It has been some time since I have posted and thought I would give an update.

As many of you know i went thru the S/O tx over a yr ago and made SVR12 , and since that time I have gone through HCC, and a successful ablation , and other then that, things have been just kind of drudging on, still work full time, except as of late, my last MRI  came back unchanged on 6/5 and all labs were looking good actually better the diabetes is gone ....not sure how that comes and goes but i sure didn't change anything....but one pesky little problem reared its head my AFP tumor marker had been as high as 240 when i had HCV and was down to 10.6 steady +/- 2 pts it came back at 345 this time....?i'm like WTH...... so i saw my gastro (liver dr) and transplant coordinator last week they were saying you will have your liver by Jan.16 , but they decided to retest to see if its a fluke with the AFP....nope comes back 775.5 im like oh oh that's not good ...as cut off for transplant is 400-500 depending on the criteria you fall under.

Pretty cruel I've been on the list i think since 11/2011 I'm  6 months away from the gift, and bam .

I will be a having a chest and liver CT Tuesday, and retest for HCV, they already did a bone scan 10 days ago and that was clean, they gotta find out whats causing it in July and downgrade it somehow....but it is very likely cancer has returned , already was cleared of testicular cancer which is usually the only other thing that gives a high AFP marker at least in those ranges....they normally do liver MRI's on me to limit radiation from CT's, but maybe they should alternate each 3 month in case the CT has better chances of seeing the cancers.

Since last posting i have also discovered i likely have synovitis, I had both shoulders mri'd 6/5 also to see why my hands were going numb turns out have labral tears in both with inflammation of the synovial membrane pretty much every dr I talk to about this blames long term HCV infection for all the joint, nerve, and neuropathy pains i experience. .....other that things are great!

2 grandchildren now 1 girl 1 boy .....close to home where I can see them weekly. Yee haa!

Hi Duane,

Glad to hear the ablation was successful. Struggle on buddy. You'll get a new liver soon. Thinking of you. Cheers.

Good news Duane.  Keep up your positive attitude.  Sure like your picture with that little cutie-pie.  Now there's something to be happy about!

Great news Duane! Keep putting one Sorel in front of the other. You'll get to healthyville. ~Roo

Super news that the ablation area is clear.  Very glad to hear that Duane. 

Along with not feeling well, I guess that waiting for transplant is the hardest part. Hopefully the accumulating extra points will get you to transplant soon. You're in my thoughts and prayers as you wait - with no more Hep C I know you'll go on to live a full life. Wishing you peace for the holiday season.

Congrats Duane! I believe your liver will slowly return to a normalized state and you will have many years to enjoy that little Angel!

Duane,

This great news made my weekend. Thanks for the update. I'm always wondering how you are doing. Fantastic report.

-Rob

Hey D,

Thanks for sharing your good, no great update! Stay positive, you've taught us all what that word means and continue to serve as the example of what being strong requires. You're always in our prayers Duane...

Tig

I`m so glad to hear the ablation was successful, Duane, it sounds like good news to me too.   Thanks for sharing your updated news and for being such an inspiration...your strength and good humour is a wonderful example for us all. 

Hang on in there, friend, one step at a time, and I wish you all the best luck in the world!  ~ Jill

Duane,  Stay strong! Sending you positive thoughts and prayers!  Ro

Successful is a good word when it comes to cancer. I'm sending positive thoughts that there is more of that!

Hey Duane

When I read your posts, I realize that your strength and attitude is something I admire.  I'll be saying some prayers for you. Stay strong...your an inspiration for folks you don't even know!

Thoughts and good vibes going your way.

Sandy

Duane , You will be in my thought while I pray. God bless you.  I complain constantly and when I read your story I am ashamed , because there are so  many who are so sicker  and so much more deserveing than I .   Michaele

Preliminary MRI results are in, ablation in Sept.was successful, impression: moderate acities , severe portal hypertension, splenomegaly, multiple dysplastic nodules  in the right lobe......however as far as the HCC is concerned there is no change to that ablated area, and nothing lit up in the scan in that area, the other lesion is still there, but little has changed still just under 1cm. The dictated report will probably have to circulate thru the whole team including oncologist before being posted. So that sounds like good news to me.....I guess :/

Labs however showed increased total billy and reduced albumin, platelets at 43 and INR at 1.9 creatinine at 1.0, both white and red blood cts were low 4.3 and 4.05 respectively but AST and ALT were both in normal levels.

So I guess it is just business as usual until March.

Duane 

Saw the Rheumatologist today, 15 blood tests and a boat load of xrays, so priliminary dx is ......Arthralgia, and Myalgia but i wo nt get the lab results for a few days as some are custom i guess but this was the battery

ANA

ANCA

ANTI-NATIVE DNA

C-REACTIVE PROTIEN

C3 COMPLIMENT

C4 COMPLIMENT

CK TOTAL

CYCLIC CITRULLINE PEPTIDE

ENA

RA QUANTITIVE

SEDIMENTATION RATE AUTOMATED

SJOGRENS

TSH

URIC ACID

VITAMIN D DEFICIENCY 

I don't think they missed anything except the darn vein to draw the blood !

Thanks everyone I really appreciate the thoughts and prayers,  I'm really not the whiny type, but man this thing is beatin the crap outta me.

I wanna quit working,  but I don't wanna quit working, and then I see how totally lost I am in things that rolled off my tongue in the past, it's  rattled my confidence, and then just never being able to experience fun anymore is deflating.

Anyway enough........ thanks again everyone.

Praying for you right now Duane.

Hey D,

I'm sorry you're having such a hard time right now. I hope you know that any one of us would gladly take some of your pain, some of the load, if only we could. I'm going to send you the best and strongest vibes I can muster and pray that you can somehow gain a bit of strength, and the confidence that we are trying to send your way. If prayer will help, and I believe it will, let a special prayer chain begin for you here and now... Stay strong and believe Duane, He and We have got your back!

Tig    

That mental exhaustion caused by steady pain can be a lot worse to deal with than any physical exhaustion.

I'm in your corner too buddy!

Dzdayscomin wrote:

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.... but I think there is something else bad going on in there because of how I am feeling.... no fever, just this dull ache and just a general blah feeling and intense muscle and joint pain that is getting worse.

 

 

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   Is the upper right quadrant pain something you were told you might experience after your surgery?  If not your doctor might want to check it out.... Hang in there, I'm sorry you're having a hard time right now.

Isiscat2011 wrote:

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Duane:  

You need a hug today.   Here it comes:  (((((((big hug)))))))

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 I think you would appreciate a hug from Isis rather than me (soft cat fur versus reptile skin), but we are all in your corner! Sending you all the strength I can. 

Thanks.....I know you mean it!

But I'm growing weary....I will just continue to pray for the strength I need, and if that doesn't come I'll just deal with it.

Duane:  

You need a hug today.   Here it comes:  (((((((big hug)))))))

I had Facet injections for my lower back 25 yrs ago and one time in my upper back about 10 yrs ago for a trigger point, otherwise no other joints and didn't have any problems.

I don't care so much about the needles that pain is so insignificant it doesn't matter ...except the paracentesis needle that one is a little bit more challenging.

I really don't want anything more for pain I just want the whole effing thing to cease...i'm tired of it and it just keeps piling on.

My MELD got raised to 22 it'll be 25 on Dec. 5th and 2 pts every 3 months........ so Transplant is possibly between now and next Dec. 2015 if we make it there.... but I think there is something else bad going on in there because of how I am feeling.... no fever, just this dull ache and just a general blah feeling and intense muscle and joint pain that is getting worse.

Isiscat2011 wrote:

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 I hate being poked and prodded too and I can't even imagine what you have had to endure.  

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 Some of us idiots were our own phlebotomist in the life of a IV drug abuser, with dirty dull syringes. So we are a little more accustom to the pain and we too still get sick of getting stuck. With some of the brutal techniques I've seen / felt at some of these places, I've often wanted to jerk the needle out of the tech's hand and show them how to do it. They seem to have learned the hands on portion of training at a cow farm.

  And I can imagine it's much worse for a non-idiot, non-IV drug abuser like you Duane. I'd take your place in that lab chair if I could.

 It's much better when you have a good tech with a minimally destructive technique, but with all the sticks you go through it's still a major chore.

Dzdayscomin wrote:

________________________________________________________________________________________________________________

BTW what are they looking for as far as blood work that I don't already regularly get drawn ? I am getting sick of the constant blood letting.

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Rhematologists are looking for a long list of autoimmune disorders.  Chronic HCV has been linked to autoimmune problems although many people who don't have HCV have autoimmune disorders.

If a specific disorder is identified it can often be treated, but as you say, the risk to the compromised liver has to be considered when drugs are used to tx. The big catch-22.  Still, it is worth the trip to visit the Rhematologist just to find out, since most autoimmune disorder diagnoses can apparently be made or ruled out by blood work.  

I hate being poked and prodded too and I can't even imagine what you have had to endure.  

Dzdayscomin wrote:

They would have to stick me so many times in so many places that I really don't see that happening, besides we all know that steroid injections are only temporary. But these days maybe temporary is long enough.

Isiscat2011 wrote:

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 In addition to palpating your joints Rhematologists do like to give joint injections.  :)  

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 My hope is that a 'long term' solution can be found.

 I may be mistaken but I'm thinking you posted a while back that you have already been through trying the injections, but I don't remember why you said you discontinued them. I imagine it was just because what you just said... temporary, and it would take so many different injection sites. And if I remember right, I believe you already take Oxycodone 5mg IR x2 daily. But with your extensive pain issues, taking enough Oxy to suffice would definitely be damaging to your liver. I'm not real knowledgeable with all this but it seems like the only 'long term' solution will be transplant. I may be wrong and I hope I am, but either way I'm still praying for a happy solution to your ordeal, so try to hang in there for the long run Duane.

 I'll have my fingers crossed for your MRI / endo results next month too! Hopefully your new pains won't turn into a bigger issue before then.

They would have to stick me so many times in so many places that I really don't see that happening, besides we all know that steroid injections are only temporary. But these days maybe temporary is long enough?

BTW what are they looking for as far as blood work that I don't already regularly get drawn ? I am getting sick of the constant blood letting.

That's how I felt when seeing a Rheumatologist too, Duane.  The good news is she didn't do anything that hurt.  Just took a bunch of blood and felt my joints.  In addition to palpating your joints Rhematologists do like to give joint injections.  :)  

Good luck.  It will be an easy visit.  I liked the Rheumatologist I saw very much; she was Russian, Comrade Duane.

Well its been a month since the HCC Ablation and not feeling to bad but not great either, i have developed some upper right quadrant pain, not horrendous but different and constant which has me a bit worried as to why....but I have my next MRI in a month so we'll find out what that means then, and then 3 days later my yearly upper endo so that'll be fun, but in the mean time this week I see the Rheumatologist to assess the joint pain issues which are increasing in it's severity.....I really don't know what they can do considering about all they do is use medications which will be ruled out due to liver disease, so other than being compliant with my PCP I'm kinda thinking this will be a waste of time?who knows.

Duane

I still have the joint pain and mussel pain after treatment, I am a lot better though, I Quit the job at DHL it was too demanding for me, i am driving a taxi , self employed , and doing ok with that.

  I think we will find that the Fibro pain is something that comes from this new treatment as a lingering side effect. Don't know if it will get better or not/

Actually I don't have to work...I could easily retire and file for Disability, I was a wise young man 30 yrs ago that is making me a wiser old man with $ now...so yeah I could do that, but I have found that working and being required to perform, as well as the Co. I work for is almost like family to me so I enjoy being a part of the business and it is vey good for the mind and social well being.

But I will admit I'm getting closer to a point where I like quiet and peace without as much hustle and bustle, so we'll just have to see how this goes in the next couple yrs and take it from there.

If I really felt that the end were nearer I'd surly stop working and just spend time doing whatever forever...

I don't think I'm as sick as the medical world (and my wife lol ) think I am....I can get along just fine as long as I take my meds and don't over do it, I work full time and other than being tired a lot I'm fine. Muscle cramps and joint pain...is a hassle too..

That's what can be so difficult about this disease, is that you can look perfectly fine and then one day bam!! your really sick because the liver finally fails, I really think the liver seems to work harder with less to compensate for the in-efficiency.....I would bet that most people would have no idea i was in the condition I am if they didn't know me before, and only then it would just be the weight loss that would make them think WTH ??

But thanks all the same !

Dzdayscomin wrote:

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 my MELD will jump to 22 and I will receive 3 additional points in Dec. and after each 3 month evaluation, until my scores puts me at the top in our region for type O recipients so doing the math he said it would be about 18 months as 30-35 is the current score required, he did say that there are current deliberations on redistricting our area which would drop that need to the upper 20's but that is still ongoing.

_____________

Either way I'm  pretty happy with life in general, **** happens and we we gotta just play the hand we're dealt, so for those of you that are in good  health other than having HCV stay positive, because there is always someone out there that has it worse than we do.

 

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 So if the redistricting works out, and no portal vein lesions or other lesions disqualify you, you could be looking at a transplant as early as just a few months. And because you have achieved SVR that should help with limiting the new lesion situation, right?

 I know your situation could turn bad, but the odds are that you will get through all this crap with your new body part and do just fine. I'm glad you can look at this with a positive outlook and not ignore possible obstacles and acknowledge those who are in worse shape. My close friend of 26 years died yesterday from cancer. I spent many fun times with him, and then watched his decline over the past few months and that has really given a new attitude about my little HCV deal. I've been pretty strong for his family during all this but after the viewing tomorrow and funeral Friday, I suspect I'll shed a few tears, then move on to the next obstacle, with a little help from my friends.

Hang in here Duane!

So I got the call from to Transplant center today that I have been approved for exception points based on the Milan Criteria, all they need is one last administrative sign off and my MELD will jump to 22 and I will receive 3 additional points in Dec. and after each 3 month evaluation, until my scores puts me at the top in our region for type O recipients so doing the math he said it would be about 18 months as 30-35 is the current score required, he did say that there are current deliberations on redistricting our area which would drop that need to the upper 20's but that is still ongoing.

So with that in mind it looks like a year from May I could be sporting a new body part......there is of course the reality of what got me here which is the HCC, if i were to develop more lesions, it could in effect disqualify me, if their size or number is untreatable, so things like a tumor on a portal vein or multiple lesions that spread could be a game changer....so all I can do is hope for the best and prepare for the worst.

Either way I'm  pretty happy with life in general, **** happens and we we gotta just play the hand we're dealt, so for those of you that are in good  health other than having HCV stay positive, because there is always someone out there that has it worse than we do.

wmlj1960 wrote:

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Maybe that astray plan will continue on to show you that all the Sx crap, life interferences and waiting were to provide you with increased gratitude for your future SVR.

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I'd be grateful enough yesterday!  I've never bought into all that "suffering is good for the soul" business.  Raised by Agnostics.   

I do think there are lessons to be learned and strength to be gained by adversity, however.  

Maybe that astray plan will continue on to show you that all the Sx crap, life interferences and waiting were to provide you with increased gratitude for your future SVR.

Hahaha.....I remember that, Mike.  So glad you decided to hang out.    

Ahh...waiting....When I was first diagnosed my plan was to get through tx ASAP and not let HCV interfere with my life.....The best laid plans of mice and men often go astray.

 It's good that you consider those on the long list that are in worse shape, some with one foot in the grave. And fresh donar livers are not available at 'Rollback' pricing at Walmart. I hope you get the exception points, but even then, you'll have plenty more waiting to do. I like the way Isis posted in another thread - Hang out here with us while you wait, Mike.   A whole bunch of us are in waiting mode.  Put up your feet and grab some popcorn (unsalted of course).

So I got a call today saying that the remeasure of the tumor revealed it was 2.1cm and that it will be discussed in next Monday's conf. with all parties from the transplant center, my liver doc, the IR docs, hepatologist etc.. as to weather I will qualify for the exception points, I guess the review of not just the size but, also the the fact I have attained SVR and the fact that my liver function was much improved will all be factored in.

I guess it takes longer than I thought to get all their info together to best present my case for this, and I would suppose that it is only fair to others that may have never had HCC  and have high calculated MELD scores are in worse shape than I.

So we will continue to wait and just see what happens....I'd be totally fine if my liver were to progress to compensated and better and not get a transplant, but I'd  rather have it when I am in as good a shape as possible to insure the best outcome......as im sure would those waiting with say a calculated MELD of 30 to get theirs before they deteriorate any further.

 L

Lots of waiting in this waiting list game......

Duane

Isiscat2011 wrote:

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 Both you and Mike are, in all likelihood, going to live long enough to become dirty old men.    Accept it.   

 

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 Now there's some incentive to keep working toward SVR.

Tig56 wrote:

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Hey Isis,

i like your positive outlook. If you need some help, I'll hold them down and you can smack em'! There has never been a time more promising that right now guys. We have all made it to our current position by wanting to succeed. The only way we actually get there is to keep trying. No quitters allowed!!! You are all important and your struggle matters. Certainly to yourselves, but us too.

Tig

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Thanks Tig. I guess with all the negative info on the net, I loose sight of the new technologies that are rapidly becoming available in non-cyber life within a mile of my house.

I won't quit and everybody's struggles matter to me too.

Dzdayscomin wrote:

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I guy can over research I guess.....

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 Sure can. I left my house at 8am to go for MRI then spent the day with an old friend and never pickup up my computer until 20 minutes ago. That, combined with a boost in hope from Isis's post here last night = I had the best day I've had in a while. I think I might keep this research vacation going a while longer too.

Ok ok I get it stop the drubbing ...lol

I guy can over research I guess.....I'll  just leave it at that to prevent a thrashing..!

Hey Isis,

i like your positive outlook. If you need some help, I'll hold them down and you can smack em'! There has never been a time more promising that right now guys. We have all made it to our current position by wanting to succeed. The only way we actually get there is to keep trying. No quitters allowed!!! You are all important and your struggle matters. Certainly to yourselves, but us too.

Tig

Dzdayscomin wrote:

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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

 

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Ok, I'm just going to smack you right in your noggin, because you are thinking about the worst possible outcome. The study you cited is not on point because it is discussing the outcomes for people who have repeated recurrences of HCC post operatively and whose viral etiology was predominantly HBV. This study was not focused on HCV patients or HCV patients who had attained SVR.  This is a significant distinction and I'm sure there are others. Furthermore, you may not even have a recurrence.

Reading small esoteric studies will not give you an accurate picture because they only include a tiny piece of a very large puzzle that contains many ongoing variables.  

Both you and Mike are, in all likelihood, going to live long enough to become dirty old men.    Accept it.   

Thanks Isis!

 Looking at my situation from this new angle will certainly help out with easing the depression / isolating. And it gives me renewed determination to stay the course and not give up. Gee, I'm even starting to have visions of a wonderful future life where I can call myself old and decrepit rather than just decrepit.

wmlj1960 wrote:

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 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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Exactly, Mike.  It isn't false hope because it is a real medical possibility.  It is also noteworthy that the discussion from the liver conference you cited to took place in 2006 and so much as changed for the better since then.  At that time they were seeing few decompensated patients who could even hope to achieve SVR.  Their livers, therefore, didn't stand much of a chance even if they stopped drinking.  

I interpret those comments by the Hepatologists to mean that alcohol, and perhaps HCV, could cause acute decompensation, but it could be reversible if the assault on the liver was eradicated, and that is consistent with some other things I have read at various times.

I'm not certain of this, but I think Duane's Meld score decreased post-tx, and his liver was showing signs of improvement.  Of course the HCC changed things again, but on the upside, it also placed him in a better position to receive a new liver.  

Anything can happen but there is no reason to assume things will only get worse.  Don't underestimate the positive changes that can occur, as the result of your commitment to sobriety and healthy living, as well as to achieving SVR.  While I am not one to believe that positive thinking will say, cure disease, I sincerely believe that positive actions can change the course of one's future.  Just keep up the good work and continue to hope for the best.   

Dzdayscomin wrote:

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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

 

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 I don't read very good but that graph doesn't look very encouraging? Hopefully I don't see graphs very good either...