Liver Cancer in new liver

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okielady
Regular Member


Date Joined Sep 2007
Total Posts : 77
   Posted 5/29/2008 8:31 PM (GMT -7)   
Hello everyone,
I know I haven't posted much in a while, Jerry had his transplant in October 07. We found out Tuesday the biopsy came back showing he has cancer in his new liver and in the adrenal glands.  We go tomorrow and visit with the oncologist and get the official diagnosis and prognosis.  The doc is talking about putting him on Nexavar.  Does anybody have any experience with this?  Good luck tomorrow Connie, you've gone thru alot and are tuff.  Stay strong.
Helen

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 5/29/2008 8:45 PM (GMT -7)   
Hello Okielady, I am so sorry to hear about your husband's new liver. And yes we do have a member who's husband is taking Nexavar and seems to be having good results.

My husband was going to take it but we didn't get it in time. Some one here told me about it and I asked to tell his cancer doctor if he could take it. You know that stupid doctor was in on the studies with it and never said a word about it to us until I brought it up. And then he would not do anything. I got my husband a different cancer doctor in our home town pronto and he got it for him. But it was not to be. My husband died the day that it was to be delivered.

Also another member's mom took it and it didn't work for her. So it is not for everybody but it is definitely worth a try.

Thoughts and prayers. .....
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 5/29/2008 8:56 PM (GMT -7)   

Helen  I am so sorry to hear about your husband. And to think he got a new chance on life.  I don't understand though.  Don't they test the new organ before the transplant or didn't they have enough time for that.  My prayers are with you.  Just hang in there.  New durgs are being developed every day. 

 

JoAnn


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 5/30/2008 2:55 AM (GMT -7)   
Helen

I am so sorry that your family is now having to deal with this. Things can be so unfair. I hope that your husband has success with the Nexavar. Will keep you in my thoughts and prayers.

Lucy

Caregiverx3<3
Regular Member


Date Joined Mar 2008
Total Posts : 197
   Posted 5/30/2008 6:46 AM (GMT -7)   
Hello Helen,
I'm so sorry to hear the bad news about your husbands new liver. I kept up with your story when you were posting before. I had been wondering how your husband was doing post transplant.
It is my husband, Terry, who is taking Nexavar. He has primary liver cancer and is on his 3rd month of Nexavar. He has had 2 chemoembolizations and 1 radiofrequency ablation. There is or was some cancer spreading through his portal vein. His AFP levels have dropped from 50,000 to 14! Another 4 phase liver scan is scheduled for June 16. We should know more soon after that.
As for the Nexavar, he is having hardly any sidefx from it. Since May 20 he is a changed man. He awoke saying he felt good and has been going "wide open" most of the day. He is still having some liver pain and takes oxycodone for that. He has a little nausea but has a pill for that too. I can't get him to use sunscreen yet so he has some sunburn, because the Nexavar makes him more sun sensitive. I'll have to work on that one.
He has been feeling bad for so long he had forgotten what it was like to feel good. Sometimes he does too much and falls asleep as soon as he sits down. Then he gets up early in the am and starts all over again.
The Nexavar now costs $6200.00+, but we only have a $15.00 co-pay.
If he continues to take care of his liver, hopefully he will feel good for a long time.
If you think of any questions, please ask. Glad to help all I can.

Carol
 


okielady
Regular Member


Date Joined Sep 2007
Total Posts : 77
   Posted 6/1/2008 3:22 PM (GMT -7)   

We just got back from a road trip to see some of his family and see the oncologist.  Got the official word that yes he does have cancer.  The April ct scan didn't show anything on the liver and the May ct scan showed numerous nodules on the liver, which tells me that this could be fast moving.  Carol did Terry have a transplant?  Jerry is now taking oxycodene for the pain when needed.  We should be getting the Nexavar maybe by the end of this next week or the next.  The doc said he really wasn't a candidate for any Chemo, unless we just insisted.  Jerry's been having some good days just lately and hope they continue for a while.  I'm afraid when he goes down he might not get back up, so I'm really just praying for the best.

Take care all

Helen


Caregiverx3<3
Regular Member


Date Joined Mar 2008
Total Posts : 197
   Posted 6/2/2008 8:35 AM (GMT -7)   
Hi Helen,

No Terry didn't have a transplant. They wanted to list him, but by the time I got him to go to Rehab for Alcohol use, it was to late. The cancer had grown too fast and too large to be concidered for a transplant.
I think Terry did too much while he was feeling good and is now starting to slow down again. He is still getting up early and doing what he can to help out but then needs to rest again.
I sure hope the Nexavar helps Jerry.

Carol
 


Caregiverx3<3
Regular Member


Date Joined Mar 2008
Total Posts : 197
   Posted 6/2/2008 8:35 AM (GMT -7)   

Post Edited (Caregiverx3<1) : 6/2/2008 9:14:00 PM (GMT-6)


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/2/2008 7:12 PM (GMT -7)   

Helen, I'm so sorry to hear that Terry has cancer in his new liver.  Was it infected with hep C or did Terry have untreated hep C?  I was diagnosed with liver cancer from hep C, that had metastasized to the inferior vena cava, rendering the cancer inoperable at the time of diagnosis in '05.  However, I received chemoembolization and TheraSphere, which shrunk the metatstatic tissue back into the main tumor.  A year ago I had the right lobe of my liver removed and have remained cancer free since then.  Nexavar was never mentioned to me, but perhaps it wasn't available 2 years ago.  Regular systemic chemo, in which the chemo goes throughout the body, does not work on liver cancer.  However, if Nexavar doesn't work or can't be used for some reason, perhaps your husband could try chemoembolization and/or TheraSphere (only available at a few hospitals/treatment facilities.)

My prayers are with you and Terry.

God bless,

Connie


okielady
Regular Member


Date Joined Sep 2007
Total Posts : 77
   Posted 6/4/2008 5:29 AM (GMT -7)   

Hey everyone,

We are still having some OK days,  I think the road trip wore Jerry out, but he's not down.  Jerry's new liver was a healthy liver when he got it, I saw the pathology report on the old and new livers.  I believe the cancer had already spread before the transplant.  The docs didn't know he had liver cancer before the transplant.  Any way the cancer is back.  We should get the Nexavar sometime by the end of this week or next.  We wasn't so lucky on the copay, ours was 1350.00, but the drug company is paying most of that and we are going to have to pay 67.50 a month, so we can stand that.  Nexavar became available in Nov 2007 for liver cancer, before that it was used for kidney cancer.  Take care everyone, glad you're doing good Connie.

Helen


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/4/2008 9:06 PM (GMT -7)   

Helen, I'm glad that Jerry is doing okay.  Best of luck with the Nexavar and thanks for the info!  I had my cancer treatment in late '06 and early '07, so it wouldn't have been available then.

Hugs,

Connie


Caregiverx3<3
Regular Member


Date Joined Mar 2008
Total Posts : 197
   Posted 6/5/2008 11:10 AM (GMT -7)   
Helen,
Do they know if the cancer had spread beyond the liver before the transplant. Is that how it got to his new liver?

Carol
 


okielady
Regular Member


Date Joined Sep 2007
Total Posts : 77
   Posted 6/8/2008 12:32 PM (GMT -7)   

Carol

I believe it had, from the first ct scan after the transplant they have mentioned an elargement in the adrenal glands.  Since they didn't know about the cancer when they opened him up, they had a suprise when they did, and got the transplant done and got out as soon as they could. So yes I think it had spread before hand and his immune system has finally given completely out the cancer is back on the move again.  He's losing weight and has a lot of pain at times, but still has a good attitude and doing good right now.

Thanks for the prayers everyone.

Helen


Caregiverx3<3
Regular Member


Date Joined Mar 2008
Total Posts : 197
   Posted 6/19/2008 7:41 PM (GMT -7)   
Hi Helen,
How are you and Jerry doing? Has he started on the Nexevar yet?

Terry got great news from his liver scan. The tumor is gone and his AFP level is down to 8.4. Normal range is <=8.0. He will stay on the Nexevar for awhile longer. I hope it will get rid of the cancer cells in his portal vein. Since there is nothing that can be done about that, I guess it is just a wait and see situation.
He still feels sick and tired though. Hard to celebrate when you feel that way.

Carol
 


soonersfan1
Regular Member


Date Joined Jan 2008
Total Posts : 29
   Posted 6/23/2008 4:21 PM (GMT -7)   
wow thats wonderul news, Had your husband had cancer in his liver and now its gone?
That is really great news. I hope that hes feeling better by now.  I just read you post and thought that its really great when things can go right. I know that dont mean hes out of the woods but its a start.   Good luck,            Soonerfan

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/23/2008 4:30 PM (GMT -7)   

Carol, wow, I'm just seeing your post!  That is wonderful news!  :-)    Hopefully, the Nexavar will wipe out the cancer cells in his portal vein, as well.

Hugs,

Connie


Caregiverx3<3
Regular Member


Date Joined Mar 2008
Total Posts : 197
   Posted 6/23/2008 4:37 PM (GMT -7)   
Hi Soonersfan,
Yep, this is really great news. We are just almost to tired to celebrate though. Maybe it just hasn't really sunk in yet.
Yes his tumor is gone!!! I keep walking by Terry and telling him,"Guess what? THE TUMOR IS GONE!!!" He looks at me like I'm crazy. I almost can't believe it myself. I may have my husband with me for some time yet.
I talked with a Nexavar Nurse today and and she said that the Nexavar will target the cancer that was also in his portal vein. It must be working since it is almost non-active now. She sounded more excited than we do. It was good to hear her encourageing words. She did say that he may have to stay on the Nexavar forever though. That will be up to the Oncologist and Terry.

Thank you Soonersfan,
Carol
 


Caregiverx3<3
Regular Member


Date Joined Mar 2008
Total Posts : 197
   Posted 6/24/2008 8:08 AM (GMT -7)   
Hi Connie,

I think I posted the good news somewhere else. I just can't remember where. I probably keep repeating myself.
You know, this is really great news! What's wrong with us? I guess it's just because Terry is still suffering from liver disease and he doesn't consider this to be quality life. I wish he felt like celebrating with me.

Carol
 

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