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Post Info TOPIC: New and Afraid.....am i ready?
Cinnamon Girl


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New and Afraid.....am i ready?
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Hi Sara, welcome from me too.  I can understand you not wanting to have a biopsy done, although it can be very useful for assessing the current health of your liver.  You would then know whether you had time to wait for the new drugs to be available or not, although at your age it would be most unlikely that much damage, if any, had occurred.  If you are planning to go ahead and start triple therapy treatment soon then there wouldn`t really be much advantage in having one done at this point.

Wishing you all the best, keep us updated!  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.

 

 
Tig


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Sarabelle wrote:

Hi there

My genotype is 1a. VL 3,900,000 AST 52 ALT 100. Not sure about the CBC test. What does that test for? No biopsy...opted out. Fetal Protein Tumor Marker 2.7. 

 

Sarah

 Thanks for that information. You may be asked for that information often, so I suggest you do what many of us have done to simplify sharing it with others. If you look at the bottom of my post, you'll see some text in yellow with all of my current data. That section is part of your profile information and is called your "signature". Once you list info in that section it will be posted with each message you leave for others. When things change you go back to your profile and update it. Makes it real convenient. Here is a link to a website that will explain what a CBC is and what it tells about your health and your reaction to treatment. There is also the Search function at the top of our page. It will direct you to info here on our website. Let us know if you have any other questions.

http://labtestsonline.org/understanding/analytes/cbc/tab/test



__________________

Tig

67yo 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!

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Kellie


Senior Member

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Hi Sarabelle and welcome, you've found a great place for support and info. Good luck to you as you start treatment.



__________________

HCV 1A 1980. Dual tx 2003 -UND at wk 11-discontinued due to severe depression

Started Triple 4/16/13 for 24 weeks

UND wk 4,6,8,12,17 & 24

E.O.T. 9/29/13

EOT + 12 weeks=SVR, and EOT +26 weeks=Cured!
Sarabelle


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Hi there

My genotype is 1a. VL 3,900,000 AST 52 ALT 100. Not sure about the CBC test. What does that test for? No biopsy...opted out. Fetal Protein Tumor Marker 2.7. 

 

Sarah



__________________

GT - 1a, VL 3,900,000. 30 years old AST 28. , ALT 36 had this for approx 10  - 12 years so far. Time to kick it! started olysio/sovaldi off label 5/6/14. 4 wk labs ast 16 alt 14 . hCV Undetected!! eOT 7/29/14. Labs UND ALT 11 AST 14
Tig


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Hi, when you have a chance is it possible to tell us a little bit more about your condition? When you list your biopsy results, genotype, AST, ALT and CBC test results, we can answer your questions much easier and it provides the experienced members here with information that people just getting started don't think to provide. The help and information that has been given to me here has been more helpful than most of my doctors offices combined!! You've come to the right place for help and friendship. Welcome to the group!



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Tig

67yo 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!

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Sarabelle


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I have decided that I've never backed down from a fight....so why wait now. I want to just do this, be done with the thinking about it and move on. I changed my mind about invicek....I was considering not doing treatment because of the side effects. Victrelis is going to be my drug of choice....lower rates of cure or not, i dont think i would fare well with rash, anal issues (gross) and etc. im changing my course before starting. I still need my vaccines for A and B as well as my eye exam. I keep getting calls from the doctors office.....which I cant answer while Im at work....ugh! How will I fit this into my life.....IDK....I just will. I plan on starting within two weeks.....here we go.



__________________

GT - 1a, VL 3,900,000. 30 years old AST 28. , ALT 36 had this for approx 10  - 12 years so far. Time to kick it! started olysio/sovaldi off label 5/6/14. 4 wk labs ast 16 alt 14 . hCV Undetected!! eOT 7/29/14. Labs UND ALT 11 AST 14
Loopy Lisa


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Hiya Sarabelle,

I am one of the people that opted to wait. As the new drugs are here in the near future I don't want to go through 6 months of inteferon and Ribaviren when they also have a chance of causing infertility (especially when wanting to get pregnant after.)

It is a personal choice, but waiting really is the easier route.  I cannot imagine going through a year of interferon unless it was because my health was in danger.

Good luck with what you decide, there is no right or wrong... :D

 



__________________

Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 
garfield


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Hi Sarabelle,

                   I got my diagnose in january 2012. My docs advised me, no therapy with Incivik, adverse effects are too high.

I decided to participate in a study from abbvie. It was an easy walk. Now, few months for approval of Sofosbuvir I wouldn't

start with Incivik. But final decision you have to make with your doc.

 

best wishes



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bmhartwd


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Hi Sarahbelle, I know exactly how you feel!! I am 6 days into triple therapy with Incivik. I'm 38 with Geno 1a and decided to go for it!!! I will take my 2nd shot of Interferon on Saturday. The hardest part so far is eating so much fat to take your medicine and drinking Gallons of water. Just a little nausea every now and then and burning sensation on my scalp. I am a sales director for a Nissan dealership and I don't have the option to not work. We can do this and get thru it successful. I hope this info helps ease your anxiety!! Good luck on your journey!!! Brian

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Brian
Kellie


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I am on week 20 of the triple with Incivik. The treatment for the first 16 weeks was pretty bad for me. I had the severe rash with the Incivik portion, along with thrush and being generally uncomfortable.  After the Incivik, I came down with the severe depression that comes along with the interferon. My hair is about 80% gone. I'm feeling tons better now, and was ready to go back to work last week. I work for the local government. Same b.s. political stuff.

There is no way I could've worked with the side effects. My critical thinking is still way off. But everybody is different with the sx. Some folks just glide through it, some don't. I still have foggy thinking, but my energy is coming back.

It sounds like you have a lot of responsibilities and are the major breadwinner. It's a big chunk to deal with, this treatment, especially if you have to keep it to yourself and can't take time off.  I could've waited if I knew my health insurance would still be in force, but I didn't. So I took the plunge.

I tend to agree with Mallani and Tig about waiting, but in the end, it should be you and your healthcare provider making that decision together. I wish you all good things and a bright SVR future.



__________________

HCV 1A 1980. Dual tx 2003 -UND at wk 11-discontinued due to severe depression

Started Triple 4/16/13 for 24 weeks

UND wk 4,6,8,12,17 & 24

E.O.T. 9/29/13

EOT + 12 weeks=SVR, and EOT +26 weeks=Cured!
Tig


Admin

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I agree, if your liver disease is mild you should have ample time to wait for the new treatments. They promise short term treatment times and very high success rates, with almost no side effects. If your doctor feels you have time to wait and you can delay your pregnancy for two or three years, I would wait. The side effects from triple therapy can be tolerable or terrible, but they will be part of your experiences and can last from 24 to 48 weeks. I would base any decision on your actual liver health and your doctor's advice. Good luck!



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Tig

67yo 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!

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Sarabelle


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Thank you for responding....wow its nice to have some support!
My AST was 52. ALT is 100..... Both were higher than the reference ranges...ugh. Alpha fetal protein tumor marker 2.7 not sure what that is all about. This is by far the most difficult decision, I had some more labs recently and still have the eye exam before starting treatment....and yes, after this research im thinking of backing out...what if these newer treatments are available in the u.s. soon....i can do 12 weeks....heck maybe even 24....but still...incivek scares the crap out of me. It appears to be rough on everyone!

__________________

GT - 1a, VL 3,900,000. 30 years old AST 28. , ALT 36 had this for approx 10  - 12 years so far. Time to kick it! started olysio/sovaldi off label 5/6/14. 4 wk labs ast 16 alt 14 . hCV Undetected!! eOT 7/29/14. Labs UND ALT 11 AST 14
mallani


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Hi Sarabelle,

Welcome.  I can understand your confusion and apprehension, but HepC can be eliminated, particularly at your age.  Don't worry about the Viral Load.   It goes up and down like a yo-yo, and is really not that significant.   Do you know your AST and ALT ( liver enzymes)?  At your age you are unlikely to have significant liver damage, and can probably afford to wait for the new drugs, that will be available in the next 1-2 years.   However, if you want treatment now, the triple therapy with Incivek has a high success rate. You would almost certainly only do the 24 week course, and may not have any serious side effects.  Side effects are usually worse in older patients with liver damage.  However, there is no gaurantee. Up to 50% of Incivek patients get a rash, but mostly it can be controlled.  Hair loss is worse in patients doing 48 weeks, and can be a nuisance, that's all.  It grows back quickly.

Don't be afraid. Many of our Members have worked right through their Incivek treatment.  You just need to discuss the options with your doctor.  If I was you, I'd wait for the new drugs. 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
Sarabelle


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Hello. I have hepc 1a. Recently decided to go in for testing again to help me decide if I should do the treatment now. Ten years ago I was 757,000 iu/ml. Today I am 3,900,000 iu/ml so clearly the virus has increased. I am 30 years old, just purchased my first home and want to have a baby so badly. I decided now might be the time to do it because I want to have a child and the possibility of giving hepc to my baby worries me.

So, the treatment will be triple therapy with invicik. I am starting to change my mind after reading all of the side effects. I have a demanding job.....sigh. I am the one who is financially responsible for most things in my marriage...so time off is out of the question. I will not be able to tell work about my treatment as i work in a corporate realm of political b.s.

Im afraid.....so afraid that I feel like screaming or crying...yet I dont. I want to be strong....yet inside i am very unsure of this. A year of hell seems almost not worth it. What is this rash like that seems to be quite frequent? What does it look like and where do you get it?

The hair loss....i have fine hair as it is. Im afraid i will be down to two strands. The depression....im afraid of this. I feel like i have a temper as it is....i cant afford to lose it or cry at work. Anxiety and insomnia.....oh gosh, thats all i need.

So what about these new treatments....that may offer shorter interfuron time....should i wait and see? Is anyone else considering waiting it out for a bit. Any advice would be greatly appreciated....no

__________________

GT - 1a, VL 3,900,000. 30 years old AST 28. , ALT 36 had this for approx 10  - 12 years so far. Time to kick it! started olysio/sovaldi off label 5/6/14. 4 wk labs ast 16 alt 14 . hCV Undetected!! eOT 7/29/14. Labs UND ALT 11 AST 14
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