The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Leptomeningeal disease and liver failure

Forums General Melanoma Community Leptomeningeal disease and liver failure

  • Post
    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.

      Loading spinner
    Viewing 19 reply threads
    • Replies
        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.

          Loading spinner
          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.

            Loading spinner
            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)

              Loading spinner
              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)

                Loading spinner
                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)

                  Loading spinner
                  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)

                    Loading spinner
                    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

                      Loading spinner
                      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

                        Loading spinner
                          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

                            Loading spinner
                            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

                              Loading spinner
                            jag
                            Participant

                              Jen, I will pray that you and Brian have a peaceful time together.

                              Regards

                              John

                              Loading spinner
                              jag
                              Participant

                                Jen, I will pray that you and Brian have a peaceful time together.

                                Regards

                                John

                                Loading spinner
                                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

                                  Loading spinner
                                  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

                                    Loading spinner
                                      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

                                        Loading spinner
                                        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

                                          Loading spinner
                                          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.

                                            Loading spinner
                                            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.

                                              Loading spinner
                                              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

                                                Loading spinner
                                                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

                                                  Loading spinner
                                                Rocklove
                                                Participant

                                                  Praying for that Miracle.

                                                  Rocky (Stage IV Liver Mets)

                                                  Loading spinner
                                                  Rocklove
                                                  Participant

                                                    Praying for that Miracle.

                                                    Rocky (Stage IV Liver Mets)

                                                    Loading spinner
                                                    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

                                                      Loading spinner
                                                      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

                                                        Loading spinner
                                                        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

                                                          Loading spinner
                                                          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

                                                            Loading spinner
                                                            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?

                                                              Loading spinner
                                                                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

                                                                  Loading spinner
                                                                  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

                                                                    Loading spinner
                                                                  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?

                                                                    Loading spinner
                                                                Viewing 19 reply threads
                                                                • You must be logged in to reply to this topic.
                                                                About the MRF Patient Forum

                                                                The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                                                                The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.