Hep C Discussion Forum

Tig · Admin

RE: Test Results Appreciate Input

wendyo · Guru

Jimmy I am so thrilled and blessed that you shared that story with us. I do think of you as my older brother as we have so much in common. I will never forget me unknowingly posting the Alice in Chains video months ago before I ever knew anything about you and the Rooster. As I tend to say to my other family; is it odd or is it God.

love ya bro,

wendy

EricChuckFar1 · Veteran Member

JimmyK wrote:
Hiya Sis, that was a wonderful reply, thank you.
Well since you asked:
Some time back, Manny, Hippo and I, formed The Three Amigos. Manny was in Napa, Hippo in Arizona and I of course am a Texan. We would plan hook ups such as for the 50th Anniversary of the Hollister Bike Run back in 97.
Manny was an incredibly "interesting" person. He did PI work for a Law Firm in Napa that handled only Death Row Appeals. He is the one on the far left in the picture. He was a member in good standing of RedLine MC which was interesting as they were under the wings of the Local 81 in Vallejo until RedLine disbanded.
So the picture before you in a nutshell is a man who stands as a "Friend of The Court" often due to his occupation who at the same time was riding with folks who bear a Red and White 3 piece patch.
Last I saw him he had flown out to my house shortly after Carolyn and I lost our Son. He rented a bike and we rode out to "The Other Place" in The Hills. It's very quiet in The Hills.
Manny had Hep C and we talked about it some but strangely not much. More so during the last of his Liver Failure days that I would say stretched throughout the year 2008. We were pretty close so much so I would consider him a brother here on earth.
As one of the Three Amigos I was known as The Rooster. Long story but now you know what The Rooster is about and also the fact that Manny gave it to me one year probably back in 2005 or 2006.
Manny lost his battle with The Dragon on December 16th, 2008. That year, Christmas of 2008 I kept the Rooster in the box and refused to hang it. Hippo had died on an operating following a rather large heart attack back in 2005. Now in 2008 Manny died leaving but one of Three Amigos, me. That is a sobering feeling and watching the beast that I knew had hold of Carolyn and me take my brother was a very quiet thing which is the only way I can explain it.
I was intent on beating The Dragon but to be honest, mainly for Carolyn. I wanted her cured and at some point vowed to not hang the Rooster again until SHE was cured. So yes this will be more special that I can possibly explain.
I will hang the Rooster December 16th, 2016 in remembrance of Manny.
And that my dear is how I came across the Christmas Tree Rooster.

JimmyK

Jimmy, your story is heartbreaking and sad, but has a beautiful ending! Hang that rooster on that tree and let it be high and mighty and triumphant. You did it! Congratulations on slaying the dragon!

JimmyK · Guru

Hiya Sis, that was a wonderful reply, thank you.

Well since you asked:

Some time back, Manny, Hippo and I, formed The Three Amigos. Manny was in Napa, Hippo in Arizona and I of course am a Texan. We would plan hook ups such as for the 50th Anniversary of the Hollister Bike Run back in 97.

Manny was an incredibly "interesting" person. He did PI work for a Law Firm in Napa that handled only Death Row Appeals. He is the one on the far left in the picture. He was a member in good standing of RedLine MC which was interesting as they were under the wings of the Local 81 in Vallejo until RedLine disbanded.

So the picture before you in a nutshell is a man who stands as a "Friend of The Court" often due to his occupation who at the same time was riding with folks who bear a Red and White 3 piece patch.

Last I saw him he had flown out to my house shortly after Carolyn and I lost our Son. He rented a bike and we rode out to "The Other Place" in The Hills. It's very quiet in The Hills.

Manny had Hep C and we talked about it some but strangely not much. More so during the last of his Liver Failure days that I would say stretched throughout the year 2008. We were pretty close so much so I would consider him a brother here on earth.

As one of the Three Amigos I was known as The Rooster. Long story but now you know what The Rooster is about and also the fact that Manny gave it to me one year probably back in 2005 or 2006.

Manny lost his battle with The Dragon on December 16th, 2008. That year, Christmas of 2008 I kept the Rooster in the box and refused to hang it. Hippo had died on an operating following a rather large heart attack back in 2005. Now in 2008 Manny died leaving but one of Three Amigos, me. That is a sobering feeling and watching the beast that I knew had hold of Carolyn and me take my brother was a very quiet thing which is the only way I can explain it.

I was intent on beating The Dragon but to be honest, mainly for Carolyn. I wanted her cured and at some point vowed to not hang the Rooster again until SHE was cured. So yes this will be more special that I can possibly explain.

I will hang the Rooster December 16th, 2016 in remembrance of Manny.

And that my dear is how I came across the Christmas Tree Rooster. wink

JimmyK

Canuck · Guru

Hey Bro,

What a be-au-ti-ful little thing that rooster decoration is! Where ever did you get that/find that artful jewel?!

The anniversary I will always celebrate for you two, will be the dates you both got your SVR12's!!, and being that those 2 dates were not on the exact same day, I choose middle of the road then, and I will use the date of your celebratory boat trip instead, as the day I remember two very nice people finally reaching nirvana.

I guess it won't be too much longer for your next SVR24 draw eh? We'll have another party. I'll bring a turkey! biggrin C.

Phoenix17 · Senior Member

Congratulations JimmyK! It sounds like you had a hard time at the beginning, but it's all behind you now! It is going to be a good year!

Tig · Admin

Nice post, thanks Jimmy!

I remember your struggle and the toll it took on you and Carol. You handled it masterfully (imo). My hat is off to all of the Warriors here. The diagnosis, affect of and then treatment for HCV is hard on everyone it touches. You understand that well. It's nice to see you doing so well. Proof that it's all worth it!

The Rooster, I was waiting for your notice on that! Are you aware what the coming Chinese New Year is? This should be a sign.... It's the Year of the Rooster, no joke! Things happen that we can't explain, I accept that. I think this is one of those things. It's meant to be! I want to see it once displayed. That's going to be a keeper! A blessed Christmas indeed!!

JimmyK · Guru

This is my Anniversary. wink

It was one year ago today that my first treatment Plan began to unravel. From December 1st, 2015 to December 28th 2015 was perhaps one of the most miserable months I have spent on earth. I was quite nearly unable to walk.

By December 28th, the "official" word came down noting the breakthrough.

I forget the exact date but is was somewhere between the 1st and the 15th that I decided The Rooster would not be hung in 2015.

Yet here today, one year later, I am here to declare quite happily that The Rooster will hang in 2016. I want all the folks that are maybe just starting out, anxious, concerned, unsure, to just hang in there and no worries.

In a very short time after failing one program I started another and today I have a great SVR.

The treatment options are exploding right now and just keep getting better. So y'all just hang tight, you got this.

Cock a Doodle Doo Y'all!

JimmyK

Shadowfax · Guru

JimmyK wrote:
Well now that ya heard them....

Speech!

Speechless smile

I am glad you saw the meteors but we have had nothing but cloud and humidity so skies were not ideal, actually impossible for us to see. (Not that I would have been up at 3 anyway)

I hope the rains and flooding they are getting in LA are not affecting you all that much Jimmy. It's really not a good situation there and it's far from over they say. Yes, but rain is good and we got a bit, well needed since we are in drought conditions so anything is welcomed ... Well except for that tornado that hit about 10 minutes from me. We did not need that but nobody was hurt!

SF

JimmyK · Guru

Thanks C-Sis but no. The Perseid outburst has come and gone and we are sealed in an envelope of clouds. Have a full week of rain ahead and to be honest we need it.

Oh well I sure am glad you were able to enjoy!

JimmyK

Canuck · Guru

Hey JimmyK,

Starry, starry night,

will you, be gazing tonight?

Will you, be thankful tonight,

for a starry, starry night?

Will you witness, cosmic light,

be showered, with dust so bright,

turn your face, to the light,

on this starry, starry night?

My neck is sore, last 2 nights at 3 AM, I am scanning the heavens for the light show (wish I had your telescopic equipment!). Are you too, turning your face to the light, and thankful for a starry, starry night. Multi-tasking like, I go out in my Pj's and stand in the driveway eating a bowl of cereal, so as to not be wasting anytime ya sees, hoping my neighbour doesn't see me, or least hoping he may know about the comets and thus not think I have finally lost it, and I am looking for where I misplaced my kitchen. Saw some, not a ton. Sheesh, quick varmits dem things. Lots of faint ones! Drat it all, biggest ones were always caught in my peripheral vision. Still, a lovely gentle quiet summer night to join, a beautiful dark velvety universe greets me, and every glittering pinpoint of mystery pulsing their messages to me. Lovely out there! Hope you and yer gal were able to get out to your special back 40 to see it. smile C.

JimmyK · Guru

Well now that ya heard them....

Speech!

biggrin

JimmyK · Guru

SF, you are standing over a Dragon you just beat the ever loving soup out of. Pounding and pounding on him yelling,

"Say Uncle, SAY UNCLE!"

I get it and well understand. To the victor goes the spoils and you are due the crown you seek.

It's coming but be prepared my friend. You may find yourself then asking "Now what?"

The battle for me was / is a great deal of fun, always has been.

It was kind of funny, just last night Carolyn and I were laying in bed watching the final episode of Falling Skies. We had looked forward to a new episode every night since I downloaded the series. But last night, the victorious finale left us kind of feeling hollow. So this morning I found and downloaded the 10 seasons of Stargate SG1. LOL and the fight continues...

A good battle always allows for a forward thinking attitude. Continued adventure among the many defeats and victories along the way. But let's face it, an old war horse in a pasture is not a pretty picture.

I believe I do seek victory yes, but I must confess, I love the war. ;)

JimmyK

Shadowfax · Guru

Hi Cheddy,

No I am sure they did not lose them but they did not have them the other day. I will call again soon.

Jimmy,

As usual you are a tower of strength and great support. Thank you for your post and I would concur that based on my LFT's, it looks good

but I still want to hear those words.

SF

RAGDOLL · Senior Member

Jimmy, that is the news we needed to hear. So happy for your success. Chris

JimmyK · Guru

Hard to know where to begin with the thank you's for all the kindness. Each of you are very special to me.

SF no worries. We are used to reading the results of trials regarding Harvoni and that is always the hit or miss stage as they fine tune how to prescribe a drug.

Just look at Malcolm's most recent post. It is clear the Medical community is really taking note of the real life success stories. Folks that were one time hugely supportive of RBV are beginning to put it down as unneeded and they are surprised about that.

My Doctor who has well earned his bragging rights with regard to this field is also pleasantly surprised and just last night he has affirmed, and this is a cut and paste quote; "That is great news! You have a small chance of relapse at week 12 (about 4%), but Gilead reports NO relapses after 12 weeks."

This is the first time I heard that and he capitalized the word "NO". The use of caps in the field I work of course is significant and may not strike all as it does me. Workplace hazard LOL.

We sometimes put all of our eggs in the available data and in this case that is the trial data. What I am seeing is the outcomes are in fact surpassing the data.

Example only, in my case my Doctor was very nervous. NS5A, NS3 AND Omeprazol convinced him if on Harvoni it would take 24 weeks. He is now leaning toward early findings of UND is a strong enough indicator of a likely 12 week success rate. Some are found detected at week four and that may indicate a need for 24 weeks but only based on other factors.

The rapid plunge in results that are sustained throughout therapy are becoming more of a key factor and you only need to look at your ALT / AST to realize how very successful and how well you responded during treatment.

SF you got this one, you will see.

To the rest of you again, my thanks. I believe firmly now that the trial data is good, but the real life outcomes are even better. That to me is pretty exciting to consider.

JimmyK

robertsamx · Guru

Jimmy, you never wavered.you claimed it, you belived it right from the start.They beat you down once, you rose to the top stronger. You see things in a different light,you recognize the good in life around you. What a inspiration you have been to those of us on the forum who have ears to listen.you always speak truth, thank you so much for your kind words. Second is truley first in my book as well. Rc

Cheddy · Moderator

Hey SF.

What the heck is going on with waiting for 2 weeks? I would be calling my clinic to see if they had lost them and asking to test again. I'm extra sympathetic as I had my 12 test today and my EOT4 took longer than usual. It's a cliff hanger so don't be afraid to get the answers you paid for.

Thank heavens we got the good news from Jimmy. He's been through too much. He seems to roll with it though.

Keep us posted.

Ch

Matt Chris · Guru

Hey Jimmy

Great news!, super congrats on your 4 weeks EOT lab results. This test is the highest hardest hurdle to reach SVR and you have made it with flying colors.

So happy for you.

matt

Shadowfax · Guru

Fantastic Jimmy,

You finally got this one and don't be thinking of the next treatment.

Me? I dunno ... still waiting for my results of EOT+12 that were taken two weeks ago yesterday but all of these give me confidence.

These are great posts to see.

Almost there now!

SF

JimmyK · Guru

Add two more sisters to the list of thank you's.

To be honest it is kind of strange. I honestly was not expecting this. I had already picked out my next routine and had planned to start treatment with it in January. Kind of has left an odd void. I recognize how that sounds but I just checked and I am not nuts. Well...you know.

JimmyK

singsong · Veteran Member

Great news, Jimmy, Looking forward to Carolyn's final final. Anna

Canuck · Guru

Hey Bud,

THAT'S the way we do it!!!!

ZERO at week 4, and 12, and then at EOT+4.

Yer a big fat ZERO just like me!

I mean this in the nicest possible way!!

Real good news bro, keep it up, I know you will.

We think you can-we think you can-we think you can ...we knew you could-we knew you could-we knew you could! biggrin C.

JimmyK · Guru

Thanks Dave, much appreciated.

JimmyK

Linuxter · Guru

Very glad to hear the great news, not too surprised here, Harvoni has a great track record.

Onward to SVR!

Congrats,

Dave

JimmyK · Guru

Thanks Tig.

Yes I believe that puts me in the 97% range now so that is quite promising. I am a rather firm believer that relapse has a relation in many cases to non conformance and in that regard, 5:55am will forever be kindly remembered. Certainly not all cases but if my conclusion is right then the 97% is possibly even tighter.

We shall see. Right now I am most excited for Carolyn. My prayer, always having been, her first LORD then me, indicates to me she is cured and she has a mere 10 days remaining to establish that as a virtual fact. I recognize not all share my beliefs and that is ok. But from my perspective... wink

Regards

JimmyK

Tig · Admin

Congratulations, Jimmy! The odds of SVR 12 are quite good. Lots to be thankful for and I wish you continued good luck on your +12 viral load.

JimmyK · Guru

Thank you Ladies, I appreciate the kind words.

Big Brother

JimmyK

Cheddy · Moderator

Jimmy, that is truly great news and a very good indicator. Someday this will all be history. Imagine that.

wendyo · Guru

Nice shock and Congrats Jimmy

JimmyK · Guru

Good Morning.

Quick update. I have been contacted by one of my Doctors and as of EOT, Week 4, I remain Undetected.

That to me came as a bit of a shock albeit a pleasant one.

All Glory, Honor and Thanks be to God.

Regards

JimmyK

JimmyK · Guru

Greetings Sisters,

No worries, very busy is all. I promise to keep y'all updated.

<Hugs>

JimyK

Cheddy · Moderator

Hey Jimmy,

Where the heck have you been? I miss your input and knowledge.

Happy labs today! Can't wait to hear how it's turning out.

Cheddy

RAGDOLL · Senior Member

Hi Jimmy, Anxious to hear your results... Have a great week-end. Chris

Cinnamon Girl · Guru

Let us know when you hear your results, Jimmy.

Wishing you the best of luck, looking forward to good news!! smile

Linuxter · Guru

Indeed, wishing you the best in lab results JimmyK, may you be well on your way to SVR.

Dave

Tig · Admin

Hey Brother,

Today's your EOT +4 viral load. Good luck, we'll be keeping our fingers crossed! Keep us informed.... smile

dharmabum · Senior Member

Hey Jimmy,

Same thing happened to me here in CT, 2015. CVS/Caremark refused to send my 3rd shipment and to this day they blamed it on the insurance company.

The insurance company told me that they had experienced a computer glitch which caused my name to be dropped off some sort of list.

I sent a plea out to the top cop in Connecticut, The Attorney General. The Assistant AG personally called my insurance company on my behalf.

I had my Harvoni the next morning and was able to complete 12 weeks of treatment without any interruptions.

Greed is an ugly, ugly thing and in these cases probably criminal.

Stay well.

Cinnamon Girl · Guru

Jimmy, Jimmy... what on earth is going on here?! So many twists and turns, this is quite a saga...and none of it seems to make sense!

Sorry you`re having to deal with all this confusion and incompetence, although I have a feeling you quite enjoy a battle when you know you`re in the right. wink

Congrats on your UND anyway, that`s very reassuring, and whatever else happens no-one can take that away from you... smile

JimmyK · Guru

Tig56 wrote:
I'll agree to change direction based on your recommendation. However, I will continue to grit my teeth (all 3 of them) until we are smoking a celebratory SVR Brisket. I don't like seeing people being treated any way but right. It's how I roll....

Well Brother I don't like seeing anyone being wronged. To this I agree with you 100%. But for the sake of those that will follow us, I am ok with them having pulled this on me because I believe I have a good chance of paving a better road going forward and it will not simply be the road I walk.

Again, I feel I am likely cured already and if so, then so is Carolyn. But this also indicates that there is more work to be done. Cutting me off may not affect my outcome, but doing so could affect others.

Sometimes Doctors, Pharmacies and Insurance Companies just do the paint by numbers routine and that routine goes unchallenged. That it happened to me means it happened to someone that will and is quite able to challenge them.

They need to understand that we Hep C folks are not just a bunch of dumb cattle. With that in mind I will again state that things are going exactly as they are supposed to. wink

JimmyK

Tig · Admin

I'll agree to change direction based on your recommendation. However, I will continue to grit my teeth (all 3 of them) until we are smoking a celebratory SVR Brisket. I don't like seeing people being treated any way but right. It's how I roll....

JimmyK · Guru

Tig56 wrote:
All I can do is shake my head.

Not sideways brother, up and down. I did have a bit of a chat with the Doctor as well. Asked him why he sent or allowed a Nurse who I never met to do my Peer to Peer with an expert on their side. I noted that had HE done the peer to peer we would not be in the current situation. (The man is not happy and knows I am no idiot.)

Shoot I have them all in my pocket now, even the folks on my side. wink

This is going to work out great!

JimmyK

JimmyK · Guru

wendyo wrote:
I hear circus music...peanuts, popcorn, get your cotton candy. Send in the clowns. What a cluster.

I smell sweet victory! And I know it when I smell it!

JimmyK · Guru

Linuxter wrote:
Well I never ...
So I wonder who wrote the Rx for this one, certainly not your doctor.
I thought it was made clear to the Insurance that you would only go through your doctor.
Loony Tunes it is ... I a little confused, can't imagine how you are feeling.

I think it was a counter move from my Doctor. The Prior Authorization goes hand in hand with the original for the total of 24 weeks. He never changed that plan. They caused the interruption in shipment leading to the 7 day gap in treatment. That 7 day gap could potentially cause problems so we are refusing to continue at this point and at that same time keeping the treatment plan 1st prescribed on record.

If a failure comes about we want to retain all cards on our side and give them none. The letter that CVS wrote based on the Doctors comments on the Insurance side is a keeper and will supply all the ammo needed if I fail. It proves they wrongfully stopped a valid treatment plan, which they later went on to agree with. So my Doctor was right all along and they know it. They messed things up and we can, if need be, prove that. If I fail now at 12 weeks, the re-treatment plan is an undisputed 24 weeks in which case they absolutely blew $94.500 trying to out think us which they needed to bring a much bigger lunch to attempt.

This is kind of like sitting at a Texas hold um table with a Royal Flush and taking every penny from a Dude who calls himself "Poker Jack".

Never bring a knife to a gun fight.

JimmyK

Tig · Admin

All I can do is shake my head.

wendyo · Guru

I hear circus music...peanuts, popcorn, get your cotton candy. Send in the clowns. What a cluster.

Linuxter · Guru

Well I never ...

So I wonder who wrote the Rx for this one, certainly not your doctor.

I thought it was made clear to the Insurance that you would only go through your doctor.

Loony Tunes it is ... I a little confused, can't imagine how you are feeling.

confuse

JimmyK · Guru

The Pharmacy just called wanting to ship my next bottle of Harvoni immediately. So I asked them, "I take it you have a prior authorization form and approval from Insurance then, is that correct?"

The young lady said, "Yes we do."

So I asked, "What is the date for the prior authorization, from and to?"

She answered, "From July 14, 2016 to September 15, 2016."

So I politely stated, "Good we have plenty of time then. Do not ship, I will get back to you and let you know if and when I would like this prescription filled."

Strange that it felt kind of good to do so. wink

Stay tuned for the next installment of the Looney Tunes Adventures of JimmyK.

Idiots

JimmyK · Guru

Hi SF.

Yes and no.

If I fail we have a very reason to make the case that it was due to their changing the plan set forth by an expert in the field.

We also have a very telling letter that outlines the original denial and frankly,... how should I put this, ahh yes,.... they blew it.

So even if I produce RAS in a failure,....

http://hepcfriends.activeboard.com/t62358110/healio-updates-hcv-alerts/

... we got them.

RAS affects some in 12 weeks but none with 24 so... If I fail they flushed better than $94k.

It's all good. Hopefully I made it and if not, I will. Tenacity is a blessing, and I have been blessed.

wink

JimmyK

Shadowfax · Guru

We are all hoping and believing you will be SVR. You mentioned if you were detected at 4 weeks you would be able to start it all over again.

I have heard that Harvoni is one that can be used more than once. You mention as well 24 weeks ... so if I understand correctly then just adding another 12 when detected would probably not do the job again. Is this correct?

I will be having my lab work done in two weeks for EOT+12 and I know my doctor said that if it did not work there are other protocols. Honestly, I would want the Harvoni again because I tolerated it well just like most but if it fails the first time are we really convinced it will work the 2nd? I would have liked 24 weeks as well. A penny for your thoughts.

SF

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