Hep C Discussion Forum

Tig · Admin

RE: Vote NO on Hep C

tanner · Senior Member

Thanks everyone, for all the well wishes for myself and for my husband. The party was a hit! I am back down in Naples right now. My mother fell in the shower and ended up in the hospital. So I am taking care of her for a week and Im just grateful that shes OK.

Observer · Guru

Happy 60th to your hubby

Sticker · Veteran Member

Great news! Im late to the party, truly happy for you Tanner!

Iris Dragonfly · Guru

Yeah! celebrating life, you got it girl!!!

Now to really celebrate!!! Many, many congratulations from me

WOOOOOOOOOOOOOOOO HOOOOOOOOOOOOOOO

blessings, Iris

Tig · Admin

Genotype 2, back in the dark days of Interferon, had a better SVR rate than Geno 1. Compared to today, the differences in success rates are night and day. The new DAA’s changed everything and the term “cured” became our new buzzword.

Here‘s an article, recently updated that gives you good insight into Geno 2 history.

Genotype 2 Tx Hx

lamassu · Senior Member

tanner,

Congrats! Tig will correct me if I am wrong but since you were Genotype 2 there wasn't really a high success rate way to treat us type 2's until Epclusa. The cure rate for type 2 using Epclusa is 98-100% which is phenomenal. F1-F2 is minimal fibrosis and I bet your liver will repair now that the virus has been cleared. I went from F3 to F2 in just over a year.

tanner · Senior Member

Cheddy, I am doing well. Thanks for asking. How are you? Spent much of the summer in Muskoka; still walking through this heavy burden for Emily. Grateful she came to Canada with her 2 pups. As far as celebrating goes, I am throwing a 60th birthday party for my husband this Friday on the beach! It's all about celebrating life, isn't it?

tanner · Senior Member

Tig, Observer, 5-1, Cheddy and Canuck: THANK YOU!

Indeed, what good days these are that we can be cured!

Canuck · Guru

tanner!

Big congrats! Welcome to club zero. Me and lamassu and many of the other sof/vel folk (or, in my case, sof/vel plus) we welcome you to this great viral holiday! What a wonderful und. You have been velparized. I like your docs' text BTW announcing your SVR - nice to see those words written out in full! Even tho (I hear ya!), you KNEW you were cured! : ) Oh what good days these are. Wonderful results and news. : ) C.

Cheddy · Moderator

Oh, Gail. I am so very happy for you. How are you feeling? How's the family?

I hope you have plans to celebrate. It's worth it to define the passage, imo.

Observer · Guru

congratulations dragon slayer!

5-1-18 · Guru

woohoo, i'm so happy for you tanner. :

Tig · Admin

WOOHOO!! Congrats, Gail!

tanner · Senior Member

Second set of results after the first blood draw was done for the wrong test. Results of correct draw:

Great news, no virus detected! You have reached SVR (cure). Congratulations!
Donna

Component	Your Value
HCV RNA by PCR	HCV RNA not detected by PCR. IU/mL
Reference Range: Negative for HCV RNA The Linear Range of this assay is 15 IU/mL to 100,000,000 IU/mL.

I knew I was cured!

-- Edited by tanner on Friday 23rd of August 2019 09:58:27 AM

Canuck · Guru

Tanner,

Approved and being ready to go is good, (I know) not as good as actually having the drugs in hand, or putting that first pill past the lips and down the gullet, but still ... knowing the drugs are coming is relieving, just to know that, for sure ... "help is on the way"!

Your epclusa will be arriving by snail-mail eh? I bet you are a better, more patient "waiter" than i was. To kill time, while we are waiting (if you have not read this old thread yet) here is a thing about waiting. Waiting, waiting, waiting

It won't be much longer now, and you'll be starting off on your cure. C.

5-1-18 · Guru

awesome tanner !! you did it.

i use a laptop.

and yea to the newest group of treatment troopers

lilbrownie · Member

Yay Tanner ! I know what that wait is like, I think I chewed all my nails off waiting for those pills to come. Wishing the BEST for all of us starting on this journey.

tanner · Senior Member

5-1-18 wrote:
tanner, i just copy and paste. the smaller ones that don't move too much are the best :D

Like this? For all those starting meds shortly.

tanner · Senior Member

Thanks 5-1

-- Edited by tanner on Tuesday 15th of January 2019 11:40:15 AM

tanner · Senior Member

Thanks 5-1. Are you copying on a mobile device? I tried; but the gif app doesn't come up like it does when texting.

5-1-18 · Guru

tanner, i just copy and paste. the smaller ones that don't move too much are the best :D

tanner · Senior Member

Thanks, Canuck! It hasn't arrived yet but I'm being patient. (They told me it was being mailed.)

tanner · Senior Member

Thanks 5-1-18! How did you get a gif to work on here?

5-1-18 · Guru

tanner · Senior Member

Tig, that works!

Canuck · Guru

Yay Tanner!

O O

l

U

Tig · Admin

That's fantastic! Nothing like a quick approval to send the Dragon into a complete panic. Bwahahaha! You're going down, Dragon. Let the slaying begin...

How bout this one?

Annie · Member

This one is better :)

tanner · Senior Member

Hahaha - same one I posted! Thanks, Annie!

Annie · Member

biggrin How's this? Congratulations!!!

tanner · Senior Member

Epclusa approved yesterday!!! Where's the emoji for jumping up and down? biggrin biggrin biggrin

tanner · Senior Member

Canuck, thanks for that encouragement. Yes, I am a survivor but so are all of you. When you cheat death, you really are filled with overwhelming joy and gratitude for life itself. I cannot imagine your in-laws pain. Yes, AVMs are congenital. It's just so rare that it would happen to 2 in your family (familial). And yes, that's probably due to some weird genetic factor. You sure know a lot about this. I belonged to an AVM support group (like this one on Hep C) the first year or two after it happened. Back then, people were opting for radiation and/or glue embolizations (to block it) before theirs might rupture instead of an out and out craniotomy. It was their symptoms (headaches, seizures) that caused them to discover they had it. We lost a few in that group. I would choose the surgery any day.

Yes, the liver specialist said they never look at that ANA number in isolation. It's all in conjunction with the Hep C so I expect that to go the way of the dinosaur.

Thanks again!

Canuck · Guru

Tanner,

I made a couple posts to you (here and there), i think some over where you started out, over on Annie thread and then elsewhere i think, but I will drag a snippet over to here to discuss this particular bit further with you before it gets buried - just because of importance of what you have been through, a survivor of a ruptured AVM! Any kind of brain bleed, whether it be the regular cerebral vascular "accident" or one of these rupturing mass types, all kinds of brain bleeds can be critical life-threatening (if not fatal) events, often they are life-changing even when survivable, you have certainly beaten the odds in many ways, in being the unlucky recipient of having owned one of these undiagnosed masses in the first place, they are seen and are well-documented "thing", but are not that common in the population, and less common for people to survive a rupture of same! - you certainly dodged a bullet there - i can see from some of the comments you have shared you have suffered from the aftermath of the bleed, but it was amazing and lucky you survived. You were lucky to get to the doc who saved you.

(moved comment) ... " about your family members who died of an AVM. You probably know that it is NOT heredity. The vessels just do not form correctly in the fetus. It's a terrible "coincidence" that both of them died of the same thing " ...

I agree that (technically) until proven otherwise, AVM's are not "hereditary", in my in-laws case, the docs told the rest of that family to get tested in an abundance of caution, and to make the rest of them feel better (I think) - in AVM's it is not really well-known/well-defined (the causation) - exactly WHY/HOW/or WHEN these AVM's form or start to form and what the exact cause of them can be blamed on, some reasons may be more likely than others. It IS semantics really, but if they cannot be deemed "hereditary" per say, they are thought "congenital" (might be seen at birth, forming at some unknown point in gestation, perhaps not found for very long times), AVM's can and have been considered "familial" too (familial weirdness like this has been documented in limited cases, where siblings have AVM's and/or parents and offspring have AVMs, so, they cannot rule it out as "being familial" it seems), and, they maintain to stress possible unknown "genetic factors" as potential causation.

As hard as it has been for you, i am so glad you survived your AVM, that your family did not lose you, my in-laws were just so devastated with losing two of theirs to the same thing in such short order.

You are meant to be a survivor, you are meant for greater things, this next step, getting rid of the hepc will be far easier.

Oh BTW - you had been speaking with Observer about her being in BC, and asked where in Canada I was from? - I am like Obs, in BC, but I am many hours away from Vancouver I am afraid.

I note your "not high" ALT/AST blood levels, that's good, we'll take anything good or better for now! Regarding ANA alterations and blips, we see that happen sometimes, and, we have also seen these aberrant blood tests resolve, all on their own, after cure! Wait and see. It will be SO much better for you to not be packing this virus anymore. I hope things get approved soon for you, you will feel better about things once you get started. C.

tanner · Senior Member

Thanks, Tig!

tanner · Senior Member

Thanks Ashenvale!

Tig · Admin

Congrats on the upcoming approval, Tanner! Epclusa is a fabulous Dragon killer!

Ashenvale · Member

Tanner, fingers crossed, really hope they approve it so you can start the treatment soon!

tanner · Senior Member

Observer, I can't believe you had a tumor on top of all this. I really hope that the fibrosis will reverse. My doc has now requested epclusa. I have a feeling this one will be approved. Just waiting....

Observer · Guru

Tanner,

As 5 said, as soon as the treatment stops hcvs evil replication, the liver can start to heal...

I think there was one member who was at cirrhosis and 5 years after his UND I believe they started to see a regression of his fibrosis.

I had a small setback in my recovery, I felt better but not BETTER. Then a year after my treatment, my AFP was continuing to be elevated a titch, and it turned out, I had a tumour. It was zapped and my recovery became really life altering (in a good way) smile So although Im 3 years clear of HCV , I feel like Ive only really got 2 years of real healing.

So... I still show cirrhosis on MRIs but Im super hopeful that with healthy diet and exercise my fibrosis will eventually reverse.

I sure hope your insurance company okays your treatment soon.

5-1-18 · Guru

you are welcome tanner

tanner · Senior Member

Thanks, 5-1-18!

5-1-18 · Guru

tanner, yes the liver gets busy trying to repair itself and does have a chance to do that to some degree once the HCV is gone

tanner · Senior Member

Hi Observer. I'm so glad you got rid of that MONSTER! Can't believe you were at stage 4. That does bring up a question. Once the Hep C has been eradicated, do new liver cells begin to grow? I'm probably not asking that correctly but I'm wondering once the virus is gone, can the liver heal itself?

Your days sound lovely; peaceful and calm. As I just responded to Annie, I don't live permanently in Canada, just the summer. After the treatment I received there (air-flighting me to Toronto for a seizure that put me in a comas), I sure wish I did.

My daughter-in-law took that shot around 5:30 AM from the dock a few summers back.

Your relief is palpable. I hope you continue to thrive.

tanner · Senior Member

Hi Annie, thanks for the link. It spoke volumes about Canadian healthcare:

"....the disease should be eradicated in Canada in the next 10 to 15 years. The drugs have a 98 per cent cure rate, he said. Thats really high. While there have been drugs available for those with hepatitis C over the last two years, a 40 per cent group with subtypes of the disease did not have any available treatment. Now everyone who walks in the door with hepatitis C has a paid-for treatment. The new drugs fill the gap and include one drug Epclusa that can be used for all genotypes...covers all six types of hepatitis C...this one takes the thinking out of it.

Alas, I do not live permanently in Canada; only there in the summer. But I have experienced the ease, care and low cost personally when I had to be air-flighted to Toronto from Muskoka several years back for a massive seizure that put me in a coma.

Annie · Member

Hi Tanner.

I'm from Chatham, Ontario, down in the banana belt :) I've been to Muskoka a few times...such a beautiful place.

According to this article from the London Free Press, the drugs should be covered. I'm not to that point yet but will be asking. Dr. Marotta is the specialist I will be seeing Jan. 31.

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?fb_comment_id=1722897001156893_1897533680359890

Observer · Guru

Hi Tanner,

I was offered interferon when my fibrosis was at level 2, but the universe conspired to keep me from that treatment, when my youngest begged me to try the newlay developed DAAs, my fibrosis had progressed to level 4..cirrhosis cry .

I cant express how much better I feel now that Im rid of that monster... I do still have a number of issues as a result of that long term cell altering...(my immune system being the most affected) but they are all manageable compared to before and to not be exhausted all the time is amazing!

I live in BC...in Delta. I live only 2 kilometres from the beach/wetland bird reserves and I walk my dog there and photograph eagles,crows, herons.....for 2 hours everyday. Sure couldnt do that pre-treatment .

I hope Ontarios medical system will pay for your treatment soon.

(your photo is gorgeous!...the colours )

tanner · Senior Member

Cheddy - very very helpful post and helpful link to definitions and acronyms. I can now fill in most of the numbers in my signature. I went through all my labs but I don't know what other numbers to list. (under your etc.) The only one off the charts is the ANA (autoimmune antibody)

Cheddy · Moderator

Tanner Girl,

Here is some of the information you may need. We'll try to clarify as you learn more about your labs and all. You can also use the Search above for further information. There's one called Forum abbreviations.

Good luck with your insurance. Relax the best you can, and enjoy that beautiful view.

How To Create Your Signature / Forum Abbreviation Definitions	Permalink Closed

ALL members please do this. It will be helpful for everyone if you create a signature with HCV related information specific to you so that it can be quickly viewed by other members at the bottom of each of your posts. This promotes more accurate and prompt reply's to your post by other members. In many cases this eliminates the need for that member to look through your older post to find your information which can be very time consuming and unnecessary. If you need help with this then Tig, myself, or another moderator will be glad to help you. To create a signature: (#1) - Click on 'User Details' circled in 'Red' (shown in the image below) (#2) - Click 'Signature' circled in 'Green' (#3) - Enter your information in the 'Subject Body' area circled in 'Blue' (#4) - Click on 'Save Changes' circled in 'Black' You can view other members signatures to get an idea of what information to include such as: age (optional) gender (optional) genotype fibrosis stage (if known) HCV diagnosis date treatment start / end date HCV medication(s) HCV lab results (viral load, AST, ALT, etc) any prior HCV treatment including date(s) and medications, etc. SVR date (if applicable). Some of the abbreviations used in the signatures are unique to this forum so to familiarize yourself with a list of them click the following link: Forum abbreviations ____

tanner · Senior Member

Hi Observer. Thanks. Sounds like you had a very frustrating and scary time. None of my family has been tested but it's next on the list. Regarding approval: my doc says their office has not received a denial even though I have, so they are calling the insurance company. Regarding the treatments. A friend of mine was diagnosed many years ago, back when they tested liver damage with pegs instead of fibroscans/ultrasounds. Her treatment took 48 weeks!!

What was your liver damage level? Mine's between a 1 and 2. I know 4 is cirrhosis. I also realize there are numbers I don't have and don't know what they mean. I noticed in some of the signatures here there are a list of numbers.

PS - Where in Canada? My avatar is the view from our dock at sunrise in Muskoka, Ontario.

-- Edited by tanner on Tuesday 8th of January 2019 09:34:11 AM

-- Edited by tanner on Tuesday 8th of January 2019 09:55:28 AM

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