I couldn't decide how to start this thread...

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Gabe N Abby Mom
Gabe N Abby Mom Member Posts: 2,413
So I'm just gonna be blunt.

Brain MRI at 8 this morning.
Call from my onc this afternoon.
There are 4 areas that are brain mets. They are all small, 5mm or less.
I'll be starting whole brain rads ASAP. The appointment with the Rads Onc is Wed am.
Onc wants me to start decadron today, he thinks it will reduce any swelling which is likely causing my headaches.

I would really like to know what to expect for the whole brain rads from those of you who have 'been there, done that'.

Guess I should have reserved the pink bus for this morning...

Hugs,

Linda
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Comments

  • jendrey
    jendrey Member Posts: 377
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    ...
    I haven't had this and cannot comment on it. My thoughts are with you...hmm, maybe someone on the brain cancer board could tell you a bit more about it?

    We are here for you, anytime day or night.

    (((Hugs)))
  • aisling8
    aisling8 Member Posts: 1,627 Member
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    The only thing I know
    about any of this is 25 year old information. My son was 13 and had a brain tumor and had drop-to-the-floor-in-pain headaches. He had an MRI on a Saturday and the 4th of July was on a Monday, neurosurgeon appointment on Tuesday, surgery on Thursday. They put him on Decadron after the MRI and he had instant relief from headaches and the accompanying vomiting.

    I haven't the words, Linda, to convey my sorrow about your news.

    xoxo
    Victoria
  • MAJW
    MAJW Member Posts: 2,510 Member
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    jendrey said:

    ...
    I haven't had this and cannot comment on it. My thoughts are with you...hmm, maybe someone on the brain cancer board could tell you a bit more about it?

    We are here for you, anytime day or night.

    (((Hugs)))

    Been there done that...
    Oh Linda! I'm at a loss for words..I HATE this disease!
    .remember in Feb. My scans showed 3 small spots on my brain..I immediately went for 10 rads treatment...my RO and MO are 99.9% sure the rads took care of it...I was totally asymptomatic..no headaches, vision problems, etc...I, too was put on a high dose Decadron...to prevent seizures...plus I was already on Gabapentin..which is actually an anti seizure medication ( I take it for neuropathy) ..I had to be weaned off the Decadron when the rads were over...

    I'll share my experience with the brain rads...first I had to undergo a simulation...please don't let this freak you out...during this they made a mold of my head, face and neck...it is some sort of plastic..it is warm at first as they mold It exactly to your face, with no wiggle room...once they are satisfied it was correct, they ran me through the simulation machine and then covered it with cool clothes to set the mold...all this took about 30 minutes...I won't lie, I was ready for it to be over... ...this mask had 6 plastic "bolts".... it is bolted to the rads machine..mine was lime green...
    It is mesh so there is no problem breathing but your head can't move...I took a Zanax for the first one...I knew about the mask beforehand because I took my dear friend for her brain rads....as with other rads, it takes longer to set you up...actual treatment for me was 3-5 minutes....from the first rads, I wasn't allowed to drive for 3 months...again because of possible seizures now due to the dying cancer cells....technically, here in NC they are supposed to notify the DMV of this but my RO said if I promised he wouldn't...I did and he didn't...I was warned about fatigue...it hit me about 5 days after my last rads...for me it was overwhelming for about 3-4 days...also I had my port installed the last day of rads...started the Avastin+Carboplatin
    two weeks later...It took me a while to regain my strength....also during the set up and treatment I had to let my mind "go somewhere else"...I choose prayer....and it was over!

    Again, Linda I am so sorry this has been added to your plate..seems as if we get over one hurdle and another crops up....please if I can help in any way, let me know...I'd be happy to give you my phone #....you've gone to the top of my prayer list...

    Big hugs, Nancy
  • VickiSam
    VickiSam Member Posts: 9,079 Member
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    aisling8 said:

    The only thing I know
    about any of this is 25 year old information. My son was 13 and had a brain tumor and had drop-to-the-floor-in-pain headaches. He had an MRI on a Saturday and the 4th of July was on a Monday, neurosurgeon appointment on Tuesday, surgery on Thursday. They put him on Decadron after the MRI and he had instant relief from headaches and the accompanying vomiting.

    I haven't the words, Linda, to convey my sorrow about your news.

    xoxo
    Victoria

    I HATE HATE HATE .. that you have to deal with
    more symptoms/issues ... Miss Linda! I am deeply sorry.

    My heart aches for you, and your family.

    Prayers, prayers and more prayers for you, dear one.


    Vicki Sam
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
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    Oh Linda, I am so, so sorry.
    Oh Linda, I am so, so sorry. I hate this disease so much. You are such a valiant fighter: so graceful and honest and an inspiration to us all. Keep fighting! And please, please let me know if I can do anything at all. My prayers are with you and your family.
  • Bella Luna
    Bella Luna Member Posts: 1,578 Member
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    Sorry to hear
    I am so sorry to hear the news, Linda. It's not easy news to hear, but your doctors sounds like they know exactly how to treat your situation and will guide you through the process. I am glad to see others have responded to your blog and are giving you information on what to expect with brain rads. God grant you peace of mind and heart as you go forward with the process.

    Much love, hugs, and prayers going out your way.
    Ines
  • camul
    camul Member Posts: 2,537
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    Wow
    Linda, the beast is not making this at all easy for you. I am so sorry that you are now going through more. I will keep praying that the rads will eradicate them and that the Navelbine will hold the rest steady or get rid of it all.

    Will be with you on the bus on Wednesday.

    Hugs and prayers Linda,
    Carol
  • New Flower
    New Flower Member Posts: 4,294
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    camul said:

    Wow
    Linda, the beast is not making this at all easy for you. I am so sorry that you are now going through more. I will keep praying that the rads will eradicate them and that the Navelbine will hold the rest steady or get rid of it all.

    Will be with you on the bus on Wednesday.

    Hugs and prayers Linda,
    Carol

    I will be on the bus
    Linda,
    I am very sorry. Sending you and your family a big hug
    New Flower
  • missrenee
    missrenee Member Posts: 2,136 Member
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    I will be on the bus
    Linda,
    I am very sorry. Sending you and your family a big hug
    New Flower

    Oh, Linda, I hated reading this
    but I am sending all the positive energy I can to you, dear warrior. May God cradle you in His protective embrace as you go through this treatment and feel no fear or dispair, but only hope and faith, knowing He will get you through this as He has gotten you through all your past treatments.

    Love and hugs, Renee
  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413
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    Thank you all!! I've had a
    Thank you all!! I've had a little time to process this and talk with my hubby and a close friend....

    All this time I thought I had a little brain...come to find out I really have a big fat swollen head. LOL!!

    You guys are the best! (So I'm expecting you to have some really good jokes about my brain and my head!)

    Hugs,

    Linda
  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413
    Options
    MAJW said:

    Been there done that...
    Oh Linda! I'm at a loss for words..I HATE this disease!
    .remember in Feb. My scans showed 3 small spots on my brain..I immediately went for 10 rads treatment...my RO and MO are 99.9% sure the rads took care of it...I was totally asymptomatic..no headaches, vision problems, etc...I, too was put on a high dose Decadron...to prevent seizures...plus I was already on Gabapentin..which is actually an anti seizure medication ( I take it for neuropathy) ..I had to be weaned off the Decadron when the rads were over...

    I'll share my experience with the brain rads...first I had to undergo a simulation...please don't let this freak you out...during this they made a mold of my head, face and neck...it is some sort of plastic..it is warm at first as they mold It exactly to your face, with no wiggle room...once they are satisfied it was correct, they ran me through the simulation machine and then covered it with cool clothes to set the mold...all this took about 30 minutes...I won't lie, I was ready for it to be over... ...this mask had 6 plastic "bolts".... it is bolted to the rads machine..mine was lime green...
    It is mesh so there is no problem breathing but your head can't move...I took a Zanax for the first one...I knew about the mask beforehand because I took my dear friend for her brain rads....as with other rads, it takes longer to set you up...actual treatment for me was 3-5 minutes....from the first rads, I wasn't allowed to drive for 3 months...again because of possible seizures now due to the dying cancer cells....technically, here in NC they are supposed to notify the DMV of this but my RO said if I promised he wouldn't...I did and he didn't...I was warned about fatigue...it hit me about 5 days after my last rads...for me it was overwhelming for about 3-4 days...also I had my port installed the last day of rads...started the Avastin+Carboplatin
    two weeks later...It took me a while to regain my strength....also during the set up and treatment I had to let my mind "go somewhere else"...I choose prayer....and it was over!

    Again, Linda I am so sorry this has been added to your plate..seems as if we get over one hurdle and another crops up....please if I can help in any way, let me know...I'd be happy to give you my phone #....you've gone to the top of my prayer list...

    Big hugs, Nancy

    Nancy, thanks for sharing
    Nancy, thanks for sharing your experience. I knew there would be some kind of mask to keep my head still, but having some details helps ease my mind.

    Hugs,

    Linda
  • fauxma
    fauxma Member Posts: 3,577 Member
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    Thank you all!! I've had a
    Thank you all!! I've had a little time to process this and talk with my hubby and a close friend....

    All this time I thought I had a little brain...come to find out I really have a big fat swollen head. LOL!!

    You guys are the best! (So I'm expecting you to have some really good jokes about my brain and my head!)

    Hugs,

    Linda

    Linda,
    So sorry to hear this

    Linda,
    So sorry to hear this news. I will keep you in my prayers. Glad to see you still have your sense of humor. If I think of a good brain/head joke I will share it with you.
    Stef
  • AngieD
    AngieD Member Posts: 493
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    fauxma said:

    Linda,
    So sorry to hear this

    Linda,
    So sorry to hear this news. I will keep you in my prayers. Glad to see you still have your sense of humor. If I think of a good brain/head joke I will share it with you.
    Stef

    Dislike! Dislike!
    Dang it, Linda, I'm so sorry to hear this. You and your family are in my thoughts and prayers.
    At least the swelling hasn't squeezed out your sense of humor!

    Angie
  • RE
    RE Member Posts: 4,591 Member
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    Hugs~Hugs~Hugs!!!
    I commented on the bc fb page but I just want you to know I am praying your treatment does the job and sends the nasty beast packing!

    Hugs and prayers,

    RE
  • aysemari
    aysemari Member Posts: 1,596 Member
    Options

    Thank you all!! I've had a
    Thank you all!! I've had a little time to process this and talk with my hubby and a close friend....

    All this time I thought I had a little brain...come to find out I really have a big fat swollen head. LOL!!

    You guys are the best! (So I'm expecting you to have some really good jokes about my brain and my head!)

    Hugs,

    Linda

    Linda..... I'd love to crack a joke about your fat head
    BUT I can't get past your brave heart. I am here thinking
    of you and wishing you really,really,really well. Keep up
    that ferocious attitude of yours and know your pink army
    is behind you.

    Hugs,
    Ayse
  • ksf56
    ksf56 Member Posts: 202
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    Sorry for what you're going through!
    Linda, I feel so bad for what you're going through! I'll be sending loads of prayers for you! Always know that there are so many people out here for you and we will help you carry this burden to get you better. I hope the Decadron will help with your headaches very soon and I'm glad things are moving forward quickly for you to lick this stuff.

    Hugs!
    Karen
  • salls41
    salls41 Member Posts: 340
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    :(
    So sorry you have to deal with this. Prayers and hugs!
    Sandy
  • jamiegww
    jamiegww Member Posts: 384
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    Linda
    Get ready for a BIG GROUP HUG from all of us. We don't like the news, but we know you will be okay. We're with you every step of the way!

    Jamie
  • GreeneyedGirl
    GreeneyedGirl Member Posts: 1,077
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    jamiegww said:

    Linda
    Get ready for a BIG GROUP HUG from all of us. We don't like the news, but we know you will be okay. We're with you every step of the way!

    Jamie

    Praying you through~
    Linda I am sorry for this challenge ahead. I am thankful for Nancy's ability to share her experience in such true form, just telling it like it is. I am glad it has eased your thoughts a bit. I too would ask for something to ease the "unknown" first time in for the simulation and mask set up.
    Please know we are thinking of you as you "head into" (there's a joke) this battle!!
    ~Love, Hugs & Prayers.
    ~Melanie
  • mollyz
    mollyz Member Posts: 756 Member
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    Praying you through~
    Linda I am sorry for this challenge ahead. I am thankful for Nancy's ability to share her experience in such true form, just telling it like it is. I am glad it has eased your thoughts a bit. I too would ask for something to ease the "unknown" first time in for the simulation and mask set up.
    Please know we are thinking of you as you "head into" (there's a joke) this battle!!
    ~Love, Hugs & Prayers.
    ~Melanie

    Praying!!!!
    Girl your a fighter,you made it through radiation twice a day and your going to handle this too!!! we're all going to be on this bus ride with you. sending a big tight hug to you and your family ~~MollyZ~~