BRAIN METS??? COULD IT BE?

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  • BarbaraA
    BarbaraA Member Posts: 7,378
    edited August 2010

    (((((Frankie))))))))) Gentle hugs coming your way along with prayers for you on this journey.

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  • Frankie_
    Frankie_ Member Posts: 422
    edited August 2010

    Barbe1958- Yes believe it or not I still plan on coming tomorrow! See ya there to get that hug in person!

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  • Member_of_the_Club
    Member_of_the_Club Member Posts: 3,646
    edited August 2010

    Aw Frankie.  I'm so sorry.  I do know that a solitary met is as good as it gets for brain mets, it can be zapped or dissected, unlike multiple mets.  I know some of the women with brain mets down in the stage IV section have started with cyber knife and held back on the whole brain thing until necessary, and had success doing that.  Seems like with one met you would be a good candidate for cyber knife.  Can you get a second opinion?

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  • Member_of_the_Club
    Member_of_the_Club Member Posts: 3,646
    edited August 2010

    I should add that my mom had brain cancer in her parietal lobe and also did not have the standard headache/nausea presentation.

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  • Leah_S
    Leah_S Member Posts: 8,458
    edited August 2010

    Frankie, I'm so sorry to hear about this. I have no advice or knowledge to share, but I want to send my good wishes and love.

    Leah

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited August 2010

    Ah Frankie, I am so sorry. Not much more I can say, except I will be thinking of you.

    Keep us updated on what your treatment will be.

    ((((Hugs)))).

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  • hrf
    hrf Member Posts: 3,225
    edited August 2010

    Frankie, this is really crappy news. I'm so sorry. (((Frankie))) I'm looking forward to seeing you tomorrow .. we'll get you a big group hug and we'll support you as you beat this thing. It's doable.

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  • chainsawz
    chainsawz Member Posts: 3,473
    edited August 2010

    Damn.  I am so sorry you have to deal with this crap.  I want you to know there are a few of us on the stage IV forum with successfully treated brain mets and we are here for you.  I had mine treated a year ago with frameless SRS and it was a very easy procedure and painless.  Also, boswellia extract is a good thing to look into for the brain swelling and can help you get on lower doses of the steriods.

    Also, you are her2+ so herceptin\tykerb is a great combo.  Tykerb is believed to get up into the brain.  I know this is terrifying news, but it will be okay and you are not alone. 

    Please PM me anytime - DarleneDenise is another great resource for brain mets information.  She helped me so much.  She's had 11 lesions zapped.  Also, I always have to mention the founder of the hersupport.org site.  She had brain mets treated successfully 10 years ago. 

    When you catch your breath, read about brain mets on http://bcwatchdigest-brain.evidencewatch.com/  The standard of care seems to be WBR, but many of us her2+ gals are pushing for SRS first and then WBR if it is not successful.  xx00xx lisa

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  • SpunkyGirl
    SpunkyGirl Member Posts: 1,568
    edited August 2010

    Crap, crap, crap, Frankie.  That's all I can think to say.  You are amazing, though!  We'll all be rooting for you to kick this thing's butt! 

    Love

    Bobbie

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  • Bugs
    Bugs Member Posts: 1,719
    edited August 2010

    Well hell!  Frankie, I am sorry you are dealing with this crap.  Surgery and rads will kick it's ass.  We'll be here with you!  {{hugs}}

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  • Pure
    Pure Member Posts: 1,796
    edited August 2010

    Prayers for you tonight Frankie....We all here for you... THere is another girl on bc.org that has very similar stats as you. She went 2 years and got a single met to her brain. She had surgery and is now doing radiation. She is being treated at one of the top hospitals here in the states. The doctor told her since it was a single met they were still going for a cure and they didn't upgrade her to stage 4. I don't know if it's ok to share her name but I would be happy to pm her and ask. She is doing great and again they went for a cure. It might be good to compare tx since she is being seen at one of the top cancer centers. Anyway prayers and hugs. Your attitude is an inspiration to us all....

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  • krcll
    krcll Member Posts: 343
    edited August 2010

    Oh Frankie! I am just so sorry to hear your news. Damn it! I had been concerned when you didn't get back to us about your scan results.... But I have understood that a single brain met is something that can be dealt with successfully. It was a good thing that you had those weird feelings with your arms, so that you get a chance to treat it so early. This must be such a scary time for you but there are lots of us thinking about you.

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  • Frankie_
    Frankie_ Member Posts: 422
    edited August 2010

    Thanks again everyone for all your good thoughts being sent my way! today I am looking forward to our Canadian (Ontario) girls luncheon in the Niagaria Lake Area, just getting ready-should be fun!

    Pure: I have sent you a PM.

    Frankie

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  • Summer38
    Summer38 Member Posts: 253
    edited August 2010

    Frankie,

    I am so sorry to hear this! I'll be keeping you in my thoughts & prayers.

    ((((HUGS))))

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  • clariceak
    clariceak Member Posts: 752
    edited August 2010

    I'm so sorry.  I was really hoping for a better result for you.

    Your attitude is amazing and so much progress has been made in treating brain mets.  It's good that you were proactive and were able have your scans early.  Still thinking of you and wishing that the mets are treated quickly and successfully,.

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited August 2010

    Frankie, you looked BEAUTIFUL today and very well pulled-together! You really have your shit together girl friend! The confidence with which you spoke of your plans and steps you are about to take was awe inspiring. You ROCK!!!

    Please keep us posted here on what you are doing so we don't have to chase you all over the board looking for updates! 

    Much love, and even MORE hugs,

    Barbe

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  • Sugar77
    Sugar77 Member Posts: 2,138
    edited August 2010

    Frankie - it was so nice to connect with you today in person.  Barbe said it well, you are so pulled together about your latest deveopment. I will check into this thread to see how you're doing.

    (((((((((((HUGS))))))))))))))

    Sherri 

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  • hrf
    hrf Member Posts: 3,225
    edited August 2010

    Frankie, I will ditto what Barbe and Sugar said. You looked amazing and I am so impressed by your strength and your attitude. Please stay in touch.

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  • amlg1
    amlg1 Member Posts: 596
    edited August 2010

    So sorry to hear the news!We are hear for you!

    Hugs and prayers

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  • perky
    perky Member Posts: 241
    edited August 2010

    I am so sorry!  Was really hoping for a pinched nerve.  I don't want to offend you by talking about how brave you are etc. etc. but it is true. I am in awe of you for the way you faced that monster down right away and I am praying that you can have it evicted for good. 

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  • lexi4
    lexi4 Member Posts: 1,074
    edited August 2010

    Dangit Frankie. I am sorry that you are dealing with this. I am really hopeful that this stinker will be zapped and that cancer will leave you alone forever.

    Hugs and Prayers,

    Lexi

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  • pip57
    pip57 Member Posts: 12,401
    edited August 2010

    Geez, I will have to jump on the band wagon and say ditto to Barbe's comments.  You look wonderful girl!  So nice to meet you.

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  • Orange12
    Orange12 Member Posts: 20
    edited August 2010

    Frankie, Let us know how you go, we are all hoping and praying for the best outcome for you.  Take care.

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited August 2010

    Frankie, take a deep breath and pray--you have dealt with this C thing . God will give you the grace to deal with it again. Believe that God has a plan for you. It may not be the plan that you want , but there is a plan. I found out on the same day of a bx that we knew was going to be positive that I have a brain tumor. Shock yes. Horror no. One horror at a time. Then Dh husband dx'd with lymphoma 3 months later. He is end stage now. Prayers please for an easy passing.

    Did we expect all this---obviously no, but at least on my part without my belief in God and the afterlife. It would have been a greater trial.  Love your God in all ways. Believe he will take care of you. Rage at the dying of the light. And then do what it takes to keep the light on. L&H sas

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  • jdootoo
    jdootoo Member Posts: 253
    edited August 2010

    Frankie, Thinking of you and praying for you. Please check in with us when you can. Sending out lots of love and gentle hugs... ((((((((Frankie))))))))

    One love, Jackie

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited August 2010

    Frankie---update us when you can ---first posting was 7/27 it's now the 8/15th have they got a plan. One of the beautiful people on the nurse thread described her trip to the Himalayas and the Sherpas greeting each other with hands folded as if in prayer with the greeting of Namaste. They translated it as "I salute the god within you". I can't think of a better greeting in all of this world. OR a better goodbye. Or anything.

    Namaste Sheila

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  • Luah
    Luah Member Posts: 1,541
    edited August 2010

    Just saw this thread, and am so very sorry to hear the news, Frankie. I have followed your posts for a while, and you seem to be a smart, determined woman with a great attitude. It can only help as you face what comes. Sending big warm hugs and positive vibes your way. 

    Here's something I like, from one of our posters' signatures, hope she doesn't mind me repeating it:  "Courage doesn't always roar / Sometimes Courage is the quiet voice at the end of the day, saying I will try again tomorrow." 

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  • Frankie_
    Frankie_ Member Posts: 422
    edited August 2010

    Hi Ladies,

    Just wanted to drop you all a quick update. Things are moving quickly with regards to coordinating Dr's consultations with my recent dx. This past Friday (with in 5 business days of my dx) we met with a Dr. who is affilicated with my cancer center and who is in the Radiation Oncology, Professor, Department of Oncology and with McMaster University. I was very impressed with his expertise, professional manner (including bedside manner), patience and experience. He walked us through the different options and in his opionion (my specifc situation) he felt that my lesion could be successfully treated by Radiosurgery *cyberknife* which is a very non-vasion procedure with little se's-treating the isolated lesion itself. I would then be followed with regular monitoring with brain mri's, etc. My hubby and I took in a microtape recorder to capture the consultation. Which helped us to focus on our q's and listen to his recommendations.

    So tomorrow (Monday) we will also be seeing 2 different Neurosurgeons. One is in Toronto and is the head Neurosuregoen (chief/professior at Toronto Western Hospital).

    The other Neurosurgeon is afflicated with my cancer center and too is a head Neurosurgeon/professor at McMaster University.

    We then will met with my medical Onc on Tuesday for my reg visit (lab, herception infusion, and clinic). It is my hope that we will have decided on what route to take and set the date to get it done.

    I feel very fortunate to be able to meet with 3 Dr's (so quickly) to help me to decide what the best route is in dealing with this issue and to move forward as quickly as possible.

    Then hubby and I are off for a previous prebooked camping trip from Wed-Sunday.

    I am feeling well with no symptoms -the steriods are nasty as I am constantly piggyout eating ALL the time-yuck!!! AND the ENERGY doesn't STOP lol! Taking advantage of good friends and company! Making the summer a great one!

    I will post back here after we return from our camp trip -a week from now to provide an update to where we go with our decision with my treatment plan.

    Love each day!

    Frankie

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  • hrf
    hrf Member Posts: 3,225
    edited August 2010

    Lots of hugs, (((((Frankie)))))  I'll be looking for an update when you return from your trip. Enjoy yourself. It was a real pleasure meeting you last week. You have lots of friends here and we are all pulling for you.

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  • crazy4carrots
    crazy4carrots Member Posts: 5,324
    edited August 2010

    Frankie - so good to hear from you!  I don't know the docs at Juravinski but I do have the highest regard for the neurosurgeons at Toronto Western -- they're excellent!

    Best wishes and hugs!

    Linda

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