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Post Info TOPIC: Checking in
globetrotter


Senior Member

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Posts: 111
Date:
RE: Checking in
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You gave it your best shot girl and for that you should be proud. 

The mental effects are tough and at week 28/48 I am slowly going crazy, and have started AD's for the first time in my life and have to work hard at not throwing a double six which is partly down to frustration as well. 

Enjoy that holiday and appreciate all that life has to offer biggrin I was cycling 21 miles a day pre treatment, now get out of breath and feel a massive weary switching the DVD player on to sit and watch the yoga DVD biggrinbiggrin.

 



__________________

51 year old Geno type 1A,  possibly 30 years HCV. HBV detected but currently dormant. viral load over 1,000,000. Started triple with Telaprevir Nov 2013 for 48 weeks.

VL week 4 -179,

VL week 12 -50. 

VL WEEK 24 -UND
Loopy Lisa


Guru

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Thanks ladies,

Indeed Joanneh, it was not the physical aspect that made me pull off, it was the mental health aspect. I couldn't function anymore and I need to be able to function in daily life. Now of course I don't have any issues so it is rather a frustrating incidence. I won't let it put me off tying again, I know i just need stronger armour during the battle field! I love your outlook in life, you seem so at peace with life and yourself. :) x

Gracie,  it is lovely to hear you are doing much better, I know how you felt after failing treatment, to get so far and to find it wasn't working is one of those things that grates when you really want something so much! I know the next set of treatment we will be armed and ready to kill this pesky set off viruses! We lost the battle but not the war!

I'm glad I wasn't diagnosed 20 years back when i was probably infected, I think at 20 being told go live my life and nothing we can do would have been a lot to cope with so young. We still have bright futures, just patience is now the key!

I too am now preparing to get back in the fitness saddle, I just ordered the 90 day Gillian Micheal's 90 day workout to get in total shape. Damn Tel sell lol! 

We are looking at Greece, I love the sound of Hawaii though, lucky gal :D

Hugs back at you all, summer is nearly here and we are able to have lots of sun :D x

 

 

 



-- Edited by Loopy Lisa on Sunday 25th of May 2014 10:51:16 AM

__________________

Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 
Gracie


Guru

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Posts: 618
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Hi Lisa,

So glad your back. Tx made me a little crazy too. And I could feel the difference in my liver when it was working, and now that I'm off treatment the achy liver feeling is back. But since I stopped treatment my mind is clear, my energy is back, I'm running again, and going on a trip to Hawaii in August. 

I was sad and upset when I had to stop treatment, but the more I think about it, the less upset I get as the newest treatments sound so amazingly easy compared to the old ones. And we are so very lucky that we have these even in the pipeline. The first time I failed treatment 11 years ago, the doctor told me to go and "live my life". I felt so hopeless and sad. This time I feel impatient, but am full of hope.

I'm doing everything I can to keep busy and to experience as much of this lovely life doing things I love while I'm healthy and able to. Our future is bright chum, and we shall both see SVR before we know it!

Keep in touch! 

Hugs from Canada eh...



__________________
  1. Gracie

1A. Previously treated non responder Rebetron in 2000 And Incevik in 2014 with a breakthrough at week 12. Fibroscan 15.5. VL 6,000,000. Finished 24 weeks harvoni on Dec. 19, 2015. SVR. Latest Fibroscan 8.8.
JoAnneh


Guru

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Lisa,  let your doctor know what you need
as more as antidepressant next time! My

I live every day to the fullest!
You are going to beat this disease soon.
2 friends of mine quit due to it made them sudiicial.
One got on medicine to help and took tx again.
He finished. The other friend never has gotten
Courage to try again



-- Edited by JoAnneh on Sunday 25th of May 2014 05:02:24 AM

__________________

JoAnne

Genotype 1a, Triple therapy w/Invicek started May 19, 2012

DET 4 wk. UND 2,6,12,24 48 treatment. Achieved SVR 2013!
Loopy Lisa


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Thank you Joanneh, it does make me feel easier knowing I am not the only one. I had no real physical affects from interferon like the flu, apart from being spaced out, like I was high on drugs I suppose, weird and hyper. But when the panic monster hit I couldn't control anything and I felt helpless. If i had know it would be that bad I would have taken medicines. I did complain to the nurse, they said oh its just a side affect, no help at all. I have no problem with the Doctor, but the nursing staff were pretty bad to be honest. 

I'm sorry you went through such hardship and still have to check all the time. Seems a bit cruel this disease at times! I hope the test gives you peace of mind so you can carry on until the next checks. I guess the only thing we can do in any situation is to try and not worry and enjoy life as much as possible. Nice to hear from you x

 



__________________

Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 
Loopy Lisa


Guru

Status: Offline
Posts: 895
Date:
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Thanks Mallani,

It is predicted end of this year, but will probably be next year for Solvaldi. Daclasvir and other meds will probably be another 2 years. But I will let you know as soon as I do. I have heard nothing off the other combinations, everything is aimed currently at the American market. I know compassionate use is approved for those in danger through the drugs companies, but the rest of us have to just get on with it. Happy for the US, but it sucks for us in Europe.



__________________

Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 
JoAnneh


Guru

Status: Offline
Posts: 1077
Date:
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Lisa,
I know several people who had to quit
For the same reason. I should have
Quit the 1st time I was on tx as it made me
Delusional at times. Poisoned my mind and
I couldn't sleep Either. I ended up fainting after getting
Out of the bath tub, went to ER room

and was told I was the 2nd person that night

with same symptoms, both of us on Hep C med.

I was crumbling!
Love your description that's PERFECT!
Doctor prescribed 25 mg of
Seroquel to sleep. I took 1/2 pill. It took few
Days to work and put me on WellbutriN.
That was in 2001. I was crazy the whole tx but

I started sleeping at night. 

I was SO SCARED to try treatment again!
After 9 years I had gall bladder removed
And was told my liver was hard, I had chirosis!
Fortunately my liver is working normally but
It will never be well. I go every 6 months
For rest of my life to get a liver sonogram to
Check for pre-cancer.
 I don't think about it till time for my appointment which is Tuesday!
Here is what helped me mentally/emotionally
While enduring 48 weeks of Invicek along with
RIBA and interferon.
I was able to slow down my lifestyle. My children
were grown, I sold company I owned, I found
A loving life group and new church for support.
I was able to tell people and be a spokes person
For Hep C. I started on lexapro and took seroquel
To sleep 1/2 of 25mg pill).
These changes made the difference.
I used the down time to grow closer to God
And this forum was HUGE gift to me.
I will be here for you when you try again.
I stayed on lexapro 6 months post tx.
Best wishes. Please don't wait too long! Xxoo



-- Edited by JoAnneh on Sunday 25th of May 2014 01:54:37 AM

__________________

JoAnne

Genotype 1a, Triple therapy w/Invicek started May 19, 2012

DET 4 wk. UND 2,6,12,24 48 treatment. Achieved SVR 2013!
mallani


Guru

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Hi Loopy,

Good to hear from you! Sorry about the Peg/Riba Sx. I hope you stay in touch as I am interested in the availability of Sovaldi in countries like the Netherlands. We have no hope of getting it here for at least 3 years. At least you can afford to wait, with your biopsy results.  Cheers-happy Summer.



__________________

Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
Loopy Lisa


Guru

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Thanks Tig and hrsetrdr,

 

Its good to be back here again. Liver wise I felt great on treatment. Today I felt a little pressure on my rib cage, so I know the beast hasn't gone anywhere. I have to admit, A lot of things improved on treatment, it does prove how much Hep C does invade our bodies. I am glad to feel normal again, and next time I will give it a hard fight - needle free :D

Nice to see you both still here :D x



__________________

Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 
hrsetrdr


Guru

Status: Offline
Posts: 940
Date:
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Hi Lisa,

I'm sorry that you had to stop tx, but when the drugs destroy part of you that you need- you just  gotta stop.

 

You may STILL  achieve UND -> SVR, I had to quit at week 16(of 28) but remained UND and eventually SVR.(see link in my sig).

Best wishes for your recovery from tx, and ultimately for SVR.



__________________

"hrsetrdr"=Tim

Treatment halted on Aug.8,2012 due to vision problem.  6 month post tx labs

Aug.2013 SVR

Be strong when you are weak, brave when you are scared, and humble when you are victorious.
- Unknown

 

 
Tig


Admin

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Posts: 9284
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Hi Lisa,

I'm so glad to hear from you, even though the news includes some unfortunate results, bummer. I remember how terrible those side effects were the first time I was on treatment. Fortunately they were able to stop the problems with medication and then this time, I started them before I started treatment. That made all the difference. So you can't blame yourself for this delay, it's those damn drugs and hopefully you will be able to avoid that combination altogether next time. I'm just glad to know that you're okay and getting back to your old self. Now you can concentrate on recovering and planning on your next assault on the beast. Take your time, get this behind you and the next attempt will be the last. I look forward to seeing you back here on the forum, you have always been a great friend to us all. As unpleasant as this was for you, your experiences will be very helpful for others if you feel like sharing the information. It's also good for you to talk about it if you're up for it. Whatever you decide, I'm just glad to hear from you and know you're okay! Hang in there girlfriend, we love ya!!!

Tig



__________________

Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

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Loopy Lisa


Guru

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Hi Jill, thank you, it is nice to hear from you. thanks for all the support you gave. x

Eddie, I am so elated you are through it, I'm sorry it was so tough at the end! You really deserve the SVR awaiting you. You have been a great support to many of us and a giggle too. 

I hope we can celebrate the end of old TX sooner than later, it is different for everyone, but I prefer the easier walk in the park. Cudos to all that have walked that path and succeeded, I give you my salute!



__________________

Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 
Scruffy


Guru

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Posts: 500
Date:
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@Lisa

I finished treatment. The last 12 weeks were pretty bad. I was dead in the water for 11 of them but for week 48 I was like ok bring it on!!!!!

Waiting for the newer tx was probably a good decision for you. Now go out and have some fun. You deserve it!



__________________

Geno 1a null responder 2004 inter/riba   finished incivek,peg/riba 48 weeks May 17th 2014. undetect weeks 4-12-32.  EOT+7 undetect. EOT+24 SVR!!!!! EOT+!YEAR SVR!!!!
Cinnamon Girl


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Hi Lisa, thanks for checking in, we were worried about you!!

Really sorry about the panic attacks, I know myself how scary and debilitating they can be, and it`s not your fault you had to stop treatment.  Those drugs are hard going and the mental side effects can be brutal, so I`m sure you made a sensible decision to put it on hold until something more suitable comes along. 

Great idea to plan a family holiday and look to the future, time moves along and too much stress and worry isn`t good for you.

Enjoy your life and forget about Hep C for a while..your time will come! 

Good to hear from you, and do keep in touch!  smile

 



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
Loopy Lisa


Guru

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Thanks Wayne and Scruffy,

 

I hadn't had panic attacks for years so it caught me off guard, I'm back to OK again now so it must have been the drugs. I do feel depressed a little that the new drugs are taking so long and lack of clinical trials in Europe. But everything is temporary until I can get my hands on those new drugs. 

I'm looking at holiday options now for the family, time to do something fun instead of all the worry and fret. We decided as well some life changing thing like selling the house and moving, we realize that life is too short to wait for tomorrow always. 

Time out can really give you a better perspective on things.

How are you guys?

 

 

 



__________________

Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 
Scruffy


Guru

Status: Offline
Posts: 500
Date:
Permalink  
 

Well its about time we heard from you Lisa!!!

Sorry to hear you had to stop treatment. With all the new drugs I'm sure you will get tx with no or very little sx's.  Maybe with no inter/ribavirin. From experience I think the ribavirin just exaggerates any triggers that would cause the panic attack just like things can trigger the rage effect. Well its good to hear from you regardless. 

Best wishes for you.



__________________

Geno 1a null responder 2004 inter/riba   finished incivek,peg/riba 48 weeks May 17th 2014. undetect weeks 4-12-32.  EOT+7 undetect. EOT+24 SVR!!!!! EOT+!YEAR SVR!!!!
OldenSlow


Senior Member

Status: Offline
Posts: 380
Date:
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There you are! Good to hear from you, Lisa. ;) With you being in such lousy shape last time we heard from you, 'twas a bit worrisome. Just happy to hear you're ok. And don't blame yourself for anything or dwell on disappointment. They're nasty drugs. Sounds like you can afford to wait for better options. It will come around for you and the next time will be the charm. A much more tolerable charm, at that.

Be well  wink

wayne



__________________

66 y/o male - Geno 1b - F4 cirrhotic dx 2001 - 16 wk treatment w/ Sovaldi/Olysio/Riba - Und @ EOT+24 SVR

 
Loopy Lisa


Guru

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Posts: 895
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Hi everyone,

 

Just to let you know I'm ok. 

I battled on a little longer with treatment but the panic attacks wiped the ground with me and I had to quit. This was the only side effect that I couldn't cope with. I will prepare better next time around with some medications to combat it. I am disappointed in myself but I was beginning to crumble with the fear feeling. I am proud of everyone on treatment and battling through. I will try again though when sofosbuvir arrives and no needles!!

 

I hope you are all well Hep C friends!



__________________

Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 
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