Craniotomy Thursday
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Craniotomy Thursday

› Forums › General Melanoma Community › Craniotomy Thursday

  • Post
    • December 21, 2016 at 5:48 am
    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
      • December 21, 2016 at 11:11 am
      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!

        • December 21, 2016 at 5:37 pm
        Terrified
        Participant

        Thank you 

        Judy

        • December 21, 2016 at 5:37 pm
        Terrified
        Participant

        Thank you 

        Judy

        • December 21, 2016 at 5:37 pm
        Terrified
        Participant

        Thank you 

        Judy

      • December 21, 2016 at 11:11 am
      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!

      • December 21, 2016 at 11:11 am
      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!

      • December 21, 2016 at 12:42 pm
      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

        • December 21, 2016 at 5:37 pm
        Terrified
        Participant

        Thank you

         

        judy

        • December 21, 2016 at 5:37 pm
        Terrified
        Participant

        Thank you

         

        judy

        • December 21, 2016 at 5:37 pm
        Terrified
        Participant

        Thank you

         

        judy

      • December 21, 2016 at 12:42 pm
      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

      • December 21, 2016 at 12:42 pm
      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

      • December 21, 2016 at 1:08 pm
      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!
        • December 21, 2016 at 5:36 pm
        Terrified
        Participant

        Thank you.

        Judy

        • December 21, 2016 at 5:36 pm
        Terrified
        Participant

        Thank you.

        Judy

        • December 21, 2016 at 5:36 pm
        Terrified
        Participant

        Thank you.

        Judy

      • December 21, 2016 at 1:08 pm
      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!
      • December 21, 2016 at 1:08 pm
      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!
      • December 21, 2016 at 2:09 pm
      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?

        • December 21, 2016 at 5:36 pm
        Terrified
        Participant

        Thank you.

        Judy

        • December 21, 2016 at 5:36 pm
        Terrified
        Participant

        Thank you.

        Judy

        • December 21, 2016 at 5:36 pm
        Terrified
        Participant

        Thank you.

        Judy

      • December 21, 2016 at 2:09 pm
      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?

      • December 21, 2016 at 2:09 pm
      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?

      • December 21, 2016 at 2:28 pm
      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

        • December 21, 2016 at 5:35 pm
        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

        • December 21, 2016 at 5:35 pm
        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

        • December 21, 2016 at 5:35 pm
        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

      • December 21, 2016 at 2:28 pm
      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

      • December 21, 2016 at 2:28 pm
      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

      • December 21, 2016 at 4:13 pm
      Scooby123
      Participant

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

      scooby xx

        • December 21, 2016 at 5:35 pm
        Terrified
        Participant

        Thank you

        Judy

        • December 21, 2016 at 5:35 pm
        Terrified
        Participant

        Thank you

        Judy

        • December 21, 2016 at 5:35 pm
        Terrified
        Participant

        Thank you

        Judy

      • December 21, 2016 at 4:13 pm
      Scooby123
      Participant

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

      scooby xx

      • December 21, 2016 at 4:13 pm
      Scooby123
      Participant

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

      scooby xx

      • December 21, 2016 at 7:10 pm
      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

        • December 21, 2016 at 7:44 pm
        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

        • December 22, 2016 at 12:02 am
        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.

        • December 22, 2016 at 12:02 am
        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.

        • December 22, 2016 at 12:02 am
        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.

        • December 21, 2016 at 7:44 pm
        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

        • December 21, 2016 at 7:44 pm
        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

      • December 21, 2016 at 7:10 pm
      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

      • December 21, 2016 at 7:10 pm
      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

      • December 21, 2016 at 7:47 pm
      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

      • December 21, 2016 at 7:47 pm
      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

      • December 21, 2016 at 7:47 pm
      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

      • December 22, 2016 at 4:50 am
      jennunicorn
      Participant

      Sending hugs and positive thoughts for your husband

      • December 22, 2016 at 4:50 am
      jennunicorn
      Participant

      Sending hugs and positive thoughts for your husband

      • December 22, 2016 at 4:50 am
      jennunicorn
      Participant

      Sending hugs and positive thoughts for your husband

      • December 22, 2016 at 3:36 pm
      marta010
      Participant

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

      Ann

      • December 22, 2016 at 3:36 pm
      marta010
      Participant

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

      Ann

      • December 22, 2016 at 3:36 pm
      marta010
      Participant

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

      Ann

      • December 22, 2016 at 7:51 pm
      _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 

      • December 22, 2016 at 7:51 pm
      _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 

      • December 22, 2016 at 7:51 pm
      _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 

      • December 23, 2016 at 8:43 pm
      keepthefaith11
      Participant
      Judy, how did things go yesterday. Thinking of you.

      Annie

      • December 23, 2016 at 8:43 pm
      keepthefaith11
      Participant
      Judy, how did things go yesterday. Thinking of you.

      Annie

      • December 23, 2016 at 8:43 pm
      keepthefaith11
      Participant
      Judy, how did things go yesterday. Thinking of you.

      Annie

        • December 23, 2016 at 11:24 pm
        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

        • December 23, 2016 at 11:24 pm
        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

        • December 23, 2016 at 11:24 pm
        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

        • December 24, 2016 at 3:32 am
        _Paul_
        Participant

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

        – Paul

        • December 24, 2016 at 3:32 am
        _Paul_
        Participant

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

        – Paul

        • December 24, 2016 at 3:32 am
        _Paul_
        Participant

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

        – Paul

        • December 26, 2016 at 5:13 pm
        snow white
        Participant

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

        • December 26, 2016 at 5:13 pm
        snow white
        Participant

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

        • December 26, 2016 at 5:13 pm
        snow white
        Participant

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

        • December 27, 2016 at 1:34 pm
        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

        • December 27, 2016 at 1:34 pm
        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

        • December 27, 2016 at 1:34 pm
        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

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