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NO metastasis, what's ahead.

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Posted 4/29/2011 2:52 PM (GMT 0)
As some of you know, I have a recurrence of liver cancer and recently underwent scans of my chest, bones, and brain, looking for metastasis.  I just found out this morning, when I saw my hepatologist at Mayo, that there is NO metastasis.  What a relief!  However, it is felt that the best treatment for me would be a liver transplant, so I am being referred for the evaluation process.  In the meantime, my Interventional Radiologist will perform chemoembolization on the tumor, which is 3.5 cm, at the first available opportunity.  I might also receive hep C treatment (the new one) prior to transplant.  However, since it is brand new with no statistics of how it might work post-transplant, my understanding is that for the time being, those with hep C who have a return of it after transplant, would get "the combo."  The doctor also told me that they give Prednisone for 3 mos., so being that I have an adverse psychotic reaction to it, that will have to be discussed.

Thanks to all for the thoughts and prayers and well wishes.  I am just so relieved to have a chance to live longer.

Hugs,

Connie

Posted 4/29/2011 3:01 PM (GMT 0)
Thank god for that - keep batting :)
Posted 4/29/2011 4:20 PM (GMT 0)

Connie! 

Great news!  No mets to a cancer survivor is fantastic news...news to dance too! yeah    The transplant, while scary, is probably your best bet at preventing future liver cancer scares, as you know.  My suggestion on the prednisone issue, bring up Entocort (Budesonide) to your docs.  It's a steroid but has far less side effects than the pred.

Posted 4/29/2011 4:28 PM (GMT 0)

Thanks, Dany!  I will certainly mention that.  Time to start a red notebook, I think!

I also wanted to mention that my hep doc said my MELD score would automatically be elevated to 22, due to the liver cancer.  It was only 6 without it.

Hugs,

Connie


Posted 4/29/2011 5:06 PM (GMT 0)
That's wonderful Connie! I've been thinking about you today wondering when you would know....I know that's a huge relief to you!

That makes my day!

Posted 4/29/2011 6:17 PM (GMT 0)
hi connie, i havent had my computer for a couple of days and could not send you my prayers but i said them and im soooooo happy for you that the news was good!! you are obviously going to have some stuff to go through now but you are such a fighter, you can do it!! so happy for you.xxnatasha.xx
Posted 4/29/2011 6:39 PM (GMT 0)
I know you are relieved and it sounds like they have a GREAT plan for you......

Ron's MELD was 8 and automatically moved to 22 after liver cancer; if it happens like it did for us, every three months (after being placed on the list) your score is raised by 3 points. Ron was a MELD 25 and was two weeks from a MELD 28 and then he received his new liver.

The doctors had talked about chemoembolization, but decided against it. Perhaps because of the size of the tumor - Ron's was 2.1cm. They may want to keep the tumor under control until your new liver arrives.

What is your blood type? What center would you be having the transplant?

We dealt with the steroids - Ron took them for 1 month - and he was a tad 'aggitated' most of the time....we made it through....you will, too.

We're thinking only POSITIVE thoughts for you!
Posted 4/29/2011 7:06 PM (GMT 0)
Pam, thanks for the info.  I am O+, the universal donor.  But the joke is that I can't donate blood and presumably not organs...though maybe to someone with hepC?  I know that if a hep C liver becomes available, I may get it.

Also thanks to WOD and SW.

I am going to Mayo Jacksonville.  It's 15 min. from where I live (less if traffic isn't bad.)  They've been treating me since '05.  I have everything done there but primary care.  The last tumor was too large to be considered for transplant and it had metastasized into the inferior vena cava.

Hugs,

Connie

Posted 4/29/2011 7:21 PM (GMT 0)
Great news, keeping the prayers going your way!

Natalie
Posted 4/29/2011 9:32 PM (GMT 0)
We were asked if push comes to shove, if we'd accept a liver with Hep C; and we said yes - the new liver becomes diseased once it's put into place - so why not. We don't have any information concerning the liver Ron received. Ron is A+
Posted 4/29/2011 9:40 PM (GMT 0)

Right.  While I'd rather have a healthy liver, I'd accept one with hep C if I needed to, knowing that the virus in my body will infect the new liver anyway.  UNLESS I manage to get the new treatment prior to transplant.  Then I'd want a clean liver.  Aside from the tumor and cirrhosis, I'm not really sick like most transplant candidates are.  And aside from my artificial hips, I have no other health problems.

Pam, I appreciate your input from someone whose husband has recently undergone transplant.  If there's anything you can share with me about what you wish you'd known beforehand or if there's anything you should have done and didn't...that kind of thing...let me know!  While each patient has individual circumstances, I think there are some things that are universal.

David, I pretty much know your story, but the same applies.  If there's anything you think you can tell me, feel free.

Hugs,

Connie


Posted 4/29/2011 10:13 PM (GMT 0)
Good new Connie

That great i have been praying for you to be ok.

Posted 4/30/2011 2:56 AM (GMT 0)
yeah yeah yeah Doing double back flips Connie.......Since you done a good portion of the tests it should not take so long to get the rest done and listed. Hoping your listing process goes smoothly and quick. Lot's of thoughts and prayers.....
Posted 4/30/2011 3:01 AM (GMT 0)

PG, thanks.  I was wondering about that...if the scans I've had done recently would be acceptable to the evaluation team.  I guess it depends how long it takes to get everything else done before transplant...bearing in mind that I will have to have chemoembolization done first and then wait a bit to see how well it worked.

I'll keep you posted.

Hugs,

Connie

Posted 4/30/2011 3:02 AM (GMT 0)
I'll call you in a couple of days and we'll talk at length. You're going to be fine. Once you receive a new liver things will be better than they are now.
Posted 4/30/2011 3:20 AM (GMT 0)
Connie,

This is GREAT news!!! With regard to the prednisone issue, my husband has adverse psychotic effects with it, as well, and his transplant team ASSURED us there is a different medication they can put him on. SO, please be at ease, everything will work out. I am so happy to hear the cancer has not spread.

Talk to you soon!
Mer
Posted 4/30/2011 3:37 AM (GMT 0)
When they finally listed my husband........they could use any testing done within the last 3 months I believe. Ask your hep doc about it, as each transplant center have some differences. I know my husband did not have to go through the whole testing process as he did the first time. And insurance will only cover certain testing every so often.

Take care.........
Posted 4/30/2011 4:44 AM (GMT 0)
Thanks, David and Mer. PG, that's true about insurance coverage. I guess I'll get all my questions answered when I see a transplant coordinator. I have no followups scheduled with my hep doc right now. I will get appointments for everything in the mail.

I just want to get some energy back.

Hugs,
Connie
Posted 4/30/2011 6:29 PM (GMT 0)
Here's my email - I'll be happy to give you all the info and advice I can. 

[email protected]

Posted 4/30/2011 6:57 PM (GMT 0)

Thank you, Pam.

Today, I am waffling about transplant.  Since my HCC is caused strictly by the hep C, I'm thinking that once they do the chemoembolization (which my hep doc feels will kill the tumor) and IF they put me on the new treatment fairly soon afterwards (June or July), which has a very good chance of ridding me of hep C--then perhaps I wouldn't need a transplant.  I do have stage 3-4 cirrhosis in the left lobe, but with these treatments done I could possibly achieve the same longevity as the transplant...given my age (pushing 70.)  Of course, treatment could also make the cirrhosis worse.  Hard to know just what to do, though I do trust my doctors at Mayo.  They haven't steered me wrong yet.

While I did sign the forms agreeing to transplant evaluation, I also read on one of them that I could change my mind about transplant right up to the time of transplant.  I suppose it's human nature to waver back and forth, especially if not in liver failure.

Hugs,

Connie

Posted 5/1/2011 4:13 AM (GMT 0)
Connie I have been reading some of what you have been going through and you certainly have been through alot. Good news about the cancer, I would imagine you would waffle because this is a huge decision. Whatever you decide I wish you the best.
Take care
Rose
Posted 5/1/2011 5:37 AM (GMT 0)
Thanks very much, Rose.

Hugs,
Connie
Posted 5/1/2011 9:55 AM (GMT 0)
good luck to you connie, im sure whatever you decide is the right thing for you,, go connie, go connie!!!xxnatasha.xx
Posted 5/1/2011 6:37 PM (GMT 0)
Connie, am so pleased for you that there are no mestastises. wrong spelling i know!!! now u have some options. You are a brave and knowledgable woman to be admired. I will keep u in my thoughts. Mandy. x
Posted 5/1/2011 7:07 PM (GMT 0)
Wonderful news Connie that there is no spreading. Keeping you in prayer.

Emma
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