Brain Mets Sisters

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  • illimae
    illimae Member Posts: 5,710
    edited May 2018

    Z, MDA uses the head frame for Gamma but this varies between cancer centers. While it looks like a torture device, it is tolerable and I can say that I did feel better about having my mouth free, I had a mask during breast rads due to treatment of the supraclavicular node, which involved my neck, didn’t like it one bit.

    Sending good vibes your way for a benign cause.

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  • leftfootforward
    leftfootforward Member Posts: 1,726
    edited May 2018

    I haven’t had to deal with a mask but was very happy not too. The frame for gamma knife is intimidating but with the premeds was no problem. I could even scratch my nose if I needed.


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  • azs40
    azs40 Member Posts: 99
    edited May 2018

    Z....I've had gamma with a frame, followed closely by mask with whole brain. Mask preferred.

    -

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  • zarovka
    zarovka Member Posts: 3,607
    edited May 2018

    Thanks ladies. Glad to be in the company of pros. Indulging a bit of denial for Mothers Day. Will get back to this.

    >Z<

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  • leftfootforward
    leftfootforward Member Posts: 1,726
    edited May 2018

    remembering those we’ve lost and their families.

    Love to all the rest.

    I am a mess this mother’s day

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  • zarovka
    zarovka Member Posts: 3,607
    edited May 2018

    Hugs Leftfoot. This is a tough day for all of us fighting to be there for our families. Tough for the families. Tough to remember all those we've lost. I am right there with you this morning.

    >Z<

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  • gramen
    gramen Member Posts: 179
    edited May 2018

    Leftfootforward, I'm sorry your not feeling well today...I'm sending you a big cybernetic hug all the way from Atlanta. I'll be starting Xeloda Tykerb this week, for progression in my lungs but I'm sort of happy it will hopefully go to my beautiful spotty brain as well.

    Zarovka, ugh...wasn't that spine MRI fun? Ugh. Nurses saw I was mess every time I came for SRS treatment last year and would tell me take an Ativan and do treatment half an hour later...I think I had 3 different sessions (I think, may be 4) as mets kept popping up on every follow up MRI...

    The first time I remember been so scared of breathing thinking breathing was making my head move inside the mask and miss the Mets...the last time I showed up with my hair wet and they waited for it to dry lol...

    First time I was hidding the mask since I was so depressed, by the third one my nephew was playing with it, and the other day I threw them all away!

    In my case, MRI showed clearly leptomeningeal mets and with the help of our fearless Agness (Ann) and other angels I was able to find a Dr willing to put me on intrathecal herceptin (since I'm her2+)...I believe is no coincidence that no new mets since starting IT herceptin last December :-) I'm now dealing with possible necrosis, but that's another topic.

    I'm sure you will find your path for this brain stuff as well, just remember, one day at a time...

    image



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  • zarovka
    zarovka Member Posts: 3,607
    edited May 2018

    Intrathecal herceptin is da bomb. I suspect it did you a world of good and still is. I may be checking in with you on that if certain diagnostics fall out in certain ways.

    What a group we are.

    >Z<

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  • mara51506
    mara51506 Member Posts: 5,088
    edited May 2018

    I also hope IT Herceptin will be made available to me if needed as well. It would be nice to have herceptin go directly to my brain since I have responded so well from the neck down.

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  • keetmom
    keetmom Member Posts: 432
    edited May 2018

    Z sorry you maybe joining us

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  • zarovka
    zarovka Member Posts: 3,607
    edited May 2018

    Hi keetmom - If i have to deal with a brain lesion, I am grateful for your support. So glad to have this forum. I do find articulating my experience, concerns and fears about this lesion almost beyond my ability. Will get there with time and your support.

    >Z<

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  • mara51506
    mara51506 Member Posts: 5,088
    edited May 2018

    Z, hoping you are not dealing with a malignancy. Sending positive energy your way.

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  • zarovka
    zarovka Member Posts: 3,607
    edited May 2018

    Thanks Mara - so do I. If they zap it with radiation as I expect they will, then I may never know.

    >Z<

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  • SJ18
    SJ18 Member Posts: 1
    edited May 2018

    Good day ladies! I’ve just joined this group as yesterday I’ve entered hospital after a 2cm tumour has been found in my left brain following an MRI. I’m 39 now and had breast cancer diagnosed nearly a year ago (June 2017), and had right-side mastectomy, chemo, and radiation. The months this year have been about recovery: exercise, rest, getting back to work things. Have had a lot of anger and emotions the last month or so but figured it was normal after the last year. Last week had sudden episodes of serious mental disorientation, short term memory loss which led me to the MRI and diagnosis. Today is the PET scan to check rest of body. The neurosurgeon I met yesterday mentioned probably a biopsy and possibly surgery for the tumour. He said cyberknife may not be possible depending on inflammation issues. Not sure. It’s not confirmed it’s malignant but obviously very likely. Sooo, just thought it’s a good time to join this group and have started to read through your posts to gather your experiences and wisdom. Wishing you all the best day! 

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  • Moderators
    Moderators Member Posts: 25,912
    edited May 2018

    Welcome, SJ18! We're sorry you find yourself here, but we hope you feel supported on this journey. We're all here for you, you're going through this alone!

    The Mods

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  • zarovka
    zarovka Member Posts: 3,607
    edited May 2018

    SJ18 - Right there with you on the hot seat dealing with a 2cm lesion. Sounds like there is only one, which is good news. I've been crabby with some weird symptoms. Nothing that is not fully explained having cancer and dealing with treatments, but I wonder about that brain lesion ...

    Keep us posted.

    >Z<

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  • josgirl
    josgirl Member Posts: 231
    edited May 2018

    SJ18,

    Sorry to have you join us but welcome. This group of ladies saved my sanity almost two years ago. I’m 39 in August. I was originally diagnosed in 2013 but with brain mets in 2016. Whatever questions ask! I know I was met with disbelief and denial from friends and family with this diagnosis so pm me or vent here. We understand.

    Josgirl.

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  • Goodie16
    Goodie16 Member Posts: 446
    edited May 2018

    I'm sorry to see some new members, but as others have said, you will find much support and knowledge here. We have lots of experts on the various treatments for brain mets, please feel free to ask away! I've only had a craniotomy and gammaknife to the tumor bed. The treatments for my body are listed in my signature.

    Much love to all.

    Carrie

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  • azs40
    azs40 Member Posts: 99
    edited May 2018

    Anyone else plumb exhausted post WBR? It's a real thing right

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  • azs40
    azs40 Member Posts: 99
    edited May 2018

    It's a real thing, right

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  • azs40
    azs40 Member Posts: 99
    edited May 2018

    Sorry everyone, I can't get the question mark at the end and I'm an English major!

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  • leftfootforward
    leftfootforward Member Posts: 1,726
    edited May 2018

    yes it’s a real thing

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  • mara51506
    mara51506 Member Posts: 5,088
    edited May 2018

    I was fatigued for a good long time post WBR. After almost 6 months, I started some walking in place workouts in the morning which finally stimulated my appetite. Once I was able to eat and exercise, my fatigue went away quickly.

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  • azs40
    azs40 Member Posts: 99
    edited May 2018

    Thanks Mara

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  • illimae
    illimae Member Posts: 5,710
    edited May 2018

    azs40, for some reason, the last digit is deleted from a post unless you add a space to the end before submitting, just FYI

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  • Lita57
    Lita57 Member Posts: 2,437
    edited May 2018

    I lost my sense of taste...everthing tasted metallic, andI was fatigued for 2 mos after wbr. It does come back, just need to be patient.

    L


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  • azs40
    azs40 Member Posts: 99
    edited May 2018

    Thanks Lita. Did anything help, or do you just give in to it? I had 10 sessions. I don't have metallic taste, just lack of appetite, and fatigue like crazy.

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  • Lita57
    Lita57 Member Posts: 2,437
    edited May 2018

    Azs, I was told to use plastic utensils rather than reg silverware to help with the taste.

    Chocolate and certain beverages tasted the worst, and i soon learned what to stay away from. Meat and dairy were perfectly fine, however.

    The fatigue can take several weeks to run its course.

    L


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  • SOGNY
    SOGNY Member Posts: 12
    edited May 2018

    Hello to everyone, I found this documentary on youtube about treatment options for brain mets , I wish I had seen it when I was first dx , would have helped me understand my options. I haven't had my radiation treatment yet , I couldn't find a physician who would agree to do SRS because I had around 19 lesions , some in this board were luck to have a doc open to try it . I hope the video will help someone who have questions about it. Wishing we all can enjoy a good holiday weekend with loved ones.

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  • illimae
    illimae Member Posts: 5,710
    edited May 2018

    Thanks Sogny, great info and explanation of our options, and some I’ve never heard of. Well worth the time to watch.

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