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Author Topic: Veikira Failure?  (Read 14594 times)

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Offline Rick369

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Veikira Failure?
« on: March 03, 2016, 08:44:31 pm »
Hi all,   Very sad to report probable failure of my Veikira + Ribavirin treatment last fall. Got labs drawn today so it's not confirmed but I have that same old ache in my side that tells me I am having a flareup. Ya just know - ya know.
Previous fail with Interferon and Ribavirin in 1999.
Anyone have words of advice for a retreat?  I was feeling so good there for a while and it's very disheartening to go back to that sick feeling and the constant reminder that your liver is slowly being destroyed.

Offline KimInTheForest

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Re: Veikira Failure?
« Reply #1 on: March 03, 2016, 09:28:39 pm »
I very much hope that is not the case for you Rick - relapse, that is. But wait until your VL test comes back. Quite a few of us have experienced that all-too-familiar flank soreness post-treatment that you describe. Yet it turned out we were in fact still undetected. The liver and body are going through a lot after the virus is cleared. And there are other things that can cause that kind of liver irritation that we have grown accustomed to associating with Hep C.

Maybe others will chime in on retreatment protocols for Viekira failure, since I don't know. But wait for the lab results. You may be pleasantly surprised.

kim
« Last Edit: March 03, 2016, 09:30:24 pm by KimInTheForest »
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 lporterrn

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Re: Veikira Failure?
« Reply #2 on: March 03, 2016, 10:23:52 pm »
Rick - I suggest waiting for the results. If I had a dime for every time someone told me they were certain they relapsed because of symptoms, I'd be a wealthy woman. Let us know.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline Lynn K

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Re: Veikira Failure?
« Reply #3 on: March 04, 2016, 12:19:36 am »
Hi Rick

I have a mild pain in my liver on occasion but my 24 week post treatment result last October was not detected.

Don't borrow worry and disappointment from a tomorrow that may never come.

Good luck with your test results
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 Philadelphia

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Re: Veikira Failure?
« Reply #4 on: March 04, 2016, 02:12:34 am »
Hi Rick, you were SVR12 in November yeah? It's highly unlikely you'll be experiencing a relapse. I hope you will keep us in the loop as regards your VL results. The waiting is the worst part. Thoughts are with you.
CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell

Offline jakas

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Re: Veikira Failure?
« Reply #5 on: March 04, 2016, 04:43:42 am »
I have the same liver pain started a week before EOT its off and on I thought it was over but I am wiser now reading the posts above.
M/57 yrs.
Contracted (Unknown) 10-20-30 yrs back ??
Treatment Naive
Geno 1a&1b
VL  17+ million
ALT 200+, AST 170+
Fibroscan F4 ( 26+ kpa ) on 8th Dec. 2105
Started Tx 11th Dec.2015 ( 12 wks. Gilead Harvoni)
7/1/2016 :Viral Load|<25 UND.
23/1/2016: ALT 34 , AST 35, ALP 143
8 week NO labs done
EOT:03.03.2016 ( 84 pills eaten )
ALT 26, ALP 124, BIL .54
V/L <25 UND E.O.T.
4 weeks E.O.T. V/L UND::: SVR 4
SVR 12 and  SVR 24 on 16/8/16
Fibro 24.5kpa 23/05/16
SVR 63 05/17
Fibro 17.03.2020 kpa 6.3

Offline Rick369

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Re: Veikira Failure?
« Reply #6 on: March 04, 2016, 08:52:06 am »
Thanks for the kind words and support. Will wait for my labs of course, but my pain is anything but mild at this point.  Hard to figure what that could be other than a relapse.     Have a fantastic day!   Rick

Offline Lynn K

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Re: Veikira Failure?
« Reply #7 on: March 04, 2016, 03:38:25 pm »
Just to try to reassure you as far as I know there have been no relapses after SVR12 so really the odds are very much in your favor. Have you asked your doctor about that pain?

If you didn't ever have hep c you would probably want to have a strong pain checked out it could be a lot of things and some could need attention sooner rather than later.

Could be something going on in your digestive track could be maybe gall bladder or appendix or lots of things.

So while you are waiting if it were me I would have it checked.

Best to you
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 Lynn K

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Re: Veikira Failure?
« Reply #8 on: March 04, 2016, 03:56:17 pm »
http://www.mayoclinic.org/symptoms/abdominal-pain/basics/causes/sym-20050728


Abdominal pain has many potential causes. Many causes, such as gas pains or a pulled muscle, aren't serious, while other conditions require timely medical attention.
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 Rick369

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Re: Veikira Failure?
« Reply #9 on: March 04, 2016, 08:31:38 pm »
My pain is the same as what I experienced prior to treatment with Veikira - it waxes and wanes but has become really bad at times as I have aged.  Get regular ultrasounds and advanced imaging (forget the type) but nothing has been identified.
It's my understanding that this is a normal thing for a lot of Hep C sufferers - not that it makes me feel any better or less frightened.  Will soldier on and wait for blood work results.    Thanks Lynn

Offline Lynn K

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Re: Veikira Failure?
« Reply #10 on: March 04, 2016, 08:49:09 pm »
Hi Rick

Do you have cirrhosis? That could also explain the pain. Even when cured of hep c those of us with liver damage and cirrhosis will still need to deal with the damage left behind by hep c. Even though our hep c is gone we will still have our liver damage from years of hep c infection.
« Last Edit: March 04, 2016, 11:40:33 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 dragonslayer

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Re: Veikira Failure?
« Reply #11 on: March 04, 2016, 11:37:03 pm »
It took me about a year after successful treatment with Harvoni for those upper right quadrant pains to completely disappear!  Ive never had any tests indicating I had cirrhosis. Indications were quite the contrary with 2 biopsies, 1 as recently as a year and a few months prior to treatment, and the other in 2008, both of which showed stage and grade  in the 0-1 range, with virtually no progression in the years between; this after having had HCV for 40 yrs.

So, even with no cirrhosis and minimal liver damage, it can still take a year, in my case, for healing to reach a point where those annoying pains disappear.
« Last Edit: March 04, 2016, 11:44:41 pm by dragonslayer »
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 CureSeeker

  • Member
  • Posts: 121
  • Virus Free! Happy Dance Time!
Re: Veikira Failure?
« Reply #12 on: March 05, 2016, 07:35:57 pm »
Wow, I'm so happy I read this thread!  I'm not sure why I did, since I didn't take the drug in the title.  Thanks Rick for making it though, and for everyone reporting that they had the same experience.

I too am experiencing pains in the same area since completing treatment.  I was concerned it was my liver, since I haven't had a gallbladder to blame (not as severe as gallbladder pain by a long shot either) since I was 27.

Dragonslayer, I'm happy about your post as well.  You outline a timeframe to look forward to no longer having this nagging reminder giving me a mild poke or two from time to time.

I confess I was a bit worried too, but when my 3 month came back undetected I felt a little better.  Its a relief to learn its something rather commonplace.

Thanks again everyone! :D
Once you eliminate the impossible, whatever remains, no matter how improbable, must be the truth.

~ Arthur Conan Doyle


Genotype 3a, F 0-1
Sovaldi & Ribavirin x 24 weeks

2/23/16 - UNDETECTED!  SVR12 achieved.  :D
6/21/17 - UNDETECTED!  1.5 years post treatment.
July 2018 - UNDETECTED!

Offline Philadelphia

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Re: Veikira Failure?
« Reply #13 on: March 05, 2016, 07:44:54 pm »
And then you get people like me who have had no liver pain despite cirrhosis and forget what side of the body their liver is on. Is it the left?
CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell

Offline CureSeeker

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  • Virus Free! Happy Dance Time!
Re: Veikira Failure?
« Reply #14 on: March 05, 2016, 08:17:15 pm »
LOL, Philadelphia!  :D

(It's the right. *winks*)
Once you eliminate the impossible, whatever remains, no matter how improbable, must be the truth.

~ Arthur Conan Doyle


Genotype 3a, F 0-1
Sovaldi & Ribavirin x 24 weeks

2/23/16 - UNDETECTED!  SVR12 achieved.  :D
6/21/17 - UNDETECTED!  1.5 years post treatment.
July 2018 - UNDETECTED!

Offline Rick369

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  • Posts: 19
Re: Veikira Failure?
« Reply #15 on: March 05, 2016, 09:17:05 pm »
Will get my blood work results next week, but really worried about a relapse. Felt like a new man after treatment and no pain or tenderness at all, so this is really disappointing. I still work (24 hrs a week) and am very physically active so it was a joy be well again.  I want that feeling back!

Offline CureSeeker

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  • Virus Free! Happy Dance Time!
Re: Veikira Failure?
« Reply #16 on: March 05, 2016, 11:39:31 pm »
I totally understand the anxiety Rick.  I'm paranoid about it myself, mainly because my husband relapsed - but he was more than a decade older than I am, and his liver health was not as good as mine at the time of his treatment.

There seem to be people whose age was like his, and their liver health worse than his, and even though they also relapsed, ended up with a positive outcome in the long run anyway.

Try to remember that maintaining a positive state of mind is the most important thing for all of us.  As is said in the book, Dune, "Fear is the mind killer."

In the end, as I wrote on another thread where relapse anxiety was expressed, we all need to live for today, and worry about being happy. 

We can trip on the sidewalk or slip on a banana peel, get hit by a bus or train, or any number of ways we can die right now, and then all the time we spent worrying about relapse and/or cancer would just be time and energy we wasted.

I know coming back undetected again is the best relief you can possibly get right now, but I also know that the fear of relapse probably secretly lurks in everyone's mind until whatever the timeframe is that they find themselves deemed to be completely out of the woods, and require no more testing - for me that is said to be after I get my results from my last labs that will be taken sometime in mid-November 2020, lol.

Be happy!   :)


« Last Edit: March 05, 2016, 11:43:16 pm by CureSeeker »
Once you eliminate the impossible, whatever remains, no matter how improbable, must be the truth.

~ Arthur Conan Doyle


Genotype 3a, F 0-1
Sovaldi & Ribavirin x 24 weeks

2/23/16 - UNDETECTED!  SVR12 achieved.  :D
6/21/17 - UNDETECTED!  1.5 years post treatment.
July 2018 - UNDETECTED!

Offline Rick369

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Re: Veikira Failure?
« Reply #17 on: March 06, 2016, 08:31:42 pm »
Thanks CureSeeker,   Your kind words and advice are much appreciated.

Offline I fightis thetitis

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Re: Veikira Failure?
« Reply #18 on: March 06, 2016, 10:50:00 pm »
For 30 years I have had what some refer to as "Liver pain"
And, I have had 11 different GI's (I keep detailed records..sad hobby) who have varied responses to my "Upper Right Quadrant" liver pain.

In the 90's I was always told "that" pain had nothing to do with my Liver bc liver does not generate pain... yadee yadee yada. Until finally a great GI that had some progressive real life experience with Hep C told me, "when the liver becomes inflamed this creates a tension with the membrane case that surrounds the liver. The actual pain is NOT the liver itself but within the stretched membrane." 
Specifically, a lesion or "viral flare up" can be the source of the pain for Heppers.
In most cases the difference between the two is an episode of a chronic viral flare up will last from a day to a couple weeks.
An example is some folks that carry multiple or co existing viruses like Hep C and Herpes, will get upper right quad pain during a Herpes outbreak due to excesive inflammation that causes swelling.

Lesion pain is more more rare, persistent and the severity of pain can increase over a short amount of time that typically does not go away after a couple of weeks.

She was also the best GI in regards to diet, exercise and alternative therapies for Liver health.

I later mentioned this a couple of other GI's and they were not as informed.

Cureseeker.. your labs will be back soon enough. Like many here I used to worry and imagine and have horrible assumptions about the future. The best advise I ever got came from dear old Dad,
"Son.. don't bleed until you get shot! Until then just be happy you didn't get shot!"
Thx Dad!

Peace all,

Greg
     
M59  56@start of TX. date infected:1976
diagnosed 1997 - asymtomatic
Genotype 1a
AST 111 -ALT 124 - AFP -89
Viral Load 1900000 - Log 6.28
Fibro Test F4 ActiTest A3
Harvoni 24 wks - start date 11/24/15

6 Week Labs VL Undetected!
104 weeks EOT Undetected.

8/25/17 Fibrosure score 80 = F4
11/10/17 Fibroscan 7.5 mean 1.6 m/s = F2
8/2018 Ultra sound normal.

Offline I fightis thetitis

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Re: Veikira Failure?
« Reply #19 on: March 06, 2016, 10:50:52 pm »
Sorry Cureseeker.. I meant Rick 369!
M59  56@start of TX. date infected:1976
diagnosed 1997 - asymtomatic
Genotype 1a
AST 111 -ALT 124 - AFP -89
Viral Load 1900000 - Log 6.28
Fibro Test F4 ActiTest A3
Harvoni 24 wks - start date 11/24/15

6 Week Labs VL Undetected!
104 weeks EOT Undetected.

8/25/17 Fibrosure score 80 = F4
11/10/17 Fibroscan 7.5 mean 1.6 m/s = F2
8/2018 Ultra sound normal.

Offline Mugwump

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Re: Veikira Failure?
« Reply #20 on: March 07, 2016, 01:05:14 pm »
And then you get people like me who have had no liver pain despite cirrhosis and forget what side of the body their liver is on. Is it the left?
Who knows considering that cyclonic action in Australia and water goes down the drain backwards you might very well have your liver on the left hand side. You do drive on the wrong side of the road.


I too have the hepatic pain still lingering and am SVR cured. But my pain eases greatly when I fluff, which according to my wife occurs far too frequently.


Cheers
Eric
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline Rick369

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Re: Veikira Failure?
« Reply #21 on: March 07, 2016, 08:11:00 pm »
Good info "I Fightis"   I was always told there should be no pain, but the people saying that don't have Hep C of course.  My troubles sure feel like a flare up.
  I am a VA patient and you really don't get to see a GI specialist at all. I asked about pain once and couldn't get a straight answer - one Doc thought I was seeking pain meds or something. I have gotten generally good care at the VA but it does annoy me that you see a primary care physician before, during and after treatment. They no nothing of these drugs. 

Offline CureSeeker

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Re: Veikira Failure?
« Reply #22 on: March 08, 2016, 10:44:09 pm »

I too have the hepatic pain still lingering and am SVR cured. But my pain eases greatly when I fluff, which according to my wife occurs far too frequently.


Cheers
Eric

I read this this morning and I started paying attention.  I think you are onto something.

I've begun to notice a correlation between the pain, and a moment or so later - gas and/or solid and/or both! (Cant believe I'm writing about this like its really exciting news, lol.)

Makes me feel a lot better about the pains.   Thanks Eric.
Once you eliminate the impossible, whatever remains, no matter how improbable, must be the truth.

~ Arthur Conan Doyle


Genotype 3a, F 0-1
Sovaldi & Ribavirin x 24 weeks

2/23/16 - UNDETECTED!  SVR12 achieved.  :D
6/21/17 - UNDETECTED!  1.5 years post treatment.
July 2018 - UNDETECTED!

Offline Rick369

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Re: Veikira Failure?
« Reply #23 on: March 30, 2016, 01:08:09 pm »
Turns out no relapse. I am still undetectable and very happy about it.  Still no answers about what caused my pain, which has since abated.   

Offline lporterrn

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Re: Veikira Failure?
« Reply #24 on: March 30, 2016, 01:28:34 pm »
Sure nice to have reassurance, although the pain will likely remain a mystery. In time it gets easier to trust that cured means cured.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline Philadelphia

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Re: Veikira Failure?
« Reply #25 on: March 30, 2016, 05:08:31 pm »
Well that is excellent news!
CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell

Offline Pete

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Re: Veikira Failure?
« Reply #26 on: March 30, 2016, 11:46:46 pm »
Great news indeed Rick on your recent lab results!  I think your home free now.  I do hope you liver discomfort steadily declines over time and starts to mend. 

Regards,
Pete

 


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