Hep C Discussion Forum

Hey bro,

Weeeelll, what the news, 12 or 24, know yet?? Either way you got it covered, but am real interested to see how this all ends up going down between doc, insurance and you.

Hope, in the meanwhile, 'til the "further news" shoe drops, you have been enjoying your houseful, fireworks, life, the cosmos, good food and (by all accounts) it sounds so!

Love, sis 

That's a good point pablto, these drugs are new, who knows what they could cause health wise ten years down the road. Jimmy your honorable.  RC

Good Morning Y'all.

Dave the sky there is great. Sometimes there is a humidity factor and it does get hot.

Syd I am glad you enjoyed the ride. For some reason I could hear you in the passengers seat laughing and telling me to slow down some. LOL.

No it is not a matter of bravery on my part. The analysis of the current situation tells me I could potentially raise my chances another 2% by doubling the treatment period but then that would be more in the case if I had severe liver damage that would tend to allow for the virus to hide. There is a point where success is reached and upon that there can be no improvement.

The studies also indicate that due to cost, that treatment-experienced patients with genotype 1 and compensated cirrhosis can have the regimen shortened to 12 weeks if ribavirin is added. As mentioned I don't have cirrhosis but I do find that 12 weeks + RBV does a good job in such cases.

Just prior to starting Harvoni I came in at an F2 / A2 ALT was 73. The HCV RNA came in at 2,359,487.

It is often stated here that the VL going into treatment does not matter and I have quietly taken exception to that. The fact is one of the requirements for the 8 week course is to have a low VL which they consider to be the below 6m range.

Technically speaking if I were not treatment experienced, I would have qualified for the 8 week course. It is only due to the previous failure that I would be pushed to 12 weeks because it was not the numbers that did so.

On to the failure and what concerns it causes. In my case I was found to have the M28T Mutation at NS5A and Q80K and D168Y at NS3. OK hang on now.

In vitro, ledipasvir can select for the primary NS5A mutations Q30E and Y93H with genotype 1a, these mutations confer high-level reduced susceptibility to ledipasvir. I do not have Q30E or Y93H. Sofosbuvir retains full activity against the NS5A ledipasvir-associated mutations that I do have. 

So the only remaining concern is the affect Omeprazol may have on the ledipasvir. My belief is if it had any significant affect the way I have been taking the combo I would not have seen UND at 4 weeks. I recognize that does not mean I am cured at 4 weeks but it certainly demonstrates the Harvoni is doing it's job properly. If it is doing it's job properly then the guidelines are valid and in my case, like it or not, being reluctant to let go of the Teddy Bear, I am a proper 12 week candidate and there is no indication that I can see to justify 24 weeks.

I could throw a big fit but facts are facts. Brother Tig has generously offered numbers where I can lodge a complaint against the Insurance Company, but I believe such complaints should be valid and reserved for people that are actually getting jacked around. If I were to lodge a complaint I would have to demonstrate that they are violating the guidelines. In my case they simply are not. I would be pulling attention of some worker to myself that would better be used by someone who really needs them. That would be wrong in the way I believe.

Now there is the possibility that my Doctor will be successful in his appeal. If I were working for the Insurance Company he would not be mainly because I am trained in negotiations and the facts and guidelines would align with my position. One can't take the position another should spend $94,500 that cannot be justified based on the facts of the case.

I recognize everyone here is rooting for me and wants me to hold the Teddy Bear a bit longer. I greatly appreciate my family here but please no disappointments if things do not go in that direction. I covet your positive thoughts and prayers.

My Sister to The North many thanks. Yes I could sense the natives getting restless and I did hear a faint beat of the drums. Let's save all that energy for the party.

And lastly Wendy my lil Sister. No Clyde did not go. He would have been there to talk to but he is lousy with a response so kind of dead weight in the Truck. I am glad you had fun and sensed a smile when you wrote that. For me that is mission accomplished. ;)

Warm Regards to all.

JimmyK

Bro, 

We had a vote and there is reassuring consensus amoungst the group that you are indeed "all over" the situ, the best man for the job is on the job, with heavy back-up from the other 2 big and extremely well qualified guys. You got it covered from all angles. Did you sense the rest of the family were itching fer a scrap on your behalf tho (may still happen too, depending on how this thing shapes up. Just say the word!).  Sis.

Hey Jimmy,

Looks like you got some clear skies to go along with that fresh air at your hideaway there, hope the astronomical viewing was optimum and the time there ... nice and relaxing.

Thanks for taking us along for the ride!

Dave

Hi Jimmy, Thanks for sharing your get away with us. And thanks for settling me down with your cool-calm honest approach to 12 V 24 -- You stay the course, I will follow your tail lights and we all get through this!   My wish for you is that you get 24- in this case more is better! RC

Thanks Tig. I do believe you would love the place. Great sky at night with little ambient light. Milky Way shows nicely.

The problem that The Doctor may run into is a simple matter of the guidelines.

My case to be quite honest does not call for 24 weeks. Yes I have been treated before but I am an F2-F3 at best.

Originally we were pushing the 24 mainly due to Omeprazol and prior treatment. The Omeprazol has proven not to be an issue by nature of the 4 week UND finding. The LED is not having a problem with uptake. We were concerned Harvoni may not be as effective because I have to take the PPI. If you remember that is also the reason I was rejected for the trial he tried to get me in.

He initially did not want me on the Harvoni solely because of the PPI. When the trial was rejected I pushed the Harvoni and told him if he was so concerned then shoot for 24 weeks. Which he did and I know that is why.

The breakthrough on the V-Pack has little to do with it because Harvoni contains the NS5A kicker. (I said that cause you was all into Texas in your post LOL)

I honestly was hoping for the 12 weeks and was floored when I heard 24 had been approved.

Make no mistake, I would love the 24 weeks and I hope he wins. We will just have to see. I also don't want to be stuck on pills forever. I know I know, so long as I am taking the stuff the liver is resting and healing and happy. The tests show that.

But I don't want a crutch and I want to release this pacifier as soon as it is reasonable to assume it has succeeded. I believe my expectations of a cure at 12 weeks are reasonable and come it at the 95% range. Beats the heck out of the old INTER FEAR ON and the Monster Combos.

It will all work out and either way, 12 or 24, I still am not boarding The Ship for another 128 days!  LOL

JimmyK

Hey y'all.

Relax all will be as it should be.

As you know, prior to the news I had panned a few days out at "The Other Place". Well I headed out yesterday morning around 7:00 am. I was not going to let the disturbing news mess with my plans. As of right now I have 13 pills remaining so there is time to change the tide.

Before I left I let my Doctor know what was up. He is one of those professionals that really should not be questioned not to mention I can kind of detect he does not care to be.  LOL

So I let him know the Insurance Company was second guessing him. ( you could hear a pin drop. )

So I left him with that and headed for the Hills. Came back early just so I could stay in touch. His Sr. Nurse contacted me this morning to inform me that The Good Doctor had penned an Emergency Appeal and that generally a resolution takes 72 hours. I will assume 3 business days which comes to Wed the 29th, at which time there would be no problem doing a Red Label Overnight to my Door delivery of bottle # 4 at which time I would still have 7 pills remaining in bottle #3. That is assuming the appeal is granted.

If not, then I greatly appreciate the man's efforts on my behalf and simply won't worry about it further. In such a case, a finding of UND will be required on 09/29/16 or The Insurance Company will learn why it is best to follow the instructions of an expert in this field. I will simply then have to do a third protocol and that one will cost them more than they could ever have imagined saving by their stubbornness.

Anyway I will keep y'all informed and no worries, it would make me feel bad LOL.

Hey! Got one minute for me to take you to "The Other Place?"

I had a Craftsman Riding Mower in the back of the Truck so I rode it around, trimmed the place up nice and drank a lot of water!  LOL 

Jimmy,

What's the status? Didn't the insurance company pre authorize the 24 week protocol? I know you're doing what you need to do to resolve this, insurance commissioner, state AG, elected officials, etc. Don't forget the suggestions on the page we set up. The AU connection comes to mind.

Your ability to step back and reconfigure your plan mid stream, is amazing and commendable. I know the delivery of said information wasn't easy to receive, accepting it as a final decision shouldn't be done just yet. I know you're doing a lot to straighten this out. If there is anything I can do to help you, please let me know. You may consider contacting the assistance programs we have listed here. They aren't there solely as payment assistance sources, but treatment assistance as well.

Stay in touch.           OOoommm.......

Jimmy,

you are quite inspirational. To be able to totally turn around the situation in your own head is amazing. And practical.

I'm sure you won't go down without a fight but the bottom line has already been clearly set in your head. If bureaucracy, bungling and idiots get their way, you won't go into melt down mode - it wouldn't help your body's dragon slaying adventure anyway. And all those positives you've listed are facts. 

Let us know asap how things unfold. You are so important to us all.

Big hugs,

Syd

That was quite a good lesson in turning it around, turning it over to God etc. I personally needed to hear that so thank you. Enjoy The Other Place. Big hug!

Greetings,

The news while attempting to complete a refill was a bit much. There was an old side to me that I felt tip toe across my spine.

So I determined to take EMERGENCY MEASURES reserved only for the most pressing situations.

It was one of those, 'IN CASE OF EMERGENCY BREAK GLASS!" kind of moments.

So I did. I went to Wall-Mart.

Bought a few items for the drive out to The Other Place in the morning.

I spoke with one of my Doctors Staff and I intend to leave it at that.

I decided to look at things from a practical point of view. If I get cut off at 12 weeks, then that was all I needed.

Of course that means I had to also update my spreadsheet but I am halfway to decent with Excel so I added a "Plan B 12 Weeks" Tab and that took care of that.

What it means in terms of facts is not so bad.

Instead of 9/28/16 being the last Pill swallowed, that date will now become SVR-12.

Instead of having 99 Days remaining, I now have 15.

Instead of having completed 41% of my treatment plan, I have now completed 82%.

I don't have cirrhosis so the 24 week plan did not technically apply anyway. Pre treated non cirrhotic is a 12 week course of which I have been richly blessed with the 84 pills contained therein.

I am now in the 95% success rate category and having come in UND at 4 weeks the additional 8 weeks after that should do it.

So I have no intention of running around here like a decapitated Rooster after having encouraged others who have gotten worse news not to do so.

It's all good, Life is Beautiful, and I am a child of God. What in this world do I have to worry about? I realize I went to Wall-Mart but I lost my head momentarily. I am in control now and very little damage resulted in the trip.

Does anyone have a need for a New Mr. Coffee?  LOL

JimmyK

How stressful this must be, I'm so sorry to hear that you have to deal with this, I can only imagine.

I can, however, think of no one more capable or determined to get this straightened out, you are a master as traversing the ropes my friend.

Only bit of advice I can offer is some that you would, no doubt, lend to me if our roles were reversed: You can catch more flies with honey than with vinegar, so heed your quest for patience. Try to involve the prescribing doctor and express a state of emergency as may be needed.

Absolutely wishing you the very best on getting this resolved.

Hang in there, I'm assuming that you have a few days margin, you'll get 'er done.

Dave

Cool, I see they have a Linux version of software that'll work with my OS ... may just have to download and give it a try.

Probably better than a telescope for me since my cataracts are getting pretty bad.

If/ when I can get surgery I might consider a lower price range telescope, we do have some ambient light where I live but I don't have to go far to get completely away from that.

Fun stuff Jimmy! 

Dave

wmlj1960 wrote:

---

 You are on a roll Jimmy: UND, great lab results, 1100 helpful post, above water, etc. etc. Keep up the good work!

---

 Oh I have no complaints. Things are going well this time around. I am working from home and that has kind of made me a bit lazy. In fact I have been working from home since I started back in October. Boss is very cool and I have the computer Room here set up like NASA so I can do it all from here and in fact my equipment smokes the office stuff anyway.

Just to show how lazy, here is a shot from where I sit and I was too lazy to move the foot spray.  LOL

The interesting thing about the humidity is it tends to affect viewing of close objects such as the planets. Jupiter for instance has a hard time resolving the bands in a humid environment. But you can push past that and get a good shot of nebula such as can be found in Orion.

The real problem is ambient light. Example only now. The shot from my house tonight around midnight is the first picture. The second one is the same shot if I remove the light.

I assume Dave has a good view.

My brother in law that died lived in Duvall WA and when it wasn't raining, it was pretty spectacular.

JimmyK

 You are on a roll Jimmy: UND, great lab results, 1100 helpful post, above water, etc. etc. Keep up the good work!

Yes Dave it will be peaceful. I have already mapped out my viewing interest from my spot in the Hills. I am going to be out at 9:30 pm. No moon for hours so nice and dark.

Looking South at that time from that place is the first picture, "Wed Night". Then I will zero in on Saturn and it's moons with some of my gear and this is exactly what I expect to see. Ring angles and all. The second picture.

I use http://www.stellarium.org/ and have the software downloaded. Free and fantastic site. You can pull in the sky from anywhere on Earth and any date and time you select. Good stuff!

JimmyK

Hi Jimmy,

'grats on the bloods ... 'grats on the count ...

Do enjoy "The Other Place" and the stargazing ... sounds peaceful and full of awesome wonder

Dave

Not quite. It is one of them long haired Chihuahua's. Little Hippy mouse of a dog.

There will not be enough water in Texas for me to avoid "side effects".  

Canuck wrote:

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Hey Bro,

Very handsome set of labs you got there Mr.! I disagree with you tho, they ARE exciting, how can one NOT be thrilled at seeing crashed ALT/AST beauties like that, anytime!!, and that total bil, being better than halved, phht!! And, according to your platelets, maybe riba has LEFT the building! Nice report, you get an "A" for that! We will all be looking forward to your next set of lovelies and that Jul 8 VL report (but, we all know what the VL is going to be - don't we!). 

Duh ... you got me stumped alright (on that last post of yours bro) - yer gonna have to talk long and slow (but use little words OK) to 'splain it to me I'm 'fraid - what does this mean, when you say ...

"I forgot one very important stat.

Post Count. 1100"

OH! OH! Lightbulb on, maybe an inadvertent synaptic spark, don't tell me it means you have MADE 1100 posts here. NO way!

Love, Sis

---

 Hiya Sis.

Yes The Riba has left the building. I realized that finally back in late May but the fact is it hung on from Dec through May pretty good.

Currently a little on the tired side of doing well. Probably need to get around more than I have been but it is either poring rain or mirage in the desert hot lately. Makes for a miserable time outside. Going out in a bit to Fog for Mosquitoes so I can BBQ some pork chops later. 

Carol is leaving for her Mom's in El Reno this Saturday. She will be gone about a week. When she comes back she is bringing her mom and that ankle biting mouse of a dog she has. Did I mention Riba had left the building? Probably a good thing eh?

Any way I am headed out to The Hill Country next Wed, Have to go check on "The Other Place" and do a bit of upkeep out there. I will drive back Friday the 24th.

That will actually be kind of cool to get out to The Hills. Do some Star gazing.

I am getting there. I only have 105 days remaining so 63 behind me.

I see Fire.

Hey Bro,

Very handsome set of labs you got there Mr.! I disagree with you tho, they ARE exciting, how can one NOT be thrilled at seeing crashed ALT/AST beauties like that, anytime!!, and that total bil, being better than halved, phht!! And, according to your platelets, maybe riba has LEFT the building! Nice report, you get an "A" for that! We will all be looking forward to your next set of lovelies and that Jul 8 VL report (but, we all know what the VL is going to be - don't we!). 

Duh ... you got me stumped alright (on that last post of yours bro) - yer gonna have to talk long and slow (but use little words OK) to 'splain it to me I'm 'fraid - what does this mean, when you say ...

"I forgot one very important stat.

Post Count. 1100"

OH! OH! Lightbulb on, maybe an inadvertent synaptic spark, don't tell me it means you have MADE 1100 posts here. NO way!

Love, Sis

You're getting there bro. YAY. Break out the barbie. (not the doll) 

Excellent progress, Jimmie! Looks like you're getting everything dialed in just the way we like to see it. Without you're good ol ex friend Riba, your next set of tests should be stellar as well. This is a good sign of great days ahead!