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just found out wife has brain mets, questions.

Forums General Melanoma Community just found out wife has brain mets, questions.

  • Post
    chrisS
    Participant
    It’s been a tough fight so far. Melissa was diagnosed with stage 4, tumor in chest, liver, and back, 6 months ago. It seems like yesterday we were turned down by NIH and we went in for our first IL2 in Sept along side himynameiskevin. It was both of their first weeks. It seemed to be working(20% shrinkage) after 6 admittance. We began a 2.5 month break 3 weeks ago but she had headaches this past weekend. Took her in yesterday and found out 4 mets and one big one in the front that needs to come out ASAP. My young(32) beautiful, full of life wife is so strong.

    It’s been a tough fight so far. Melissa was diagnosed with stage 4, tumor in chest, liver, and back, 6 months ago. It seems like yesterday we were turned down by NIH and we went in for our first IL2 in Sept along side himynameiskevin. It was both of their first weeks. It seemed to be working(20% shrinkage) after 6 admittance. We began a 2.5 month break 3 weeks ago but she had headaches this past weekend. Took her in yesterday and found out 4 mets and one big one in the front that needs to come out ASAP. My young(32) beautiful, full of life wife is so strong. Prob in a little bit of denial.

    Anyone gone through the surgery and know what the risks are?
    Will she change? Should I take a leave of absence from work? So many questions.

    Happy the tumors in her body have shrank. It is a blessing we went in because we are going to Maui on fri for 3 days, and had some scuba planed. Apparently the water pressure my have caused brain bleeding on the tumors. Man that would have been real bad.

    One other question, has anyone traveled in an airplane with brain mets? Is the pressure a problem?
    She is now on steroids that have helped her headache and I assume brought down the initial swelling.

    Thanks everyone. This board has always been so informative and the LOVE on here is incredible!
    Keep up the good work!

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  • Replies
      KatyWI
      Participant

      Chris,

      I am 36.  I had brain mets discovered in September which were treated with Cyberknife, but one seemed to be growing and had to come out (craniotomy) three weeks ago.  I was very lucky in that it was found to be radiation necrosis, but I can still comment about the surgery your wife is facing. 

      Please search the board for more – I sent out an SOS before my surgery, and Shady had some questions just a few weeks ago.  But briefly – the surgery was much less big of a deal than I thought.  As far as risks, a lot depends on the location in the brain where they have to access to remove the met.  Right now, three weeks after surgery, I have some slight problems remembering words; my site was located in the language center.  Some side effects are transient (and I hope my word-finding problem will be too).  There are serious risks (death and coma are particularly unattractive!), but they are rare.  (I don't mean to be flippant but sometimes that's the only way to deal.)  Get really comfortable with the neurosurgeon who's going to do the surgery – mine is a genius and I'd go back to him if I had to without question.

      For recovery time, if you can get a couple of days off to be with her for the surgery and the first couple of days afterwards, that would be good.  My husband took Tuesday (surgery day), Wednesday, and Thursday off, and went back to work on Friday.  I did not need anything much after three days (not that it stopped my mother, mind you!).

      Good luck to you and your wife,

      KatyWI

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      KatyWI
      Participant

      Chris,

      I am 36.  I had brain mets discovered in September which were treated with Cyberknife, but one seemed to be growing and had to come out (craniotomy) three weeks ago.  I was very lucky in that it was found to be radiation necrosis, but I can still comment about the surgery your wife is facing. 

      Please search the board for more – I sent out an SOS before my surgery, and Shady had some questions just a few weeks ago.  But briefly – the surgery was much less big of a deal than I thought.  As far as risks, a lot depends on the location in the brain where they have to access to remove the met.  Right now, three weeks after surgery, I have some slight problems remembering words; my site was located in the language center.  Some side effects are transient (and I hope my word-finding problem will be too).  There are serious risks (death and coma are particularly unattractive!), but they are rare.  (I don't mean to be flippant but sometimes that's the only way to deal.)  Get really comfortable with the neurosurgeon who's going to do the surgery – mine is a genius and I'd go back to him if I had to without question.

      For recovery time, if you can get a couple of days off to be with her for the surgery and the first couple of days afterwards, that would be good.  My husband took Tuesday (surgery day), Wednesday, and Thursday off, and went back to work on Friday.  I did not need anything much after three days (not that it stopped my mother, mind you!).

      Good luck to you and your wife,

      KatyWI

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      jag
      Participant

      Good God, very sorry to hear that you are going through this, that said, one of our legendary posters, NicOz has been dealing with brain mets for years and I'm quite certain that she flies in for her scans, flies back out while the surgery is being scheduled, flies in for the surgery, and then flies home.  Therefore it can be done-click on her profile.  I don't think a leave of absence from work would be unwarranted, but don't schedule 3-4 months off, see how she is after a week, and if she is fine then, well then keep going to work and supporting her as much as you can handle.  Brain mets are not a death sentence, and you may need more time off in the future for treatments, as well as a steady income to keep paying the bills.  Don't be surprised if your wife's personality changes on the steroids.  Everybody responds differently.

      God Bless

      John 

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      jag
      Participant

      Good God, very sorry to hear that you are going through this, that said, one of our legendary posters, NicOz has been dealing with brain mets for years and I'm quite certain that she flies in for her scans, flies back out while the surgery is being scheduled, flies in for the surgery, and then flies home.  Therefore it can be done-click on her profile.  I don't think a leave of absence from work would be unwarranted, but don't schedule 3-4 months off, see how she is after a week, and if she is fine then, well then keep going to work and supporting her as much as you can handle.  Brain mets are not a death sentence, and you may need more time off in the future for treatments, as well as a steady income to keep paying the bills.  Don't be surprised if your wife's personality changes on the steroids.  Everybody responds differently.

      God Bless

      John 

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      Carole K
      Participant

      Chris ,

      I am so sorry for all you and your wife are going through.  I had one brain met, I went in for Gamma Knife and ended up with a craniotomy because my tumor burst and bled.  The surgery was quite easy as were my side effects from meds.  The biggest complaint I had was from the steroids..  I couldn't sleep and yet was exhausted. I was wired until my doctor took me off the meds. My tumor was behind my left occipital lobe so I had a bit of difficulty reading and actually couldn't really read for about a year.  I now read silently very well but don't ask me to read aloud.  I sound like someone learning how to reaad.

      I made the decision to do alternative therapy after the craniotomay  ( not for everyone).  I just celebrated 10 years NED.  Where is your wife being treated?  Please know I am here to help in any way possible.

      Hang tough.. 

      Love and Light

      Carole

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      Carole K
      Participant

      Chris ,

      I am so sorry for all you and your wife are going through.  I had one brain met, I went in for Gamma Knife and ended up with a craniotomy because my tumor burst and bled.  The surgery was quite easy as were my side effects from meds.  The biggest complaint I had was from the steroids..  I couldn't sleep and yet was exhausted. I was wired until my doctor took me off the meds. My tumor was behind my left occipital lobe so I had a bit of difficulty reading and actually couldn't really read for about a year.  I now read silently very well but don't ask me to read aloud.  I sound like someone learning how to reaad.

      I made the decision to do alternative therapy after the craniotomay  ( not for everyone).  I just celebrated 10 years NED.  Where is your wife being treated?  Please know I am here to help in any way possible.

      Hang tough.. 

      Love and Light

      Carole

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      Carole K
      Participant

      Chris,

      I forgot to tell you…  I think it will depend on your wife as to wheather or not you take a leave of absence from work.  Everyone is different. I did really well.  I was alone most of  the time because my daughters were in college and working… My one daughter set her alarm every night because I took the wrong meds the first night. 

      If you have family and friends you can have check in on your wife that may be sufficient. 

      Hang in there and don't forget to take care of Chris as well.  This is a very tough time for you as well.

      Love and Light

      Carole

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      Carole K
      Participant

      Chris,

      I forgot to tell you…  I think it will depend on your wife as to wheather or not you take a leave of absence from work.  Everyone is different. I did really well.  I was alone most of  the time because my daughters were in college and working… My one daughter set her alarm every night because I took the wrong meds the first night. 

      If you have family and friends you can have check in on your wife that may be sufficient. 

      Hang in there and don't forget to take care of Chris as well.  This is a very tough time for you as well.

      Love and Light

      Carole

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      Carmon in NM
      Participant

      Hi Chris – I had an emergency craniotomy last June because an undiagnosed met started bleeding into my brain. The recovery from it was much less difficult than some of my other surgeries and I think the anticipation of brain surgery must be the hardest part.

      In my case I did have brain trauma from the bleed so I needed someone with me for about a week because my memory, balance, vision and hearing were affected. Still, it was just someone to make sure I didn't fall or have to cook for myself and so on. I recovered steadily as the swelling went down and was back driving in my small rural community in about a month.

      I had gamma knife to clean up that met and also treat a second smaller one and over about a three month period after gamma knife, I recovered pretty much everything but short term memory and peripheral vision due to where the bleed was located.

      I think your best bet would be to talk with your wife's neurologist to see what to expect due to where the met is located. We'll be thinking of you both and please let us know how everything goes…Carmon in NM

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      Carmon in NM
      Participant

      Hi Chris – I had an emergency craniotomy last June because an undiagnosed met started bleeding into my brain. The recovery from it was much less difficult than some of my other surgeries and I think the anticipation of brain surgery must be the hardest part.

      In my case I did have brain trauma from the bleed so I needed someone with me for about a week because my memory, balance, vision and hearing were affected. Still, it was just someone to make sure I didn't fall or have to cook for myself and so on. I recovered steadily as the swelling went down and was back driving in my small rural community in about a month.

      I had gamma knife to clean up that met and also treat a second smaller one and over about a three month period after gamma knife, I recovered pretty much everything but short term memory and peripheral vision due to where the bleed was located.

      I think your best bet would be to talk with your wife's neurologist to see what to expect due to where the met is located. We'll be thinking of you both and please let us know how everything goes…Carmon in NM

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      chrisS
      Participant
      This is all great information and it helps a lot to her you speak out. We had a great dinner last night and got out all our fears. Tough but meaningful.

      We leave for Maui in the morning to meet our friends there and are very excited finally to have some “us” time. No scuba but we rented a boat instead to go look at the whales with!

      Ready to kick some but when we return with a clear head. Each day since the news has been getting better and more hopeful. Some r and r will do us nice

      Thanks for your quick and useful responses.

      Enjoy your weekends, I know we will!

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      chrisS
      Participant
      This is all great information and it helps a lot to her you speak out. We had a great dinner last night and got out all our fears. Tough but meaningful.

      We leave for Maui in the morning to meet our friends there and are very excited finally to have some “us” time. No scuba but we rented a boat instead to go look at the whales with!

      Ready to kick some but when we return with a clear head. Each day since the news has been getting better and more hopeful. Some r and r will do us nice

      Thanks for your quick and useful responses.

      Enjoy your weekends, I know we will!

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      NicOz
      Participant

      Hi Chris, just wanted to mention a couple of things from my experience. I do fly, however on a little regional airplane so it is likely that a larger plane may cause concern with your wife's doctors re: cabin pressure. I'm single and have no problem caring for myself after I get home (usually 2-3 days after surgery. If I lived in the city where I have it done I'd be home the day after but my neuro likes me to stay nearby for a day or two after to be on the safe side as I live 600km away) Steroids are a necessary evil, but when I've managed not to require them before surgery, or only for a day or 2 of smaller doses- 4mg/d for example, I'm off them very quickly after surgery- usually a few days. It's the weaning that can make things drag on for ages. If she is on and off them quickly then the side effects don't have too much time to kick in. Plus my docs know how much I loathe them so we try to use them only when necessary and get off them as quickly as is safe.

      Also as you know, side effects are dependent on where the location is. I had one near the speech centre and had aphasia for a few weeks caused by swelling (which was rectified by increasing my steroid dose). That was back in June last year. I do have concentration issues- a book has to grab me from the first paragraph or I just put it to the side. 

      So far I've had tumours removed surgically from every lobe in my cerebrum and have no obvious lasting effects. I don't require everyday medication other than something prophylactically to keep my stomach prepared for if I need to commence steroids again.

      Really I find the surgery to be an irritation as it usually messes up some plans along the way and takes me away from my 5 year old daughter, but I find the recovery a breeze.

      Hope you two have a great time away. It sounds just the ticket!

      NicOz

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        glewis923
        Participant

        Dear Anon:

        I made it thru 2 weeks of micro-wavable brain nukes!   Signed up for IPI in Oralando and hope to start mid/end of next week.  Hope all is well "over the rainbow"…..Zen student aka "grasshopper" aka Elvis aka "Shady" aka Anon. KA : your friend and mine,

        Grady.

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        glewis923
        Participant

        Dear Anon:

        I made it thru 2 weeks of micro-wavable brain nukes!   Signed up for IPI in Oralando and hope to start mid/end of next week.  Hope all is well "over the rainbow"…..Zen student aka "grasshopper" aka Elvis aka "Shady" aka Anon. KA : your friend and mine,

        Grady.

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      NicOz
      Participant

      Hi Chris, just wanted to mention a couple of things from my experience. I do fly, however on a little regional airplane so it is likely that a larger plane may cause concern with your wife's doctors re: cabin pressure. I'm single and have no problem caring for myself after I get home (usually 2-3 days after surgery. If I lived in the city where I have it done I'd be home the day after but my neuro likes me to stay nearby for a day or two after to be on the safe side as I live 600km away) Steroids are a necessary evil, but when I've managed not to require them before surgery, or only for a day or 2 of smaller doses- 4mg/d for example, I'm off them very quickly after surgery- usually a few days. It's the weaning that can make things drag on for ages. If she is on and off them quickly then the side effects don't have too much time to kick in. Plus my docs know how much I loathe them so we try to use them only when necessary and get off them as quickly as is safe.

      Also as you know, side effects are dependent on where the location is. I had one near the speech centre and had aphasia for a few weeks caused by swelling (which was rectified by increasing my steroid dose). That was back in June last year. I do have concentration issues- a book has to grab me from the first paragraph or I just put it to the side. 

      So far I've had tumours removed surgically from every lobe in my cerebrum and have no obvious lasting effects. I don't require everyday medication other than something prophylactically to keep my stomach prepared for if I need to commence steroids again.

      Really I find the surgery to be an irritation as it usually messes up some plans along the way and takes me away from my 5 year old daughter, but I find the recovery a breeze.

      Hope you two have a great time away. It sounds just the ticket!

      NicOz

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