Hep C Discussion Forum

Canuck · Guru

RE: The HCC Treatment Train

Cinnamon Girl · Guru

Finally, some good news for you, RC!!

I`m very pleased to hear this, and what a huge relief it must be for you and Chris that the ablation procedure can now go ahead.

You`re both in my thoughts and I`m wishing and hoping for the best possible outcome.

Stay strong, both of you, you`re getting there, and we`re all along for the ride with you... smile

wendyo · Guru

prayers for you, Chris, and the surgical team.

Loopy Lisa · Guru

About time too, I have been rooting for you. I can't believe they don't think you are under enough stress as it is. I hope this is the start of many great news, if anyone deserves it, its you!!!! :)

JimmyK · Guru

My prayers go with you Brother. You are on the long road we all share regarding destination. But I have faith you will get there.

Love ya Brother!

Jimmy

Tig · Admin

Hey RC,

Man, I bet you are tired of all the runaround. I'm glad they finally got something accomplished and now the road is paved to victory. You know we're all right here beside you Brother and will be with you all the way through to YOUR SVR Train Station! Let's get that accomplished next and I know you will. I suppose I'm going to have to get together with a few folks and start planning your party. It's gonna be a good one! Good luck my friend, you and Chris are both in our thoughts and prayers.

robertsamx · Guru

Hi All. My Dr team sent in a 16 page request for my ablation procedure and finally got it approved. I'm going over this Wed to have it done. I hope they get this one, as you may remember they missed the first one!!..The plan is to take a biopsy and then do the ablation on the way out, thus reducing the chance of tumor seeding. It's been a long wait- I'm sick of it all!! RC

Canuck · Guru

UN-BE-LE-VA-BULL!!

What they put you and her through!!

I am SO spittin mad, I am beside myself, many times over, it's makin for quite a crowd here!

I just don't know how you are standing this! I would be a crumpled crying mess by now.

Obviously, you (and her) are made of the toughest-stuff-I-know!! Keep doing it - surely this torture has to be over soon.

I have been following threads as best as I can, but, as you see I have been "away". Know that you are much in my mind, I think of you everyday.

Hang in there. So sorry for all this BS. furious xoxo C.

nightowl · Member

Hi RC ... I have just read your story and it is infuriating. So glad to hear that things are starting to turn around for you. The ridiculous and unnecessary risks these insurance companies place on people with serious illness is mind-boggling. I have my fingers crossed for very good news for you on Thursday x

Sydhanrahan · Guru

Hi RC,

I really do hope that the turning tide delivers the best batch of DAAs on the beach by the end of the week.

It really is disgusting to hear about the insidious stigma that this disease carries. Why else would they take this action? You need treatment more than most, not less. And you seem to hardly spare your own circumstances a second thought, you are so busy here allaying the fear of others.

You are a hero around these parts and we are all standing with you, hoping this is resolved as soon as possible.

Hugs,

Syd

wendyo · Guru

That's a lot of change and progress in one day on the part of your team, so I will keep praying for this forward motion to continue and they see the error of their ways (the insurance side).

hugz,

wendy

Linuxter · Guru

Most Excellent RC!

It's a dangerous dance that insurance plays.

To have your team on top of this as they are is very reassuring, prayers and best wishes.

Dave

Tig · Admin

Fantastic news, RC! I like seeing your locomotive gaining speed my friend. I think we will be positive and count on the end of the week at the latest. After that I'm getting out my Camo and Gillie suit! Just might have to show them how "unhinged" we can all get! We'll let Dave run the operation! Best of luck, this will be your week! smile

JimmyK · Guru

Great news brother and yes they really have to dot all the I's and cross every T. Sounds like they can see their own submission was lacking so yes this is GREAT NEWS!

You remain in my prayers Brother!

JimmyK

robertsamx · Guru

Hi All. Today I have had two calls from my Dr. Team. Tomorrow morning they are going back to square one and re-submitting my entire case with specific diagnostic codes that apply to the treatment program and my specific case. It sounds like the first application for treatment was a little vague and over generalized. The guy working approval now is the guru on this stuff. After talking with him I really feel that I will get approved soon, like by Thursday! Its a little too soon to take the gloves off, so I will wait and see how things go this week. It's going to be ok everybody- Thanks for your support!!! RC

Cheddy · Moderator

I wonder if you have someone at your news station helps with this type investigation. Many stations have Justice Busters. Just thinking.

Cheddy · Moderator

Kick ass, RC!!! Really.

Get real names of real people for real explanations.

Grrrrr....

Loopy Lisa · Guru

Maybe its time to start thinking about making waves with legal action. Someone won recently in Washington DC due to being denied treatment they needed. I am disgusted. The hypocratic oath is to save and preserve life, how dare an insurance company decide you are not worthy. If you only had cancer, would they deny you then? This insurance in the US is nothing more than a game, what are you paying for? Sorry to have a rant, but it really is a joke in my mind. I hope you get this resolved soon. Please keep us updated!!!!

Pablito · Senior Member

Oh man, so sorry to hear this.

Like the guys say, keep on at them. Involve whomever you think can help. Document everything. And like Tig says make it personal...get names etc...so they are dealing with an actual human and not just a 'case'.

Pablo

Linuxter · Guru

Time to start writing the big guns, talk to your doctors and ask them who to contact to gain some leverage. Insurance commissioner(s), attorney general, newspapers if you have to, Senators, Congressmen whomever (I don't really know). I wish I knew more on how to make it happen, there's got to be a way to force their hand. Remaining calm but arming yourself as you are able, documentation, communication, finding ways that others have used in similar situations ...

I'm sorry to hear this RC, the only thing I know from personal experience is to document everything, line up those ducks and hit 'em hard in concert with your Doctors. More waiting is becoming less of an option, I wish your Doctors Godspeed on getting this resolved so that you get the treatment that you need.

Wishing you the very best,

Dave

robertsamx · Guru

I'm going to give it a couple more days to see how#3 request turns out. The Dr's office has a guy that handles these denial's so I need to let the process move forward with them. I just can't believe they have turned me down. Time is not on my side concerning HCC's. I just don't get it. I may get a call back today, I will let you all know. thanks everyone for the support. RC

Tig · Admin

Unbelievable... I'm disgusted with the way people are treated by our healthcare system. What does it take? Seems to me the only thing important to many of them is the bottom line.

Time to take names and yell from the mountaintop. Start making these deniers answer directly regarding these ignorant decisions. I'm sure you're asking your doctors to get more involved in shaking the dust out of these people's heads. Don't give them a seconds rest. Obviously the insurance providers haven't considered anything but their own health savings account. You don't have a head cold and they need to be reminded to actually read the reports. Clearly there is a medical necessity. I'd be asking what they actually consider a "necessity" when resolving the subject of active HCC. As JK mentioned, find out whom the peer to peer decision maker was. Make these people understand that they're going to be held accountable for their decisions, in a court of law and in Olympia.

Time to start burning up the phone lines and air waves. You have every reason to be pissed. Rest assured, so am I. If I can do anything, just let me know... furious

JimmyK · Guru

From experience brother. Ask for documentation of who the Peer to Peer consisted of.

Jimmy

robertsamx · Guru

My insurance has turned me down again. they had the peer to peer and said no again. I wonder if the Dr with the insurance company who is denying me was walking around with 3 tumors in his liver would like the news?? My Dr is putting a third guy on my case to get this procedure through the insurance company, if this fails then me and ragdoll will go at it with the insurance company. They could put me off for 6 months then. If these tumors go ballistic in me in the mean time ???? It's not right, it's not fair, the insurance company's are playing doctor with me. I'm going to get pissed off pretty soon!! RC

-- Edited by robertsamx on Monday 25th of July 2016 01:14:46 PM

-- Edited by robertsamx on Monday 25th of July 2016 01:15:16 PM

Tig · Admin

Hi RC,

Grrrrrr!! I'm having a hard time hearing these stories more and more often. I am with Jimmy though, this will be straightened out when your doctors get their hands on the appropriate individual(s) responsible for this decision. However, my blood is beginning to boil. I am tired of witnessing these delays, but understand they are trying to minimize waste and unnecessary procedures. That said, there should a better method of initial denial when the diagnosis involves matters that require prompt action. I think if a Peer to Peer conference is needed, that should be instigated by the insurance company prior to denial. Patient rights should be primary.

I know you and Chris are staying on top of this and you will prevail. If you haven't already done so, I recommend you sitting down and letting ALL of your local and state elected officials know about this. Just let them know. I'm sure your health care team will get this resolved quickly, but lets get this brought to the attention of the people that can help change the system. The squeaky wheel gets the grease.....

Washington Elected Officals

RAGDOLL · Senior Member

You are exactly right Jimmy, This is just another bump in the road and it will be worked out when the peer to peer meeting happens. It's unfortunate that it has gotten this bad where the insurance company representative play this game with the doctors treating the patient. If it doesn't, however, I guess I will have to suit up for a fight. I have a few good rounds left in me. Please rest assured we are not too worried about this. Just another little irritant. CC

JimmyK · Guru

Hey brother, good morning.

I agree with Jill. To be honest it appears that expense is in fact leading to more requirements of a Peer to Peer review of things and they are moving away from just rubber stamping such procedures. In many cases that roots out some of the less required procedures as many Doctors simply don't pursue an appeal.

When a good Doctor does a peer to peer, they are almost certain to win. They know exactly why they are asking for what they are.

Case in point my recent case. The Insurance won up until my Doctor got personally involved in the peer to peer. Mine of course was at that point not real timely, as there was a gap in treatment and I opted not to take advantage of ordering the drugs. Instead we will hold that card as our Ace in the Hole if the need presents itself.

Your will have no such delay. Your team is way too good to lose this one so no worries brother.

JimmyK

Cinnamon Girl · Guru

Hi RC, I`m shocked and disappointed to read this denial letter, although from what I`ve read about insurance companies it shouldn`t really surprise me. It`s all about cost, and caring, compassion and the needs of the patient don`t appear to come into it.

You have an excellent medical team fighting your case though and I`m sure they will get round this, it`s just another hold up on the way.

Great to hear you`re enjoying the fishing and getting out on the boat, sounds like great relaxation and fun too... and that`s just what you need right now!

Hang in there, RC, try and stay calm, I know you have the strength to get through this, with your wonderful wife by your side.

Keep us updated as soon as you get any more news, and good luck! smile

Linuxter · Guru

Hi RC,

This is a tough break about now, you're right of course, the doctors will do the dance and get 'er done but the wait is SO unnecessary and in fact exacerbating the problem(s). All so much the way the insurance system "Rolls" and it's so messed up.

Having the fishing, the getting out and enjoying life while they (everyone involved) play their stupid games of weasel and cornering the weasel and wasting precious time and resources in the process until this needless micro battle plays out is good. If you can get some (any) distractions from all this, which you yourself have very little control, all the better my friend.

I think realizing that this is what happens every step of the way and being able to view it all objectively probably helps but that doesn't make it fair at all. I commend you on rolling with the constant punches, this too will be resolved and/ or another way will be found. These doctors have already shown that they will get you through this and we're here and aren't going anywhere, you have your wonderful wife and in spite of all of the above you're going great and coping well (not easy at time but you are becoming a master of it, my friend).

Glad the fish are biting! Hang in there while the dust settles, you'll get there, watch out for monkey wrenches, they have a way of getting dropped into the gears and slowing down the mechanism we call the medical system but we know how to jostle them out via knowing the right buttons to push and in many cases just waiting for them to eventually clear themselves ... all precious time ... all the more reason to just enjoy life, put your faith into the excellent team(s) you have working the issues, you've got 'er RC ... glad to see ya not letting these bumps in the road get ya down, you WILL get down that road and others along the way and we'll be here to assist as we can the whole time. Now get out there and I can't wait till I hear you're hittin' the Salmon. smile

Dave

wendyo · Guru

Praying for you and that the peer to peer review is a success.

Keep fishing RC!

Loopy Lisa · Guru

robertsamx wrote:
Just a little up-date. My insurance denied my ablation!! I will quote the denial below.
Dear RC, After a doctors review, we are unable to approve the above service(s) because the submitted medical records did not show that
The tumors in your liver can not be removed by surgery
This treatment would not cure you of your disease
As a result, the requested services are not medically nessessary
Dates denied 7-5-2016 through 1-5 2017. End of quote
I will bet you the dick head that denied me has never had a tumor Camping put in his body,let alone three tumors! My Dr and his staff have already started the peer to peer consulting process. This is the first bump in the road with the insurance co. My team will get it done for me, it's just giving the tumors more time to do there nasty thing. Fishing has been good, cought 4 walleye yesterday, had a good quiet alone day on the boat. RC

OMG that is the most ****ty and uncaring response I've ever read! I don't see their justification for not giving you what you need. I am a bit stunned and upset for you. I really hope this will be re-reviewed. I admire how calm you are, I'd be throwing a storm in a tea cup!!! I really hope this is changed soon. I really can't stand people making monetary decisions where health is concerned. Until any of us are dead, we deserve to be treated! Hugs x

robertsamx · Guru

Just a little up-date. My insurance denied my ablation!! I will quote the denial below.

Dear RC, After a doctors review, we are unable to approve the above service(s) because the submitted medical records did not show that

The tumors in your liver can not be removed by surgery

This treatment would not cure you of your disease

As a result, the requested services are not medically nessessary

Dates denied 7-5-2016 through 1-5 2017. End of quote

I will bet you the dick head that denied me has never had a tumor Camping put in his body,let alone three tumors! My Dr and his staff have already started the peer to peer consulting process. This is the first bump in the road with the insurance co. My team will get it done for me, it's just giving the tumors more time to do there nasty thing. Fishing has been good, cought 4 walleye yesterday, had a good quiet alone day on the boat. RC

JimmyK · Guru

Your attitude plays a big factor in success and yours is fantastic.

Jimmy

wendyo · Guru

And the one procedure is free since they missed it right

Just glad to hear the plan and that you sound upbeat. enjoy your game today RC.

Tig · Admin

Thanks for the update RC. It really sounds like you have a great team and an even better plan. One day at a time and attacking one tumor at a time makes perfect sense.

Now get out there and enjoy that round of golf! Chasing that little ball around is good for something. I never quite figured that out! Good excuse to enjoy the great outdoors! Have fun!

robertsamx · Guru

Good morning you all! Thanks everyone for caring. Met with the I/R Dr yesterday, that went well. They did a U/Sound and confirmed the miss In section 5. They took a look at the other one in section 6 and said they could get it with microwave. They are going to biopsy it, and then at the same time microwave it and microwave on the way out to kill any tumor seeding. When the biopsy results come back, if it's confirmed HCC then we go after the one they missed in section 5 with concentrated alcohol ablation. If section 6 is not HCC, then we let section 5 grow to 2cm then get it with alcohol ablation.Its all about building a MELD score. I understand now what my main liver Dr is doing, he"s really looking out for me. I'm compensated so well, and my LFT's look so good that makes me a very good candidate for liver transplant. My bigest problem is that I make timors, and that's the problem. The chirross is pretty bad, and that results in my liver making hcc's.Some people just make tumors and I'm on of those folks. I'm SOOOO glad the put the brakes on the triple TACE procedure. We are going to take it all a little slower, get them one at a time, and build that meld score.The one in 4-a is quiet for now, that will be the one we watch for a while then get it after we get the one in section 5. Size of tumors in me are. Section 5=1.6 cm. section 6=1.5cm section 4-a=1.2cm. Section 5 is l-rads 5, section 4-a and 6 are l-rads 4. It also seems that there are a few other spots of interest that come and go??? It's all in the interparation. Should have the procedure done end of next week or some time the week after. They said they would put me compleatly out for the procedur, I said GREAT. I have a tee time this morning at 9:48- got to go now. RC

Linuxter · Guru

Hey RC,

Glad they found all that, getting your gall bladder removed may help you feel much better. Does sound like you are feeling better in spite of all, good to hear.

As always, you are in our thoughts and prayers and on your way to feeling WAY better all around .... smile

Dave

Cinnamon Girl · Guru

What??? They missed it completely -- oh!! confuse You`re obviously a very `interesting case`, RC! smile

Sorry to hear that, but I`m so very pleased you`ve been getting out fishing and taking your mind off it all... good for you!

I must say you really are an inspiration the way you`re dealing with this ongoing situation, RC.. It`s great to hear how well you`ve recovered from your op, and you must feel much better now you`ve lost 16 stones! Lol

Get out there and enjoy life -- "fun, fishing, golfing,and fast cars" -- that sounds like the best self prescribed therapy for you right now! Good to heat they left your sense of fun and zest for life intact, they can`t take that away! smile

Canuck · Guru

A bag full of stones? Thought it was just thugs who walked around with those.

Well! - unruly GB B-Gone then. One less thing, literally. Done - checked off the list.

Knew a guy once who had his doc save his stones for him, in a jar, for posterity (for future re-use), he was going to set one of the big ones in a neat macabre necklace or ring he could wear, I guess he was kind of "attached" to them after producing and packing them around inside him for so long. He figured they must still have some good purpose, after all he hadn't gone to the painstaking trouble of creating them for nothing, waste not - but, they stunk so bad that the jewellery making thing never happened - he settled on letting them adorn the inside of a jar, which he would bring out to admire and show off. They were a weird color anyway, how could you possibly accessorize with that!

Don't even want to think about sludge.

What kind of fish, and do you really eat them? My friend HATES fish, he would NEVER eat one, but is in LOVE with fishing, and does it all the time! smile C.

-- Edited by Canuck on Saturday 2nd of July 2016 11:00:06 PM

robertsamx · Guru

My gallbladder had 16 stones up to one centimeter and sludge in it. 16 CM=6.3 inches--I was walking around stoned all the time, no wonder they wanted it taken out? LOL! RC

-- Edited by robertsamx on Saturday 2nd of July 2016 11:29:42 AM

JimmyK · Guru

robertsamx wrote:
I'm back on my feet, post op belly is good.
Way too much focus on HCV-treatments-and all the S/X that go along with T/X. I'm ready to have some fun, fishing,golfing,and fast cars! RC

NUFF SAID!

Sydhanrahan · Guru

Hi RC,

you know me. I'd be yelling what were those bastards on?. Don't they spend their whole working lives detecting the difference between a Good old Hep C liver lump and a HCC? But I think your attitude of having faith in them to do the best job possible serves you better in the long run. And yes, doing the stuff you love to do and not allowing your spare time to be filled by doubts and fears sounds like a good plan too.

If this is the treatment train then you're the guy with the indoor putter in the aisle and your can of worms squiggling happily in the seat pocket in front of you. I'm probably sulking in the seat in front of you, unaware of the worms and just quietly working on increasing the size of that duodenal ulcer I'm nursing.

Take care.

Syd

biggrin

wendyo · Guru

RC I am so glad to hear about the good times you are enjoying. The doc and treatment are going to progress exactly how it is meant to and I have have to have faith in the man above on that. It is always my/our responsibility to do the footwork and leave the rest to Him and you have. Enjoy the weekend

wendy

Canuck · Guru

Oh brother! A little more to the left eh? What?!

Well! It was a good idea to hang up the "gone fishing" sign then.

Ya me too, vaguely wondering whether your GB was turfed simply because it is not needed and inconveniently in the way, or whether they did find it tired and full of stones/sludge/etc.

I haven't been fishin for DECADES - would kinda like to again - no excuse, lots of opportunity, just never seem to get there!

Golf, um, nah, not so much, never tried it.

Glad you are hoofing it around on both feet. smile C.

Tig · Admin

Hey RC,

Are you kidding me? They missed it completely? I'm sorry to hear that buddy. What does that mean as far as the schedule is concerned? I hope that ramps it up a little bit. I would've thought they could've used an inter operative ultrasound or something that helped to keep it visualized during the ablation. It's hard to say, but you mentioned having a lumpy, bumpy liver. At least you got rid of that sick gall bladder or was it? I know they had to remove it to get to the tumor. Geez, Louise!!!

I'm thrilled and envious of your fishing opportunities! That sounds like some real fun!! It must be perfect weather right now. I've been watching the weather up there and it's a lot nicer than this steam bath down here, ha! I haven't golfed, so chasing that little ball around is all yours. I got hit by a golf ball when I was a kid. Broke my elbow and after that I lost interest in chasing the ball around. I always felt like a target after that, lol! I enjoy watching the professionals play though. We've got some good golfers here on the forum. Malcolm and Matt just love it. Now we have you.

I would love to help you with the hot rods though. I'd enjoy just taking a tour of that workshop of yours! Maybe mess it up a little and see how long it took you to make me clean it up! I doubt I could do such a thing though. So what kind of wrenching are you planning on starting? That'll be fun to watch.

Alright, you keep us updated when you know something. If they come back with a high enough MELD score, perhaps you can get this show on the road faster. Good luck Brother...

robertsamx · Guru

Hi All--- UPDATE--- Some members of my team got a little ahead of the rest of the team?? So the Triple T.A.C.E. I was going to have this next Friday is postponed. Instead I will go over to Seattle this next Wednesday to meet the Intervention Radiologist people to put together a plan of attack for my 3 HCC tumors. The one they tried to microwave ablation on 5-19-16 is still there? They missed it !! Completely missed all of it!! I have a good team, it's just that it was in a spot that was difficult to get at and my liver is just really lumpy inside. From now on its about building a MELD score.Im feeling well, I have been walleye fishing 2X, and golfing 2X in the last 1.5 weeks. I'm back on my feet, post op belly is good.

Way too much focus on HCV-treatments-and all the S/X that go along with T/X. I'm ready to have some fun, fishing,golfing,and fast cars! RC

Linuxter · Guru

Yes Canuck,

Tigs current avatar is what the Hep C Virus looks like under the electron microscope ...

scary hun! Whoda Thunk?

D

Canuck · Guru

OMG tig,

I've been waiting, and waiting, and WAITING for that blurry smoke screen from your avatar to clear ... we were SO NEAR getting to see the glint of your steely eyes, that winning smile, allllmost, so close, had been REALLLY looking forward to studying past that fog, to see how you made out with that hair regeneration thing, and NOW!!!, just about when the curtains were to finally clear for the big reveal, humph, dragon art, anti-climax, oh well, nice art, but darn it all, we had a pool going, there were some really good odds too, and now ... you've gone and spoiled it all. Please reconsider going back to the clearing tig avatar. People are resistant to change. wink C.

Tig · Admin

Hey Canuck,

Regarding the three choices, you can never have too much information when compiling a battle plan! One provided a little more than the ones before it!

RC,

If you were referring to Zepatier as the Abbvie combo, it's Merck that makes it.

robertsamx · Guru

Sov-vel-vox. That's my ticket. Just need someone to ticket me and then punch it! I'm so partial to Gilead drugs. I think I will ask and look at the Abbvie stuff. RC

-- Edited by robertsamx on Sunday 26th of June 2016 06:20:06 PM

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