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Cinnamon Girl


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RE: anxious
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Good to hear from you again, Iris, thanks for stopping by with your update.

Thanks for your good wishes... Spring has Sprung here in the UK although it`s still quite chilly.

Wishing you all the best of luck, keep us posted.  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.

 

 
mallani


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Happy Easter, Iris.

Look after yourself. Cheers.



__________________

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
Iris Dragonfly


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Hey everyone, thought I would stop by and say Merry Spring to those in the northern hemi..it was quite lovely here albeit very brief, we are moving into summer way to quickly.

sun.gif

Anywho, I continue to have my foot in the door at USC, but they still aren't treating with the new drugs yet (unless you are an inpatient?), OR with any interferon either. Something about getting funding for a new program. So I wait. I had one appt. since this post, and for the most part the ultrasound and blood work is mostly good, have an appt. in May, so I'll know more then.

Miss you all,  Iris

 



__________________

in the silence of the woods, you will not be alone- Chief Seattle

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naļve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)
Cinnamon Girl


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Oh dear, Iris, sorry to hear that, how disappointing.  Is there nowhere else within travelling distance you can go for treatment?  I`m sure you must have explored all the options available to you but just thought I`d ask anyway.

Very sorry about your job too, and I wish you best of luck in finding new employment.  i know it`s hard to keep your chin up when things don`t go to plan but I know you have a strong spirit, so hang in there girl. 

Hope things start turning around for you soon!  xx

 

 



__________________

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.

 

 
Iris Dragonfly


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Hi you guys...just a quick update.

Had my March 10 appointment, no go. They aren't treating right now, (only those who are checking out) I find this rather amazing, USC, a school on the cutting edge, ...with the Keck school of Medicine right across the streetdisbelief.gif,... not treatingcry... ( well I don't know about Keck...just venting)... Although the intake Dr. said they were working on getting something in place, like a specialized clinic or something. They made an appointment for 6 more months, with a gang of blood work and and ultrasound prior. I asked about fibroscan, she said they didn't have it.

So, I guess I'm not anxious anymore, I looked at when I first made this post, Nov, 2012.  Huh... I am beginning to believe those on "Medical" are not in a good position for excellent care.

Signed, Iris on-the-shelf sleep.gif

 

on a side note, I was laid off my job of nearly 15 years last Saturdayhmm lack of workno

 



-- Edited by Iris Dragonfly on Friday 14th of March 2014 08:28:39 AM

__________________

in the silence of the woods, you will not be alone- Chief Seattle

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naļve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)
Cinnamon Girl


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Excellent news, Iris, at long last!!  You`ve had to wait a long time for this, and you must be so relieved that things are moving forward for you. Very pleased to hear this! 

Hope your root canal treatment is healing well, it`s not a very nice procedure, I`ve had it done too. 

Take care, and we`ll look forward to hearing how you get on in March.  All the best of luck...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.

 

 
mallani


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Hi Iris,

Great to hear from you. March 10th is 2 days short of my 71 st birthday, and I'll be having a big one, to make up for the one I missed this year (I still felt like death then). Good luck!!



__________________

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
Matt Chris


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Hello Iris 

Congrats on your confirmed date in March. Will you be on a trial or just the current standard treatment? Maybe you will be able to try Sofosprevir with Ribavirin if they are on the up to date protocol. 

Whateve the choice hoping the best for you, you have been very patient.

Matt



__________________

"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 
Biggyb


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Iris Dragonfly wrote:
 I guess they don't take kindly to folks that don't have insurance, I don't know...

 Congrat's Iris, the thing is by next March everyone in U.S. will have insurance due to Obama care. And if people don't have it, they will be fined. Might be a good plan, but we shall see.

Very good luck and keep us posted.



__________________

58 yo..Relapsed in 99 and again in 2004. Started triple therapy with Victrelis July 22,2012.  genotype 1a. week 8,12,16,24 VL Undetectable..E.O.T -- 6-22-2013,,,EOT + 24., UND. 

SVR !!!

 

~Bob~
Iris Dragonfly


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Hi there everyone!... just got my letter in the mail from USC, my appointment is March 10, 2104!!!...(8am, ugh sorry, I'm just not a morning personyawn)

wow... this has been the most incredibly long battle, but it looks like I may be in the threshold of help. I never thought it would take so long, but I really had to push hard, I guess they don't take kindly to folks that don't have insurance, I don't know...

I'll get excited when the date gets closer...right now I just had a root canal, so I'm gonna go lay down. Thanks to everyone who has chimed in on my craziness, you have been great (esp. Jill smile)

Many blessings, Iris



__________________

in the silence of the woods, you will not be alone- Chief Seattle

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naļve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)
JoAnneh


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Iris, I hope you will continue to keep tabs if at all
Possible. Keep reminding them you are available.
So good to hear from you.
Can't wait for more updates from you.
Thank you for all support you gave me!

__________________

JoAnne

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

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


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CHEESEbiggrin

Hi folks, just a quick update...                                                                                                                                                       I got a call from USC the other day, the girl was checking my address to assigning me a patient ID#jawdrop.gif,   (I guess there was some one else that had the same B-day) anyway...this is progress!,                                                                                                                                          ...funny, I look at this post from January...I was back to the UCLA clinic once (they made a follow-up so I wouldn't fall through the cracks) and it was a good thing, because that was in June, and yep ...I had fallen through the cracks, so they called USC and I guess that got the ball rolling again.

Thanks for listening...Iris



-- Edited by Iris Dragonfly on Saturday 27th of July 2013 11:11:42 PM

__________________

in the silence of the woods, you will not be alone- Chief Seattle

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naļve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)
Iris Dragonfly


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hehehe awe shucks Alan, Well no major news in the labs dept. 'bout the same as last time. Viral load in the 3,000,000. ..and the ALT. and AST. are just slightly elevated...as they always are. My AFP worries me the most. It has been out of the normal range for awhile. At 8.9. Got another report on my ultra sound, and THEY used the words" early cirrhosis",...I said is that like being a little bit pregnant??? Of course the answer is we would need a biopsy to know more. The final out come was they were going to refer me to USC for treatment! And now I wait to see when they want to see me...

I have an annual spiritual retreat at the end of March. This appt. will have miss that!

thanks for being there....blessings,  Iris



__________________

in the silence of the woods, you will not be alone- Chief Seattle

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naļve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)
news


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My nails are down to the quick and still no news. How are you doing? You have been supporting others for as long as I can remember. It's payback time. Let me know what's hap'nin'.



__________________

Geno 1A  Started Pegasys/Ribavirin/Incivek Nov. 20, 2011 .  Completed July 28, 2012 (36 weeks). For a treatment history, see:  https://jshare.johnshopkins.edu/xythoswfs/webview/_xy-9921874_1

SVR on January 14, 2013!!
Mary Jane


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Hey Iris.. a little slow in catching up.. nail bitting with ya.. hoping for the best.. peace.gif & love MJ



__________________

Do not go where the path may lead, go instead where there is no path and leave a trail.Ralph Waldo Emerson

1a - VL 22 million  F2- IL28B- CT / Inck-Riba- Peg triple therapy 9/15/12 UND 4/8/14  8 wks BT ..3/1/2013 done! 3wks Post UND
hrsetrdr


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Good luck Iris, let us know how it went.

 

This whole  hep C and treatment thing is a wild crazy thing in our lives, but like...what the heck can ya do? Just keep smilling- people won't know if yer happy or just plain crazy.   smile



__________________

"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

 

 
Iris Dragonfly


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welp, it was one of those, omg did I miss the appt? ALL week. So nervous. I go in today at 3...... (I need the nail biting smiley face!)

more later! Blessings, Iris



__________________

in the silence of the woods, you will not be alone- Chief Seattle

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naļve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)
JoAnneh


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Iris, Finally u have a date, Jan 10th! Get use to those blood throws! Will be waiting to hear your results. My gallbladder was removed two years Ago, I had terrible time after the surgery. It took over a year to get better. I regretted removing it. Xxoo

__________________

JoAnne

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

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


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Just an update...Had my ultra sound last Friday (she also looked at the place around my belly button that has been bothering me ever since my gall bladder was removed, but has been more painful in recent months. They also took 8 ginormous tubes of blood, (ha! I pulled #99 at the lab, they were on #50hmm ..that took awhile)  ...will return Jan. 10th for the results and where to go from there...

Am I getting there???sleep.gifBB, Iris



__________________

in the silence of the woods, you will not be alone- Chief Seattle

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naļve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)
JoAnneh


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Iris, Sounds like the hurry up and wait game!
Guess u got graced to start med after the Holiday
Season. U have waited long time and hopefully
Will know something solid after your next appointment.
So very appreciative of you and all u do for
The forum. U have helped blest a lot of people!
Love you, JoAnne

__________________

JoAnne

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

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


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iris, if us ragtag bunch of crazy people can get thru this, you sure can too. i'll be in your corner girl..

 

(and sad news did ya hear D14 was found dead the other day, awwww, he was my favourite little eagle. i was real sad to hear it. and i owe it to you to have had that awesome time watching those eagles grow up. thanks so much) :)

 

 



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kiwi. genotype 1. started pegasus and riba on 10 nov. VL 17.6 million. (4 weeks VL 1368)  week 15 UNDETECTED... :)
mallani


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Hi Iris, keep pluggin' away. You'll get there in the end. Cheers.



__________________

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
Shep


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Iris--you are taking a brave, bold step. Will always be here for you!

__________________

Diagnosed 1996 genotype 1b VL alot tx starting 12/23/11 Victrelis UND week 8!!! 28 weeks of tx

Completed tx 7/6/12--still UND!!!!
Iris Dragonfly


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I could make this long story even longer, but I won't

Had my appt today. Wrong dept. (even though they deal with HCV and HIV) and they had mixed me up with another patient all they way back at the clinic... But... the Dr. I saw said,  "I don't want you to have wasted your trip" so he ordered a slew of blood tests and an ultra sound, and said he will try to rout me in the right direction. Also...they don't treat at this branch of UCLA anyway. I would have to go downtown or to Harbor.

I'm supposed to return in 7weeks...we'll seeblankstare ... ( I might change my name to Iris Waitingfly)

Iris



__________________

in the silence of the woods, you will not be alone- Chief Seattle

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naļve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)
davesf


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Don't have anything pertinent, constructive, or witty to add, but glad you are moving in a good

direction Iris.  Just wanted to give some positive thoughts back to an amazing supportive friend on this board.  smilesmile



-- Edited by davesf on Friday 16th of November 2012 05:35:47 AM

__________________

All Done Poisoning the Dragon that Used to Poison Me

Genotype 1b  Incivek Combo
Cinnamon Girl


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That`s great news, Iris!  Try not to worry too much, just get yourself as well prepared as possible by making a list of questions you want to ask.  I came across this article from the Hep C Trust which you might find helpful in getting your thoughts organised in advance...

http://www.hepctrust.org.uk/Living+with+Hep+C/Doctors+and+Consultants/Getting+the+most+from+Consultants

Best of luck to you, remember this a positive step in the right direction!  smile  Hugs, Jill xx

 



__________________

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.

 

 
kiwi


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that is good news mate. i hear ya on being anxious. im still waiting for my after treatment results on tuesday. hmm 

 



__________________

kiwi. genotype 1. started pegasus and riba on 10 nov. VL 17.6 million. (4 weeks VL 1368)  week 15 UNDETECTED... :)
news


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Go for it, Iris. I wish I could be a fly on the wall when you interview the doctors. You know as much about the practical side of this treatment as they do. You should stay open minded, but it would be hard to keep from looking smug if they try to blow smoke. Good luck, and try to keep us posted.

__________________

Geno 1A  Started Pegasys/Ribavirin/Incivek Nov. 20, 2011 .  Completed July 28, 2012 (36 weeks). For a treatment history, see:  https://jshare.johnshopkins.edu/xythoswfs/webview/_xy-9921874_1

SVR on January 14, 2013!!
JoAnneh


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Happy for you Iris! Keep is posted

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JoAnne

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

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


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Well, I got a call at work today from my Dr.s nurse. She wanted to tell me I finally have an apt. at the hospitals infectious diseases dept., on the 15th. Wow....I think I have waited for about 2 years for this. Now i'm a little freaked out and incredibly anxious. Iris



__________________

in the silence of the woods, you will not be alone- Chief Seattle

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naļve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)
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