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Post Info TOPIC: 5 years post treatment


Guru

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RE: 5 years post treatment
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Hi Alan, what a nice surprise to see your post here!  smile

Five years post treatment is a milestone well worth celebrating, and I`m very pleased to hear how well you`re doing now, congratulations!!   The old triple `protease inhibitor` treatments, with incivek or victrelis, were a real ordeal for those of you you had to endure them, and incivek especially came with pretty brutal side effects, so it`s wonderful to hear how far you`ve come in those 5 years!   And of course you`re quite right, treatment options in the meantime have improved beyond our wildest expectations from those days!

I well remember being on the old Admin team with you, Steff and Heather, and you did a lot of good work here on the forum helping our members get through day by day, and we all appreciated your positive attitude and good humour.  Not many of us are still around from those days, and I must say I only find time to pop in occasionally nowadays (my life has got very busy, in a good way!).

Thanks for stopping by with such an encouraging post, I hope you keep in touch!  Wishing you good health and happiness! 

 

Hi also to Jeri!  Yes, I remember you!  Good to hear from you and congratulations on your continued SVR!! 

Interferon was (is) well known for the potential damage it could cause, but so many of us were happy and willing to inject ourselves weekly and go through those dreadful side effects, we had no other option if we wanted to get ourselves cured and reach SVR.  

I`m glad to hear you`re still being monitored carefully and I wish you all the best of luck with the kidney issue.  Do keep in touch and let us know how it goes...  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.

 

 



Guru

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Great thread to read. Good job Alan and Jeri. Keep well.

 

SF



__________________

65 yo, GT1A, , Cirrhosis, F-Scan F4 33.5, TX Naive Harvoni 12 wks

SOT 2/9/16 / ALT 187 AST 114 VL 2.3M.    POSTS

EOT 5/2/16  ALT 35/ AST/25  platlets 126 C/B VL UND

EOT +12 7/26/16  ALT 25 /AST 22/ ALP 83  platlets 129 C/B VL UND

EOT + 24 10/18/16 ALT 27/ AST 20/ ALP 71 platlets 153 C UND

 * SVR *



Senior Member

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I hope everything turns out for you GodsGrl. Being clear of the virus is a good thing.

Seeing Alans post sure brings back some memories. Good luck to both of you. 5 years WHOOT!!!!!



__________________

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!!!!



Guru

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Hi Alan,

HAPPY 5TH anniversary!!!

I am so glad you wrote, and to hear your news, and story.

It meant a lot to me to hear your warm wishes and encouragement. biggrin C.

 

Hi also to GodsGrl,

I missed responding to your prior post. 

I so appreciate hearing from the folks here who have been long cured!!

Please do let us know about your kidney scan. We have a had a couple (I think I recall) on this site who had blips turn up and that was all they were. Just blips. I trust all will be well. biggrin C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)

Tig


Admin

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Hi Alan,

Thanks for checking in, it's always nice to have our Alumni back! I enjoyed reading your message, it's important for people to hear about how much treatment has advanced. I also went through the Interferon triple but with Victrelis. I remember the hell those of you on Incivek went through. Those were some brutal side effects. I would do it again if I had to, glad I don't. These new drugs are way ahead of the curve where side effects are concerned. Very mild in most cases. 

The new treatments are obscenely expensive and insurance carriers can't cover the demand. So they really scrutinize each application and limit access to coverage based on strict guidelines. High fibrosis scores gain the fastest approvals. We keep advocating for improvements by getting the word out. We're starting to see some softening on the importation of Indian generics. A reliable supplier is key. The difference in cost of medication could be $1000 for 12 weeks of generics or up to $100K+ for the brand name. Big bucks! There's room for improvement on all of those brand name drug prices. I believe it's getting better and that's always a good thing.

Thanks again for dropping in! It's nice to still have you here after all these years. I believe you were a couple of years behind me, so we didn't get to talk much, if at all. Lots of brain fog back then, now I blame it on age. I do think HCV and the two rounds of Interferon protocols took their toll on me. I'm glad these new members don't have to experience those dark days.

Take care!



__________________

Tig

66 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 8+ years!

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Guru

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It was five years ago today that I took my first peg-interferon shot after a week of ribavirin and Incivek. I joined this forum four weeks later. What ensued was 36 weeks of life altering struggle, highs and lows, good days and bad, experiences I will never forget. Messengers delivering $27K worth of meds to my office each month in a styrofoam ice chest with cold packs inside (still have them). No energy, itchy skin, hair loss, no appetite, constant thirst, sleepless nights. But at SVR I knew I made the right choice. And with AST/ALT at 16 and 15 (started treatment at 152 and 144), and AFP tumor marker at 2 (down from 17.1), I can say I really am cured. The damage to my hair has never really healed, but I still have enough to get by. Skin has recovered, but nails are still very brittle and always broken. My semi-annual sonograms say my liver looks OK. No cancer, normal size, etc.

I read that the modern treatments are much friendlier, and also more reliable. This make me very happy. My nurse practitioner has moved to another practice, but I still keep up with her. She says her attention has shifted from monitoring the patients health and adjusting doses to trying to get approval from insurance companies. Sounds like the new drugs are pretty costly. But with no real side effects, and no damage to blood counts, it has to be better than November 2011. I am happy for all of you guys that have stepped up to rid yourselves of this dangerous pest. Best wishes to all of you.

 

Alan

 



-- Edited by news on Monday 21st of November 2016 02:36:24 PM

__________________

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!!



Moderator

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Hi Jeri,

Thanks for the update.  I take great comfort in hearing that you pioneers are still undetected.

Sorry to hear of the other issues.   I am glad you are staying on top of it.  Keep taking good care.

 

Cheddy



__________________

GT2a, VL 681,500, Less than F1, Treatment Naive

12 wks Sovaldi/Ribavirin, SOT 2/25/16, EOT 5/17/16

UND at 2,4,8 and 12 wks during treatment but ribavirin crazy.

ALT/AST normal EOT

SVR12 8/13/2016!!!!!!!!!  I WON!!

EOT 6 Months 11/12/2016  CURED

 

Tig


Admin

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Hi Jeri,

Welcome back! You were last here before I became a member, but I'm sure there are a few around that remember you. We still have a good number of "old timers" (myself included) contributing on a regular basis. I'm happy to hear you remain clear of the virus, that's what it's all about! Like you, I had the fun of two Interferon protocols and understand the lingering issues from them and it. Interferon was rough to say the least. My thyroid was trashed during treatment, but recovered and so far I'm having no issues. I have plenty of others, so escaping all of the problems I did not. I hope you find some relief. We do have a few folks that have mentioned kidney lesions, I don't think it's a common issue however. Whether it's HCV related I can't be sure, but this disease can and does cause a number of maladies, as do the medications sometimes, especially the stuff we were on. Good for you for staying on top of it!

Let us know what your upcoming tests indicate. That's good information to share. Good luck!



__________________

Tig

66 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 8+ years!

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Senior Member

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Hi! It's been about 4 years since I checked in! I'm still doing good. Considered cured. I have cirrhosis from my he can my thyroid is thrashed from interferon but I'm glad I cleared virus. I get a ultrasound every 6 months, last month they found lesions on my left kidney. I have a cat Svan scheduled. Has anyone else experienced sinular issues with the kidney? Thanks! Hope some of remember me!



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Geno Type 3A  Double TX 1-30-13 2 1/2 week labs VL >43 Lab error on 12 week VL no result

 

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