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Help! Brain Mets…

Forums General Melanoma Community Help! Brain Mets…

  • Post
    Jan in OC
    Participant

    During the scans to qualify for the E-7080 trial, the Dr discovered several brain mets. Husband has been on no treatment since failing BRAF on 12/20/10 in preparation for another trial.  Cancer has been growing like crazy!  We are both a little upset by this news.

    We go in this afternoon to discuss other options with him, but I don't know anything about the treatment options once mel is in the brain.  Any help or advice would be appreciated.

    Jan, wife to Dirk, stage 4, WLE, 1 mo HD Interferon, BRAF 11months

    During the scans to qualify for the E-7080 trial, the Dr discovered several brain mets. Husband has been on no treatment since failing BRAF on 12/20/10 in preparation for another trial.  Cancer has been growing like crazy!  We are both a little upset by this news.

    We go in this afternoon to discuss other options with him, but I don't know anything about the treatment options once mel is in the brain.  Any help or advice would be appreciated.

    Jan, wife to Dirk, stage 4, WLE, 1 mo HD Interferon, BRAF 11months

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  • Replies
      KatyWI
      Participant

      Oh, crap.  I'm so sorry you are adding this to the "pile."  Deep breath!  Lots of warriors deal with brain mets.  Here's my experience with brain mets – just some anecdotes to calm you and let you see that there are options!

      September 2010 – discovered brain mets becasue of symptoms (sounds your hubby has no symptoms – that's good!).  there were four eventually discovered for me.

      October 2010 – had Cyberknife on these four mets – cyberknife is stereotactic radiation, and it really is a very "easy" treatment to tolerate.  They selectively irradiate the mets with a focused dose of radiation; normal brain tissue is not affected.  You don't even lose your hair.

      November 2010 – three mets smaller/stable; one met maybe bigger but we think it might be post-radiation change

      November 2010 – started IPI; some evidence that Ipi can be helpful in the brain as well as the body

      January 2011 – more symptoms; the one "maybe bigger" met is definitely bigger.  Maybe that one met was not sensitive to radiation; nobody can really tell me why one grew and three shrank.  In any case, brain surgery scheduled for February 1 to remove it.

      Whole-brain radiation is another option; it's usually offered only to people who have many, many mets.  I don't know much about it other than it is a tough treatment compared to cyberknife becasue normal and abnormal brain tissue get the radiation.

      See what the doctor has to say today.  I suggest you consult with a radiation oncologist and a neurosurgeon and get the opinions of both of them.

      KatyWI

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      KatyWI
      Participant

      Oh, crap.  I'm so sorry you are adding this to the "pile."  Deep breath!  Lots of warriors deal with brain mets.  Here's my experience with brain mets – just some anecdotes to calm you and let you see that there are options!

      September 2010 – discovered brain mets becasue of symptoms (sounds your hubby has no symptoms – that's good!).  there were four eventually discovered for me.

      October 2010 – had Cyberknife on these four mets – cyberknife is stereotactic radiation, and it really is a very "easy" treatment to tolerate.  They selectively irradiate the mets with a focused dose of radiation; normal brain tissue is not affected.  You don't even lose your hair.

      November 2010 – three mets smaller/stable; one met maybe bigger but we think it might be post-radiation change

      November 2010 – started IPI; some evidence that Ipi can be helpful in the brain as well as the body

      January 2011 – more symptoms; the one "maybe bigger" met is definitely bigger.  Maybe that one met was not sensitive to radiation; nobody can really tell me why one grew and three shrank.  In any case, brain surgery scheduled for February 1 to remove it.

      Whole-brain radiation is another option; it's usually offered only to people who have many, many mets.  I don't know much about it other than it is a tough treatment compared to cyberknife becasue normal and abnormal brain tissue get the radiation.

      See what the doctor has to say today.  I suggest you consult with a radiation oncologist and a neurosurgeon and get the opinions of both of them.

      KatyWI

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        Jan in OC
        Participant

        Thanks.  I feel so dumb!  So cyberknife is not actually surgery of the brain?  Is there a website I can research?  Dirk has stated that he does NOT want actual brain surgery.

        Jan

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        Jan in OC
        Participant

        Thanks.  I feel so dumb!  So cyberknife is not actually surgery of the brain?  Is there a website I can research?  Dirk has stated that he does NOT want actual brain surgery.

        Jan

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        kylez
        Participant

        I had physical surgery (craniotomy) this past September for a brain met, and then cyberknife for second brain met in November.

        My understanding from all the doctors I talked to is that if they can get to the brain met surgically, easily, that's preferable, the outcomes are better. I was scared of the surgery and there are risks (there are risks with cyberknife too). But it was the thing to do in my case.

        If it's one they can't get to easily then cyberknife is likely what they'll propose.

        Cyberknife is preferable to Gamma Knife (an older technology).

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        kylez
        Participant

        I had physical surgery (craniotomy) this past September for a brain met, and then cyberknife for second brain met in November.

        My understanding from all the doctors I talked to is that if they can get to the brain met surgically, easily, that's preferable, the outcomes are better. I was scared of the surgery and there are risks (there are risks with cyberknife too). But it was the thing to do in my case.

        If it's one they can't get to easily then cyberknife is likely what they'll propose.

        Cyberknife is preferable to Gamma Knife (an older technology).

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        kylez
        Participant

        What I said here is wrong in some circumstances:

        > Cyberknife is preferable to Gamma Knife (an older technology)

        Especially for small brain mets.

        I talked with my new radiation oncologist today. She prefers Gamma Knife to CyberKnife for treating brain mets, especially small brain mets. She said it can be more accurate, and can be set up to treat multiple brain mets better than CK can. In some cases where there are too many mets for CK and the next step would be Whole Brain Radiation, that Gamma Knife can treat some of those situations better than CK can. Other advantages include:

        – the radiation "plan" is done at basically the same time as the treatment, so there aren't brain changes like there could be in the 1-week interval with CK

        – the head is locked in place for the whole procedure, whereas CK adjusts every minute

        I think she knows, really knows what she is talking about. I haven't undergone Gamma Knife I know it's more involved (takes the whole day, the head cage, etc.) Since this facility has both CK and GammaKnife, both choices will be available depending on which is better indicated.

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        kylez
        Participant

        What I said here is wrong in some circumstances:

        > Cyberknife is preferable to Gamma Knife (an older technology)

        Especially for small brain mets.

        I talked with my new radiation oncologist today. She prefers Gamma Knife to CyberKnife for treating brain mets, especially small brain mets. She said it can be more accurate, and can be set up to treat multiple brain mets better than CK can. In some cases where there are too many mets for CK and the next step would be Whole Brain Radiation, that Gamma Knife can treat some of those situations better than CK can. Other advantages include:

        – the radiation "plan" is done at basically the same time as the treatment, so there aren't brain changes like there could be in the 1-week interval with CK

        – the head is locked in place for the whole procedure, whereas CK adjusts every minute

        I think she knows, really knows what she is talking about. I haven't undergone Gamma Knife I know it's more involved (takes the whole day, the head cage, etc.) Since this facility has both CK and GammaKnife, both choices will be available depending on which is better indicated.

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        Jan in OC
        Participant

        Thanks for the info.  My husband had an in-law who died of cancer after it progressed to the brain (don't know how it started) so he is pretty firm on the "no surgery" at this time.  But I am reading up on Cyber and Gamma.  We meet with the RadOnc next Thursday.  Had the first IPI infusion yesterday, so now feels like we are doing something, not just waiting!

        Will update next week.

        Thanks

        Jan

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        Jan in OC
        Participant

        Thanks for the info.  My husband had an in-law who died of cancer after it progressed to the brain (don't know how it started) so he is pretty firm on the "no surgery" at this time.  But I am reading up on Cyber and Gamma.  We meet with the RadOnc next Thursday.  Had the first IPI infusion yesterday, so now feels like we are doing something, not just waiting!

        Will update next week.

        Thanks

        Jan

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      kylez
      Participant

      Here's a melanoma patient talking about getting Cyberknife:

      <iframe title="YouTube video player" class="youtube-player" type="text/html" width="480" height="390" src="http://www.youtube.com/embed/BDRfgxicXcI&quot; frameborder="0" allowFullScreen></iframe>

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      kylez
      Participant

      Here's a melanoma patient talking about getting Cyberknife:

      <iframe title="YouTube video player" class="youtube-player" type="text/html" width="480" height="390" src="http://www.youtube.com/embed/BDRfgxicXcI&quot; frameborder="0" allowFullScreen></iframe>

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      Carole K
      Participant

      Dear Jan,

      First and foremost I am so sorry to hear what you are going through.  I know how difficult this can be.  I was dx with a brain met in 2000 after dx in 1995 on my back and then lung mets in Feb. 2000 to my lungs.  I AM STILL HERE.  DON'T EVER GIVE UP HOPE. 

      I went to the hospital in 2001 with the intent of having Gamma Knife.  Reality my tumor bust so I had a craniotomy instead.  I had opted for GK and had hoped to go that route.  My doctors wanted me to have a craniotomy and they got their way.  lol. 

      How many tumors does Dirk have?  what was the outcome of your doctors today?  Did they recommend Cyberknife or Gamma Knife?  Just know that is an option.  However, I know Gamma Knife will only treat up to five tumors. 

      Please know I am here for you  and will help in any way I can.

      Sending you big hugs

      Love and Light

      Carole

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      Carole K
      Participant

      Dear Jan,

      First and foremost I am so sorry to hear what you are going through.  I know how difficult this can be.  I was dx with a brain met in 2000 after dx in 1995 on my back and then lung mets in Feb. 2000 to my lungs.  I AM STILL HERE.  DON'T EVER GIVE UP HOPE. 

      I went to the hospital in 2001 with the intent of having Gamma Knife.  Reality my tumor bust so I had a craniotomy instead.  I had opted for GK and had hoped to go that route.  My doctors wanted me to have a craniotomy and they got their way.  lol. 

      How many tumors does Dirk have?  what was the outcome of your doctors today?  Did they recommend Cyberknife or Gamma Knife?  Just know that is an option.  However, I know Gamma Knife will only treat up to five tumors. 

      Please know I am here for you  and will help in any way I can.

      Sending you big hugs

      Love and Light

      Carole

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         Carole, I just read your wonderful profile after I read your reply to Jan.  What a great story of hope andof  a steady march forward!  It sounds like you are doing whatGod  has put us here to do, to bless and love life; to be in our circumstances with joy and peace in our hearts.  That is the journey.  You are an inspiration to us all.   Thank youThaT(ARe

        (Are you a macrobiotic person now?  What plan do you follow?)

        Thank you.

        Jan, I am a b-raf responder now in my 8th month.  I am so sorry that things have moved so quickly.  I pray that the brain mets can be taken care of and that you will get into the trial you were looking at. 

        With peace and light,

        Shelly in Switzerland, stage IV lung mets

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         Carole, I just read your wonderful profile after I read your reply to Jan.  What a great story of hope andof  a steady march forward!  It sounds like you are doing whatGod  has put us here to do, to bless and love life; to be in our circumstances with joy and peace in our hearts.  That is the journey.  You are an inspiration to us all.   Thank youThaT(ARe

        (Are you a macrobiotic person now?  What plan do you follow?)

        Thank you.

        Jan, I am a b-raf responder now in my 8th month.  I am so sorry that things have moved so quickly.  I pray that the brain mets can be taken care of and that you will get into the trial you were looking at. 

        With peace and light,

        Shelly in Switzerland, stage IV lung mets

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      NicOz
      Participant

      Oh Jan, sorry to hear about the brain mets. They are certainly a frightening prospect, but so much depends on the size/location/number, so try to keep breathing until you talk to the docs.

      I've had undergone both craniotomies and SRS numerous times, and can only say that I have personally found neither of them particularly difficult treatments :) Neither the actual procedures, nor the recovery has been onerous.

      Unfortunately I've been dealing with them frequently for almost 3 years, but there are many people who once they are treated, don't develop any further ones! Only suggestion I have is to make sure you find a good doc (whether neurosurgeon or RadOnc, depending on what is suggested) that you feel comfortable with as that makes ALL the difference, and don't be rushed into thinking you can't get a second opinion if their suggested treatment isn't on the same page as you both.

      (Normally I wouldn't be around to see this at 5am like it is over here, but am on my way for an MRI and a consult with my boys today, too!)

      Keep breathing. Yes, it is scary and obviously not a development that anyone would want to hear, but though it does strike fear into your heart, it is entirely possible to successfully treat them, as many people can attest to. (Look at JAG- he's been trying to beat my record for a while now, but his mets threw in the towel! :D)

      Fingers crossed for a great consult for you both, and remember with a little time to think, it actually does become possible to lose the terror and move forward.

      Thinking of you,

      Nic

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      NicOz
      Participant

      Oh Jan, sorry to hear about the brain mets. They are certainly a frightening prospect, but so much depends on the size/location/number, so try to keep breathing until you talk to the docs.

      I've had undergone both craniotomies and SRS numerous times, and can only say that I have personally found neither of them particularly difficult treatments :) Neither the actual procedures, nor the recovery has been onerous.

      Unfortunately I've been dealing with them frequently for almost 3 years, but there are many people who once they are treated, don't develop any further ones! Only suggestion I have is to make sure you find a good doc (whether neurosurgeon or RadOnc, depending on what is suggested) that you feel comfortable with as that makes ALL the difference, and don't be rushed into thinking you can't get a second opinion if their suggested treatment isn't on the same page as you both.

      (Normally I wouldn't be around to see this at 5am like it is over here, but am on my way for an MRI and a consult with my boys today, too!)

      Keep breathing. Yes, it is scary and obviously not a development that anyone would want to hear, but though it does strike fear into your heart, it is entirely possible to successfully treat them, as many people can attest to. (Look at JAG- he's been trying to beat my record for a while now, but his mets threw in the towel! :D)

      Fingers crossed for a great consult for you both, and remember with a little time to think, it actually does become possible to lose the terror and move forward.

      Thinking of you,

      Nic

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      jag
      Participant

      Jan, tell Dirk that we feel sorry he has to join the club, but you can survive with them.  I was diagnosed with my first brain met in 8/2006, and now haven't had any new ones,   Brain surgery is not as bad as many people think.  It actually hurts less than a lot of other surgeries.  I would encourage Dirk to discuss the worst possible outcomes with his surgeon, and if he then feels comfortable with it, go onwards.  The way I always saw it was, that it wasn't a fate worse than death.  

      Good luck.  

      Oh, as for clinical trials for people with brain mets, just search http://www.clinicaltrials.gov.

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      jag
      Participant

      Jan, tell Dirk that we feel sorry he has to join the club, but you can survive with them.  I was diagnosed with my first brain met in 8/2006, and now haven't had any new ones,   Brain surgery is not as bad as many people think.  It actually hurts less than a lot of other surgeries.  I would encourage Dirk to discuss the worst possible outcomes with his surgeon, and if he then feels comfortable with it, go onwards.  The way I always saw it was, that it wasn't a fate worse than death.  

      Good luck.  

      Oh, as for clinical trials for people with brain mets, just search http://www.clinicaltrials.gov.

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      Jan in OC
      Participant

      Thanks everyone for the positive responses.  I am a "type a" personality (control freak! lol) and this whole melanoma ride is so far out of my control. Sometimes it makes me crazy that I can't help more or fix this for my husband.

      We just got back from our day at UCLA (long drive on the 405 parking lot).  I get copies of all of his tests, scans etc.  We never know who we might need to consult and I like having all of his records handy. But I digress!

      The MRI showed a very small (3mm) lesion in his brain. Big worry, tiny tumor!!! But big enough to bump us from our original plan. Any brain mets exclude uu from the E-7080 trial.

      We discussed several options with Dr. Chmielowski and he recommended the radiation oncologist for either Cyberknife or Gamma (although we may have to wait till the lesion gets larger).  He also recommended IPI over other drugs that work on brain mets (Temodar).  If we choose Temodar and it fails, we will have to wait another 28 days to do IPI.   If we start IPI, we cannot go back to try E-7080.  Wait and see is not an option.

      Another concern is that while we have been waiting, (35 days without treatment, but who's counting) the number of lesions in his liver have increased. The mets are also quickly growing in size, (ex:  from 1.3 cm to 5.8 cm in the last 30 days).  

      So Dirk decided to start compassionate use IPI as soon as possible (first infusion this Friday) and schedule a consult for radiation on brain met.  We can take care of the brain issue and hope his immune system kicks in asap!

      Adding to all of our worries, we have used up our retirement and savings fighting this and are facing a financial crisis.  The bank filed foreclosure on our house the day before Christmas (after a year of refusing us a loan modification).  I need to find us a new (cheaper) place to live, worry about getting everything packed and moved, file for bankruptcy….all while making sure both husband and daughter get the medical help they need.  Juggling too many balls lately. 

      I just need something positive to happen.  It would help my hope meter stay green!

      Jan wife to Dirk,

      8/09 stage 4;  WLE;  1 mo HD interferon;1 mo lo-dose Interferon; 11 months BRAF; liver, lung, kidney, bone and now brain mets;

       

       

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      Jan in OC
      Participant

      Thanks everyone for the positive responses.  I am a "type a" personality (control freak! lol) and this whole melanoma ride is so far out of my control. Sometimes it makes me crazy that I can't help more or fix this for my husband.

      We just got back from our day at UCLA (long drive on the 405 parking lot).  I get copies of all of his tests, scans etc.  We never know who we might need to consult and I like having all of his records handy. But I digress!

      The MRI showed a very small (3mm) lesion in his brain. Big worry, tiny tumor!!! But big enough to bump us from our original plan. Any brain mets exclude uu from the E-7080 trial.

      We discussed several options with Dr. Chmielowski and he recommended the radiation oncologist for either Cyberknife or Gamma (although we may have to wait till the lesion gets larger).  He also recommended IPI over other drugs that work on brain mets (Temodar).  If we choose Temodar and it fails, we will have to wait another 28 days to do IPI.   If we start IPI, we cannot go back to try E-7080.  Wait and see is not an option.

      Another concern is that while we have been waiting, (35 days without treatment, but who's counting) the number of lesions in his liver have increased. The mets are also quickly growing in size, (ex:  from 1.3 cm to 5.8 cm in the last 30 days).  

      So Dirk decided to start compassionate use IPI as soon as possible (first infusion this Friday) and schedule a consult for radiation on brain met.  We can take care of the brain issue and hope his immune system kicks in asap!

      Adding to all of our worries, we have used up our retirement and savings fighting this and are facing a financial crisis.  The bank filed foreclosure on our house the day before Christmas (after a year of refusing us a loan modification).  I need to find us a new (cheaper) place to live, worry about getting everything packed and moved, file for bankruptcy….all while making sure both husband and daughter get the medical help they need.  Juggling too many balls lately. 

      I just need something positive to happen.  It would help my hope meter stay green!

      Jan wife to Dirk,

      8/09 stage 4;  WLE;  1 mo HD interferon;1 mo lo-dose Interferon; 11 months BRAF; liver, lung, kidney, bone and now brain mets;

       

       

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        kylez
        Participant

        Jan,

        I'm sorry you and Dirk have such a tough financial row to hoe.

        It does sound like you've got a good treatment plan. IPI can apparently act in the brain at least somewhat.

        Hang in there (which it sounds like you're doing).

        Kyle

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        kylez
        Participant

        Jan,

        I'm sorry you and Dirk have such a tough financial row to hoe.

        It does sound like you've got a good treatment plan. IPI can apparently act in the brain at least somewhat.

        Hang in there (which it sounds like you're doing).

        Kyle

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      glewis923
      Participant

      Good threads.  Guess it kinda answered most of my questions.  Now my particular locations bother me:  Anyone had them on Thalamus or Ganglion ares of brain?

      Thanks, Grady.

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      glewis923
      Participant

      Good threads.  Guess it kinda answered most of my questions.  Now my particular locations bother me:  Anyone had them on Thalamus or Ganglion ares of brain?

      Thanks, Grady.

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