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Author Topic: EOT One Week Happy But Singing The Blues  (Read 51347 times)

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Offline Bree

  • Member
  • Posts: 576
  • "Today is a good day for a great day!"
Re: EOT One Week Happy But Singing The Blues
« Reply #100 on: November 01, 2015, 01:24:45 am »
Cal, we must talk at some point!  I think anything is possible! 8)
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 Bree

  • Member
  • Posts: 576
  • "Today is a good day for a great day!"
Re: EOT One Week Happy But Singing The Blues
« Reply #101 on: November 01, 2015, 01:31:09 am »
How great is it that one can get info. faster here on the forums than one can get a return call from the Docs' office, get power back on, get Lab results, or info. from the makers of the Meds. we are on. Too, cool :). And on top of that the info. We share is usually more direct, to the point, and reliable than from the so called knowledgeable people that We rely on : ??? ??? ???
 Thanx Gnatty & Bree, as usual right there when needed My Amigos en las armas de Guerra! Much appreciated. Sometimes when the grey matter confuses Me, it's nice to have back up brains on My helpful friends list ;D ;D ;D ;D

Tommy, I feel more informed than my doctor specialist!  He has his certain knowledge which I need (he's not an info sharing kind of guy)  but without this forum I would be in the dark about so many things. 
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 slats1056

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  • Posts: 765
  • SVR to all and to all a good life!
Re: EOT One Week Happy But Singing The Blues
« Reply #102 on: November 01, 2015, 01:32:41 am »
  Bree, Just thinking out loud here! I wonder what it would take to get the Med. companies on board?? :-\. What do all You other guys think about that idea????
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

Offline slats1056

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  • Posts: 765
  • SVR to all and to all a good life!
Re: EOT One Week Happy But Singing The Blues
« Reply #103 on: November 01, 2015, 01:35:53 am »
  AHH, the dark ages , Good Times , Good Times. I probably would have been a punisher for the Inquisition knowing My luck :o
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

Offline KimInTheForest

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  • Posts: 1,972
  • Believe in yourself
Re: EOT One Week Happy But Singing The Blues
« Reply #104 on: November 01, 2015, 01:37:24 pm »
Hey Yall... Beto, Tommy, this concept might be in the realm of possibility.

What if...let's say a dozen post treatment Hep C people came to Hawaii and did a documentary.  We could have a few group sessions on camera talking about... what it means to get treatment, the process of getting treatment (insurance, etc), being on treatment, post treatment and then what it's like to be cured.  The good, the challenges, the health benefits and ultimately the process of freedom.

It doesn't have to be a commercial but a documentary and could be used to sway insurance and government to move toward making treatments more readily approved for everyone.  It would be in, let's just say, the powers that be, best interest to subsidize this effort even if quietly.

Beyond that, we could have our own separate special times together.

I have experience as a facilitator,  I could even get the camera crew over here.
I'm not ready to reveal which island I'm on for anonymity at this moment, but let's just say it's known as a healing island. 

And, if this turns into a serious discussion, I think we should take it "off forum" to discuss.  Food for thought....

I think this is a PHENOMENAL idea, Bree !! I would definitely be keen to participate (especially if it can be subsidized to cover airfare). I think this is something that could do a lot of good!

Already sportin' my shades,
kim  8)
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 Bree

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  • Posts: 576
  • "Today is a good day for a great day!"
Re: EOT One Week Happy But Singing The Blues
« Reply #105 on: November 01, 2015, 02:16:31 pm »
I think this is a PHENOMENAL idea, Bree !! I would definitely be keen to participate (especially if it can be subsidized to cover airfare). I think this is something that could do a lot of good!

Already sportin' my shades,
kim  8)

Thanks Kim.  I think a proposal well written much like a grant proposal might have some weight.  We could all sign it.  Like, we are good at it, after our practice with our appeals and all.  Nothing to lose either!
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

  • Member
  • Posts: 1,972
  • Believe in yourself
Re: EOT One Week Happy But Singing The Blues
« Reply #106 on: November 01, 2015, 03:46:12 pm »
Thanks Kim.  I think a proposal well written much like a grant proposal might have some weight.  We could all sign it.  Like, we are good at it, after our practice with our appeals and all.  Nothing to lose either!

Right on, Bree. (Or should i say write on? ;> ) And as you say, absolutely nothing to lose in trying. :)

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 BDK

  • Member
  • Posts: 58
  • "Appeal, Appeal, Appeal!"
Re: EOT One Week Happy But Singing The Blues
« Reply #107 on: November 06, 2015, 12:25:51 pm »
4 weeks EOT today - supposed to get blood work done last Tuesday but postponed it (= chickened out!) til next week.  I can totally relate to the feeling tired - like everyone else, I have stuff to do, part time work, helping my daughter with college apps, getting my inlaws moved to assisted living and their house ready to sell - daily stuff we all deal with.  But the tiredness!  I have no idea what happened.  I used to not exactly be energetic but I could take 12 mile hikes and also backpack (slowly).  Now the dog is giving me the fish eye because all she needs is to go round the block and that seems an effort. Plus a herpes outbreak and a shingles almost outbreak, headed off my Acyclovir (love those anti-virals).  It's so good (in a bad sort of way) to read that others are feeling fatigue too - now let's hear it from those who were feeling it and are now back to 100%! 

PS  Did anyone get any hair thinning on Harvoni alone?

Cheers to all!  Barbara
Genotype 1a
Diagnosed 1992
Liver biopsy 1998 stage 0-1.
Peg inf + riba 1999, stopped at 25 weeks due to side effects-undetected then but reappeared within 3 months.
Liver biopsy 2006 - stage 0-1.
Fibroscan 2015 - stage 0-1.
VL >12 million.
AST, ALT high normal range.
7/17/15 Started Harvoni for 12 weeks.
8/4/15   VL 70, AST 19, ALT 11
9/17/15 VL Undetected (<12), AST 19, ALT 16
11/10/15 EOT +5 weeks VL Undetected (<12), AST 16, ALT 14
1/12/16 EOT + 14 weeks VL Undetected (<12)

Offline Bree

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  • Posts: 576
  • "Today is a good day for a great day!"
Re: EOT One Week Happy But Singing The Blues
« Reply #108 on: November 06, 2015, 01:31:10 pm »
Hi Barbara,  I'm sure you blood work will go well.  With all that you are handling, no wonder you are tired!

I'm getting blood workup on Monday which will be 6 weeks EOT.  I wasn't scheduled to get it until 12 weeks EOT but I asked my internist as I want a full blood workup.

Since EOT I have noticed there is hair on my hands when I wash it... for sure a little hair loss, hope it's not serious.  Someone just started a new thread about it today which I'm going to respond to. 
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 gnatcatcher

  • Member
  • Posts: 1,372
Re: EOT One Week Happy But Singing The Blues
« Reply #109 on: November 06, 2015, 01:35:48 pm »
Barbara, someone else began getting hair loss after treatment; s/he started a post with a poll here: http://forums.hepmag.com/index.php?topic=3572.0 (I think that is the thread Bree refers to.)

As to the tiredness post-Tx, me too, although not as much as you, and not every day.
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 beto

  • Member
  • Posts: 548
  • "no risk it, no biscuit"
Re: EOT One Week Happy But Singing The Blues
« Reply #110 on: November 06, 2015, 02:12:36 pm »
good luck barb

Like Bree I am getting a blood draw Monday for approx 6 weeks.  Bree, you will rock this one.  Glad they are doing it at 6, that's halfway girl.
HCV/nonA,nonB acute phase 1975
HCV detected active 1990
HCV persistent chronic diagnosis 1995
1995 liver enzymes mild elevations
1996 Biopsy F2 fibrosis
treatment naive geno 1-A
2000-to early 2015 Viral load 150, 000 to 800, 000
recent liver enzymes before treatment alt/ast 59to209,  Fibroscan F4,cirrhosis
start tx Harvoni 7/11/2015
6.5 week-UD-ast/alt 25/25
9wk-UD-ast18 alt23
10/3/15 completed tx
11/5/15 new fibroscan f0-f1 amazed
6wk EOT UD ast/alt 20/20
12EOT-UD-ast/alt19/21
25wk-SVR! 19/18

Offline Bree

  • Member
  • Posts: 576
  • "Today is a good day for a great day!"
Re: EOT One Week Happy But Singing The Blues
« Reply #111 on: November 06, 2015, 04:07:18 pm »
good luck barb

Like Bree I am getting a blood draw Monday for approx 6 weeks.  Bree, you will rock this one.  Glad they are doing it at 6, that's halfway girl.

Thanks Beto,  And so will you! I needed to hear that. My specialist only wanted EOT and 24 Weeks.  I argued him into also 12 weeks EOT.  I've had a few things happen that felt challenging (reaction to some paint, an invasive facial PDT treatment, extra stresses with family member)  that knocked me backward.  It scared me... ME, the queen of "living in the meantime".  I'm planning to do a few more minor medical things while I have insurance so need to know where I stand before I make further decisions.... plus I'm not feeling peak.

To heck with the specialist, I got in touch with my awesome internist, 3 week wait to see her so made appt., then emailed her a list of blood work I think I need to get in advance of seeing her and she concurs and emailed back... "all labs ordered".  She is a star!  If labs cut down on the extra anxiety we go through, then that is a health benefit in and of itself.   

If we are still (cancel that...) because we are still UND at 6 weeks, I think that's a pretty good indicator for 12 weeks and beyond.  We may have to start a new thread on the Results, where they have "check in at 4, 8 and 12 weeks" and start one for 6 weeks or report under the 4 weeks.  Still so happy for you Beto with that scan!!!
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 Cal

  • Member
  • Posts: 957
  • Cal on Viekira Pak
Re: EOT One Week Happy But Singing The Blues
« Reply #112 on: November 06, 2015, 05:37:02 pm »
Bree,
I agree on the bloods easing our mental health, which is just as important! I am having my 12 week EOT next Friday.  He wanted me to wait, but i have told him, I need to know if I've relapsed because, then we quit this extra month. He agreed and wrote it up. Now I'm packing it! Anyhoo, I'm also having a 16 week EOT if we get that far. Even though he only wanted me to have a 12 week post EOT test. That would equal a 2 week, which wasn't quite UND. And the post EOT . Two V/Ls! Not good enough. We're not lab rats (well we are but we don't have to be treated like them!)  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 Bree

  • Member
  • Posts: 576
  • "Today is a good day for a great day!"
Re: EOT One Week Happy But Singing The Blues
« Reply #113 on: November 06, 2015, 05:52:33 pm »
Cal, totally agree.  The health benefits of not living in fear far outweigh the few extra bucks that a sense of relief and well-being gives us.  Counseling would costs more!   We have technology today to help us.

Glad you are getting blood work, how you compute it is a little confusing for me.
I'm calling 12 EOT  - 12 weeks after actual completion of treatment, not start date.  And, I think if I understand you correctly, your 12 weeks will be end of riba and 16 weeks will be your actual EOT (no weeks just EOT) (you kind of have two, one with ribas and one without).  Then there's the post... whenever your doc takes them... 4 weeks post, 8, 12, 24, etc.  Anyway, that's how I understand it.

Tommy will be like... what the hell is happening on my thread!  Ha ha Tommy!   
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 beto

  • Member
  • Posts: 548
  • "no risk it, no biscuit"
Re: EOT One Week Happy But Singing The Blues
« Reply #114 on: November 06, 2015, 06:34:53 pm »
Tommy gets a demerit for not chiming in and setting the couse back...hehe

Bree- Totally down with the 6 week club.  As for the peace of mind well...waiting for the results 'peace' not....good results, ecstasy then wait for the next...haha.

When my labs got messed up and they did only the CBC,  I got the results online.  The test was 11.00 US.  I thought, that's nothing.  I guess it is a big deal to the insurance CO's or the GOV.

I too had a disrupting time last week because of oral surgery and complications with bleeding.  Caused a lot of stress.  So I started to feel like it was a bad idea to put my body through that after tx, plus pain meds and antibiotics.  So of course my mind got on the "oH MY" train...will this affect the numbers.  teehee
HCV/nonA,nonB acute phase 1975
HCV detected active 1990
HCV persistent chronic diagnosis 1995
1995 liver enzymes mild elevations
1996 Biopsy F2 fibrosis
treatment naive geno 1-A
2000-to early 2015 Viral load 150, 000 to 800, 000
recent liver enzymes before treatment alt/ast 59to209,  Fibroscan F4,cirrhosis
start tx Harvoni 7/11/2015
6.5 week-UD-ast/alt 25/25
9wk-UD-ast18 alt23
10/3/15 completed tx
11/5/15 new fibroscan f0-f1 amazed
6wk EOT UD ast/alt 20/20
12EOT-UD-ast/alt19/21
25wk-SVR! 19/18

Offline slats1056

  • Member
  • Posts: 765
  • SVR to all and to all a good life!
Re: EOT One Week Happy But Singing The Blues
« Reply #115 on: November 07, 2015, 11:49:17 pm »
 :(  HEY HEY HEY!!!!! What is this? Kick a guy when he's down :( LOL!!
   Been out of touch for several days. Wednesday feeling really exhausted, then started having severe lower G.I. distress. Left work early & stayed home Thursday. Spent a lot of time in the throne room if You know what I mean. G.I. said no worries unless fever  spikes or dehydration becomes an issue. Oh yea , then the lovely little migraines kicked up Thursday. Everything eased up Friday so I went ahead with the HIDA scan of the gall bladder He had scheduled. Supposed to be outpatient procedure. In & out in a couple of hours! NOT!!!! >:( >:( >:( >:( Checked in at 10:00 AM and didn't get out until 3:30 PM ??? ??? ??? ??? No food since dinner Thursday, no fluids since midnight!  Laid on My back under the scanner from 11:00 AM until completion at 3:30 PM ::) ::) ::) Back is stiff as crap and My hips are killing Me. Oh, I got about 2-3 ozs. of water and got to get up & go pee around 2:15 PM. Boy I was fit to be tied >:( >:( >:( >:(
 Hopefully the results come back good. More stress & anxiety waiting for that!

 Any whoo, Kinda tired & worn out from the B.S. the last 3 days. But still kickin' & bitchin' with the best of them!

 BTW, I look at this as our thread. I have hijacked enough of other threads to even begin to worry about that.

 ROSES ARE RED , VIOLETS ARE BLUE , I AM SCHIZOPHENIC AND SO AM i!!!!!!
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

Offline Else

  • Member
  • Posts: 523
  • Appeal, appeal, and appeal again!
Re: EOT One Week Happy But Singing The Blues
« Reply #116 on: November 11, 2015, 12:05:40 pm »
Hey Tommy!  :)  I hope you're bouncing back from your marathon appointment.  Feeling better?  Just checkin' on ya - miss your happy craziness around here!   :o 8) ;D
F/53 yr
diagnosed 1995
Genotype 1a
ALT: 58 AST: 39 ALK: 105
Viral load 4,201,950 IU/ml
Fibroscan 6.5 (F1-F2) Fibrosure 0.36 (F1-F2)
Treatment-naive
After 3 denials, finally approved!
Harvoni 12 wks - start date 9/15/15
4 wk labs 10/14/15
ALT: 12 AST: 16 ALK: 85
HCV Not Detected!!!
8 wk labs 11/10/15
ALT: 13  AST: 15  ALK: 77
12 wk (EOT!) labs 12/8/15
ALT: 11 AST: 15 ALK: 78
HCV Not Detected!!!
10wk posttx labs 2/11/16
ALT: 22 AST: 17 ALK: 61
HCV Not Detected!! SVR10!!!
SVR10 (99.7% Cured!!!)

Offline slats1056

  • Member
  • Posts: 765
  • SVR to all and to all a good life!
Re: EOT One Week Happy But Singing The Blues
« Reply #117 on: November 11, 2015, 01:12:40 pm »
Hey Else, I appreciate the shout out. Fatigue has been kicking My ass from here to kingdom come! Headaches seem to have gone for now( SHHHH!!! Don't say anything!!! ) Don't quite know what to think about the lower G.I. issues , joints are still jacking Me up though. Over all I feel pretty good. Just been lurking & reading here lately. Trying to stay upbeat , some of the recent posts have brought Me back to reality. Meant to read my own mortality! I really am blessed to be in such good shape that I guess I need to keep My mouth shut and count My blessing big time. I don't want to seem like THAT person that gripes and moans all the time , But I have noticed several of the admonishers from before My arrival here on the forums are doing just that. Therefore I shouldn't add insult to injury & let it slide. They are just as human as I after all. HARVONI has truly been a Godsend To many of us. I just think ALL of the experiences should be out there & not just the spit polished/ shiny stuff . I realize negative thoughts can be detrimental, BUT HEY , We are all grown-ups here. All should be able to separate the wheat from the chaff. Read and learn, research and understand, observe and adapt :) What is to say My bad Sx's should be diminished for the sake of sunshine & lollipop Sx's??????? :P :P :P :P

  Anyway, how are You My friend? Hope this find You in good health and spirits. Though I cannot picture You as anything but a glass half full kinda girl to My glass half empty! Like I sais just sleazing around the edges & reading. Here is to short waits, undetecteds , SVR , and Sunshine on Your face. Oh yea, don't forget the Unicorns farting pixie dust as they fly through the sky. Hopefully it tastes as good as it looks, cause Man that shit gets into everything ;D ;D ;D 8) 8) 8)
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

Offline Else

  • Member
  • Posts: 523
  • Appeal, appeal, and appeal again!
Re: EOT One Week Happy But Singing The Blues
« Reply #118 on: November 11, 2015, 02:34:53 pm »
Damn, just accidentally deleted a huge post.  >:(  And just when I was typing about hawaiian menehunes - ha!  That's how those little buggers operate.  ;) Re: magical creatures - most are up to mischief when you look into it.  Fairies, leprechauns, etc. So I wouldn't be turning my back on no stinkin' unicorn!  And cover your plates 'cause that sure ain't pixie dust!!!

No worries about being THAT person while I'm around, Tommy.  I'm THAT person.  Thankfully not due to Harvoni side effects, but my experience with my liver specialist's office sets me off like a tea kettle.  I don't suffer fools gladly and I see no reason to do it silently.  What if a reader (new or not) is having the same experience?  Validation is so important.  It makes one feel less alone, less crazy.

Real life information, empowerment, and validation of symptoms and experiences are what make this forum so powerful.

About your "Game of Thrones" (hey, you started that joke  ;)) have you tried the BRAT diet that worked for Kim in the Forest?  Also, glucosamine and chondroitin are both great supplements for joint pain.  Backed up by a ton of sound literature.  And as an anecdotal addition - a combo of the two has worked wonders for my 13 year old corgi.  :)  He's back to his old jolly self.

I'm am so a 'glass half-empty' kinda gal.  It just so happens I like what's in my glass right now so that's good.  But where's the motivation for filling a glass that's half full?  Bah.  Sounds passive to me. 

There's no room for passivity or disempowerment when dealing with our health.  Especially HCV!!!  So bring on the gripes and moans, cowboy!   8)  It's what makes up life.  And it's the pauses between that make it music.   ;D

F/53 yr
diagnosed 1995
Genotype 1a
ALT: 58 AST: 39 ALK: 105
Viral load 4,201,950 IU/ml
Fibroscan 6.5 (F1-F2) Fibrosure 0.36 (F1-F2)
Treatment-naive
After 3 denials, finally approved!
Harvoni 12 wks - start date 9/15/15
4 wk labs 10/14/15
ALT: 12 AST: 16 ALK: 85
HCV Not Detected!!!
8 wk labs 11/10/15
ALT: 13  AST: 15  ALK: 77
12 wk (EOT!) labs 12/8/15
ALT: 11 AST: 15 ALK: 78
HCV Not Detected!!!
10wk posttx labs 2/11/16
ALT: 22 AST: 17 ALK: 61
HCV Not Detected!! SVR10!!!
SVR10 (99.7% Cured!!!)

Offline Bree

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  • Posts: 576
  • "Today is a good day for a great day!"
Re: EOT One Week Happy But Singing The Blues
« Reply #119 on: November 11, 2015, 02:59:56 pm »
I'm still trying to decide if menehune's can be trusted!  8)  I know where a menehune pond is where I live (I'm serious)!  So we'll just have to go see or maybe invite them to our party.... and speaking of magical creatures, I have two little white 8 pound dogs, brother and sister, everyone says "don't feed them after midnight" they'll probably turn into gremlins!

Thank you for sharing Tommy and Else.  Else, I'm with you on the liver specialist.  I have had a horrible time with mine.  I didn't want to burn a bridge so I tolerated him, but he has caused me much unnecessary grief.  I did call him on it.  Doesn't matter.  He's not going to change.  We have to look out for ourselves.  My real internist doctor is a dream.  I just got blood work due to some concerns and went straight to her.  Forget him... he probably wouldn't even order it.

My glass is half empty and half full.  I try to focus on the full part... I like life that way... makes me happier.  Otherwise I get into fear and anxiety.  Life is precious and beautiful.

We're all human and have many different experiences.  And, most certainly with this treatment.  It's important to share them and get support. 

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 slats1056

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  • Posts: 765
  • SVR to all and to all a good life!
Re: EOT One Week Happy But Singing The Blues
« Reply #120 on: November 11, 2015, 03:51:44 pm »
 Menehune!!!! Just watched an old recorded episode of America Unearthed . Any body wanna guess where it was at and one of the subjects?????? Hawaii & Menehune's of course!!!! Back in My wild & woolly days----- We didn't need no stinkin' glasses!!!! That is one of the many reasons My liver is in bad shape! What was the bad ass little gremlins name?? Stripe???? Leather jacket , shades , cigarette, & a drink in hand.
 Definitely wasn't a GAME of thrones, more like the real deal!!LOL. BRAT diet is next if this doesn't clear up quickly!
 Been taking MSM for years for a shoulder that is screwed up , except during Tx.! checking into glucosamine/chondroitin also. Never even bothered suffering the fools back in the day, just put them out of their misery!!! :D Just think how drab & disinteresting thing would get if us folks without a thought filter weren't around???
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

Offline Else

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  • Posts: 523
  • Appeal, appeal, and appeal again!
Re: EOT One Week Happy But Singing The Blues
« Reply #121 on: November 11, 2015, 05:35:07 pm »
Sure they have a pond, Bree.  They built it!  It's what they do.  When you go there (in the daylight!!!) make sure and leave some ili'ili for them.  You'll probably already see plenty there - they do love their dancing and singing!  Regular party animals, they are.  But leave them to their OWN parties, girl.  They're trouble.  OTOH, if you make nice, leave a few (daytime!) gifts, you just might get a few chores done for you while you're sleeping.  ;)

Ahahaha!  Good point about those glasses, Tommy.  I used to pull a cork or two myself back in the day.  Hadn't a clue about my HCV status.  Oops.

Filters are for coffee pots!!!   ;D 8) ;D

F/53 yr
diagnosed 1995
Genotype 1a
ALT: 58 AST: 39 ALK: 105
Viral load 4,201,950 IU/ml
Fibroscan 6.5 (F1-F2) Fibrosure 0.36 (F1-F2)
Treatment-naive
After 3 denials, finally approved!
Harvoni 12 wks - start date 9/15/15
4 wk labs 10/14/15
ALT: 12 AST: 16 ALK: 85
HCV Not Detected!!!
8 wk labs 11/10/15
ALT: 13  AST: 15  ALK: 77
12 wk (EOT!) labs 12/8/15
ALT: 11 AST: 15 ALK: 78
HCV Not Detected!!!
10wk posttx labs 2/11/16
ALT: 22 AST: 17 ALK: 61
HCV Not Detected!! SVR10!!!
SVR10 (99.7% Cured!!!)

Offline KimInTheForest

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  • Posts: 1,972
  • Believe in yourself
Re: EOT One Week Happy But Singing The Blues
« Reply #122 on: November 18, 2015, 11:07:32 pm »
Where is our ByeByeC Marianne these days? Haven't seen hide nor hair nor keystroke from her for about 2 weeks. Hope you are doing alright Marianne, wherever you are! :)

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 Else

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  • Posts: 523
  • Appeal, appeal, and appeal again!
Re: EOT One Week Happy But Singing The Blues
« Reply #123 on: November 19, 2015, 12:29:57 am »
Been thinking the same, Kim.  Debating on whether to be annoying and send her a PM.  OTOH, if someone wants to lay low and chill, I want to respect that. 

~ ~ ~ good vibes to you Marianne ~ ~ ~
F/53 yr
diagnosed 1995
Genotype 1a
ALT: 58 AST: 39 ALK: 105
Viral load 4,201,950 IU/ml
Fibroscan 6.5 (F1-F2) Fibrosure 0.36 (F1-F2)
Treatment-naive
After 3 denials, finally approved!
Harvoni 12 wks - start date 9/15/15
4 wk labs 10/14/15
ALT: 12 AST: 16 ALK: 85
HCV Not Detected!!!
8 wk labs 11/10/15
ALT: 13  AST: 15  ALK: 77
12 wk (EOT!) labs 12/8/15
ALT: 11 AST: 15 ALK: 78
HCV Not Detected!!!
10wk posttx labs 2/11/16
ALT: 22 AST: 17 ALK: 61
HCV Not Detected!! SVR10!!!
SVR10 (99.7% Cured!!!)

Offline slats1056

  • Member
  • Posts: 765
  • SVR to all and to all a good life!
Re: EOT One Week Happy But Singing The Blues
« Reply #124 on: November 27, 2015, 12:27:25 am »
  Hello everyone around the world in Heplandia!

 Have not posted in about two weeks. Been under the weather most of the time, lurking around and reading posts & replies mostly. Largely been feeling worse than during Tx. Headaches though bad are much less frequent. Still a lot of joint pain. Lower G.I. problems refuse to go away. Since My last visit with the Doc, We have come to the conclusion that I will start on a pro-biotic supplement and modify My food intake to try to balance the good gut bacteria in Me. Seems the Harvoni might be the cause of the lower G.I. distress I have been experiencing.
  Oh well, the battle continues. No one said it was going to be easy. Keep fighting the good fight and staying optimistic.
  Seven weeks and a couple of days post Tx. now. Had four or five days in the last couple of weeks where I felt really great. Then the Sx.'s return. Looking forward to more of those good days to get more frequent as the old body recuperates slowly.
 Which brings Me to My point. THANKSGIVING :) :) What do We have to give thanks for? Knocking out the virus surely. Harvoni. Actually Hep C as well. If not for the virus I would not have found Harvoni and in turn Lucinda's' blog, which led Me here to the Forums. Thankful for My Forum family which has been a source of solace, comfort,enlightenment,laughter, and a place to vent My quirky sense of rage and humor :P >:( :o ;)
 The last two days I have felt very good. Had the whole Family, kids, grandkids,dogs, and grandogs as well!LOL ;D ;D ;D. Lots of good food ( in moderation! No seconds! ::) ??? :o
 But most of all the chance of attaining a degree of normalcy and increased good health that was like winning the lottery. I personally had doubts about even making it to retirement age.
  So here is a toast to all of You out there around the world My cyber family and friends. To Your health and well being. May all achieve SVR and good health. To all that are not well, My thoughts and prayers are with You. Hope everyone can join in My Cyber Conga line around the globe. HAPPY THANKSGIVING TO EVERYONE!!

 ;) INSTEAD OF A SIGN THAT SAYS " DO NOT DISTURB" , I NEED ONE THAT SAYS "ALLREADY DISTURBED! PROCEED WITH CAUTION! :P ???

 P.S. HOPE MARIANNE AND DRUMMERMAN ARE DOING WELL AND ARE O.K.! HAVE NOT HEARD HIDE NOR HAIR FROM EITHER ONE OF YOU LATELY. PLEASE REFER TO PREVIOUS PARAGRAPH ;) :o ??? ::) :P :-X :-\ 8)

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

Offline Bree

  • Member
  • Posts: 576
  • "Today is a good day for a great day!"
Re: EOT One Week Happy But Singing The Blues
« Reply #125 on: November 27, 2015, 12:59:12 am »
Tommy, good to hear from you and glad you are o.k. even with the dips here and there.  Wishing you everything wonderful that life has to offer!  Love, Bree  8)
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 slats1056

  • Member
  • Posts: 765
  • SVR to all and to all a good life!
Re: EOT One Week Happy But Singing The Blues
« Reply #126 on: November 27, 2015, 01:10:10 am »
 Thank You Dear, the same to You. Waiting for that new Me feeling with anticipation. That is if that Gator doesn't get Me first :-\ ??? 8)
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

Offline Else

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  • Posts: 523
  • Appeal, appeal, and appeal again!
Re: EOT One Week Happy But Singing The Blues
« Reply #127 on: November 27, 2015, 02:11:11 am »
Happy Thanksgiving to Tommy and to all!
F/53 yr
diagnosed 1995
Genotype 1a
ALT: 58 AST: 39 ALK: 105
Viral load 4,201,950 IU/ml
Fibroscan 6.5 (F1-F2) Fibrosure 0.36 (F1-F2)
Treatment-naive
After 3 denials, finally approved!
Harvoni 12 wks - start date 9/15/15
4 wk labs 10/14/15
ALT: 12 AST: 16 ALK: 85
HCV Not Detected!!!
8 wk labs 11/10/15
ALT: 13  AST: 15  ALK: 77
12 wk (EOT!) labs 12/8/15
ALT: 11 AST: 15 ALK: 78
HCV Not Detected!!!
10wk posttx labs 2/11/16
ALT: 22 AST: 17 ALK: 61
HCV Not Detected!! SVR10!!!
SVR10 (99.7% Cured!!!)

Offline KimInTheForest

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  • Posts: 1,972
  • Believe in yourself
Re: EOT One Week Happy But Singing The Blues
« Reply #128 on: November 27, 2015, 02:28:39 am »
Happy Thanksgiving to you too Tommy! Any gator with that family dinner?

Those post-treatment problems just take time to sort themselves out. Interesting that so many of us experience some form or another of post-tx probs that are worse than anything during tx (much worse in my case). My post-tx probs are pretty much gone now, but it took me at least 10 weeks to get to that point.

The probiotic pathway sounds like a good plan for your lower GI problems. I eat yogurt with live culture daily - usually in a smoothie.

Happy Thanksgiving to all my forum friends and fellow travellers! We do indeed have much to be thankful about!

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 gnatcatcher

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  • Posts: 1,372
Re: EOT One Week Happy But Singing The Blues
« Reply #129 on: November 27, 2015, 02:42:07 am »
P.S. HOPE MARIANNE AND DRUMMERMAN ARE DOING WELL AND ARE O.K.! HAVE NOT HEARD HIDE NOR HAIR FROM EITHER ONE OF YOU LATELY. . . .
Tommy, it's always great to have one of your posts to read. But you've never actually gone AWOL -- it's more like you join the Trappists for a while, but you still check in to read posts. byebyeC, OTOH, hasn't checked posts since Nov. 2 and drummerman since Nov. 11.
   bbC was still posting upbeat messages on her last active day. I recently sent her a PM indicating she was missed and hoping she and her family are well -- no reply. She should be finishing Tx on 12/1.
   dm had received excellent EOT lab results but then stopped posting after editing this 10/24 post on 10/25: http://forums.hepmag.com/index.php?topic=3477.msg32487#msg32487
   We can still send them our well wishes, good vibes, etc. over the invisible network that existed long before the internet was a gleam in anyone's eye.
   Happy recovery from Thanksgiving dinner, everyone! -definitely thankful for all of you.
« Last Edit: November 27, 2015, 09:00:12 pm by gnatcatcher »
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 slats1056

  • Member
  • Posts: 765
  • SVR to all and to all a good life!
Re: EOT One Week Happy But Singing The Blues
« Reply #130 on: November 27, 2015, 11:49:44 am »
 Good Morning to All, another glorious day smelling the flowers instead of the roots down here in the deep south on the third coast. The Good ole' United States of Texas as it were! Heh Heh Heh 8). Even though it is black Friday and all, odd name Huh? I have a rare few days vacation that do not comprise of Hospitals, tests, or Dr. visits. I plan on doing absolutely nothing except eat the T-giving leftovers for the next FIVE beautiful days even if the weather turns sour! :P ;D
 Unless I can scrape up the money for diesel & provisions to head out west to My land for some star gazing and BIG ASS CAMP FIRE providing it ain't to dry! ;). Funds are a little tight right now , what with the Holidays and all. But, I plan on treating Myself come hell or high water regardless ;D ;D ;D.
   ELSE, Maybe binge watch The Walking Dead after reading Your post & seeling Your Avatar!
  KIM, No Ma'am, nothing exotic this Year. Just good ole' fashion traditional southern food and plenty of it. Thanfully!!! The Sx.'s abated to allow Me to enjoy a little of everything as well as being in a good mood & feeling pretty sociable with the whole family & a crap load of Dogs! Got bitched at for slipping treats to them as I was carving the Turkey and cutting the Ham. Hey, it was all the good parts ! No fat and skin. I figure they need to eat healthy too right. After all, most of them are allready a little pudgy because the Wife , Daughters , & Grand Daughters think they need a treat every time they go Pee!! :o :o :o.
  GNATTY, Maybe a temporary Diarhetic Vow of Silence? :-\ :-X :-[ :-[ :P ::) :o 8) 8) 8). I had a couple of PM's with Drummerman. He was a little under the weather like Myself, but, was lurking & reading as well. I figured I would respect his space & wait for a forum post or reply when He was ready & feeling up to it. Marianne OTOH, was having a very bad patch with I believe Riba sides as well as a trip to the Emergency room with a gall bladder attack as well. Kinda worried that she hasn't posted for a while.

FEEL THAT VIBRATION AND HUM?? THAT ISN'T AN EARTH QUAKE, JUST ME DOING THE CONGA SOLO AND STOMPING GOOD VIBES AROUND THE WORLD TO ALL YOU HAPPY HEPPERS OUT THERE. HOPE THAT ALL THAT ARE NOT FEELING WELL GET BETTER SOON AND JOIN MY WORLD WIDE CONGA LINE 8) 8) 8) 8) 8) 8)
   
 
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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