear! Hope You are doing O.K. ??? Drop a line to let us know how Your are ! :)
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

 


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