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.

Craniotomy Thursday

Forums General Melanoma Community Craniotomy Thursday

  • Post
    Terrified
    Participant

      Unable to sleep, I sit here in the hospital listening to my beautiful husband breathe. Sometimes labored and coughing, at other times more restful. He is the best man in the world. I know that a love like ours is rare and I am so grateful for that gift. But it also makes the pain of seeing him like this that much worse. 

      He was admitted for nausea/vomiting and confusion. He has progressive melanoma in his lungs and abdomen and bleeding and swelling in his brain. He has not responded as well as hoped to high dose steroids for the swelling and Thursday will undergo a craniotomy. Then after recovery from that he will start IV immunotherapy. The worry is that starting immunotherapy now may increase cerebral edema and need for more delay of treatment or even herniation. 
      The oncologist believes this is our best plan, but admits that his rapid advancement of disease is not reassuring. He failed MEK/taf after just two weeks.
      Always the better person, he does not rail against God for this happening. I am not so inclined. Those of you who believe in the power of prayer, please pray for a miracle. 
       
      Judy 
    Viewing 35 reply threads
    • Replies
        Michelle820
        Participant

          (((Hugs))) I am so sorry. Please know that your husband will be in my thoughts and prayers most definitely. I do believe in miracle!

          Michelle820
          Participant

            (((Hugs))) I am so sorry. Please know that your husband will be in my thoughts and prayers most definitely. I do believe in miracle!

              Terrified
              Participant

                Thank you 

                Judy

                Terrified
                Participant

                  Thank you 

                  Judy

                  Terrified
                  Participant

                    Thank you 

                    Judy

                  Michelle820
                  Participant

                    (((Hugs))) I am so sorry. Please know that your husband will be in my thoughts and prayers most definitely. I do believe in miracle!

                    Mamapegela
                    Participant

                      Dear Judy- I am saying a prayer for peace and healing for your husband.  This is so brutal- I am sorry you are going through it.  I am relatively new to this forum and to the melanoma world so I can't offer you any advice as to possible courses of action but want you to know that I am thinking of you.

                      Peggy

                        Terrified
                        Participant

                          Thank you

                           

                          judy

                          Terrified
                          Participant

                            Thank you

                             

                            judy

                            Terrified
                            Participant

                              Thank you

                               

                              judy

                            Mamapegela
                            Participant

                              Dear Judy- I am saying a prayer for peace and healing for your husband.  This is so brutal- I am sorry you are going through it.  I am relatively new to this forum and to the melanoma world so I can't offer you any advice as to possible courses of action but want you to know that I am thinking of you.

                              Peggy

                              Mamapegela
                              Participant

                                Dear Judy- I am saying a prayer for peace and healing for your husband.  This is so brutal- I am sorry you are going through it.  I am relatively new to this forum and to the melanoma world so I can't offer you any advice as to possible courses of action but want you to know that I am thinking of you.

                                Peggy

                                momof4boys
                                Participant
                                  I will definitely pray for your husband as I too believe in the power of prayer. GOD can produce miracles! Im so sorry you are in this situation and I just wanted you to know your mel family is thinking of you. Stay strong, this isn’t over. You just need to find the right treatment!
                                  momof4boys
                                  Participant
                                    I will definitely pray for your husband as I too believe in the power of prayer. GOD can produce miracles! Im so sorry you are in this situation and I just wanted you to know your mel family is thinking of you. Stay strong, this isn’t over. You just need to find the right treatment!
                                      Terrified
                                      Participant

                                        Thank you.

                                        Judy

                                        Terrified
                                        Participant

                                          Thank you.

                                          Judy

                                          Terrified
                                          Participant

                                            Thank you.

                                            Judy

                                          momof4boys
                                          Participant
                                            I will definitely pray for your husband as I too believe in the power of prayer. GOD can produce miracles! Im so sorry you are in this situation and I just wanted you to know your mel family is thinking of you. Stay strong, this isn’t over. You just need to find the right treatment!
                                            Hukill
                                            Participant

                                              I will also say a prayer for both of you. When I found out I had 7 mets in my lungs I never question God on why. I was thankful that he did not allow me to have any more mets anywhere else. i truely believe that your husband's fate as well as my own is in God's hands and we don't know the reason why he does what he does. Even though my immunotherapy treatment seems to be working, I also realize God could end my life when ever he chooses to and I am ok with that. I hope your husban has a good reaction to the immunotherapy drugs. Do you know what drugs he will be receiving?

                                              Hukill
                                              Participant

                                                I will also say a prayer for both of you. When I found out I had 7 mets in my lungs I never question God on why. I was thankful that he did not allow me to have any more mets anywhere else. i truely believe that your husband's fate as well as my own is in God's hands and we don't know the reason why he does what he does. Even though my immunotherapy treatment seems to be working, I also realize God could end my life when ever he chooses to and I am ok with that. I hope your husban has a good reaction to the immunotherapy drugs. Do you know what drugs he will be receiving?

                                                Hukill
                                                Participant

                                                  I will also say a prayer for both of you. When I found out I had 7 mets in my lungs I never question God on why. I was thankful that he did not allow me to have any more mets anywhere else. i truely believe that your husband's fate as well as my own is in God's hands and we don't know the reason why he does what he does. Even though my immunotherapy treatment seems to be working, I also realize God could end my life when ever he chooses to and I am ok with that. I hope your husban has a good reaction to the immunotherapy drugs. Do you know what drugs he will be receiving?

                                                    Terrified
                                                    Participant

                                                      Thank you.

                                                      Judy

                                                      Terrified
                                                      Participant

                                                        Thank you.

                                                        Judy

                                                        Terrified
                                                        Participant

                                                          Thank you.

                                                          Judy

                                                        marta010
                                                        Participant

                                                          Judy – I've been in your shoes (and hospital bedside) with my husband.  He has had 2 craniotomies and recovered readily after each of them.  Do not lose hope.  This is a long battle that must be faced one day at a time.

                                                          Is he off the taf/mek?  I'm a little surprised that this has been viewed as a failure so soon since its effectiveness in the brain may be less apparent than in the rest of his body.  I would also ask about the use of Avastin for dealing with any brain edema post surgery.  My husband had a problem with edema after his first crainiotomy that was not responding to steriods and it cleared up after 4 infusions with Avastin.  

                                                          Thinking of you and sending prayers.

                                                          Ann

                                                          marta010
                                                          Participant

                                                            Judy – I've been in your shoes (and hospital bedside) with my husband.  He has had 2 craniotomies and recovered readily after each of them.  Do not lose hope.  This is a long battle that must be faced one day at a time.

                                                            Is he off the taf/mek?  I'm a little surprised that this has been viewed as a failure so soon since its effectiveness in the brain may be less apparent than in the rest of his body.  I would also ask about the use of Avastin for dealing with any brain edema post surgery.  My husband had a problem with edema after his first crainiotomy that was not responding to steriods and it cleared up after 4 infusions with Avastin.  

                                                            Thinking of you and sending prayers.

                                                            Ann

                                                              Terrified
                                                              Participant

                                                                Ann

                                                                The failure of taf/MEK is deemed because of new sub q nodule, new mesentery mets and progression of lung disease.

                                                                thanks for reassuring me about the craniotomy and info about Avastin

                                                                 

                                                                judy

                                                                Terrified
                                                                Participant

                                                                  Ann

                                                                  The failure of taf/MEK is deemed because of new sub q nodule, new mesentery mets and progression of lung disease.

                                                                  thanks for reassuring me about the craniotomy and info about Avastin

                                                                   

                                                                  judy

                                                                  Terrified
                                                                  Participant

                                                                    Ann

                                                                    The failure of taf/MEK is deemed because of new sub q nodule, new mesentery mets and progression of lung disease.

                                                                    thanks for reassuring me about the craniotomy and info about Avastin

                                                                     

                                                                    judy

                                                                  marta010
                                                                  Participant

                                                                    Judy – I've been in your shoes (and hospital bedside) with my husband.  He has had 2 craniotomies and recovered readily after each of them.  Do not lose hope.  This is a long battle that must be faced one day at a time.

                                                                    Is he off the taf/mek?  I'm a little surprised that this has been viewed as a failure so soon since its effectiveness in the brain may be less apparent than in the rest of his body.  I would also ask about the use of Avastin for dealing with any brain edema post surgery.  My husband had a problem with edema after his first crainiotomy that was not responding to steriods and it cleared up after 4 infusions with Avastin.  

                                                                    Thinking of you and sending prayers.

                                                                    Ann

                                                                    Scooby123
                                                                    Participant

                                                                      So sorry praying for you. Hope things improve after treatment. Keep strong.

                                                                      scooby xx

                                                                      Scooby123
                                                                      Participant

                                                                        So sorry praying for you. Hope things improve after treatment. Keep strong.

                                                                        scooby xx

                                                                          Terrified
                                                                          Participant

                                                                            Thank you

                                                                            Judy

                                                                            Terrified
                                                                            Participant

                                                                              Thank you

                                                                              Judy

                                                                              Terrified
                                                                              Participant

                                                                                Thank you

                                                                                Judy

                                                                              Scooby123
                                                                              Participant

                                                                                So sorry praying for you. Hope things improve after treatment. Keep strong.

                                                                                scooby xx

                                                                                snow white
                                                                                Participant

                                                                                  Hi Judy.  We just went through this with my Dad about 9 weeks ago.  He had 15 brain mets in his brain, over 20 in his spleen and a few in others in various areas of the body.  He had Gamma Knife on his brain and 4 days later he became almost completely paralyzed from swelling.  He was admitted and given high dose steroids, it didn't take down the swelling. Two days later he had a craniotomy.  He had to have 3 large tumors (one the size of a small lemon)removed.  Surgery went well, he spent one day in ICU, two more days in the hospital after than and then 10 days in rehab facility.  I am happy to say that he is walking, talking, and going about his daily life. He is still somewhat dizzy, and slow (low energy), but over all he is doing great!  He receives his infusion of OPDIVO ever other week and so far so good.  Orginally he was given 4-6 months to live.  Keep the faith, just get through this one step at a time.

                                                                                  Positive thoughts and well wishes coming your way.

                                                                                  Jen

                                                                                  snow white
                                                                                  Participant

                                                                                    Hi Judy.  We just went through this with my Dad about 9 weeks ago.  He had 15 brain mets in his brain, over 20 in his spleen and a few in others in various areas of the body.  He had Gamma Knife on his brain and 4 days later he became almost completely paralyzed from swelling.  He was admitted and given high dose steroids, it didn't take down the swelling. Two days later he had a craniotomy.  He had to have 3 large tumors (one the size of a small lemon)removed.  Surgery went well, he spent one day in ICU, two more days in the hospital after than and then 10 days in rehab facility.  I am happy to say that he is walking, talking, and going about his daily life. He is still somewhat dizzy, and slow (low energy), but over all he is doing great!  He receives his infusion of OPDIVO ever other week and so far so good.  Orginally he was given 4-6 months to live.  Keep the faith, just get through this one step at a time.

                                                                                    Positive thoughts and well wishes coming your way.

                                                                                    Jen

                                                                                      keepthefaith11
                                                                                      Participant
                                                                                        Swelling seems to be a recurring problem for lpts of people, including Judy’s husband. What finally worked for your dad’s swelling to ease up?

                                                                                        Annie

                                                                                        keepthefaith11
                                                                                        Participant
                                                                                          Swelling seems to be a recurring problem for lpts of people, including Judy’s husband. What finally worked for your dad’s swelling to ease up?

                                                                                          Annie

                                                                                          snow white
                                                                                          Participant

                                                                                            Hi Annie- The Craiotomy is what finally brought the swelling down.  2 of the 3 larger tumors were "kissing" each other.  Once all three were out, the relief was almost immediate.  He was moving his arms much better just hours after surgery.

                                                                                            snow white
                                                                                            Participant

                                                                                              Hi Annie- The Craiotomy is what finally brought the swelling down.  2 of the 3 larger tumors were "kissing" each other.  Once all three were out, the relief was almost immediate.  He was moving his arms much better just hours after surgery.

                                                                                              snow white
                                                                                              Participant

                                                                                                Hi Annie- The Craiotomy is what finally brought the swelling down.  2 of the 3 larger tumors were "kissing" each other.  Once all three were out, the relief was almost immediate.  He was moving his arms much better just hours after surgery.

                                                                                                keepthefaith11
                                                                                                Participant
                                                                                                  Swelling seems to be a recurring problem for lpts of people, including Judy’s husband. What finally worked for your dad’s swelling to ease up?

                                                                                                  Annie

                                                                                                snow white
                                                                                                Participant

                                                                                                  Hi Judy.  We just went through this with my Dad about 9 weeks ago.  He had 15 brain mets in his brain, over 20 in his spleen and a few in others in various areas of the body.  He had Gamma Knife on his brain and 4 days later he became almost completely paralyzed from swelling.  He was admitted and given high dose steroids, it didn't take down the swelling. Two days later he had a craniotomy.  He had to have 3 large tumors (one the size of a small lemon)removed.  Surgery went well, he spent one day in ICU, two more days in the hospital after than and then 10 days in rehab facility.  I am happy to say that he is walking, talking, and going about his daily life. He is still somewhat dizzy, and slow (low energy), but over all he is doing great!  He receives his infusion of OPDIVO ever other week and so far so good.  Orginally he was given 4-6 months to live.  Keep the faith, just get through this one step at a time.

                                                                                                  Positive thoughts and well wishes coming your way.

                                                                                                  Jen

                                                                                                  keepthefaith11
                                                                                                  Participant
                                                                                                    Judy, I think craniotomy is a smart way to go. To get rid of some of the pressure in the brain. The brain HAS to be dealt with first and foremost.

                                                                                                    Thinking of you. Keep us updated.

                                                                                                    Annie

                                                                                                    keepthefaith11
                                                                                                    Participant
                                                                                                      Judy, I think craniotomy is a smart way to go. To get rid of some of the pressure in the brain. The brain HAS to be dealt with first and foremost.

                                                                                                      Thinking of you. Keep us updated.

                                                                                                      Annie

                                                                                                      keepthefaith11
                                                                                                      Participant
                                                                                                        Judy, I think craniotomy is a smart way to go. To get rid of some of the pressure in the brain. The brain HAS to be dealt with first and foremost.

                                                                                                        Thinking of you. Keep us updated.

                                                                                                        Annie

                                                                                                        jennunicorn
                                                                                                        Participant

                                                                                                          Sending hugs and positive thoughts for your husband

                                                                                                          jennunicorn
                                                                                                          Participant

                                                                                                            Sending hugs and positive thoughts for your husband

                                                                                                            jennunicorn
                                                                                                            Participant

                                                                                                              Sending hugs and positive thoughts for your husband

                                                                                                              marta010
                                                                                                              Participant

                                                                                                                Judy – thinking of you and your husband today.  Sending prayers for a successful surgery and rapid recovery.  Take care.

                                                                                                                Ann

                                                                                                                marta010
                                                                                                                Participant

                                                                                                                  Judy – thinking of you and your husband today.  Sending prayers for a successful surgery and rapid recovery.  Take care.

                                                                                                                  Ann

                                                                                                                  marta010
                                                                                                                  Participant

                                                                                                                    Judy – thinking of you and your husband today.  Sending prayers for a successful surgery and rapid recovery.  Take care.

                                                                                                                    Ann

                                                                                                                    _Paul_
                                                                                                                    Participant

                                                                                                                      Judy,

                                                                                                                      I am praying that the craniotomy will give your husband similar relief to what others have posted and that in hindsight this will be just a large bump (mountain?) on the road

                                                                                                                      – Paul 

                                                                                                                      _Paul_
                                                                                                                      Participant

                                                                                                                        Judy,

                                                                                                                        I am praying that the craniotomy will give your husband similar relief to what others have posted and that in hindsight this will be just a large bump (mountain?) on the road

                                                                                                                        – Paul 

                                                                                                                        _Paul_
                                                                                                                        Participant

                                                                                                                          Judy,

                                                                                                                          I am praying that the craniotomy will give your husband similar relief to what others have posted and that in hindsight this will be just a large bump (mountain?) on the road

                                                                                                                          – Paul 

                                                                                                                          keepthefaith11
                                                                                                                          Participant
                                                                                                                            Judy, how did things go yesterday. Thinking of you.

                                                                                                                            Annie

                                                                                                                            keepthefaith11
                                                                                                                            Participant
                                                                                                                              Judy, how did things go yesterday. Thinking of you.

                                                                                                                              Annie

                                                                                                                              keepthefaith11
                                                                                                                              Participant
                                                                                                                                Judy, how did things go yesterday. Thinking of you.

                                                                                                                                Annie

                                                                                                                                  Terrified
                                                                                                                                  Participant

                                                                                                                                    Craniotomy went smoothly and no complications. He is thinking clearly! Spontaneous conversations and a sense of humor. Still weak, but despite peritoneal disease, the nausea has also not returned.Moving out of ICU tonite and to start ( not sure if Opdivo or Kettruda) in one week. May off label keep the MEK. Thank you all for your love. 

                                                                                                                                    Vince was upset he didn't get me a Christmas present. I assure him I received the best Christmas present ever- his personality is back!

                                                                                                                                    Judy

                                                                                                                                    Terrified
                                                                                                                                    Participant

                                                                                                                                      Craniotomy went smoothly and no complications. He is thinking clearly! Spontaneous conversations and a sense of humor. Still weak, but despite peritoneal disease, the nausea has also not returned.Moving out of ICU tonite and to start ( not sure if Opdivo or Kettruda) in one week. May off label keep the MEK. Thank you all for your love. 

                                                                                                                                      Vince was upset he didn't get me a Christmas present. I assure him I received the best Christmas present ever- his personality is back!

                                                                                                                                      Judy

                                                                                                                                      Terrified
                                                                                                                                      Participant

                                                                                                                                        Craniotomy went smoothly and no complications. He is thinking clearly! Spontaneous conversations and a sense of humor. Still weak, but despite peritoneal disease, the nausea has also not returned.Moving out of ICU tonite and to start ( not sure if Opdivo or Kettruda) in one week. May off label keep the MEK. Thank you all for your love. 

                                                                                                                                        Vince was upset he didn't get me a Christmas present. I assure him I received the best Christmas present ever- his personality is back!

                                                                                                                                        Judy

                                                                                                                                        _Paul_
                                                                                                                                        Participant

                                                                                                                                          That's fantastic news Judy! You are so right – what an awesome Christmas present!

                                                                                                                                          – Paul

                                                                                                                                          _Paul_
                                                                                                                                          Participant

                                                                                                                                            That's fantastic news Judy! You are so right – what an awesome Christmas present!

                                                                                                                                            – Paul

                                                                                                                                            _Paul_
                                                                                                                                            Participant

                                                                                                                                              That's fantastic news Judy! You are so right – what an awesome Christmas present!

                                                                                                                                              – Paul

                                                                                                                                              snow white
                                                                                                                                              Participant

                                                                                                                                                woop woop!  This is fantastic news!!!!!

                                                                                                                                                snow white
                                                                                                                                                Participant

                                                                                                                                                  woop woop!  This is fantastic news!!!!!

                                                                                                                                                  snow white
                                                                                                                                                  Participant

                                                                                                                                                    woop woop!  This is fantastic news!!!!!

                                                                                                                                                    marta010
                                                                                                                                                    Participant

                                                                                                                                                      Judy – so glad to hear the surgery was a success.  Was thinking about you and hoping this was the case.  Truly a Christmas miracle!

                                                                                                                                                      Ann

                                                                                                                                                      marta010
                                                                                                                                                      Participant

                                                                                                                                                        Judy – so glad to hear the surgery was a success.  Was thinking about you and hoping this was the case.  Truly a Christmas miracle!

                                                                                                                                                        Ann

                                                                                                                                                        marta010
                                                                                                                                                        Participant

                                                                                                                                                          Judy – so glad to hear the surgery was a success.  Was thinking about you and hoping this was the case.  Truly a Christmas miracle!

                                                                                                                                                          Ann

                                                                                                                                                    Viewing 35 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.

                                                                                                                                                    Popular Topics