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I now have multiple brain mets. So scared! Please help!

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cmhartley
cmhartley Member Posts: 23

My dearest ladies,  just found out yesterday that this nasty friggin beast has managed to make into my brain which what I always feared and prayed I would never have to deal with. This comes after learning Halaven failed and I have significant progression in liver and bones, have been battling C Diff and recently a horrible reaction to Gemzar. Have been having headaches, facial numbness and most recently blinding lights and liss of vision which led me to have an MRI.  Can't say it was the best way to start the New Year. 

As you can imagine I am absolutely terrified!!  I have multiple mets measuring about 1- 1 1/2 cm with some swelling. Onc started me on Dex every 6 hrs which is helping other than making me a bit jittery. Still able to sleep but not sure how long that will last. :). Hoping to meet with radiation oncologist tomorrow to discuss WBR. This also terrifies me. I know nothing about WBR and thus just assume it is a horrible experience that will leave me non-functional afterward.  I also feel like the cancer now has the upper hand and I am losing my battle. My onc assures me this is only a bump in the road and that I can get back on chemo once I'm done with WBR and will still be functional. I obviously have a lot yo learn and research and know there is a long thread on brain mets here but was hoping for some reassurance that I might be able yo get through this with little SEs and perhaps some success. I just don't want to prolong the inevitable for just a few months and to suffer terribly in the meantime. 

Thank you all so very much for being there for me in such a difficult time!

Katie

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Comments

  • Romansma
    Romansma Member Posts: 650
    edited January 2014
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    Hi Katie.  I don't have any experience to offer, but I just wanted you to know I care.  I wish there was something I could offer.   I am sure you will get some answers soon.  Hang in there!

  • Tomboy
    Tomboy Member Posts: 2,700
    edited January 2014
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    I am so sorry sweetie. i know that i am stage lllc, and dont really belong here, but i have had two friends with brain mets, and it is also one of my greatest fears. my one  friend had mets that were huge. golf ball sized, they said, and there were four of them. and she must have had them for a very long time. she had lung cancer, and remarkably, lived for 10 years after being initially diagnosed at stage four. they did do WBR on her, they said she was not a candidate for gamma knife. my friend who, like us, had bc, had 5 brain tumors, pushed for gamma knife, because, she said, if that did not take care of them, then at a later date, she could always have WBR. and 2 years later, she did WBR. i strongly encourage you to get  as many opinions or to do a release form that insists on gamma first. i know that they push mightily for wbr, because of so called "seeding". and that is also funny, because the treatment center I go to, insist there is no such thing as cell cascade. please inform yourself as completely as you can, and again, i am so sorry to hear you are having to deal with this.

  • VivianS
    VivianS Member Posts: 43
    edited January 2014
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    big hug and lots of love. I think I would go to the brain mets section, too, if I was you. Wishing all the best. I have avoided research in that area, so I am going to read up . Wishing all the best.

  • meima-Bev
    meima-Bev Member Posts: 15
    edited January 2014
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    I hope and pray your Onc. can soon resolve these mets.  I'm very sorry you have to deal with this.        Bev

  • moderators
    moderators Posts: 8,287
    edited January 2014
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    Katie, we're sorry that the beast has made it to your brain. You're right that the ladies of the Brain Mets Sisters thread are your best go-to source for first-hand information and experiences with various treatments. Here's the link to go straight there, and you can always find it from the Important Links thread pinned at the top of the Stage IV forum.

    We're all thinking of you, and wishing you the best.

    • The Mods

  • Connis
    Connis Member Posts: 10
    edited January 2014
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    cmhartley, I also had the lightning flashes and lose of vision and had it checked out, it was called an ocular 

    migrain and no problem    Hang in there   

  • jocanuck1951
    jocanuck1951 Member Posts: 214
    edited January 2014
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    my heart goes out to you kiddo, don't think your alone in this!  Xoxox Jo 

  • Chickadee
    Chickadee Member Posts: 469
    edited January 2014
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    in September I was exactly where you are.  The WBR was a strange experience but it's not invasive, its a weird whirring machine going around your head while you where a custom fitted mask. I actually got more energetic at first.  Location of the lesions is what you want to consider. Mine were all to the rear and therefore affected mobility and balance and not personality or cognitive abilities.   I had the follow up MRI and the larger one is still evident so I'm getting 5 more sessions in a couple weeks. 

    Lot of fatigue now. 

    My onc did allow that isn't a good development but it's not the end and I need to keep moving forward and see where it goes. 

    Yes I'm scared and hope everything settles down but there is nothing else to do but learn what I can and try to make the best decisions with my Dr.  

    I hope your process is successful and you can work your way towards a place of balance.  Most of the time that's where I am now, but surely not at first. This sucks. 

  • justjudie
    justjudie Member Posts: 196
    edited January 2014
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    Hi Katie,  I am so sorry you are now dealing with brain mets.  Many gentle hugs to you.  I wish I could comfort you.  I do hope it will not be as bad as you are thinking it will be right now.  Please do check out the Brain Mets Sisters thread.  I think that will help you a lot.  They are very brave and I think they will be of help to you.   You are not alone, many of us are holding your hand.  You are in my thoughts and prayers too.   Please do keep us posted. 

  • formygirls
    formygirls Member Posts: 154
    edited January 2014
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    I was first dx with brain mets in may 2012. I never had a brain scan before that. They are\were asymptomatic. I have had 9 gamma txs first round in May. my rad onc did not do Wbr but did gamma but we knew we would not get them all. Six  IT chemo through spinal taps after the follow up MRI in summer 2012 as the neuro onc felt I had lepto menengial mets. I have had 5 gamma tx over 3 days last summer and finally 10 sessions of WBR this halloween. The txs itself are not bad but WBR has given me a lot of fatigue. It is not the end but it is what it is and you have to meet with your oncs and develop a plan. Throughout, I have had brain MRI's every 2-3 months. I have my first post  WBR MRI on the 17th. I have a neuro oncologist along with a radiation onc looking at my scans. My main onc stays away from the brain and she treats my systemic disease which is everywhere--- lungs, liver and bones and nodes. If you have questions, please PM me.

  • ibcmets
    ibcmets Member Posts: 312
    edited January 2014
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    Katie,

    Very sorry to hear of your progression to your brain.  I hope many sisters will login here who have experience with this to calm your fears.  Will keep you in my prayers.

    Terri

  • kayrnic
    kayrnic Member Posts: 111
    edited January 2014
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    That is a sucky way to start the year! I have no experience with brain mets, but after being on these boards for a couple of years now, I can say there have been many women who have done WBR and seem to have done really well afterward. Trust in your doc......a bump in the road, but far from the end hopefully! Keep us up to date. We'll be thinking of you! 

  • kayrnic
    kayrnic Member Posts: 111
    edited January 2014
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    forgot.....check out the blog "words from ward 4"

    She just finished WBR and seems to be doing great. She talks about it in her latest post. 

  • pajim
    pajim Member Posts: 930
    edited January 2014
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    Katie, I'm sorry to read this. It must be very frightening, on top of which your brain isn't working quite right?

    I have no experience but my cousin had brain mets.  She'd had a lot of trouble remembering and was in a fog state.  After the WBR she bounced right back.  Felt like she got her life back, though there are a lot of things about the previous months that she never remembered.

    She never told us about the experience of WBR so I can't help there.

    Wishing you all the best and sending comfort. ..

  • iwillwinthisbattle
    iwillwinthisbattle Member Posts: 42
    edited January 2014
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    Hugs and prayers being sent your way.

  • bestbird
    bestbird Member Posts: 232
    edited January 2014
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    I am so sorry to hear your news but wanted you to know I have a friend who had WBR 2 years ago for bc mets to the brain and is doing fine!  You had mentioned doing some research so I dug into my notes re: brain mets and pasted them below.  Please forgive the length of this post, and accept my very best wishes for a successful treatment!



    Brain metastasis is usually treated with Cyberknife, Gamma Knife,
    Proton Therapy, Whole Brain Radiation (“WBR”)
    and/or possibly chemotherapy.  A key
    issue regarding chemotherapy treatments is that few drugs are able to pass
    through the blood-brain barrier, although some drugs and combinations may work.  Additionally, boswellic acid may be helpful
    in reducing edema (swelling) and Emend may help reduce brain tumors.  More information is provided about these
    towards the end of this section.

    Gamma Knife, a specific form of Stereotactic
    Radiosurgery (“SRS”)
    , is a radiosurgical treatment that delivers
    a dose of gamma radiation to the target with surgical precision.. A high dose
    of radiation is given to a target, usually a tumor, with minimal dose to the
    surrounding tissue. Ideally this dosage results in destruction of the tumor
    while sparing function of crucial organs or tissues adjacent to the treatment
    area, such as the optic nerve or brainstem.

    CyberKnife is also a form of SRS, andis a non-invasive alternative to surgery for
    the treatment of both cancerous and non-cancerous tumors anywhere in the body,
    including the prostate, lung, brain, spine, liver, pancreas and kidney. The
    treatment – which delivers high doses of radiation to tumors with extreme
    accuracy – offers hope to patients who have inoperable or surgically complex
    tumors, or who may be looking for a non-surgical option.

    The CyberKnife
    differs from the Gamma Knife
    by
    employing real-time X-ray images to guide treatment; and as a result has
    expanded SRS to sites outside the brain. 

    For more information about CyberKnife vs.
    Gamma Knife: http://www.swmedicalcenter.com/documents/cyberknife/oncologyissuesvol21no5.pdf

    Proton Therapy  A proton is
    a positively charged particle found in the nucleus of an atom. When protons
    interact with electrons in the atoms of cancer cells, they impart energy to the
    electrons, causing them to leave the atom and undergo a series of interactions
    (ionizing events) that result in damage to the DNA of the cancer cell. Damaging
    the DNA destroys specific cell functions, which include the ability to divide
    or proliferate. A cancer cell's ability to repair molecular injury is
    frequently inferior to that of cells in normal tissues. As a result, cancer cells
    accumulate permanent damage and subsequent cell death occurs. As the cell dies,
    so does the tumor. Traditional radiation therapy affects everything in its
    path, so doctors have to limit the dose delivered to the tumor in order to
    minimize damage to surrounding healthy tissue. Protons enter the body with a
    low dose of radiation, which increases when the beam slows down within the
    designated target tumor and then protons stop. Compared to an X-ray beam, a
    proton beam has a low “entrance dose” (the dose delivered from the surface of
    the skin to the front of the tumor), a high dose designed to cover the entire
    tumor and no “exit dose” beyond the tumor. The combined effect is greater
    precision in targeting the tumor with a more potent dose of radiation. The accuracy
    of proton therapy for treatment delivery is within approximately one
    millimeter. Fromhttp://www.mdanderson.org/patient-and-cancer-information/cancer-information/cancer-topics/cancer-treatment/radiation/proton-therapy/index.html

    Whole Brain Radiation: Whole brain radiation therapy (WBRT) is effective and
    the treatment of choice if there are many brain mets. Using MRI to examine the
    brain, about 80% of patients have more than one lesion. For patients with only
    a single brain lesion, SRS is a standard of care. For WBRT, standard
    dose-fractionation in the US is 3000 cGy in 10 treatments over 2 weeks, with
    one fraction given each day, 5 days a week. Multiple large studies have shown
    that this provides disease control in the brain for about half of people at 6
    months (for many patients 6 months is longer than their survival, so in
    reality, more patients have disease control for their remaining lives).

    WBRT
    can be given instead of, or in addition to, SRS. From http://cancergrace.org/radiation/2008/07/30/wbrt-review/

    Emend:  This is an anti-nausea drug that appears to
    help combat brain metastasis.

    From
    http://www.medicalnewstoday.com/releases/257903.php

    Namenda is an
    Alzheimer's drug .that has been shown to help preserve cognitive skills
    after WBR
    ; it may be worth discussing with your doctor. From:
    http://www.cancer.gov/ncicancerbulletin/111312/page3

    To help relieve edema
    (swelling):

    Boswellic Acid: One study showed that Boswellic acid may provide
    therapeutic relief to those who suffer from brain tumors.

    Forty-four
    patients with primary or secondary malignant cerebral tumors were randomly
    assigned to radiotherapy plus either BS 4200 mg/day or placebo. The volume of
    cerebral edema in the T2-weighted magnetic resonance imaging (MRI) sequence was
    analyzed as a primary endpoint. Secondary endpoints were toxicity, cognitive
    function, quality of life, and the need for antiedematous (dexamethasone) medication.
    Blood samples were taken to analyze the serum concentration of boswellic acids
    (AKBA and KBA).  RESULTS: Compared with baseline and if measured
    immediately after the end of radiotherapy and BS/placebo treatment, a reduction
    of cerebral edema of >75% was found in 60% of patients receiving BS and in
    26% of patients receiving placebo (P = .023). These findings may be based on an
    additional antitumor effect. There were no severe adverse events in either
    group. In the BS group, 6 patients reported minor gastrointestinal discomfort.
    BS did not have a significant impact on quality of life or cognitive function.
    The dexamethasone dose during radiotherapy in both groups was not statistically
    different. Boswellic acids could be detected in patients' serum.  CONCLUSIONS: BS significantly reduced
    cerebral edema measured by MRI in the study population. BS could potentially be
    steroid-sparing for patients receiving brain irradiation.

    From:  http://www.ncbi.nlm.nih.gov/pubmed/21287538


  • Tomboy
    Tomboy Member Posts: 2,700
    edited January 2014
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    wow,kayrnic. thank you for that blog. she is an outstanding writer, and i have read many womens blogs through this experience. i bookmarked it immediately.

  • steelrose
    steelrose Member Posts: 318
    edited January 2014
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    Katie,

    Oh, I'm so sorry to read this news. I read your profile. and you were diagnosed three months before I was, and we were born six months apart. It's no wonder i've always been comforted by your posts! I know it's scary time, but it does sound like your oncologist has a very good attitude. You will get through this, and we're all here to help you. I haven't dealt with brain mets myself, but the brain mets thread is a great resource. I am thinking of you, and i send you love...

    Rose.

  • chrissyb
    chrissyb Member Posts: 11,438
    edited January 2014
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    Katie I'm so sorry to hear this news.................it is our greatest fear.  I have no experience but wanted to send you warm (((((((hugs))))))))  and wish you the best possible outcome with your treatment.

    Love n hugs.    Chrissy

  • heidihill
    heidihill Member Posts: 1,856
    edited January 2014
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    Katie, we are all holding your hand. This is scary. I hope whichever treatment you get, you'll have good, long-lasting results.  

  • Jill49
    Jill49 Member Posts: 25
    edited January 2014
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    Oh, Katie.  I'm so sorry you have to deal with this.  I don't have any experience - yet -  with brain mets, but am thinking of you and hoping you have success with whichever treatment you have.

  • Leah_S
    Leah_S Member Posts: 1,929
    edited January 2014
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    Katie, I'm so sorry you have to go through this. I don't have any knowledge to share about this but wanted to send my love.

    Leah

  • tina2
    tina2 Member Posts: 758
    edited January 2014
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    Katie,

    What a scary time you're having. I'm piling on with more hugs, adding a wish that the WBR experience is not nearly as awful as you fear. May it pulverize those mets and be just the "bump in the road" your oncologist predicts.

    Tina

  • brandall
    brandall Member Posts: 97
    edited January 2014
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    Katie, 

    Many, many hugs coming your way!  I don't have much experience with WBR, but do know that one of my friends just had it in November.  She is doing pretty well now, and I know that she has been texting with a lady who had WBR done over 5 years ago and is doing great.  I like your Oncologist's attitude and I too hope this just a bump in a long, long road for you!  Hugs!

  • chris1959
    chris1959 Member Posts: 60
    edited January 2014
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    Katie ,

       so sorry to hear this .I have no experience with brain mets but wanted to send hugs your way ..I will be thinking of you .

                                                                                                                    chris

  • LizLemon
    LizLemon Member Posts: 191
    edited January 2014
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    Katie,

    I am so sorry you are facing this terrible fear. I have no experience with this yet, but wanted to offer gentle hugs to you. Please keep us updated on how you're feeling - not just physically, but emotionally. Sending you love and light.

    LL

  • rafitamia
    rafitamia Member Posts: 1
    edited January 2014
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    Hi, was reading up on your info, and mom went through that, only that mom did a lot of herbs, alternative therapy for nine months, and chemo.  What I found that helps with that is Turmeric, an Indian spice, that Does target the cancer cells in the brain.  I found that a little late for mom, was able to give it to her only a month, I believe that we didn't have enough time from when we found ou,t and I found the Turmeric.  You might want to give it a try, nothing to loose, and perhaps something to gain.  What I also found out after the fact is that that one month on the Turmeric, it brought the cancer cell count from 150 to only 24....hope you all will give it a try, read up on it, just type Turmeric and cancer.  Also for SE's mom took Astragalus also very good against pain, which helped mom, Beets, are also good to fight off cancer cells.  Don't know if I can put mom's website on her journery through cancer, (selling nothing) but mom did want to help others with her experience.  www.espiesfaith.com  look at page with title of Alternative Therapy, also visit www.ofeliaudave.com  God blessings and peace to you all in this fight for your life. 

  • Dita
    Dita Member Posts: 14
    edited January 2014
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    sending you a big hug and thinking of you

  • texasrose361
    texasrose361 Member Posts: 895
    edited January 2014
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    aww looks like we found out same day! Did you get into the rad onco? I will be a hop, skip and jump away getting treated (i actually live in san antonio but havent changed my location) keep us posted!

  • vickib
    vickib Member Posts: 51
    edited January 2014
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    Hi Katie,

    I am  sorry you are dealing with this, same thing happened to me end of October. Surgery, then WBR. I finished WBR either the first or second of December. Ch ickadee is right, it is a strange exerience. I had some issues after the first f w treatments but Decadron took care of that. I was really tired after the first e few weeks but seems much better now. I wish you all the best and hope the WBR kicks butt!