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Posted 4/13/2011 10:21 PM (GMT 0)

Emma, they are doing scans to see if it has metastasized.  I have one more left, a brain scan on Fri.  After that, the various doctors involved with my case will meet and talk about results and what my options are.  My hepatologist will deliver this information to me on the 29th (her earliest available appt.)  She should be able to answer my question about the MELD score.

It doesn't really matter about the remnant.  Just my own curiosity.

Hugs,

Connie

Posted 4/14/2011 6:49 PM (GMT 0)

Here's a question:  If the tumor is in a location that is hard to access for chemoembolization or other targeted treatment, couldn't a transjugular approach be taken?  (They usually access the liver through the femoral artery.)  I'm not yet sure exactly where this "tumor in a fragment of the right lobe" is located, but I suspect it's up high where the rt. lobe meets the left lobe (bearing in mind that I had the entire rt. lobe removed in '07.)  I'm still in the dark as to why a fragment would be left...whether the surgeon missed it or if it regenerated a bit.  I don't think he would've been dumb enough to leave a fragment on purpose.

I know some of you have had transjugular biopsies, which leads me to believe that cancer treatment could also be done that way.  I'll know for sure on the 29th, but it's a question that's rolling around in my head.

Hugs,

Connie

Posted 4/15/2011 10:55 PM (GMT 0)
You're back Connie. I hope that all went well with testing today and that you're not too worn out.

Best,
Emma
Posted 4/15/2011 10:58 PM (GMT 0)
Hi, y'all. I'm back....finally. I had temporarily forgotten that MRIs of my brain come out black. Nobody seems to know why. Fortunately, they were able to create IV access in a small vein near my wrist, so I didn't need to have the access done by imaging. However, when my MRI pics weren't coming out, they stopped and put in a call to my hepatologist, who told them to do a CT with contrast instead. That only took 10 min. If I'd had the MRI, I would've missed my van ride as I didn't allow enough time.

I won't know the results until the 29th, though I'm going to push for an earlier appt. if my doc has any cancellations.

I got there extra-early and put in a call to my g'daughter who is an RN in the hospital section of Mayo, and she met me in the lobby for a 15-min. visit. She looked great, but said the 12-hour shifts are very tiring. She said she's not able to access my scans and reports on the puter. shakehead

Hugs,
Connie
Posted 4/15/2011 11:23 PM (GMT 0)
Hi Connie,
Glad to see you got home in one piece. Take it easy tonight and tomorrow. After that, Mick will be happy to take you dancing.
Posted 4/15/2011 11:53 PM (GMT 0)
@ Connie,

Whew...ordeal behind you. Now the waiting...which is the worst.

Mike too. MRI yesterday to see whether his liver tumor grew or had babies! But who knows when they''ll tell him the results.

WE HATE WAITING.

Try to have a nice weekend.

My daughter is coming from New York for 5 days with hubby and grands (4 and 6) -- fun!

Carol
Posted 4/16/2011 1:11 AM (GMT 0)
Carol, I imagine family will keep you busy! Hope you get results soon.

Hugs,
Connie
Posted 4/16/2011 4:22 AM (GMT 0)
Connie , Would love to take you dancing to Clay Aiken unfortunately I wouldn't last to long. David's old girlfriends used to call him quick draw but alas these days I'm even quicker than that and just like David I'm off to sleep. We are praying the results go your way .
Best of health Mick and Karen
Posted 4/16/2011 5:15 AM (GMT 0)

Thanks, everyone.

Carol, have you been given a date to return for results or is that done locally?

Hugs,

Connie

Posted 4/18/2011 7:27 PM (GMT 0)
A poster recently asked about cirrhosis staging.  I inaccurately reported that mine has never been staged...or at least I was never told.  However, while trying to organize all my medical records back to '05, I did find a report that mentioned my cirrhosis as being Grade 3, Stage 3-4 in the left lobe.  This was in a surgical report after the rt. lobe had been removed and a biopsy of the left lobe was done while I was still under general anesthesia.  I also noticed that a device was used to check for any remaining cancerous tumor and there was none.  It does appear that the surgeon took the entire rt. lobe and the gall bladder.  So apparently, the "fragment" that the new tumor is in regenerated.

 

Hugs,

Connie

Posted 4/20/2011 10:54 AM (GMT 0)
Hi Connie & Carol,

Good luck with the results.

I can only image what medical files look like going back to 2005. We have only been dealing with hubbys Hep C and ESLD for 12 months, although he has had it for years. The files we have are already inches thick. So well done Connie on locating the information! It really says something about keeping good records. I noted that from one of the links at the top of the forum, and used it from day one and have found it very helpful.

Wishing good results for you both, take care xx
Posted 4/20/2011 9:33 PM (GMT 0)

Hi, Goddess!  I just keep the blood work, scan reports, operative reports, and hepatology visits.  For the past 3 yrs., they've only been doing blood work, scans, and visits every 6 mos., so there's not as much as one might expect.  I just keep it in a manilla envelope, in order by date.  I also have a fairly good memory when it comes to medical stuff.

Hugs,

Connie

Posted 4/21/2011 12:26 AM (GMT 0)
@Connie

Mike heard from pre transplant coordinator today about MRI results His HCC (heptocellular carcinoma) has not changed in size. Tne tumor 2.5 cm.

That is good. Next doc apt mid May. We are glad they didn't keep him in suspense three more weeks.

ML
Posted 4/21/2011 1:08 AM (GMT 0)

Carol, really good to hear that Mike got his results and that the tumor is stable.  Wish I didn't have to wait so long, as this tumor seems to be fast-growing like the last one (3.5 cm as of 03/31.)  I hope they will do chemoembolization or something really fast to halt the growth of mine.  And I'm a long way from transplant.

Hugs,

Connie

Posted 4/21/2011 1:14 AM (GMT 0)
Carol-good to hear that Mike's tumor is stable and not changing.  Thinking about you both.

Connie-when will you have a treatment plan?  Is that what will be covered in your appt on the 29th?

Emma

Posted 4/21/2011 1:20 AM (GMT 0)
Glad about Mike's tumor being stable......

Connie hope they do something quick for you too. Can they put you on a cancellation list or something to get you in earlier?
Posted 4/21/2011 1:59 AM (GMT 0)

Emma, the meeting on the 29th with my hepatologist is to go over the results of the scans I had last week, and to tell me what my options are.  Before she meets with me, there will be a meeting with the Interventional Radiologist, my hepatologist, an oncologist, and some others to look over the results and decide on a plan.  If there is no metastasis, there are several options, including transplant.  If it has metastasized, all they can offer is oral chemo that will buy me a few months more time, but I will refuse that.  I only will accept things that offer treatment.

PG, I know my hep doc wanted to see me after the 21st, when they've all had a chance to review the scans and had their meeting.  So I may not be able to get a date in between the 22nd and 29th.  I would have to know of a cancellation 24 hours in advance to secure a van appt.  eyes

Hugs,

Connie

Posted 4/21/2011 2:23 AM (GMT 0)
I am praying for you.
Posted 4/21/2011 4:18 AM (GMT 0)
Connie....thanks for keeping us updated. With regard to adding points to the MELD score, here is what my understanding is. If it has not spread beyond the liver, then they can add points to your score. I am not sure at what point there are more points added than other, but I do know they add points.

You are a strong, amazing woman, and I know you will keep fighting! We are all here pulling for you, Connie!

Mer
Posted 4/21/2011 5:27 AM (GMT 0)

Thanks, Ailsa and Mer. 

Mer, I know that a transplant is not an option if the cancer has metastasized.  I was told that if it's one tumor confined to the liver, it can go up to 5 cm. to be eligible.  If more than one, then they have to be no more than 3 cm.

Hugs,

Connie

Posted 4/21/2011 8:01 AM (GMT 0)
connie, its way beyond my understanding as to what is actually happening as far as your medical state but i do know this, i think you are one brave, amazing woman and a fighter to boot, you just keep on fighting and i will keep on praying. best of british luck to you connie. xxnatasha.x
Posted 4/21/2011 10:28 AM (GMT 0)
Carol , We are so glad your Mick's results came back and the tumor hasn't grown . Mick has been asking me to check on you and your Mick ,He was only saying yesterday to email you to find out but you don't have you're email address up so have been keeping a look out for you . Hope things keep getting better for you both .Give Mick our regards.
Karen and Mick
Posted 4/27/2011 2:37 PM (GMT 0)
Connie-I am going to be away from the computer for several days, and just wanted to let you know I will be thinking about you.  I hope that the doctors have good news for you when you have your appt on Friday.  Sending prayers your way.

Best,

Emma

Posted 4/27/2011 10:39 PM (GMT 0)

Emma, I will report on Fri. after seeing my hep doc.  I will post it here or start a new thread.  Hope you time away is enjoyable.

Hugs,

Connie

Posted 4/27/2011 10:46 PM (GMT 0)
Thoughts and prayers go to you connie
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