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Post Info TOPIC: I guess it was to good to be true.


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Isiscat2011 wrote:

Mike, my understanding is that is IS possible for a decompensated liver to become compensated assuming whatever was causing the assault on the liver is stopped. Your liver disease was coming from 2 primary sources: alcohol and HCV.  I think liver improvement is possible where a person entirely stops drinking and is successfully treated for HCV.  

I'm sure this depends on the level of decompensation but I have read in forums where Hepatologists are discussing this (during one of my eavesdropping recon missions-lol) and there appeared to be a consensus that even a decompensated liver can improve clinically.  In the meantime, sx of decompensation can be treated.  Your situation may not be as bad as you think. 

Another thing to keep in mind is that there are drugs in development that will be able to improve liver fibrosis and liver function.  

Have hope, Mike.  You are doing everything right.  The results are being reflected in your improved liver functions as demonstrated by your lab results.  It is a slow process but it is not written in stone that your options are to have a transplant or die of liver disease.  

 



-- Edited by Isiscat2011 on Wednesday 1st of October 2014 12:52:22 AM


 I'm not very good at researching like you are so the only information I've been able to find has always said no. But I've been searching for a couple of hours and found hope in question 3 on THIS PAGE.

I would think that if I can acheive SVR then based on my compliance example so far, I would be a possible candidate for doing this. I don't want to get any empty hopes going but if this out to be true, then it will be very very good news!!!



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60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

Mike

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Not to be a downer Duane but this read was not very encouraging on HCC reocurrence and rRFA prognosis....

http://onlinelibrary.wiley.com/doi/10.1002/lt.23605/full

Think I'll  read a comic book

 confuse



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53yr M 1a acq 12/83 cirr pre tx MELD 17  tx nv diag 1/29/12  tx S/O 3/5/14  trans list.

EOT 5/28/14 UND 6/12/14 SVR 8/29/14 MELD 14 dx HCC 9/5/2014 tumor ablation 9/24/14

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Mike, my understanding is that is IS possible for a decompensated liver to become compensated assuming whatever was causing the assault on the liver is stopped. Your liver disease was coming from 2 primary sources: alcohol and HCV.  I think liver improvement is possible where a person entirely stops drinking and is successfully treated for HCV.  

I'm sure this depends on the level of decompensation but I have read in forums where Hepatologists are discussing this (during one of my eavesdropping recon missions-lol) and there appeared to be a consensus that even a decompensated liver can improve clinically.  In the meantime, sx of decompensation can be treated.  Your situation may not be as bad as you think. 

Another thing to keep in mind is that there are drugs in development that will be able to improve liver fibrosis and liver function.  

Have hope, Mike.  You are doing everything right.  The results are being reflected in your improved liver functions as demonstrated by your lab results.  It is a slow process but it is not written in stone that your options are to have a transplant or die of liver disease.  

 



-- Edited by Isiscat2011 on Wednesday 1st of October 2014 12:52:22 AM

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Isiscat2011 wrote:

Hi Mike:

I'm not clear on why you are so certain you will need a transplant.  My recollection is that your blood labs have been in normal ranges for the most part; including your platelets (naturally your liver enzymes have been elevated).

My understanding is that you haven't had an endoscopy and I'm not sure if you have ever had a biopsy or even a Fibroscan.  You had an emergency room procedure, where a small amount of fluid was drained, and apparently a dx of ascites was given.  But that was also during a time when you were drinking quite heavily as I recall.  Since then you have been completely clean.  I'm not sure there is enough information to conclude that a transplant is inevitable.  I am just going on what I am reading so I may be missing a great deal here.  But,  I'm just wondering how thoroughly your liver disease has been assessed. Is there a chance your liver is not as bad as you believe it is?   If so, SVR could make all the difference.  


 I'm just going by what the Dr has told me. I did have an endoscopy which showed no bleeding varicies, but I have had ascites paracentesis done and I'm not clean with that. I still have accumulation, although minimal due to medication. My Dr has been constantly asking about my hepatic encephalopathy symptoms and has had encephalopathy on my charts since last spring. All that does class me as decompensated and just to check my understanding I asked him about this on the last visit which he confirmed. I believe it is fact that once advanced to decompensated stage, the liver will never be able to recover, period. Then the fact that I'm HIV+ with a long history of poor management of that puts me at an increased rate of declining liver health too and increased risk of extra hepatic problems. This tends to decrease the expected survival time for me in the future without transplant. He said my recent improvement in liver function etc is due to being on medication and also in a large part to me taking very good care of my body as opposed to 9 months ago.

 I think his tendency to speed up my process was initially based on statistics of past similar cases who did not do as well as me at making the total life change (including complying with medications) I've continued to stick with that has benefited my health so much. I may be able to live with a decompensated liver for longer than originally expected, but if the decompensated liver will not regenerate, this hepatic encephalopathy will continue to progress at some rate - regardless of medication, and I'll wind up with a fried brain or in a coma = whats the point.

 



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60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

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Hi Mike:

I'm not clear on why you are so certain you will need a transplant.  My recollection is that your blood labs have been in normal ranges for the most part; including your platelets (naturally your liver enzymes have been elevated).

My understanding is that you haven't had an endoscopy and I'm not sure if you have ever had a biopsy or even a Fibroscan.  You had an emergency room procedure, where a small amount of fluid was drained, and apparently a dx of ascites was given.  But that was also during a time when you were drinking quite heavily as I recall.  Since then you have been completely clean.  I'm not sure there is enough information to conclude that a transplant is inevitable.  I am just going on what I am reading so I may be missing a great deal here.  But,  I'm just wondering how thoroughly your liver disease has been assessed. Is there a chance your liver is not as bad as you believe it is?   If so, SVR could make all the difference.  



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Dzdayscomin wrote:

I do like cutting the grass if that's available !

biggrin


  LOLOLOLOLOL!!!



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60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

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I do like cutting the grass if that's available !

biggrin



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53yr M 1a acq 12/83 cirr pre tx MELD 17  tx nv diag 1/29/12  tx S/O 3/5/14  trans list.

EOT 5/28/14 UND 6/12/14 SVR 8/29/14 MELD 14 dx HCC 9/5/2014 tumor ablation 9/24/14

In the 10K lakes State It's not about us but those around us.

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"i really dig this place, and all the people that are here for various reasons...kind of like having another family that actually understands without having to help them weed the garden, cut wood, babysit, or whatever.......lol"


Hey Duane,

Watch it or we'll find a job for you here, lol!

Tig



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For all that care, my threads are open for whoever and what ever you'd like to discuss, I'm a always open to address anyone else's concerns regardless of where they are posted, as long as I have a clue what I'm talking about, I'm not all about me as much as I know I can come off sometimes...so post away!

I love having the conversation and ability to share my thoughts,issues,struggles etc...with anyone, so if you feel it'll get read in one of my topics don't sweat it and post away...i really dig this place, and all the people that are here for various reasons...kind of like having another family that actually understands without having to help them weed the garden, cut wood, babysit, or whatever.......lol

Your all my friends I only desire to help and make you feel better!

Duane



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53yr M 1a acq 12/83 cirr pre tx MELD 17  tx nv diag 1/29/12  tx S/O 3/5/14  trans list.

EOT 5/28/14 UND 6/12/14 SVR 8/29/14 MELD 14 dx HCC 9/5/2014 tumor ablation 9/24/14

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bassetgirl wrote:
http://www.srtr.org/csr/current/Centers/TransplantCenters.aspx?organcode=LI   

 The last column, 'View Report', has lots of specific information about different transplant centers. Have you talked to your transplant team about the possibility of registering with more than one center? Some centers do more transplants than others and your chance of getting a transplant with a lower meld score at another center might be a possibility-


 Hi Mary. I was looking at this the other day and see that the closest transplant centers to the one I'm being treated at are more than 4 hour drive away. If being available within a given time frame applies, then if registered at multiple centers, what is the solution to the response time issue short of having my own air transport etc.?



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60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

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Dzdayscomin wrote:

I just wish it were easier to understand.


 I'm glad your cutting the trail here because if your having a tough time, then I wouldn't have a chance.



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60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

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Isiscat2011 wrote:
 I still encourage you to push for the S/L combo that will be approved in less than 2 weeks.  You have 3+ more months left on this tx; I'd be emailing and calling and camping out at the doc's office with studies in hand if I was up to it.  The S/L combo has been tested on HIV/HCV patients with stellar results.  

I expect that knowing your tx odds are good, but could be better, has you a little down but you may be able to change that.  You seem like a fighter to me so fighting the good fight might lift your spirits more than the Zoloft would, not to mention, increase your SVR odds! I could be wrong but it is something to consider.


 I don't want to jack Duane's thread, but I am planning to bring this up next Tuesday with my doctor.

I agree and want to pursue this plan but I'm a skeptic and have to look at some obstacles I see like getting it approved as a modification to a Tx that is going as desired and producing no negative issues 'so far'. And I'm sure this strategy is not tested per whatever guidelines Medicare insurance is going to follow in this unique situation. And even getting my one-track-minded treatment center to attempt approving this will take pissing off multiple persons from my Dr. on down, which is fine with me as long as that doesn't come back to bite me later.

 I'm 10 weeks in to Tx so I'll need some kind of answer next Tuesday as to whether my treatment center will pursue this. I'll present my plan at that time and see what response I get. Stay tuned....



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60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

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Dzdayscomin wrote:

...but if i get in and get the 22 MELD i think I will things will happen sooner, otherwise I'll  just be waiting for the next development of lesions to repeat this process and sooner or later it'll happen.

I just wish it were easier to understand.


 

 Hi Duane- don't know if you had a chance to look at this link  to the Scientific Registry of Transplant Recipients:  http://www.srtr.org/csr/current/Centers/TransplantCenters.aspx?organcode=LI   

 The last column, 'View Report', has lots of specific information about different transplant centers. Have you talked to your transplant team about the possibility of registering with more than one center? Some centers do more transplants than others and your chance of getting a transplant with a lower meld score at another center might be a possibility-



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 Female. When treated: age 63, gt 1a, compensated cirrhosis, platelets 67,S/O 12 week treatment,EOT July 30 2014

Oct. 23 2014 EOT + 12 SVR !!!!!! Thank you God and Medical Science.

Jan 19 2015  EOT + 24 results: still SVR

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Duane,

I had to mention that when I saw you were up reviewing the "Milan Criteria", my first thought was that you were referring to another (new) title in the "Bourne Legacy"! We're going to have to chip in and buy you a subscription to Kindle to balance out your reading material, lol!

Tig



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I was up late last night reviewing the Milan Criteria and researching other transplant guidelines and I may have mis spoke on what I will actually get, it's  very detailed and confusing......it may be that I get 15% of the 3 month mortality score and then points added each three months until I reach 28 MELD score then 1 point each 3 month eval after that....to be very honest I really don't know how this all works, the latest share rule i think its Share 15 and it is starting to look like they feel to many HCC patients are having an unfair advantage to get transplanted in a healthier state than those strictly going off calculated MELD scores.....so I really don't know where I fall in this mess.....but if i get in and get the 22 MELD i think I will things will happen sooner, otherwise I'll  just be waiting for the next development of lesions to repeat this process and sooner or later it'll happen.

I just wish it were easier to understand.



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53yr M 1a acq 12/83 cirr pre tx MELD 17  tx nv diag 1/29/12  tx S/O 3/5/14  trans list.

EOT 5/28/14 UND 6/12/14 SVR 8/29/14 MELD 14 dx HCC 9/5/2014 tumor ablation 9/24/14

In the 10K lakes State It's not about us but those around us.



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More points, Duane.  Excellent news.  It may not feel like it sometimes but you are having some very good fortune along with the crap.  We can't see the future but there seems to be a trend here--things that could go wrong are going exactly RIGHT--SVR, a successful surgery, more points.  This may all be leading up to the day where you are feeling very good and playing not with your grandchildren but with your great-grandchildren.  I can definitely envision that happening.  

BTW, you are one brave dude.  :)

 



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Hi Mike:

Sorry you a feeling blue.  You have so much on your plate with all you are going through.  Also, a move is considered a major stressor so that may take a bit of time to get used to.  And, don't forget that Riba in particular can cause some emotional issues.  Things will get better.  

I expect the reason Duane got the Olysio is twofold: 1) Persistent medical team: they appealed at least 2x and got it on the 3rd try is my understanding, and 2) He carries good supplemental insurance in addition to Medicare.  

I still encourage you to push for the S/L combo that will be approved in less than 2 weeks.  You have 3+ more months left on this tx; I'd be emailing and calling and camping out at the doc's office with studies in hand if I was up to it.  The S/L combo has been tested on HIV/HCV patients with stellar results.  

I expect that knowing your tx odds are good, but could be better, has you a little down but you may be able to change that.  You seem like a fighter to me so fighting the good fight might lift your spirits more than the Zoloft would, not to mention, increase your SVR odds! I could be wrong but it is something to consider.  You may not know how brave and tough you are but others can see it.

Hang in there.  Summer may be ending (which can also influence people's spirits) but there are some sunny days ahead.  



-- Edited by Isiscat2011 on Tuesday 30th of September 2014 06:16:53 PM

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Dzdayscomin wrote:
 you are always upbeat !

LOL  Okay, that does it. I now officially invite you to spend a day with me. LOL

The truth is I've been very depressed the last couple of weeks and I've isolated from life outside my bedroom, but thanks to you all, this forum is one place I don't feel as much need to isolate from, so yes, I guess I am upbeat when I'm on here. smile

So SuperMike isn't so super sometimes and although you are also upbeat on here all the time, with your own plate full of problems, I suspect SuperDuane has his moments too. Hell, we wouldn't be human if we didn't.

PS. Dr wrote me a script for Zoloft today. More on that maybe in another thread if need be...



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60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

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That and i went after this in Jan. So it was still new, I do have really good ins. But express scripts was the drug carrier and they fought it, but they may have gotten pressure from BCBS as to the cost of not treating and their future relationship?(collectively not just me ) but who knows....I just consider myself lucky I am not treated like a number, I'm  not sure I'd be so positive fighting all this and the system too......But it seems that you are handling it pretty good...I mean you got it worse than I do and you are always upbeat !

That's  admirable! 



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53yr M 1a acq 12/83 cirr pre tx MELD 17  tx nv diag 1/29/12  tx S/O 3/5/14  trans list.

EOT 5/28/14 UND 6/12/14 SVR 8/29/14 MELD 14 dx HCC 9/5/2014 tumor ablation 9/24/14

In the 10K lakes State It's not about us but those around us.



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Dzdayscomin wrote:

 Not to sound like a smart arse but...off label is just that...not as intended..i got the same denial letters i believe that looks like the 2nd one....but my Dr's kept the appeal process going and out of the blue...they approved it....go figure.

My hepatologist said the riba would be to hard on me....that's all I  got on that. 


 Like I said, I was not aware of any of this denial / new Tx plan until after the fact, when Sov / Riba was already ordered from the specialty pharmacy. My treatment facility is huge with all the latest high tech toys which I'm very thankful for. But they treat many cases per year and there is comparatively very little personal attention given to individual issues. I am a number and I know it. I suspect cases that need extra attention and time given to them to get approved, like mine, are not given as much resources as a less busy or more fully staffed facility.

I asked my Tx nurse about this lack of my being notified last month at our support group meeting and she said a lot of effort was given in my case toward getting Sov/Oly approved with no success. If she is telling the truth, then I would look at it possibly being a difference in Medicare and what ever insurance you have, but I'm just speculating on that?

 Yes, your correct. That was the second denial letter I received. I didn't attach the first one because I saw no additional pertinent information in it.



-- Edited by wmlj1960 on Tuesday 30th of September 2014 06:37:36 AM

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60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

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wmlj1960 wrote:
Dzdayscomin wrote:

  Mike I just pulled this post to draw it to your attention, but my docs wouldn't let me do Riba because of my liver state, yet you are in the same boat being decompensted and yet yours felt ok with that? I just thought about it reading your sig and I'm  puzzled. ...what can you tell me about that?


I don't fully understand myself but here's my take on it:

 My doctor originally wanted to prescribe (off label) Sov/Oly (no Riba, no Ifn), but my Medicare insurance denied payment based on AASLD guidelines which include non coverage because of "Simeprevir being contraindicated in patients with decompensated liver". That based more than anything on lack of sufficient data to support it's use.

 Additionally, the guidelines recommend FDA approved Sovaldi / Riba so rather than waiting for the FDA's Sovaldi / Ledipasvir approval, my hepatologist opted to start Sov/Riba treatment as recommended by AASLD guidelines.. I was uninformed about all this activity until after the fact so I haven't pressed for an explanation in favor of using that energy moving forward with the approved Tx.

When my Tx was first being planned, my doctor told me that I was ineligeble for Inf due to HIV, RA and decompensated liver but he didn't say anything about Riba, probably because #1 it was not a medication for which I was ineligible per AASLD, and, #2 it was not a part of his original Sov/Oly plan.

I'll attach the text in my Sov/Oly denial explaining the reasoning and maybe you can make more of it than I can...

 That said: I assume that since you were approved for Sov/Oly regardless of 'off label' non FDA approval, then AASLD guidelines for contraindication of the use of Olysio in decompensated cirrhotics was not required to be followed in your case? Is this correct?


 Not to sound like a smart arse but...off label is just that...not as intended..i got the same denial letters i believe that looks like the 2nd one....but my Dr's kept the appeal process going and out of the blue...they approved it....go figure.

My hepatologist said the riba would be to hard on me....that's all I  got on that. 



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53yr M 1a acq 12/83 cirr pre tx MELD 17  tx nv diag 1/29/12  tx S/O 3/5/14  trans list.

EOT 5/28/14 UND 6/12/14 SVR 8/29/14 MELD 14 dx HCC 9/5/2014 tumor ablation 9/24/14

In the 10K lakes State It's not about us but those around us.



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Dzdayscomin wrote:

Just more dead weight! Lol

no


 Well, at least you won't loose any traction at the starting line due to lack of weight once you heal up and start running marathons. biggrin



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60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

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Dzdayscomin wrote:

  Mike I just pulled this post to draw it to your attention, but my docs wouldn't let me do Riba because of my liver state, yet you are in the same boat being decompensted and yet yours felt ok with that? I just thought about it reading your sig and I'm  puzzled. ...what can you tell me about that?


I don't fully understand myself but here's my take on it:

 My doctor originally wanted to prescribe (off label) Sov/Oly (no Riba, no Ifn), but my Medicare insurance denied payment based on AASLD guidelines which include non coverage because of "Simeprevir being contraindicated in patients with decompensated liver". That based more than anything on lack of sufficient data to support it's use.

 Additionally, the guidelines recommend FDA approved Sovaldi / Riba so rather than waiting for the FDA's Sovaldi / Ledipasvir approval, my hepatologist opted to start Sov/Riba treatment as recommended by AASLD guidelines.. I was uninformed about all this activity until after the fact so I haven't pressed for an explanation in favor of using that energy moving forward with the approved Tx.

When my Tx was first being planned, my doctor told me that I was ineligeble for Inf due to HIV, RA and decompensated liver but he didn't say anything about Riba, probably because #1 it was not a medication for which I was ineligible per AASLD, and, #2 it was not a part of his original Sov/Oly plan.

I'll attach the text in my Sov/Oly denial explaining the reasoning and maybe you can make more of it than I can...

 That said: I assume that since you were approved for Sov/Oly regardless of 'off label' non FDA approval, then AASLD guidelines for contraindication of the use of Olysio in decompensated cirrhotics was not required to be followed in your case? Is this correct?

 

Olysio Denial reason jpg.jpg

 



-- Edited by wmlj1960 on Tuesday 30th of September 2014 04:56:08 AM

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Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

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Just more dead weight! Lol

no



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53yr M 1a acq 12/83 cirr pre tx MELD 17  tx nv diag 1/29/12  tx S/O 3/5/14  trans list.

EOT 5/28/14 UND 6/12/14 SVR 8/29/14 MELD 14 dx HCC 9/5/2014 tumor ablation 9/24/14

In the 10K lakes State It's not about us but those around us.



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mallani wrote:
 it would be nice to see the HCC reduced to a necrotic mess!

 After reading this statement and a Google search for 'necrosis' and 'Tumor Ablation' I learned something once again. I thought they completely removed the tumor from the body during the procedure but now I realize that it is left in there, hence a "necrotic mass" seen via imaging. I learn something new every day around here.



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60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

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wmlj1960 wrote:
Dzdayscomin wrote:

I'm  only taking it until the train starts running again, after that I'll be good! 


 Hi Duane. I hope your recovery is going well. This post you made the other day has stuck in my mind. Why? Because your response suggest that you normally don't take your lactulose on a daily schedule. If this is true I'm anxious to know what you do to reduce the amount of ammonia in your blood? I know your status is ESLD and you posted in another thread:

 My diagnosis was ESLD all my paperwork just says Cirrhosis and the fact that I've had acites, edema, slight encephalopathy, portal hypertension, varicies

So if you don't take lactulose do you take Xifaxan? If you don't take either then what do you do about reducing ammonia to control HE progression? Just curious.


  Mike I just pulled this post to draw it to your attention, but my docs wouldn't let me do Riba because of my liver state, yet you are in the same boat being decompensted and yet yours felt ok with that? I just thought about it reading your sig and I'm  puzzled. ...what can you tell me about that?



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53yr M 1a acq 12/83 cirr pre tx MELD 17  tx nv diag 1/29/12  tx S/O 3/5/14  trans list.

EOT 5/28/14 UND 6/12/14 SVR 8/29/14 MELD 14 dx HCC 9/5/2014 tumor ablation 9/24/14

In the 10K lakes State It's not about us but those around us.



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mallani wrote:

Hi Duane,

Glad you've recovered from the ablation. Are they doing a follow-up CT or MRI to check how things went? It probably doesn't matter, but it would be nice to see the HCC reduced to a necrotic mess!

Good luck with the points- you're an inspiration. Cheers mate.


 Next MRI will be will be 1st week of Dec. Regular schedule of my 3 month transplant labs and imaging, unless I  find out something different this week.....being it was done in CT wouldn't they have been able to see that right there and then ?

 

Thanks, hopefully your on the upswing from the flu bug.Get Well soon!

Duane

 



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53yr M 1a acq 12/83 cirr pre tx MELD 17  tx nv diag 1/29/12  tx S/O 3/5/14  trans list.

EOT 5/28/14 UND 6/12/14 SVR 8/29/14 MELD 14 dx HCC 9/5/2014 tumor ablation 9/24/14

In the 10K lakes State It's not about us but those around us.



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Hi Duane,

Glad you've recovered from the ablation. Are they doing a follow-up CT or MRI to check how things went? It probably doesn't matter, but it would be nice to see the HCC reduced to a necrotic mess!

Good luck with the points- you're an inspiration. Cheers mate.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm



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You got it Duane, "keep the faith" it will pull you through.  smile  



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1b  Int/Riba relapse @ 48 weeks.  Stop tx Peg Int/Riba 12 weeks ill. Relapse S/O 6/23/14 :(   Started Harvoni 11/12/14  EOT 4/28/15.  EOT+4 UND :)  SVR! 8/4/15  :)     Thankful for every morning.



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Well I heard un-officially that I got the points....so I'll probably have to wait until the oncologist, liver Dr.and IR docs all have their reports done to get the official word.....but if that is true and I have no reason to believe otherwise..and if I get the points added each 3 months the way I understand, it would put me at MELD of 34 by this time next year and that is high enough in our region to get a transplant from my limited research? I am speculating somewhat.

So that starts the nervous waiting of being on call 24-7 with 4 hrs to report to the transplant center once notified.....I think that this will be the most nerve wracking and stressful part of this entire journey....and having that done really does rattle me some....but I'll  just keep the faith and pray it all works out for the best so I can help others when and if they find themselves facing the same challenges.

Again you guys all make it easier just by knowing my thoughts are going somewhere.....Thank you.

Duane



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53yr M 1a acq 12/83 cirr pre tx MELD 17  tx nv diag 1/29/12  tx S/O 3/5/14  trans list.

EOT 5/28/14 UND 6/12/14 SVR 8/29/14 MELD 14 dx HCC 9/5/2014 tumor ablation 9/24/14

In the 10K lakes State It's not about us but those around us.



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Gator Man wrote:

It easy to author nice replies and well wishes to people that deserve them. You have a great attitude, which is as infectious (in a good way) as Hep C to everyone on this forum! smile 

Glad to play a small part with you feeling good my friend. Take care and anxious to hear about your report after Monday's conference as well.

John


 You are so right John. Duane is such an inspiration to me with his infectious good attitude through achieving SVR just have have those newly fresh feelings of joy shredded by news of HCC. And I'm so thankful for his pioneering leadership and his sharing of his experience through this ordeal so that  the rest of us can learn. Duane and I are very similar in our liver conditions and I have a lesion and another MRI to monitor that scheduled for Wednesday that I am concerned about. But I'm not scared ****less of something I know very little about because I've been following Duane's post and he has explained things in a way I can understand and knowing he is doing well and handling this thing so bravely and with such a great attitude lets me know that I can too if needed. The emotional piece-of-mind this gives me is priceless. Thank you Duane and I'll be waiting on that post Monday also.



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60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

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Dzdayscomin wrote:

 

Plus I get all these nice replies and well wishes from my forum friends...which makes me feel good too!

smile


It easy to author nice replies and well wishes to people that deserve them. You have a great attitude, which is as infectious (in a good way) as Hep C to everyone on this forum! smile 

Glad to play a small part with you feeling good my friend. Take care and anxious to hear about your report after Monday's conference as well.

John



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Geno 1b, compensated cirrhotic, 54 yo, prior null responder. Pre tx VL approx 595,000, tx with Sovaldi/Olysio (no Riba) started 1/8/14. VL 40 @ 2 weeks, UND @ 4 weeks. Still UND @ EOT + 1 year.

Gator Man SVR12, Dragon 0, Final Score.

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I'm glad you're feeling pretty upbeat Duane! At least you're sounding that way and it's good to hear it. I'm anxious for your report once you hear back on the Monday liver conference. Keep your chin and spirits up my friend, we certainly enjoy your attitude and friendship as well. smile

Tig



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Thanks, really it's just seeming to me as another curve in the road caused by the HEP C derailment....Gods got me covered so I don't have anything to fear !

Plus I get all these nice replies and well wishes from my forum friends...which makes me feel good too!

smile



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53yr M 1a acq 12/83 cirr pre tx MELD 17  tx nv diag 1/29/12  tx S/O 3/5/14  trans list.

EOT 5/28/14 UND 6/12/14 SVR 8/29/14 MELD 14 dx HCC 9/5/2014 tumor ablation 9/24/14

In the 10K lakes State It's not about us but those around us.



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This is such a heavy subject ...I don't feel qualified to even comment in any way other than wishing you the very best of luck & I sincerely hope you get your health back.



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Duane,

 

So glad you are feeling good and that the cancer treatment is behind you! You handled the whole thing with aplomb and deserve to treat yourself to something really fun! And so much better without Hepatitis C!

Cheers!

 

Peter



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64 YO - HCV  45 years - GT 1b - F4  - starting VL 7,800,000 - AST 130 ALT 164  - started S/O 4-11-14 - week 2: - AST 37 -ALT 43 - wk 4 VL <40 - UND week 8, 12, eot, +4 +8 +12 SVR!!!  My Blog-Visit hepcstories.wordpress.com!



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Well it's  been 5 days since the cancer surgery and I have to say I'm feeling pretty good, seems to be some internal tightness in the area under by rib gage, as well as general soreness in the ribs which I think should be expected considering where they entered and length of procedure.

So now I just have to wait for the determination of my status after they discuss it at the weekly liver conference which is each Monday...that is where I'll find out if I was granted upgrade points for transplant.

So all that said I can share with all, that if you ever find yourself in the position to have this procedure don't  fear the procedure, it's not that bad at all, the cancer causes more fear than the tx for it and that is understandable, I also under stand many of these RFA's are done using twilight meds and I h ad general anesthesia which I'm glad I did even with the dangers of GA as 4 hrs of trying and trying may have been a lot more stressful if I hadn't. 

 

Anyway thanks for all the support folks...you're the best!

Duane



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53yr M 1a acq 12/83 cirr pre tx MELD 17  tx nv diag 1/29/12  tx S/O 3/5/14  trans list.

EOT 5/28/14 UND 6/12/14 SVR 8/29/14 MELD 14 dx HCC 9/5/2014 tumor ablation 9/24/14

In the 10K lakes State It's not about us but those around us.



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I was never told to take it as a result of ammonia levels,  it was actually given to me after my kidney procedure just to keep me from getting plugged up and it would have the added effect of doing that.

That was before treatment for HCV, since that time my liver function.... less the cancer had improved, and the idea is to have frequent bowel movements to retain less waste....I never had a problem with that so ammonia levels never got that high...at least that is the way I understood it.



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53yr M 1a acq 12/83 cirr pre tx MELD 17  tx nv diag 1/29/12  tx S/O 3/5/14  trans list.

EOT 5/28/14 UND 6/12/14 SVR 8/29/14 MELD 14 dx HCC 9/5/2014 tumor ablation 9/24/14

In the 10K lakes State It's not about us but those around us.



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Dzdayscomin wrote:

I'm  only taking it until the train starts running again, after that I'll be good! 


 Hi Duane. I hope your recovery is going well. This post you made the other day has stuck in my mind. Why? Because your response suggest that you normally don't take your lactulose on a daily schedule. If this is true I'm anxious to know what you do to reduce the amount of ammonia in your blood? I know your status is ESLD and you posted in another thread:

 My diagnosis was ESLD all my paperwork just says Cirrhosis and the fact that I've had acites, edema, slight encephalopathy, portal hypertension, varicies

So if you don't take lactulose do you take Xifaxan? If you don't take either then what do you do about reducing ammonia to control HE progression? Just curious.



__________________

60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

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Hi Duane,

Sounds as if it went well. Recover quickly. Cheers.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm



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Glad it went well Duane.  You have a great positive attitude.  It helps before and after tx.  We've been keeping you in prayer.  Hope you have a speedy and full recovery.



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1b  Int/Riba relapse @ 48 weeks.  Stop tx Peg Int/Riba 12 weeks ill. Relapse S/O 6/23/14 :(   Started Harvoni 11/12/14  EOT 4/28/15.  EOT+4 UND :)  SVR! 8/4/15  :)     Thankful for every morning.



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I'm  only taking it until the train starts running again, after that I'll be good! 



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53yr M 1a acq 12/83 cirr pre tx MELD 17  tx nv diag 1/29/12  tx S/O 3/5/14  trans list.

EOT 5/28/14 UND 6/12/14 SVR 8/29/14 MELD 14 dx HCC 9/5/2014 tumor ablation 9/24/14

In the 10K lakes State It's not about us but those around us.



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I'm glad it went well Duane. I hope the pain subsides pretty quick. FYI: In case the Lactulose doesn't quite get the job done, my Dr told me to switch to Miralax instead of increasing the lactulose dose. You can't overdose on lactulose, but too much causes other problems that are not good. Anyway, it worked for me.

 Sweet dreams biggrin

 



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60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

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Hi Duane:

So glad it went well and you are now on the road to recovery from the procedure.  The tumor is gone, the chest CT is clear, and you got your extra points, right?  That sounds pretty darn good.  Amazing what can be done in medicine and also what the human body and spirit can accomplish. 

I see they DID give you a platelet infusion.  Yeah, I told them to do that.  lol   Don't laugh yet, it might hurt.  :)

Rest and stay hydrated.  I wish you a speedy recovery.  



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.



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Glad the procedure went well, if a little longer than expected. "Plan A" and "got it all" is great news. I wouldn't worry about too much over the next few days other than rest and recover. Hope you get some sleep and  the pain goes away soon.

Take care.

John

P.S. Thinking of sleep and your response to my post a week ago about a new bed; best nights rest I had in a long time.



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Geno 1b, compensated cirrhotic, 54 yo, prior null responder. Pre tx VL approx 595,000, tx with Sovaldi/Olysio (no Riba) started 1/8/14. VL 40 @ 2 weeks, UND @ 4 weeks. Still UND @ EOT + 1 year.

Gator Man SVR12, Dragon 0, Final Score.



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Well I'll give a bit of an update for now.

The lesion was in the dome of the 8th segment of the right lobe, just superior and to the side of the portal vein, it was supposed to be a 30 min. to 1 hr procedure it went 4 hrs they accessed between my ribs 1 rib below my right nipple and to the right side they went in with plan A and B

Plan A being as stated above placing a #24 needle into the liver thru the rib cage to help locate the lesion via CT, because of the ribs Ultrasound would be difficult to locate it being so high up, then they would either inject stain into the lesion with some dye I can't remember what they called it but it was not something i had heard of before and hard to pronounce, or leave a pc of metal there to be easily discernable when the large needle was in and contrast added to do the ablation via CT, and coterize upon removal to ensure no spread and reduce bleeding.

Plan B if they couldn't accurately mark the lesion as stated above they would go in trans arterially and stain it that way then continue with the other part of plan A.

In either case they made it clear, that they felt if they could not safely do the ablation due to its location they would stop and we would have to consider other options.

So then they prepped me gave me platelets and we got going, 4+ hrs later i woke up still in the CT suite ....first they did the chest xray as ordered by oncology, which was clear, then they remeasured, and it indeed was easily over the 2cm size (that's all I'll say on that here) they were able to use plan A and feel they got it all, the ablation size I was told was about approx 1.5" diameter.

Pain, well its under control but i understand my right arm was taped high up above my head, and for 4 hrs, so you can imagine a guy that already suffers muscle and joint pain then going between the rib cage with a few needles and whatever else they had to do in that 4 hr time frame, so I'm pretty darn sore, not to mention i didn't  sleep but 1 hr last night and woke up with severe gas pains due to constipation from anesthesia and pain drugs which at first scared me a bit until I figured out it was indeed gas pains, so now I'm taking some latalose I have to remedy that.

And that's about it for now. ..if anyone has questions feel free to ask and I'll try and answer them, I'm sure you guys will jog my memory to things I've forgot to add, if by any luck I do fall asleep it may be awhile before I respond.

I also saw all the prayers and well wishes everyone sent and Thank You all, I am grateful beyond words.

Duane



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53yr M 1a acq 12/83 cirr pre tx MELD 17  tx nv diag 1/29/12  tx S/O 3/5/14  trans list.

EOT 5/28/14 UND 6/12/14 SVR 8/29/14 MELD 14 dx HCC 9/5/2014 tumor ablation 9/24/14

In the 10K lakes State It's not about us but those around us.



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Good luck, Duane. I know you are in good hands and confident that you will sail through the procedure.

I'm attaching another link to supplement the one posted by Mary: http://optn.transplant.hrsa.gov/. This is the governmental site that explains about organ donation, regions and centers. I believe that Steve Jobs was registered at several sites nationwide before he ended up in Memphis. Of course he could access a private jet, which expanded his options for transplant centers. A donor liver is viable for 8-12 hours, double that of heart/lung which increases the donee range beyond one hospital.

Hope you can post good news as soon as you feel up to it. We're all thinking about you today and sending on our support via electrons!



-- Edited by Gator Man on Wednesday 24th of September 2014 06:02:26 PM

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Geno 1b, compensated cirrhotic, 54 yo, prior null responder. Pre tx VL approx 595,000, tx with Sovaldi/Olysio (no Riba) started 1/8/14. VL 40 @ 2 weeks, UND @ 4 weeks. Still UND @ EOT + 1 year.

Gator Man SVR12, Dragon 0, Final Score.



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Dzdayscomin wrote:


The only cure is transplant and how many ablations or embolizations can you do before the liver just fails.

They want to get me transplanted to so I can have the best chance for a longer and better life, rather than a torturous decline in health for many yrs, also there are no guarantees that an organ becomes available when you are in dire straits so this essentially gives you better chance at overall best outcome.

Duane

 Hi Duane- here is a link to the Scientific Registry of Transplant Recipients:  http://www.srtr.org/csr/current/Centers/TransplantCenters.aspx?organcode=LI   

 You can  click on the link and find your transplant center and get their data, the last column, 'View Report' has lots of specific information.

When I was going through the transplant evaluation procedure I was told that I could register with more than one transplant center- that's something you might want to check out because some centers have much shorter waiting times than others-

Educating yourself in all aspects of your situation is extremely important so that you can ask the right questions and be your own advocate. There is a lot of information out there and not all of it is scientific or reliable; I was lucky because both my step son and brother in law are physicians and were able to direct me to good solid information. Your doctors can most likely help you with your research.

The fact that you've reached SVR is so important- your new liver will not be infected! You will go on to lead a long life!

You are in my thoughts and prayers as you begin this journey.

Mary

 

 

 



-- Edited by bassetgirl on Wednesday 24th of September 2014 01:14:03 PM



-- Edited by bassetgirl on Wednesday 24th of September 2014 01:15:46 PM

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 Female. When treated: age 63, gt 1a, compensated cirrhosis, platelets 67,S/O 12 week treatment,EOT July 30 2014

Oct. 23 2014 EOT + 12 SVR !!!!!! Thank you God and Medical Science.

Jan 19 2015  EOT + 24 results: still SVR



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We'll be prayer for you Duane.  Hope all goes well.  



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1b  Int/Riba relapse @ 48 weeks.  Stop tx Peg Int/Riba 12 weeks ill. Relapse S/O 6/23/14 :(   Started Harvoni 11/12/14  EOT 4/28/15.  EOT+4 UND :)  SVR! 8/4/15  :)     Thankful for every morning.



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Okay, I see better why being over 2cm is so important. More so for the future big picture than the ablation of this tumor asap now is. And as you said, they can't preform ablations / embolizations indefinitely. 
 Yes, this all can be a tad overwhelming at times but you seem to be doing an excellent job of learning the ropes and dealing with it. You do a good job of explaining it in terms a simple person like myself can understand too.
I also will be thinking of you and wishing you the best and waiting for the details when you are able.



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60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

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