Leptomeningeal disease and liver failure

This topic has 30 replies, 12 voices, and was last updated 13 years, 1 month ago by Sherron.

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- January 26, 2011 at 8:31 pm
- Quote
jenniperry
Participant
Haven’t posted in awhile. Brian went in for IL2 Dec.14th due to no trial openings of other treatments. While having IL2 they did an MRI since one of his eyes wasn’t responding to light correctly. They then told us he has leptomeningeal disease, and his liver was very enlarged and his abdomen was distended from fluid. We were in the hospital until Dec. 21st and went home with the words, he has a few weeks…. We are devastated. He has declined in the five weeks since and now vomits a lot and his liver is failing.

Haven’t posted in awhile. Brian went in for IL2 Dec.14th due to no trial openings of other treatments. While having IL2 they did an MRI since one of his eyes wasn’t responding to light correctly. They then told us he has leptomeningeal disease, and his liver was very enlarged and his abdomen was distended from fluid. We were in the hospital until Dec. 21st and went home with the words, he has a few weeks…. We are devastated. He has declined in the five weeks since and now vomits a lot and his liver is failing. The doctor said they couldn’t do whole brain radiation because it would just torture him and then the liver would kill him. He’s lost about 15 lbs, some he has gained in fluid, so it’s more weight than the 15lbs most likely. Hospice has been coming twice a week. He sleeps most of the day and is awake anywhere from 5 to 7hours, a lot of which he feels really bad. Pain meds are working better now. We are just trying to keep him comfortable and say all we can while there is still time. He is only 41 and is so sad to leave as we are to lose him. We do trust he is safe in the hands of God, as are we. Still praying for a miracle.

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- - January 26, 2011 at 9:06 pm
  - Quote
  Lori C
  Participant
  I will continue to pray for a mirachle with you.
  
  I am glad the pain meds are working better and hope that things can be kept very comfortable.
  
  I am so sorry you are going through this – 41 is far, far too young, you are right. I wish I had words that would make a difference. I know better. If you need to talk at all, please email me. Will went through liver failure as well. The symptoms you describe are painfully familiar to me.
- - January 26, 2011 at 9:06 pm
  - Quote
  Lori C
  Participant
  I will continue to pray for a mirachle with you.
  
  I am glad the pain meds are working better and hope that things can be kept very comfortable.
  
  I am so sorry you are going through this – 41 is far, far too young, you are right. I wish I had words that would make a difference. I know better. If you need to talk at all, please email me. Will went through liver failure as well. The symptoms you describe are painfully familiar to me.
- - January 26, 2011 at 10:39 pm
  - Quote
  Phil S
  Participant
  My heart goes out to your family at this time. This terrible disease affects far too many lives and you husband is so young. I will pray tonight for your continued strength and for peace and comfort for Brian. God Bless! Valerie (Phil's wife)
- - January 26, 2011 at 10:39 pm
  - Quote
  Phil S
  Participant
  My heart goes out to your family at this time. This terrible disease affects far too many lives and you husband is so young. I will pray tonight for your continued strength and for peace and comfort for Brian. God Bless! Valerie (Phil's wife)
- - January 26, 2011 at 10:53 pm
  - Quote
  patobs01
  Participant
  It is a heartbreaking time, but not over yet and miracles are still possible. I will keep you and your family in my prayers. It sounds like you are doing all the right things, and I hope Hospice will be able to doing everything to keep him comfortable.
  
  Take care,
  
  Pat O. – III A (dx. 9/09)
- - January 26, 2011 at 10:53 pm
  - Quote
  patobs01
  Participant
  It is a heartbreaking time, but not over yet and miracles are still possible. I will keep you and your family in my prayers. It sounds like you are doing all the right things, and I hope Hospice will be able to doing everything to keep him comfortable.
  
  Take care,
  
  Pat O. – III A (dx. 9/09)
- - January 26, 2011 at 11:46 pm
  - Quote
  EricNJill
  Participant
  Hi Jennifer! I just wanted to tell you that we love you and are praying for your family. Hang in there girl!
  
  Do not fear, for I am with you; do not anxiously look about you, for I am your God. I will strengthen you, surely I will help you, surely I will uphold you with My righteous right hand. Isaiah 41:10
  
  JillNEric in OH
  - January 27, 2011 at 3:19 am
    
    Quote
    jenniperry
    Participant
    
    thank you Jill. I needed that today. we sold brian's suv yesterday. we knew it was the right decision. It was sitting 2 months and we are paying so much to keep it. they bought it back for exactly what we owed and we only had it a year! usually you would be so upside down. God is good. I won't lie though, i cry every time I go into the garage
    
    love you
  - January 27, 2011 at 3:19 am
    
    Quote
    jenniperry
    Participant
    
    thank you Jill. I needed that today. we sold brian's suv yesterday. we knew it was the right decision. It was sitting 2 months and we are paying so much to keep it. they bought it back for exactly what we owed and we only had it a year! usually you would be so upside down. God is good. I won't lie though, i cry every time I go into the garage
    
    love you
- - January 26, 2011 at 11:46 pm
  - Quote
  EricNJill
  Participant
  Hi Jennifer! I just wanted to tell you that we love you and are praying for your family. Hang in there girl!
  
  Do not fear, for I am with you; do not anxiously look about you, for I am your God. I will strengthen you, surely I will help you, surely I will uphold you with My righteous right hand. Isaiah 41:10
  
  JillNEric in OH
- - January 27, 2011 at 12:27 am
  - Quote
  jag
  Participant
  Jen, I will pray that you and Brian have a peaceful time together.
  
  Regards
  
  John
- - January 27, 2011 at 12:27 am
  - Quote
  jag
  Participant
  Jen, I will pray that you and Brian have a peaceful time together.
  
  Regards
  
  John
- - January 27, 2011 at 12:40 am
  - Quote
  Sherron
  Participant
  Jenni, I am so sorry it has come to this for you and Brian. I know it is hard. I have just walked this journey and still walking it. I am so glad he is able to be home…that is such a gift! Jim wanted to come home so bad, but he was just way toO sick, but he talked about getting better and going home. I felt so bad that we could not get to that point to where he could go home..Jim had to have 24/7 care. I pray for a miracle for you! I pray you make precious memories. Keep God close to your heart.
  
  Take Care,
  
  Sherron, wife to Jim FOREVER
- - January 27, 2011 at 12:40 am
  - Quote
  Sherron
  Participant
  Jenni, I am so sorry it has come to this for you and Brian. I know it is hard. I have just walked this journey and still walking it. I am so glad he is able to be home…that is such a gift! Jim wanted to come home so bad, but he was just way toO sick, but he talked about getting better and going home. I felt so bad that we could not get to that point to where he could go home..Jim had to have 24/7 care. I pray for a miracle for you! I pray you make precious memories. Keep God close to your heart.
  
  Take Care,
  
  Sherron, wife to Jim FOREVER
  - January 27, 2011 at 2:49 am
    
    Quote
    cherimichele
    Participant
    
    Hi Jenni..
    
    I just had to write and send you big hugs…
    
    my dear friend has just joined this most unfortunate club.. and I am here collecting info to help him..
    
    in reading your post… tears came…
    
    Life can be so hard at times… this is just so sad…
    
    i wish i could help… praying with you for a miracle is all i have to offer..
    
    and i promise.. that i will do just that..
    
    take care of yourself..
    
    peace… Michele
  - January 27, 2011 at 3:24 am
    
    Quote
    jenniperry
    Participant
    
    thank you all for the encouragement. I keep waiting to see if anyone else has those two things going on at the same time. Liver failure from mets and leptomeningeal disease. I had a doctor post on his page that he should drink soy sauce, chase it with black coffee and then eggs. He is the one that says he can cure cancer in 2 weeks. Well do it then loser! I hate when people think they know how to cure this with some magic potion. God is the only cure for what my husband has.
  - January 27, 2011 at 3:14 pm
    
    Quote
    Laurie from maine
    Participant
    
    HI,
    
    I am so sorry that this is happening to you both. You are right he is too young! I am glad you have hospice to help you and hope that the pain meds can help him. I just want you to know I am thinking and praying for him and you.
    
    laurie
  - January 27, 2011 at 3:14 pm
    
    Quote
    Laurie from maine
    Participant
    
    HI,
    
    I am so sorry that this is happening to you both. You are right he is too young! I am glad you have hospice to help you and hope that the pain meds can help him. I just want you to know I am thinking and praying for him and you.
    
    laurie
  - January 27, 2011 at 3:24 am
    
    Quote
    jenniperry
    Participant
    
    thank you all for the encouragement. I keep waiting to see if anyone else has those two things going on at the same time. Liver failure from mets and leptomeningeal disease. I had a doctor post on his page that he should drink soy sauce, chase it with black coffee and then eggs. He is the one that says he can cure cancer in 2 weeks. Well do it then loser! I hate when people think they know how to cure this with some magic potion. God is the only cure for what my husband has.
  - January 27, 2011 at 2:49 am
    
    Quote
    cherimichele
    Participant
    
    Hi Jenni..
    
    I just had to write and send you big hugs…
    
    my dear friend has just joined this most unfortunate club.. and I am here collecting info to help him..
    
    in reading your post… tears came…
    
    Life can be so hard at times… this is just so sad…
    
    i wish i could help… praying with you for a miracle is all i have to offer..
    
    and i promise.. that i will do just that..
    
    take care of yourself..
    
    peace… Michele
- - March 7, 2011 at 10:34 am
  - Quote
  Rocklove
  Participant
  Praying for that Miracle.
  
  Rocky (Stage IV Liver Mets)
- - March 7, 2011 at 10:34 am
  - Quote
  Rocklove
  Participant
  Praying for that Miracle.
  
  Rocky (Stage IV Liver Mets)
- - March 7, 2011 at 11:26 am
  - Quote
  FormerCaregiver
  Participant
  Sorry to read about Brian's condition. My late wife had liver mets that
  caused her to go from stable disease to being critically ill within 3
  months. She didn't have leptomeningeal disease, but vomiting was a great
  problem for her. I remember taking her to hospital when I couldn't care for
  her anymore, and luckily they agreed to admit her. The nurses tried their
  best at making her comfortable, but unfortunately there was nothing more
  that anyone could do for her.
  
  Frank
- - March 7, 2011 at 11:26 am
  - Quote
  FormerCaregiver
  Participant
  Sorry to read about Brian's condition. My late wife had liver mets that
  caused her to go from stable disease to being critically ill within 3
  months. She didn't have leptomeningeal disease, but vomiting was a great
  problem for her. I remember taking her to hospital when I couldn't care for
  her anymore, and luckily they agreed to admit her. The nurses tried their
  best at making her comfortable, but unfortunately there was nothing more
  that anyone could do for her.
  
  Frank
- - March 7, 2011 at 7:54 pm
  - Quote
  Sherron
  Participant
  Awhh, Jenni, I am so sorry you are going through this journey. I know it to well. I lost my husband on Nov 30, 2010.
  
  I pray for your husband to pain free, and peace for you, although I know that is so hard. I am still going through a very difficult time. Hold on to God's Hand…, very tightly.
  
  Take Care,
  
  Sherron, wife to Jim FOREVER
- - March 7, 2011 at 7:54 pm
  - Quote
  Sherron
  Participant
  Awhh, Jenni, I am so sorry you are going through this journey. I know it to well. I lost my husband on Nov 30, 2010.
  
  I pray for your husband to pain free, and peace for you, although I know that is so hard. I am still going through a very difficult time. Hold on to God's Hand…, very tightly.
  
  Take Care,
  
  Sherron, wife to Jim FOREVER
- - March 7, 2011 at 8:49 pm
  - Quote
  W.
  Participant
  Hi,
  
  I just want to point out that this post is already 5-6 weeks old and was only brought back to the first page by a spammer account.
  
  Maybe the original post date should be featured more prominently on the bb?
  - March 7, 2011 at 10:41 pm
    
    Quote
    Sherron
    Participant
    
    You know, you are right, after I commented, I realized, I believe on my Face Book that Jill & Erice, commented that he had just passed…I did not realize this until I had alread commented that it was that person…This just recently happened, maybe this weekend…….so sorry
  - March 7, 2011 at 10:41 pm
    
    Quote
    Sherron
    Participant
    
    You know, you are right, after I commented, I realized, I believe on my Face Book that Jill & Erice, commented that he had just passed…I did not realize this until I had alread commented that it was that person…This just recently happened, maybe this weekend…….so sorry
- - March 7, 2011 at 8:49 pm
  - Quote
  W.
  Participant
  Hi,
  
  I just want to point out that this post is already 5-6 weeks old and was only brought back to the first page by a spammer account.
  
  Maybe the original post date should be featured more prominently on the bb?