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Post Info TOPIC: Recently diagnosed but hopeful


Guru

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RE: Recently diagnosed but hopeful
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here in the western usa it can take cpl months to get in.. the docs are busy. but calling back to see if there is a cancelation is a good idea too.



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Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=L.July=norm liverpanel.*13weeks=UND * 6 months =UND: CLUB ZERO



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Excellent advice, Canuck! How thoughtful and thorough.  

Annie, I would touch bases with the liver specialist and scheduler to make sure you don''t slip through the cracks.  They should also be able to tell you how far out they are booked. It helps if they know you're ready to roll.  If someone cancels, they are aware of you. 

Waiting can be hard, but we just face each step at a time and hang in there.

Your attitude is good, Annie, especially being proactive enough to set aside the 12 weeks to focus on your care. We could all give ourselves a better break sometimes.  

 



__________________

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

 



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Thanks, everyone!

The health system here in Ontario seems to have a big awareness of Hep C, which is good.  The article I posted from a local newspaper made me feel a little more comfortable with the treatment but I usually don't react well to meds.  Still trying to be positive but I'm going to set aside the 12 weeks to just take care of me and get rid of this.  Our local health unit is advising anyone born between 1945 and 1965 to be tested because so many are getting diagnosed in routine bloodwork or, like me, when trying to donate blood.

It's been two weeks since my referral to the liver specialist and still don't have an appointment date.  That's normal around here but I would just like to get going on this.  He appears to be the doctor who has been taking the lead on treatments so he's probably a busy guy.  

I will post any updates to get your input and confirm the VL.

 

 



__________________

age 65
gender F
genotype 2
fibrosis stage f0
HCV diagnosis date Oct/18
SOT May 10, 2019
HCV medication Epclusa
HCV lab results (viral load 2,950,000, AST unknown, ALT 10
No prior treatment



Guru

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Annie,

So, that is clearer for us now - diagnosed very recently (just this last Oct 2018) but you have actually had the hep c some 40 years since a transfusion in 1974.

You have not had much time to learn all the ins and outs about having HCV, nor about the good new treatments, nor about all that is done in the workup/preparation for treatment.

NO WONDER you (and all lot of us here have also) found it confusing. There is a lot of information to process in short order, sometimes with very little other helpful experience or background to assist you. Some people have had so many health issues at least they are somewhat familiar with lab "language".

Not to worry about things you run into that are not clear, they WILL become clear as you go along, your doc will make sure you understand and we here will all try to help where we can too.

There are MANY of us who did not have a clue we had been packing HCV around for many, many decades - you are certainly not alone there in that category - and, you have already gleaned correctly that sometimes there are few and subtle symptoms, fatigue and some of the other things you referred to depression and/or brain "fog" are all suspect HCV symptoms, and there are many more that can be had/experienced. Everyone is different, if we are lucky, we might not have suffered much with bad symptoms while we were unknowingly packing this virus around, and again if we are lucky (after packing HCV around for a long time) we might accrue liver damage very slowly. Lack of symptoms and little liver damage are good things! Kind of a double-edged sword though, for if HCV was not quite so "silent" in us, as far as symptoms and obvious damage, we might get diagnosed and cured a little sooner!

Just concentrate now on getting the required assessments and tests completed to your hep docs satisfaction.

Like I said before - ask for a fibroscan and an abdominal ultrasound (if you have not had these done recently).

Good they determined you do not have Hep A/B or HIV - they would standardly test you for all that quite routinely - what I meant before in my first reply to you was - that it should be confirmed that you currently own "sufficient immunity levels" to hep A/B, ask if you do, or, whether you may need some hep A/B immunization. Same for flu shots (regular or pneumococcal) ask if you need any of those too

The new DAA's are so effective nowadays, treatments are so short now in comparison to the past, high viral loads do not mean as much nowadays as they might have in the old days. Now, generally, a higher load is anything over 6 million - and a high load does not really make much difference to treatment (aside from maybe not being able to get a short 8 week course of Harvoni) if your load is over 6 million.

We have had quite a few here get epclusa, and all have been very well-cured!

Sorry to hear about your house flood damage/repairs, that would be hard anytime! I am glad you are retired too! You can try to spend and conserve your attentions and energies as best you can without having to deal with a "job" job at the same time as well, whist additionally prepping for treatment and doing treatment.

I certainly was glad I was a retired person when i found out I had HCV and then went through the process of getting ready for treatment and then through treatment. Although, we have also had quite a few around here who worked right through everything.

I consider taking care of me a fulltime job now, heehee! 

If you want, you can always just post actual labs (but with private info blacked out) and we can help you interpret the language/results.

Stay calm, be methodical and thorough, you may fear sides or that it may all just be too overwhelming, but you will likely end up seeing it will be easier than you may be imagining, step by step you will get there, cured and free of this harming virus.  : ) C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 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


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Thanks Lam, I haven’t seen them designate the exponent on a viral load report like that. My math skills are getting about as cloudy as my cataracts! 



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Tig

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

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Reads like the lab noted HCV viral load in exponential format so that would be 2.95 times 1,000,000 (E6) or 2,950,000 IU/ml.



__________________

Male, 66, Dx 1990, GT 2a/2c. Pre-tx VL 11,500,000, ALT 10, AST 18, F3, 12.4 kPa. Rx: 12 weeks Epclusa, SOT 3/8/18, EOT 5/30/18. Week 2 VL 50, ALT 12, AST 21. Week 10 VL not detected, ALT 12, AST 18. EOT + 12 weeks: VL not detected, ALT 11, AST 19. EOT + 24 weeks VL not detected, ALT 9, AST 24.

Tig


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The viral load numbers you provided don’t make sense. If the 2.95 stands for 2.95 Million copies, then the E6 is an unknown reference. Viral loads are referenced using different figures. The first is listed in IU/ml (International Units/milliliter), you will also see the EQ/ml (Equivalents/ml), Meq/ml (Mega equivalents/ml) and Log (Logarthmic format). They all mean the same thing and amount to how many viral particles exist per milliliter of blood. Most common reference we see now is IU/ml. There are conversion equations for all of it. Our concentration is changing your pre treatment number to ZERO!

Viral Load Chart



__________________

Tig

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

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I will get the lab results from my doctor.  The secretary called and she said something about VL 2.95+E6?  Not sure if that means anything to anyone here.  I'll confirm next week and post here.



__________________

age 65
gender F
genotype 2
fibrosis stage f0
HCV diagnosis date Oct/18
SOT May 10, 2019
HCV medication Epclusa
HCV lab results (viral load 2,950,000, AST unknown, ALT 10
No prior treatment



Senior Member

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Welcome Annie,I too got hep c from a transfusion in 1979.I wasn't diagnosed until 2000.Fatigue was my primary symptom .Back then I was classified as genotype 2 but testing last August determined I was 1b/2.I waited 18 years for the new DAA's to start treatment.I just finished 12 weeks on Mavyret and was undetected at 6 and 12 weeks.You really need to get a copy of your bloodwork from your Dr. V/L not low is pretty vague.The really good news is your diagnosis could not have come at a better time.The new DAA's have an amazing cure rate.You're on your way to a hep c life.



__________________

62 yo male GT 1b/2 ALT 60 AST 51 V/L 985,000 Fibro A2 F 3/4 began 12 wks Mavyret 9/13/2018

6 wk labs ALT 12 AST 18 V/L NOT DETECTED EOT 12/05/2018 V/L NOT DETECTED

12 Wk post EOT ALT 11 AST 16 V/L NOT DETECTED  Thank you GOD

Take that stupid dragon



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I'm just finding this all really confusing.  I've probably had this for over 40 years.  The likely suspect is a blood transfusion in 1974.  It was only caught when I tried to donate blood.  I've been checked for Hep A and B and HIV, which are all clear.  I'm going to ask my family doctor for the paperwork because they could only tell me that the VL is "not low".  I've been referred to a liver specialist but don't have an appointment yet.

I just don't understand how I could have this in my body for that long with no real symptoms and, as far as I can tell, no liver damage.  I have suffered from mild depression and fatigue for a long time.  Is it possible those are symptoms?  My body has been fighting this off for a long time.  I'm hoping that once I get through the treatment, my energy level will increase.  Right now I feel like some days I'm pushing it just to get through.  Then, to add to the stress, my basement flooded last spring and I've been going through all kinds of digging, renovations and way too many decisions.  I just want to sleep and some nights are good but some are really bad.  It's a good thing I'm retired.



__________________

age 65
gender F
genotype 2
fibrosis stage f0
HCV diagnosis date Oct/18
SOT May 10, 2019
HCV medication Epclusa
HCV lab results (viral load 2,950,000, AST unknown, ALT 10
No prior treatment



Guru

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Hi annie,

Glad to meet you here, and glad it sounds like you should be starting treatment soon.

Thank goodness for these new era drugs! It is possible that you may not get any "sides"! We had one youngen here who was in one of the early epclusa trials, he was easily and well-cured, but when he started taking the trial drugs, he felt nothing!, and the suspicion crossed his mind that (maybe, by mistake) they had (in error) given him placebos, instead of the real deal! - turned out he had indeed been given the real deal. He never once relayed nor complained about feeling bad while he was on his epclusa. So, maybe others might have that experience too! Of course some our folk around here who have done epclusa (or some of the other new era drugs) have not always felt 100% through treatment, and sometimes we debate as to whether some yuck IS from "drug" sides, or not. But generally the drug sides are very tolerable - certainly NOTHING like the nasty treatment drugs of yore! 

I am not sure how much assessment you have completed to date, but if you have not had a recent fibroscan or an abdominal ultrasound done - inquire about getting those done. Also, make sure they assess your Hep A/B immunity levels, as well as determining if you need any immunization for those (or for flu) prior to starting your hepc treatment.

Fire away if you have any specific questions you are pondering, we will all try to help where we can. smile C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 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)



Moderator

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Oops, sorry Annie.  I see have provided info in your signature already.  Anyway, still glad you're here. You should do well on your treatment.



__________________

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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Helloooo Annie,

So glad you’re here! I see you have met some of our fine family here. We have friendly, knowledgeable people here and we all enjoy providing whatever support we can, to all affected by this slow killer. It’s not just the liver damage, it’s all of the different ways Hep C can manifest itself.

Once destroyed, you’ll get back to health and can be pleased that you beat this early. With an ALT of 10, there’s no indication of inflammation. You are fortunate to have discovered this early. I know you’re going to do well.

If you need anything, don’t hesitate to ask. smile



__________________

Tig

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

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

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Member

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Welcome, Annie!  I am new too,  (to this forum) I, unlike you was diagnosed a long time ago,  back when interferon/ribavirin was the only option.  I remember when my family doctor actually asked me not to take treatment at the time, assuring me that someday soon better options would be available, and he was right.

I'm glad you decided to take care of this ASAP instead of waiting SO long as I did.  I am also  glad you found this lovely group of people, I have only been around here for a very short time and they have already been a comfort to me smile



-- Edited by lilbrownie on Friday 14th of December 2018 05:31:07 PM

__________________

Age 62
Diag 2007

Started Harvoni January 8, 2019 , EOT test results 3/5:

HCV PCR Quantitative Detected <12 IU/mL  

AST 27 U/L
ALT 29 U/L

SO FAR , SO GOOD!

Hepatitis C Genotype Type 1

HCV PCR Quantitative 3,763,192 IU/mL

FIBROSIS SCORE 0.64

FIBROSIS STAGE 0.01

FIBRO ALT 102 U/L

FIBRO AST 68 U/L



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Thank you.  I'm sure it will be Epclusa.  This is a link to an article by the Doctor I'm being referred to.

https://lfpress.com/2017/03/07/london-liver-specialist-urges-people-to-get-tested-treated-cured-and-move-on-with-their-lives-because-new-drugs-have-a-98-per-cent-cure-rate/wcm/7f4f6226-f26a-259c-9c52-290eb956bd53

 



__________________

age 65
gender F
genotype 2
fibrosis stage f0
HCV diagnosis date Oct/18
SOT May 10, 2019
HCV medication Epclusa
HCV lab results (viral load 2,950,000, AST unknown, ALT 10
No prior treatment



Senior Member

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Posts: 170
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Hi Annie,

Welcome to the forum! You found the right place for support. I notice you have Genotype 2 which is the most responsive to treatment with the new DAA drugs like Epclusa. In the ASTRAL-2 study patients with Genotype 2 took 12 weeks of Epclusa and 99% reached SVR12 meaning no HCV virus was detected 12 weeks after end of treatment. That is what I took. Your gastroenterologist will determine which drug is best for you. It will either be Epclusa or Mavyret. Harvoni is not used to treat Genotype 2.



__________________

Male, 66, Dx 1990, GT 2a/2c. Pre-tx VL 11,500,000, ALT 10, AST 18, F3, 12.4 kPa. Rx: 12 weeks Epclusa, SOT 3/8/18, EOT 5/30/18. Week 2 VL 50, ALT 12, AST 21. Week 10 VL not detected, ALT 12, AST 18. EOT + 12 weeks: VL not detected, ALT 11, AST 19. EOT + 24 weeks VL not detected, ALT 9, AST 24.



Moderator

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Welcome, Annie.

A silver lining here is that you were recently diagnosed.  That means you don't have to go through years of fretting and hoping for a cure. Lucky you in that regard. The new treatments are highly successful, including Epclusa. 

What do you know from your tests?  Do you know your genotype, your viral load, your ALT and AST levels?  You can put all of that in your signature line.  It helps us to know how to best support you.

And support you, well will.

I'm glad you here, and glad you are hopeful.  It will all pay off.

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

 



Member

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I'm new to all this and just looking for information and support.  From what I've read this should be a relatively easy ride but not looking forward to side effects anyway, probably Epclusa because that's what my Doctor has written about.



__________________

age 65
gender F
genotype 2
fibrosis stage f0
HCV diagnosis date Oct/18
SOT May 10, 2019
HCV medication Epclusa
HCV lab results (viral load 2,950,000, AST unknown, ALT 10
No prior treatment

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