Hep C Discussion Forum

Tig · Admin

RE: The HCC Treatment Train

wmlj1960 · Moderator

Photo flipped. wink Wow, that ride is bad ass!!! Specs say that the factory PCM setting limits the top speed to 155 MPH. I imagine that's going to piss you off on a daily basis Robert. LOL biggrin

robertsamx · Guru

Hi all, I got the car Saturday. I can"t beleave its mine!! I have washed it twice, have about 300 miles on it, and its a hand full to drive!! RC. TIG--can you flip my photo ?

wendyo · Guru

toasted carmel; that sounds yummy!

If anyone deserves that gorgeous hunk of metal, you do RC!

Tig · Admin

Man O Man! I second that WOW

JimmyK · Guru

robertsamx · Guru

I"m getting a Lexus LC500. RED with TOASTED CARMEL interior. With every option available-- even the carbon fiber roof!! I will put up pics when i get it home. Below are pics off the internet. Thanks everyone for all the kind words, I"m gona make it through all this liver stuff and drive the wheels of my Lexus. RC

JimmyK · Guru

You have no idea how pleased I am with this.

You remain my absolute Favorite Warrior. What an inspiration to us all you continue to be.

JimmyK

Tig · Admin

Hey RC,

Good news, buddy! I'm glad you finally got that meld score where it needed to be. As hard as it has been to get it there, they should just send a Limo, pick you up and escort you in when the time comes to replace the old shoe leather. Keep your eyes and ears open for the Transplant Train, we'll have to get it moving your direction!

Enjoy the new car, I remember you mentioning a decked out Lexus at one time. Is that the car you speak of? That's going to be a sweet ride! Is Chris going to let you tinker with it? I know how you get when you have a car in your custom backyard shop! Remember, it'll be under warranty and they might frown on you putting another Turbo in the trunk!

Good luck, Brother and thanks for checking in...

wendyo · Guru

Glad you are on the list RC and here's to you staying there! Tell us about the car............

Canuck · Guru

Hey RC,

Well magic man, here is me with my fingers crossed that this MRI finds zip. Sorry about all the delays and the waiting. Nerve racking? - that's understated! How many times have we all had to remind oursleves "it's a process", meanwhile we go nuts waitin, waitin, waitin! TG you have the patience of Job and the strength of Hercules! It's gotta go good this trip - I will it!

Feels and sounds weird to be congratulating someone on a 28 meld score ... but , you know what I mean! Closer now, to a healthy liver.

Let me get this straight - that TACE in Feb, was that the one where they put in the magic "bead"?? So, after it was in, did you feel anything from that bead?

My partner just had an PET scan done (chest is the focus), I never had a blow by blow description of this procedure before, I didn't get to see anything of course, but it sounded interesting what with the sugar dosing, and then assorted fluids, and the way they hog tie you and pad you into place for the imaging!

My partner, always a mind of his own, was told to stay put in his jammies, in this special "waiting" chaise-lounge chair after they had infused his arm with all the appropriate liquids, trouble was he had been doing as he had been told, had been cooperating with infusing himself with all that copious water they recommend you drink the night before and morning of, he suddenly has to pee. They had attached a call bell to him (their soft restaining device), he simply detached the "detection" device from his gowned chest and was half way out the door in search of a loo, when he realized the call bell was falling to the floor and was ending up landing itself under the wheels of some IV trolly, he hurriedly runs across the room to retrieve the fallen thing from the floor and to toss it back up on the bed, it caught on something (stuck fast), he tugs on it and tips the whole IV pole stand over from it's wheels wth a great crash and clatter and set off the alram - runners come in, (expecting the worst) only to ask why he did not just "use" the call bell as intended. They get it all sorted and he gets to go to pee. If they give you a call bell, don't use it the way he did, they get all excited.

How are the toes feeling, do you think that surgery worked OK? Tell us what else you two have been up to. Ok, OK ... I'll bite ... what new car??!! Love C.

robertsamx · Guru

Hi all, Im going back the end of this month for a MRI. Hoping it comes back clean. My meld went to 28 on the 12th of this month. That puts me up the list- I could get a call anytime !!

I can"t have one tumor over 5cm- kicks me off the list. Or three no bigger than 3cm-kicks me off the list. My Dr"s are really watching me. I really hope this next MRI is ok. They have found things and then when its time to ZAP them they cant find them? That has only happened twice, but it's nerve wracking. On a good note- my new car should arrive Monday. RC

Cinnamon Girl · Guru

Hi RC...

Well, what a surprise, and what good news! Sounds like the chemo just took longer than expected to do the job. Whatever happened, it`s great to hear such positive news and you be so relieved!

I`m so pleased it`s all going well and hoping for more positive news after your next MRI.

Yes, it is a waiting game, but try to relax and have a break from it all... go fishing or whatever makes you happy!

Take care, and love to Chris... smile

Tig · Admin

Wow... I'm dumbfounded. I bet you are, too. Why are they making you wait a month for the MRI? Whatever the case, I like knowing they couldn't find it! I'm going to cautiously celebrate that and hope the entire process continues in a positive direction. Fill us in with any and all the tidbits you can share!

wendyo · Guru

Knocked out for nothing. Well a good sleep. I don't know if I'm happy they couldn't find it or not? Hmmm But I like your line of thinking RC about the meld score.

Killing Joke's song The Wait, covered by Metallica is your theme song:

https://www.youtube.com/watch?v=e8t2dJZRRW0

robertsamx · Guru

Hi all, Its been a week since the attempted tumor ablation-- note the wording (attempted). They knocked me out - whizzed me over to the CT room and looked for the tumor and couldn't find it?? They tried U/S and still no sighting? They introduced 100cc contrast and looked again with the C/T and could not find the tumor? This is the one that they did the TACE chemo on 16 weeks ago. They think that it just took the chemo longer to shrink up the tumor, because 1 month post the TACE it was still there. Anyway i go back in one month for a MRI and we will go from there. He looked for the other tumor and couldn't see it either. I think that there is so much scaring in my liver that it makes it tough to see anything. They have seen one thats 4.5 cm and cant clearly see or find it?? On a good note, I think my meld score went from 8 to 28 after the 6 month waiting period. (Required 6 month wait for the points with a HCC diagnosis). Its all just one big waiting game! RC

Tig · Admin

Hey RC,

Okay Brother, it's been a few days and I haven't stopped thinking about you and Chris. I hope the procedure went well and as anticipated, which is decimation of that beast in Section 8. (No wonder Clinger had such a difficult time with that!)

Check in when you can and know we're all here and always on your team! Time for that train to pull into the station and this time they can keep the baggage.... Take care my friend!

Thumbs Up.png

Cinnamon Girl · Guru

Wonderful new, RC, I`m so happy for you!!

What a relief this must be... and how great that you have a doctor prepared to fight for you all the way and not give in!

I`ll be keeping you in my thoughts... onwards and upwards!! smile

wmlj1960 · Moderator

That's the kind of news we like to hear. Yes indeed RC, full speed ahead! wink

Canuck · Guru

Thank god for fridays! About time! Talk about fighten mad, blast em good RC! Good journey there and home again lickety-split. We'll be holding the other end of the fort til yer back. Love, C.

JimmyK · Guru

Oh that is an answer I have been looking for!

JimmyK wink

wendyo · Guru

Full steam ahead!

Observer · Guru

Oh thank goodness!!

I hope all goes well and they are able to completely blast that sucker!

I will keep you in my thoughts on Friday.

Alison

Tig · Admin

That's fantastic news, Bob! Big sigh of relief and joy at the same time. I'm glad that your doctor gave them hell. It's really hard when you fight with facts and from the high ground. I think they finally got it... [eyeroll]

We will be waiting right here for the good news, don't make us wait too long to hear from you!

Get Er Done! Good luck, Brother smile

robertsamx · Guru

Hi all, I got the good news this morning- after (2) reviews and 9 weeks I was approved for the micro-wave ablation. Im going over Thursday and will have it done Friday afternoon. His report (the Dr who did this review of my case)was really harsh towards the insurance co. Anyway its full speed ahead!! Thanks everyone for your kind words and support RC

-- Edited by robertsamx on Wednesday 24th of May 2017 10:29:22 PM

Canuck · Guru

Soooo glad to hear from you RC!

Man, yer one tough SOB! Keep doing it!

Insurance companies need conscience as well as common sense. Bastards!

You just keep on being the biggest, badists and bestest of them all! You're gonna win (I promise)!

Keep us posted, you know we hang on your every word - as your other "home" team, you already know we are always here for you and Chris. No one could be more on your side than we are.

Love, C.

wmlj1960 · Moderator

Great to hear from you RC!!! I wish the news was not about your insurance company dragging their feet because I have a hard time not getting started bashing away also. But the squeaky wheel gets the grease so keep on them! wink

You have several cheerleaders here who care about you and are looking forward to the day you come out of all this stronger and healthy. So please keep us posted on your future victories over all this. smile

-- Edited by wmlj1960 on Wednesday 17th of May 2017 01:03:26 PM

JimmyK · Guru

Greetings RC, great to hear from you.

My prayers remain that things will work out. It is sometimes hard to remember that answers come at the right time and not necessarily when we would like. But my faith remains and I believe God is listening.

I recognize not all here share my beliefs. I mean no disrespect by stating what I believe to anyone.

RC please stay in touch.

Your Brother

JimmyK

Cinnamon Girl · Guru

Hi RC,

I too have been wondering how you`re getting on, and I was pleased to see your post.... but so disappointed for you that you`re been forced to wait for the next procedure. It really doesn`t seem to make any sense at this point with your medical history, and I`m sure you and Chris must be feeling so frustrated with the insurance company. This is so disgusting!!

I`m not around here very often these days, just getting on with my life, but I think of you both frequently.

Wishing you all the best luck in the world with this... let us know when the time comes for you to head to Seattle, hoping it will be sooner rather than later! smile

wendyo · Guru

you and Chris are always in my prayers RC!

Observer · Guru

Oh Robert,

I was thinking and wondering about you and how you are. I'm so sorry that little #%}^*\ I mean..devil is still in there.

I can't believe you are being made to wait for the ablation

furious (emoticon of insurance company)

Do please let us know when you are heading to Seattle.

Alison

Tig · Admin

Hey RC,

It's good to hear from you, Brother! I want to think someone at your insurance provider will have a quick blast of common sense and get you approved. Of course I'd want to talk to the person that makes the decision, but realize it might be your doctor doing the talking on your behalf. Keep on them, RC, like a wet blanket.

One day at a time. Give my best to Chris, we miss her, too! I hope you keep us updated. Inquiring minds need to know...

Good luck in Seattle!

robertsamx · Guru

Well I had the TACE procedure done Feb 8th, went back six weeks later and had a MRI and it shows the little devil is still there. So the plan was to go back and have a micro-wave ablation done ASAP according to my Dr. Its now been 8 weeks waiting for insurance to ok it. So I've waited 14 weeks since the failed TACE. I was turned down twice by insurance? Even though they have already authorized 3 micro-waves? I dont get it, and it is not my intention to start a insurance bashing in this threa, so i will leave it at that.I was told yesterday that the pre-auth should show up soon. My meld is 9, the first of June it will go to 28- and i should be well on my way to a transplant offer. Its hard waiting-too much time to think of all the stuff that goes along with a L/T. I have been off line a couple of months- sorry about that!! I will let you all know when im heading to Seattle for the micro wave on segment 8. RC

Canuck · Guru

I agree!

Seek and destroy!!

Kill, kill, kiiiiillll!!!

Call out the stealthy bead weaponry.

Get 'em!

Good Wednesday.

Love, C.

Tig · Admin

Hey, there you are! I'm so glad you checked in, RC. I knew you were busy with this, so I'm glad to hear you've got a good game plan. You do seem to be a prolific tumor maker. That's what your doctor mentioned some months back. Do whatever it takes, cook them or kill em with TACE, just show no mercy.

I'll be watching for some good news. Be sure you let us know how it goes. Good luck my friend, lets take out Segment 8! That segment is sounding more like a Section 8! Seek and destroy...

robertsamx · Guru

Hi All I got a call a couple weeks ago and the team had my last MRI re-interpreted and saw that there is a tumor the size of a large marshmallow 1.6cmX1.6cmX1.4cm in segment 8. this is the tumor that has been hard to see in MRI--CT--US. Last time i went over for microwave ablation they spent 45 minutes trying to find this one in seg 8 And couldn't find it.

So I'm going over this Wednesday for a TACE procedure. They will TACE the big one in segment 8 and there is also a smaller one very close to the big one in seg. 8 that they may get with the big attempt, or they will try to get the little one with a different vein? The other new tumor in section 3 will half to wait its turn for treatment, they dont want to mix microwave ablation and TACE at the same time?? I'm ok with that! I have explained the TACE procedure down earlier in this thread. What's spookey about it is the fact that they will use chemo soaked beads injected into the whole segment 8 and that will kill all of section 8, at this point i need all the segments I can keep!! Remember that each microwave ablation kills a section of the segment its found in. In my case each ablation has taken out about 2cmX2cm I will spend the nite in the hospital this time. I will let you all know how it goes this weekend. RC

-- Edited by robertsamx on Monday 6th of February 2017 09:21:18 PM

Tig · Admin

Hi RC,

Good to hear from you old friend! One of these days soon you'll have all of this behind you and the Salmon will run scared! I'm glad your docs remain on top of this. I like the way they all brainstorm each move. Hopefully there will be some answers coming soon. I know you're ready to go.

Say hi to Chris for me and stay in touch. It has been quiet here on the forum, so I'll approve your medical leave! Please let us know what you find out. Take care of business, Brother and then get ready to do some Dragon stomping!

Canuck · Guru

Hey, there you are toeman!

Well, glad to hear the scopes went well. EVERYTHING seems to coming for you in "bits and pieces"!! But glad your esophogus/stomache/upper gut was clear, we don't need anything else, like varices for instance, and glad you got the lower bowel polyp bits nipped out.

I had a friend once who had real irksome bowel trouble, they only found the tiniest polyp when they did her colonoscopy, and it WAS just the tiniest little thing, but somehow that tiny little thing cause her no end of real greif. She never looked back after it was nipped out, all prior discomfort resolved, funny that, that sometimes the tiniest blip can cause that much noticable discomfort. So, I am glad you got your little polyps trimmed, just so the prep and scope efforts weren't a complete wasted effort. But NO varices is a great big huge bonus and a very good thing to know! Maybe you have just saved yourself some future bowel polyp grief by finding and nipping them out now. Isn't it true that they can see varices on ultrasound and via CAT's?? My last ultrasound lady said (when I inquired) that " oh yes, I would be able to see esophegeal or gastric varices via utrsound if they are there". I guess eyeballs (via scoping) is better than echos and images?

How are the toes/foot/hardware, how are both your feet doing actually!? Has the treated one stretched back into shape again?

How are you holding up on the blood sugar front, no worse I hope.

Did you (or will you still) get an explantion from your docs on the rationale of whether to treat HCV prior to or after transplant??

I am of the mind that (the next break and lull you get) in the bits and peices, that you two should go off somewhere sunny again (and maybe take the rest of us with you please?)!

Glad to hear your voice and update again. biggrin C.

robertsamx · Guru

Hello all, Its been a while!.. I had the upper scope done and there are NO VARICES. The lower scope required a couple little polyps removed. No big deal!! I went in for my 3 month MRI follow up and they found a new leasion in segment 3, its just under 1cm, and the leasion in segment 8 that they have had a hard time finding in the last two ablation attempts has grown a little and they are now calling it L-RAD 5 (confirmed HCC). The leasion in segment 3 is L-RAD 4. (Probable HCC). My Dr and the Radiology team will talk and see what's next. The fact they cant find the one in segment 8 to ablate makes a TACE procedure seem like the only way to get the tumor in segment 8. So far they have been successful with microwave ablation, but the leasion in segment 8 is playing hard to get!! With a TACE procedure they inject a chemical concoction just before the leasion, plug the vein (cutting of the blood supply to the leasion)and that kills the tumor beyond the plugged vein!! I will know more next week after all the DRs talk. Thats all for now. RC

Canuck · Guru

Hey Toe man,

Good to have a report on the state of things, and glad you two got to Ha. How IS that bionic toe holding up anyway? I think hot, soft sand is just the ticket for birthdays and for toes! Good you are getting all the work-up boxes ticked, but, that is the hard way to drop a pound (that bowel prep and all that NPO stuff), I think (after Jan) maybe another nice jaunt to hot sand would be in order! It's times like these when I truly wonder why do I live where I live, been about -10 to -19 C at times!! Yuk. If you go South again, pleaaase, take all of us with you. So glad to hear from you and to know you are both doing good. Well!, there's one test they mighta skipped, they coulda just asked the rest of us!, we already knew you had a strong heart! Good you re-set because I think 2017 IS going to turn out be a good year for you! smile C.

Shadowfax · Guru

Happy belated Birthday and your news sounds great. Things are moving in the right direction for sure.

I would also ask for a reason to why tx after transplant but I am sure they have a good reason.

Please do keep us updated and it sounds like your trip was great.

Cheers.

SF

Tig · Admin

Hey RC,

That's a great update! I'm not so sure you will enjoy the prep for the lower looky loo however! I have always dreaded the "Prep"... Have plenty of reading material ready, tennis shoes and toilet paper at the ready!

It's interesting to see how they're managing this and I like how they are mapping out the strategy well in advance. I have to wonder if they aren't waiting for the healthy liver before administering the DAA's. The latest research puts into question the use of the new DAA's in an already HCC compromised liver. Let us know your docs reasoning when you dig it out of him/her. We want you to have every advantage available as you leave the HCC station behind. This is an exciting and hopeful time for you, Chris and your family. That "family" includes everyone here, just so you know!!

I think I can speak for everyone when I say I wish I could take an impromptu Hawaii getaway with my significant other. What a wonderful way to celebrate the BIG 60! Happy Birthday Brother, I just went over that hill too! I'm grateful we made it, lol! Lets all get healthier and plan on Seven Oh wink

Best to you and Chris, my friend. Please keep us informed!

wendyo · Guru

What a fabulous birthday present you gave yourself! I am proud of you for doing something nice for you (and Chris). To say you have had a lot going on is an understatement. So today/tonight is prep day for you, no fun but necessary to get you where you need to be. The beginning of hopefully the end. Keeping you in my thoughts and prayers as always!

wendy

robertsamx · Guru

Hi All, its been too long since my last post. here comes the update!! I had the heart cath the last week of November- That went well, the results show a strong heart, a compromised aortic valve- but no blockages!! So the heart is A-OK for now. The transplant team wanted to make sure they are putting a good liver in a stable body. This thursday im going in for a colonoscopy and a Endoscopy, they will knock me out for this procedure. The transplant team want to make sure there no bad stuff going on down there and its also a good idea to check for varices in esophagus and stomach. Lots of blood work needless to say! I got a letter from Swedish Hospital Seattle saying i was placed on the Transplant List. My meld score is 8. With my HCC diagnosis, the meld score will go up 28 points after a 6-month wait period. That's when the clock really starts ticking in my favor. I just need to take care of myself, eat right and keep this body moving and ready.My big battle now is my type2 diabetes. Im working on that, a cirrhotic liver doesn't lend very well to sugar controll!! The second week in January will be 3 months post my last ablation, so im going over on the 16 January for a MRI to see how things are going.I will have a meeting with my Dr the same day i have the MRI, and Im going to ask about HCV Treatment. They want to wait until after transplant, but I want it before. The Dr has a reason for waiting until after transplant- i think i need an explanation!

There has been so much going on that Chris and I descided we needed a little break and get away from house, business, family and everything.....so out of nowhere we just descided to go to Hawaii, so we spent 11-4 through 11-16 on the KONA COAST. We had a great time and I managed to turn 60 that week. Best thing we could have done.... it really helped to rest on the beach for 2 weeks. Came home a new person. We both hit the re-set buttons and are ready for what 2017 has to offer! RC

wmlj1960 · Moderator

"Cancer Free". Wow, the sound of that has a great ring to it. I'm really happy for you and this latest update RC. Congrats to you, Chris and your medical team for all the success so far and I'm sure looking forward to the day in the near future when you post your results as 'Cancer Free', 'Cirrhosis Free' and 'HCV Free'. Keep up the awesome work!!! smile

Cinnamon Girl · Guru

So good to hear you sounding so positive, RC, but then that`s something we`ve become accustomed to with you! smile

Excellent news that both those tumours were indeed eradicated, thanks to the supreme skill and dedication of your medical team, and to be able to say "cancer free" now sounds very good to me!! Must be a huge relief to you both, to say the least, and I`m very happy for you.

So now onwards with the next phase... taking the best care of yourself ready for your well deserved new life with a new healthy liver!

In the meantime, get in some good fishing, relax and enjoy life!

And don`t forget to drop in with updates now and then and let us know how the "pokes and prods" go... All the best of luck, sending love and hoping for all good things to come your way...

(Ps - Sorry to be so late to respond... just got a lot going on at the moment!)

Sydhanrahan · Guru

It's so heartening to see your post Robert and to know that the cowboys still in the saddle, still unbowed, just waiting for a few more pokes and prods to make sure that sloppy pink organ they find for you is going to be filtering out bad stuff for the next forty years.

seriously, you are certainly one brave, patient and uncomplaining specimen. Glad you have a bunch of new toys to play with and look forward to your next post.

hugs, Syd

robertsamx · Guru

Thanks everyone!

Tig: i broke my favorite rod last year (lamaglas g-1000 Keni Special. Med-Heavy ). Sent it off for repair and put a new shimanno reel on it. Have cought 2 nice fish on it so far last week. 22# and 18#

Wendyo: this stuff gets confusing, I explained it the way i think I understand it. thanks for looking in on me!!

p-17: Patience's is something soon learned with the diagnosis of HCV. Especially when you throw in a couple clinical trials. Everything moves slow, its not like they found you bleeding to death on your shower floor!!After 35+ years of this virus, i look forward to the new feeling with the new to me liver!

Jimmy K: I dont feel like a warrior. Thank you for the kind words, im just doing what needs to be done to get this liver disease behind me. Chris has been my shield all throughout this battle, I couldn't have gotten this far with-out her. she's a true warrior!!

Hi C :) They want to do a colonoscopy. So with the two heart procedures and the lower colo that would make it 2 more pokes and one long prod!!!!! Glad to know your going for your blood draw V/L I hope you get your U/S. This forum wouldent be the same with out you, thanks for all your input.

Cheddy, When I first started out looking to treat the HCV I was determined to beat this thing. With gs-7977 (sofosbuvir) in trial's- it seemed like a long awaited easy cure. No interferon, just this extra drug called ribavirin along with the new wonder drug gs-7977 and in no time its all behind me? WRONG. As my treatment's unfolded, so did this nasty little thing called HCC. Sometimes I look back and think I waited too long to get treatment, but then fast forward to today, after the treatments i have done and I see that the old treatments probably would not have done the job. so i'm right where I am--Determined to get it all behind me!!

Thanks everyone! RC

Tig · Admin

Good news, Bob!! I have also been wondering how you've been progressing. I like the direction everything is headed and a Sov/Vel/Vox treatment is your ticket to SVR. Each report you share makes me more confident. I'm happy for you and Chris, you both so deserve this good news. I think you deserve that new rod and reel you've been looking at!! wink

wendyo · Guru

Glad to hear things are progressing RC. And thanks for explaining in a way we can understand. I admire you and Chris and pray and think of you all often.

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