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Any advice on Brain Radiation

Forums General Melanoma Community Any advice on Brain Radiation

  • Post
    bill58
    Participant

    This darn disease.  Just had a CT scan yesterday in preparation for starting the BRAF trial on Monday.

    They found mets in my brain.  Trying to talk to the radiation oncologist to determine next course of action.  Oncologist says I need to get the treatment within the next 7 days.  My vision has gotten noticeably worse over the past week so I thought either I need new glasses or something was up with this pesky disease.

    Does anyone have any advice on brain radiation?  Hopefully it is only a few spots that they can treat with pinpoint radiation.

    This darn disease.  Just had a CT scan yesterday in preparation for starting the BRAF trial on Monday.

    They found mets in my brain.  Trying to talk to the radiation oncologist to determine next course of action.  Oncologist says I need to get the treatment within the next 7 days.  My vision has gotten noticeably worse over the past week so I thought either I need new glasses or something was up with this pesky disease.

    Does anyone have any advice on brain radiation?  Hopefully it is only a few spots that they can treat with pinpoint radiation.

    I know others on this board have received radiatoin treatment and wondered about the recovery time.  Will I have to be in the hospital for a while?  how long before I can go back to work?

    I guess my plan A – BRAF treatment has fallen by the wayside. I wont qualify until the brain mets have been treated for 3 months, and by then the study will be closed, since I was one of the last participants to get enrolled in the study last month.

    Here is to hoping for some good news one of these days.

    A little down right now.  Could use any words of encouragement.

    Bill

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  • Replies
      KatyWI
      Participant

      Bill,

      I had four brain mets turn up recently.  One spot was a few centimeters (that was the symptomatic one) and three were small, just a few mm in size.  I had Cyberknife on all four two weeks ago.  It was EASY and recovery time was just about zero.  So easy in fact that I hope it worked.

      I missed one and a half days of work – half a day when they were taking scans to plan the procedure, and one day for the procedure itself.  The procedure took about two hours, but I was told to take it easy/rest the remainder of the day.

      I'm sorry you got this bad news.  I hope that stereotactic radiation will work for you.

      KatyWI

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      KatyWI
      Participant

      Bill,

      I had four brain mets turn up recently.  One spot was a few centimeters (that was the symptomatic one) and three were small, just a few mm in size.  I had Cyberknife on all four two weeks ago.  It was EASY and recovery time was just about zero.  So easy in fact that I hope it worked.

      I missed one and a half days of work – half a day when they were taking scans to plan the procedure, and one day for the procedure itself.  The procedure took about two hours, but I was told to take it easy/rest the remainder of the day.

      I'm sorry you got this bad news.  I hope that stereotactic radiation will work for you.

      KatyWI

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      ShariC
      Participant

      Hi Bill – I feel your discouragement.  I was diagnosed in July (this year – three months ago) – had surgery and then had radiation and am about to start bio-chemotherapy.  Just before I started and 3 months after initial diagnosis I had my FIRST followup PET scan.  Yep…its back.  "Really…I couldn't have just one clear scan?"  It kinda sucked.  You expect or at least hope for some time when this thing ISN'T in your body…and then can't catch a break. 

      I'm hoping for the best for you as you move forward. 

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      ShariC
      Participant

      Hi Bill – I feel your discouragement.  I was diagnosed in July (this year – three months ago) – had surgery and then had radiation and am about to start bio-chemotherapy.  Just before I started and 3 months after initial diagnosis I had my FIRST followup PET scan.  Yep…its back.  "Really…I couldn't have just one clear scan?"  It kinda sucked.  You expect or at least hope for some time when this thing ISN'T in your body…and then can't catch a break. 

      I'm hoping for the best for you as you move forward. 

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      ShariC
      Participant

      Hi Bill – I feel your discouragement.  I was diagnosed in July (this year – three months ago) – had surgery and then had radiation and am about to start bio-chemotherapy.  Just before I started and 3 months after initial diagnosis I had my FIRST followup PET scan.  Yep…its back.  "Really…I couldn't have just one clear scan?"  It kinda sucked.  You expect or at least hope for some time when this thing ISN'T in your body…and then can't catch a break. 

      I'm hoping for the best for you as you move forward. 

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      ShariC
      Participant

      Hi Bill – I feel your discouragement.  I was diagnosed in July (this year – three months ago) – had surgery and then had radiation and am about to start bio-chemotherapy.  Just before I started and 3 months after initial diagnosis I had my FIRST followup PET scan.  Yep…its back.  "Really…I couldn't have just one clear scan?"  It kinda sucked.  You expect or at least hope for some time when this thing ISN'T in your body…and then can't catch a break. 

      I'm hoping for the best for you as you move forward. 

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      lovingwifedeb
      Participant
      Bill,
      I’m so very sorry to hear this latest news. I don’t have any advice for you. I just wanted to reach out and let you know you are not alone in this and I feel your anger and fear.

      Take care of your body while you are searching for your answers.

      Deb
      lovingwife to Bob, stage 3c

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      lovingwifedeb
      Participant
      Bill,
      I’m so very sorry to hear this latest news. I don’t have any advice for you. I just wanted to reach out and let you know you are not alone in this and I feel your anger and fear.

      Take care of your body while you are searching for your answers.

      Deb
      lovingwife to Bob, stage 3c

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      himynameiskevin
      Participant

      Hi Bill, I had a brain met. They did sterotactic radiation and I was good in no time. No recovery time at all, just a slight headache for an hour or so and that's about it. From people I had talked to, brain mets can be easily treated, especially the earlier they're caught, which seems to be your case. So that's something to be postive about. Good luck and keep us updated. – Kevin

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      himynameiskevin
      Participant

      Hi Bill, I had a brain met. They did sterotactic radiation and I was good in no time. No recovery time at all, just a slight headache for an hour or so and that's about it. From people I had talked to, brain mets can be easily treated, especially the earlier they're caught, which seems to be your case. So that's something to be postive about. Good luck and keep us updated. – Kevin

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      Carmon in NM
      Participant

      Hi Bill – I had a large brain met start bleeding into my brain last June that required an emergency craniotomy followed by Gamma Knife Surgery a month later. I think I had more brain trauma than some due to the bleed so I don't know if my experience will compare.

      The primary lesion was 2×3 centimeters and they found another less than 4 mm lesion prior to Gamma Knife. The metal halo part of Gamma Knife is no fun but completely manageable. In my case, I couldn't have worked due to brain trauma from the bleed affecting my vision, comprehension, hearing and memory pretty badly.

      Slowly things have come back and my three month brain MRI following Gamma Knife showed the primary had shrunk by 50% and the little one has remained stable with my onc feeling it is now just scar tissue still reacting to the contrast. I'm sure that if I had only required focused radiation treatment, the recovery would have been fairly easy except for those darn screws in the skull!

      Prayers for you for an easy and successful process! Carmon

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      Carmon in NM
      Participant

      Hi Bill – I had a large brain met start bleeding into my brain last June that required an emergency craniotomy followed by Gamma Knife Surgery a month later. I think I had more brain trauma than some due to the bleed so I don't know if my experience will compare.

      The primary lesion was 2×3 centimeters and they found another less than 4 mm lesion prior to Gamma Knife. The metal halo part of Gamma Knife is no fun but completely manageable. In my case, I couldn't have worked due to brain trauma from the bleed affecting my vision, comprehension, hearing and memory pretty badly.

      Slowly things have come back and my three month brain MRI following Gamma Knife showed the primary had shrunk by 50% and the little one has remained stable with my onc feeling it is now just scar tissue still reacting to the contrast. I'm sure that if I had only required focused radiation treatment, the recovery would have been fairly easy except for those darn screws in the skull!

      Prayers for you for an easy and successful process! Carmon

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      Amy Busby
      Participant

      I have leptomeningal mets, so they are spread out all over the lining of the brain.  I did 10 days of whole brain radiation.  The first day I had some nausea & vomitting and a bit of a headache.  The next day I did pre-meds of n. and pain and after that it was smooth sailing.  My only side effect was severe fatigue.  I had no choice but to nap at least once, sometimes twice, a day.

      I don't think I've had any detrimental effects, I was already a bit "chemo brained" lol.  All in all it's by far one of the easiest, pain free treatments I've ever done.  So quick and easy I teased the rad. techs that they were really punking me and nothing was happening!

      I think it helped.  MRI showed some improvement and my symptoms from the disease – headaches / wooshing in my head – have lessened.

      Good luck with it!  It's not as scary as it seems.

      Love,

      Amy

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      Amy Busby
      Participant

      I have leptomeningal mets, so they are spread out all over the lining of the brain.  I did 10 days of whole brain radiation.  The first day I had some nausea & vomitting and a bit of a headache.  The next day I did pre-meds of n. and pain and after that it was smooth sailing.  My only side effect was severe fatigue.  I had no choice but to nap at least once, sometimes twice, a day.

      I don't think I've had any detrimental effects, I was already a bit "chemo brained" lol.  All in all it's by far one of the easiest, pain free treatments I've ever done.  So quick and easy I teased the rad. techs that they were really punking me and nothing was happening!

      I think it helped.  MRI showed some improvement and my symptoms from the disease – headaches / wooshing in my head – have lessened.

      Good luck with it!  It's not as scary as it seems.

      Love,

      Amy

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      bill58
      Participant

      Thanks to everyone for the info.

      Had another Brain Mri yesterday.  Boy I hate those things.  Need to get an anti anxiety pill before the next one.

      Off to see the neurosurgeon and Cyberknife specialist to find out if I quality for that procedure or if I need Whole brain radiation treatment.

      Will try to post the results later today.

      Just for once I would like to get some encouraging news.

      Bill

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      bill58
      Participant

      Thanks to everyone for the info.

      Had another Brain Mri yesterday.  Boy I hate those things.  Need to get an anti anxiety pill before the next one.

      Off to see the neurosurgeon and Cyberknife specialist to find out if I quality for that procedure or if I need Whole brain radiation treatment.

      Will try to post the results later today.

      Just for once I would like to get some encouraging news.

      Bill

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        lhaley
        Participant

        Sending good wishes your way.  I can handle the scans, it's the minute that their done and the radiologist and techs know what is going on and I don't!

        Linda

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        lhaley
        Participant

        Sending good wishes your way.  I can handle the scans, it's the minute that their done and the radiologist and techs know what is going on and I don't!

        Linda

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      Sharyn
      Participant

      Hi Bill,

      What a bummer!! I was in the middle of a clinical trial when a routine brain MRI picked up brain mets, and I was disqualified from the trial. I've had both Whole brain Radiation and Novalis SRS (similar to cyberknife).

      WBR is by far the easiest treatment to undergo, but you'll be wickedly tired, and you'll lose all your hair. You'll have to take decadron (dexamethasone) to prevent brain swelling, and that steroid will give you an insatiable appetite. I gained over 10 lbs in 2 weeks!!! Lost it after I finished, though.

      SRS is much more difficult. It doesn't hurt or anything like that, but if you find a brain MRI confining, you will definitely be claustrofobic in the mask that you have to wear. I had to wear mine for 4.5 hours for 4 mets, with a half hour break after the first 2 hrs. Other than the confinement, there's no pain whatsoever, and once you're done, you can resume your day, and no side effects.

      I just received a link to an article about a GSK drug that treats BRAF positive patients who have brain mets. I don't know anything else about it, but maybe you can garner enough information from the article to do some searching. It's no help to me because I'm BRAF negative, but hopefully it will benefit you somehow.

      Good luck, and please post when you get more results.

      Hugs

      Sharyn, Stage IV

      http://www.oncologystat.com/news/In_the_Pipeline_BRAF_Kinase_Inhibitor_Shrinks_Melanoma_Brain_Metastases_US.html 

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      Sharyn
      Participant

      Hi Bill,

      What a bummer!! I was in the middle of a clinical trial when a routine brain MRI picked up brain mets, and I was disqualified from the trial. I've had both Whole brain Radiation and Novalis SRS (similar to cyberknife).

      WBR is by far the easiest treatment to undergo, but you'll be wickedly tired, and you'll lose all your hair. You'll have to take decadron (dexamethasone) to prevent brain swelling, and that steroid will give you an insatiable appetite. I gained over 10 lbs in 2 weeks!!! Lost it after I finished, though.

      SRS is much more difficult. It doesn't hurt or anything like that, but if you find a brain MRI confining, you will definitely be claustrofobic in the mask that you have to wear. I had to wear mine for 4.5 hours for 4 mets, with a half hour break after the first 2 hrs. Other than the confinement, there's no pain whatsoever, and once you're done, you can resume your day, and no side effects.

      I just received a link to an article about a GSK drug that treats BRAF positive patients who have brain mets. I don't know anything else about it, but maybe you can garner enough information from the article to do some searching. It's no help to me because I'm BRAF negative, but hopefully it will benefit you somehow.

      Good luck, and please post when you get more results.

      Hugs

      Sharyn, Stage IV

      http://www.oncologystat.com/news/In_the_Pipeline_BRAF_Kinase_Inhibitor_Shrinks_Melanoma_Brain_Metastases_US.html 

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      bill58
      Participant

      Thanks for the info.  I applogize for any misspellings or wrong words since my vision is still not 100% , but getting better.

      I posted a long description of my experience yesterday with the brain MRI and my meeting with the neurosurgeon and radiologst today on Jill N erics posting about brain mets.

      Bottom line.

      They found 18 mets in my brain and will go the agressive route of using cyber knife. Because of the time they expect to treat the brain, they have to split it into 2 sessions, 1 for each side of the brain.

      I am scheduled for the first treatment on Thursday 11/4.  They will do an MRI, the doctors will meet to plan the angles and stuff for the treatment and expect to take 200 minutes or more in the cyberknife machene, possibly 20 minutes per met, depending on the size.  That is for 1/2 of the brain.

      if the other side only has 8 mets, the next session could be 20-30 minutes shorter.

      Should be an interesting 2 days of tretment, starting at 5:30 am and ending at noon or 1pm.  I am such a special case the they will only hae one patient that day instead of the 3 patients that they normally treat in 1 day.

      I don't always like being the special case that they need to discuss with their collegues across the country, but if it can help guarantee better treatment, I will take it.

      The recovery is supposed to be easy and I can return to work the next day.

      Next stop IPI probably, as well as meeting with other top melanoma specialists in chicogo to get second opioons now that my plan A of BRAF has fallen by the wayside.  They cant keep the spot open for the 3 months it would take to treat the brain mets and perform another scan to show regression or definite lack of progression.

      Bill

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      bill58
      Participant

      Thanks for the info.  I applogize for any misspellings or wrong words since my vision is still not 100% , but getting better.

      I posted a long description of my experience yesterday with the brain MRI and my meeting with the neurosurgeon and radiologst today on Jill N erics posting about brain mets.

      Bottom line.

      They found 18 mets in my brain and will go the agressive route of using cyber knife. Because of the time they expect to treat the brain, they have to split it into 2 sessions, 1 for each side of the brain.

      I am scheduled for the first treatment on Thursday 11/4.  They will do an MRI, the doctors will meet to plan the angles and stuff for the treatment and expect to take 200 minutes or more in the cyberknife machene, possibly 20 minutes per met, depending on the size.  That is for 1/2 of the brain.

      if the other side only has 8 mets, the next session could be 20-30 minutes shorter.

      Should be an interesting 2 days of tretment, starting at 5:30 am and ending at noon or 1pm.  I am such a special case the they will only hae one patient that day instead of the 3 patients that they normally treat in 1 day.

      I don't always like being the special case that they need to discuss with their collegues across the country, but if it can help guarantee better treatment, I will take it.

      The recovery is supposed to be easy and I can return to work the next day.

      Next stop IPI probably, as well as meeting with other top melanoma specialists in chicogo to get second opioons now that my plan A of BRAF has fallen by the wayside.  They cant keep the spot open for the 3 months it would take to treat the brain mets and perform another scan to show regression or definite lack of progression.

      Bill

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