hey connie and june

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

mom's "will" to live
Regular Member


Date Joined Oct 2007
Total Posts : 111
   Posted 6/22/2008 9:15 PM (GMT -7)   
Hello lady's,
 Hope you both are doing well! I am up late as my husband is on an airplane headed for Dallas, Tx. won't get in til after midnight so can't sleep until I know he's landed safely. Anyway June we were posting to a pennielane a few day's back and I responded to your post not sure if you saw it. As she has'nt been back on line. Pennielane Hope all is well with you!
Connie I know from reading alot of your post that they did a resection along with many other surgeries! God bless you, Don't know how you deal with this all.
My question is at what stage does one have to be before a)resection or transplant is not an option? b) Why would they continue to monitor every 3 months to find if these lesions are growing ? Why wouldn't they just go in and remove them now?
In Jan. they found 1st lesion on right anterior lobe and in April the 2nd showed up on his right posterior lobe? From what I have been reading that due to his virus being active that and please correct me if i'm wrong. The virus is still destroying his liver and at this time he is in an compinsated stage as it is still functioning. The Dr. that did his last biopsy in Sept. said Wil was at an f4 cirrhosis a-b with arterial blush found on right lobe. That at this point it was irreversable. Does this mean his liver is to far gone to rejuvinate at this stage? If that's the case why is he still taking this barreclude evidently it is not working.
I know Dr's. cannot give a time frame on his prognosis, even transplant coord. said he could be well today and sick tomarrow. They did say that all his other organs looked clear.
We have our 3month visit at Shand's in Gainesville Fl. this Thurs. and Fri. and tell you truthfully I'm terrified. I have no clue what questions to ask to get a straight answer. The last visit was crazy as it seemed they sugar coated and danced around our questions.One minute  it was Wil you got years the next was here you've been refferred to transplant coordn. she can give you more info. Please tell me what I should ask for?
Thanks, Huggs ansd smooches
Toni

lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 450
   Posted 6/23/2008 1:35 AM (GMT -7)   
 
Hi Tony:
 
Glad you posted otherwise I would never have remembered where you were. But I did remember you were Wils mom and was going to look for you today . I had posted later but again was having problems with computer. My husband , who uses it during day , just won't break down and get a new one.  Yes I am an insomniac these days. I think it may be related to a fear of having that night terror again. It was almost in my face the last time. When I was younger it used to be at the door. Then it slowly started to creep up on me. I guess I need to see the sunlight before I sleep. Everyone seems to think it's so easy to sleep. Not Me redface
 
What does Wil do when he can't sleep?! He can't sleep in the day, like I do. He needs to get his rest at some point. Is there any way he can go to that culinary school he wants to go to . That would  be really good for him he may even get his appetite back. My appetite is fine, just have a limited one . Dr.s never told me I should be on one. When I read up on liver disease I decided to go on one. 

lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 450
   Posted 6/23/2008 1:50 AM (GMT -7)   
Just lost my continuation . I Hope Wil is well today , and for a long time to come. june

Caregiverx3<3
Regular Member


Date Joined Mar 2008
Total Posts : 197
   Posted 6/23/2008 9:46 AM (GMT -7)   

Hi Toni,  :-)

I'm sure Connie will be able to explain more & better than I. This is some of Terry's experience.

At first his leisions were small and so they waited to see if they started growing and kept checking his AFP levels to see if there was active cancer. If there is, the AFP level will keep rising. They don't want to do any unnessary procedures.

I think a lot depends on where the tumor is located as to how they will decide to procede. Terry has never had a biopsy because they didn't want to pull any cancer cells out from the liver through the needle insertion point. It could start spreading through his body.  Anyway his tumor grew fast (they kept telling us that it was stable-NOT) and into his portal vein. After a tumor reaches 5mm, they will never do a transplant. If it reaches the portal vein, they will never do a transplant. Rules of the UNOS.

Terry had 2 chemoembolizations and then a radiofrequency ablation, which finally dissolved the tumor. There is nothing they can do about what is in his portal vein. We're just hoping that the Nexavar will take care of that. His AFP level has dropped from 50,000 to 8.4.   8 is a normal level. I sure hope it stays there.

I don't know about a resection, as it was not an option for Terry.

Connie will help you more with that. Get your pen & paper ready and write it all down. Make a copy and shove it in their face. That way, when you still forget to ask them somethingeven though it is written down,  they will have to look over your list too.

Go to the UNOS web site and see what else you can learn about tranplants.

Carol


 


mom's "will" to live
Regular Member


Date Joined Oct 2007
Total Posts : 111
   Posted 6/23/2008 11:26 AM (GMT -7)   
Thanks Carol,
  What exactley is AFP levels? When you say his tumors grew fast? How fast? and how long did he have them? I am very well aware everyone is different and in Jan. Wil's was found to be
 an  6mm arterial blush and in April  the 2nd was found and they are now saying a small area of perfusional change. I pulled a measuring tape and it is small but with everything else these guys have wrong with them this to me is not good. Thank you I'm writing everything done for this trip, Wil's fiance is going with us so she can also get educated! Thanks again
Huggs and smooches
Toni
 

Caregiverx3<3
Regular Member


Date Joined Mar 2008
Total Posts : 197
   Posted 6/23/2008 11:51 AM (GMT -7)   
AFP= alpha-fetoprotein. It is a tumor marker. They will do an AFP blood test separately from the other blood tests. Put AFP levels in you search bar. You will see a lot about Pregnant women and unborn babies. You don't want those sites. Find one that talks about cancer. Medicinenet.com,or labtestonline.org are only 2 of many sites.
I'll have to go back to his medical records to get exact dates. I do remember that last Dec they said the lesion was stable at 2.5, but in Feb it was 11mm. Right now I can't remember when his last scan or MRI was before Dec, But I think it must have already started growing when they were telling us that it was stable.
At the time, I was so busy caring for Dad that I wasn't taking enough care for Terry. Hindsight is a wonderful thing.
When I get more time I will look through his records again.

Carol
 


mom's "will" to live
Regular Member


Date Joined Oct 2007
Total Posts : 111
   Posted 6/23/2008 12:11 PM (GMT -7)   

Hey Carol,

DUHHHH! They do check him for that everytime we go! One good thing is we are 4 1/2 hrs. from Shand's so we make one day for testing and next day we get results. In reading his last report for April the potal vein, splenic vein and hepatic veins are patent with NO ascites present.

That's a good thing, right?

Toni


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/23/2008 3:14 PM (GMT -7)   

"In reading his last report for April the potal vein, splenic vein and hepatic veins are patent with NO ascites present."

Yes, Toni, that's a good thing!  :-)    As to what you should ask when you go in for Will's appt.:  Everything you asked here.  Write down everything!  Do you happen to have a small, handheld recorder?  That's another great option, as you can record the entire consult conversation, if they agree (and I've never known anyone to say "no.")

I'm a different case, in that I was having sonograms every year to look for tumors.  There were some lesions noted, but that was damage from the hep C and meant nothing.  So Wil's are not necessarily cancer--just damage from his hepatitis.  They do follow up on those frequently to make sure there's no change.  Now, in my case, as I've mentioned, I was going to Shands Jacksonville with no insurance.  I was only getting sonograms once a year and blood work every 6 mos.  The alpha-feto protein was only done occasionally--and not at all the last few years I was seen there...until the tumor was found.  When the sonogram showed a tumor, it was huge--11 cm x 8.5 cm, taking up a good portion of the right lobe of the liver.  I honestly think it was missed the previous year, as it was so large.  After it was discovered, it did not grow much over the ensuing 9mos.  The radiologist's report stated that it was hepatocellular carcinoma.  What I basically heard at Shands was "so sorry."  A transplant was mentioned, but I would have to go to Gainesville for that.  Just getting an appt. to be seen by a cancer specialist at Shands Jax was ridiculously drawn out, and I never did get an appt. with one.  The sonogram had also shown metastasis into the inferior vena cava.  This is the point where I decided to go to Mayo Jax, after visiting their website.  By then, I had acquired Medicare.  They will accept Medicaid as a secondary insurance, but not as a primary.  They also will not take any HMOs.  I had to drop one I had just signed up for.  However, I was seen almost immediately, and tests and consults were done very quickly.  They questioned why it had been so long from diagnosis until I was seen by them, and I explained I'd been going to Shands Jax and they dragged their feet about everything.

I found out that I was NOT a candidate for transplant due to the metastasis.  The hepatologist/surgeon I saw (after an MRI, blood work, a CT scan, etc., etc., but all done quickly at Mayo) told me (when pressed for an educated guess) that I had 6 mos. or less to live.  You can imagine the shock!  However, he did refer me to an interventional radiologist there who was doing some experimental things.  I thought, "What the heck!  I have absolutely nothing to lose."  It turned out to be TheraSphere and a study would be conducted soon, after they'd jumped through all the necessary hoops.  Meanwhile, a chemoembolization was scheduled and performed.  That shrunk the tumor a lot, though I felt like hell for awhile after that.  After a number of delays, they were finally able to give me the TheraSphere (microspheres of radiation directed into the tumor.)  That killed the tumor and miraculously shrunk the metastasized part into the original tumor.  It also killed most of that right lobe of liver; thus, the resection of the rt. lobe.  That was also to make sure they had gotten all the cancer.  The left lobe was biopsied and found to have mild cirrhosis.  Even prior to the resection, the left lobe had grown to accommodate the work of the failed rt. lobe.  They never told me what stage the cancer was or what stage the cirrhosis was, and I didn't bother to ask.  I knew I was alive, and that I would have been dead w/o the treatments, and that's what mattered.  I have so much faith and trust in Mayo docs, that I seldom question anything they do, except for my own information.  The surgery reports, which I have, don't even mention a "stage," just the size of the tumor and what was done.  I never had a biopsy until during the resection, when they biopsied the left lobe of the liver.

Also, I never have had high alpha fetoprotein (AFP) numbers.  I think the highest was 12.  So in my case, that has not been an indication of cancer.  Instead, they do CT scans every 3 mos. and blood work more often than that (but looking at general chemistry and not just the AFP.)  We were about to extend to 6 mos. when the 2nd hernia appeared, so now it's still every 2-3 mos.

A biopsy of the tumor was never done until after it had been removed.  They always will want to avoid anything invasive, if at all possible.  Part of this is due to the possibility of infection.  I have had a number of MRIs with Gadalinium.  This contrast will enable the inside of the body to "light up like a Christmas tree" anywhere there is cancer.  You might ask if they can perform this study on Will.  The 2nd time they did this at Shands, the vein "blew" while the contrast was infusing.  I had nobody in the room with me, and though it was burning me so badly I felt my arm was coming off, and I was crying and pleading to stop, that it hurt, the technologist ignored me.  The result is that I have sizeable scars on my right forearm from that.  The only reason I didn't sue was because I was too concerned about the tumor to want to spend time and energy on a lawsuit.  At Mayo, they always make sure that someone is there beside me as the contrast is infusing, and they also make the flow a bit slower so as not to "blow" the vein.

As I said, my case is different from most.  But don't be alarmed by the "lesions."  They are undoubtedly just damage from the hep.  Can they turn cancerous?  Yes.  That is why he needs to have frequent followup with CT and/or MRI and Gadalinium.  Blood work does not always tell the whole story.

Hugs, prayers, and much luck,

Connie

Post Edited (hep93) : 6/23/2008 4:20:28 PM (GMT-6)


mom's "will" to live
Regular Member


Date Joined Oct 2007
Total Posts : 111
   Posted 6/23/2008 8:37 PM (GMT -7)   
hello connie,
 I'm going to write more tomarrow.Goodnight and Thankyou for sharing your story, and i'm sure that's just a tip of the iceburg.Prayers have been sent to All!
Sleep Well!
HUGGS AND SMOOCHES
Toni

Caregiverx3<3
Regular Member


Date Joined Mar 2008
Total Posts : 197
   Posted 6/24/2008 7:54 AM (GMT -7)   
Toni,
I'm getting my cm & mm mixed up. Transplant will not be done at 5cm. Terry's grew to 11mm. pretty fast.

Carol
 


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/24/2008 9:31 AM (GMT -7)   

Carol, my reading informed me of the same thing regarding tumors more than a certain size.  However, I was never told that at Mayo--just that transplant wasn't an option because of the metastasis.  I have been told, though, that if cancer should return in the remaining (left) lobe, then I would need a transplant.  So that's one reason they keep a close eye on me.

Hugs,

Connie


Caregiverx3<3
Regular Member


Date Joined Mar 2008
Total Posts : 197
   Posted 6/24/2008 1:29 PM (GMT -7)   
Connie,

I've been wondering, and will do some research, that if all of Terry's cancer is gone for an extended time if they would consider a transplant again. I would think that the decision would be up to the UNOS, but you never know what some Dr might be willing to do. I will keep hoping and praying.

Carol
 


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/24/2008 3:23 PM (GMT -7)   

Carol, that's true.  The clinical picture could change.  And prayers do help.  :-)

Hugs,

Connie

New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, December 08, 2016 3:12 PM (GMT -7)
There are a total of 2,734,927 posts in 301,259 threads.
View Active Threads


Who's Online
This forum has 151367 registered members. Please welcome our newest member, vtu15.
356 Guest(s), 18 Registered Member(s) are currently online.  Details
blueberrymuffin, Darkwolf, abb, chrisp1, Rikky1, Gemlin, dismissed, Scaredy Cat, Almost a 10, mpost, smlafleur, wpack3, DennisinNY, vtu15, ks1905, Ariel Smith, sam12, multifacetedme


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer