Brain Mets Anyone?

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Birki
Birki Member Posts: 80
edited June 2014 in Second or Third Breast Cancer

Today I had a MRI and found out that my bc spread to my brain and that I have several small tumors. Needless to say, I'm terrified so am wondering if anyone has survived after the bc spread to their brain. My onc said that the radiation treatments may wipe them out completely, or limit them to just a few that could be surgically removed if necessary.  Then he said that I will also go through chemo and that they have very good drugs to help control or even kill my type of cancer even in the brain.  I would appreciate any experiences people can share regarding mets to the brain.  Thank you all.  P.S.  In case it helps, my BC was HER2+

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  • Estepp
    Estepp Member Posts: 6,416
    edited May 2009

    Boy... I do not have mets to the Brain.. but my dear friend... "DID"... now.. she is clear... free.. NED.. NO CANCER!  She did Cyber Knife Rads and chemo... She did her first follow up Pet and Mri.. NO CANCER.. cannot event tell she had the brain met... She too is or was Her2+... hormone  negative.

    Good Luck.. I think that brain mets are treatable and with my dear friend... they were wiped OUT!

    She is not online here much anymore.. as she have 4 small kiddos to run after...

    If you PM her.. I just bet she will see it soon and write to you.. her screen name is DianaT

    She is awesome to talk to.. and she is 31 -32 years young!

    You can do this too!

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  • Birki
    Birki Member Posts: 80
    edited May 2009

    Bless you Estepp for answering me so quickly.  As you can imagine this has been a horrific day and hearing that my brain is involved was beyond scary.  You have given me hope which for all of us in this darn sisterhood family of cancer survivors and warriors is so critical.  Please please please know that you made a huge difference by sharing that story. Ok, I'm crying so hard right now I need to go.  Again, God Bless you AND DianaT!!!!!

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  • Daisy2
    Daisy2 Member Posts: 1
    edited May 2009

    I have been fighting inflammatory breast cancer since 2006.  One year after I went through 5 months of chemo, both breasts removed and radiation treatment  - I had a stroke.  It turned out to be a tumor in my brain.  My biggest fear, the cancer had spread to my brain.  I was lucky for they were able to remove the majority of it.  I then went through whole brain radiation.  My last radiation treatment to my brain was December 2008. 

    I am still alive despite my oncologist labeling me as terminal.  Fight as hard as you can and believe in your future.

    Hang in there!

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  • Analemma
    Analemma Member Posts: 1,622
    edited May 2009

    If you go  check out the Stage IV forum, there are several threads about brain mets.  I had gamma knife for on in January, so far, so good.

    It sounds like you are having whole brain radiation rather than gamma knife or cyber knife.  Are either of those an option?  It would depend on the size and location of the tumors.

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  • saint
    saint Member Posts: 1,877
    edited May 2009

    HUGS-I want you to find our sisters who have the info & experience you seek. Follow analemma to the other threads where there are survivors sharing remarkable stories that will give you the strength & courage to follow in their footsteps! They are there living, loving & laughing with us-come join them! Don't loose heart---they walk just ahead of you down the same road & will shine their lights back on you to help you find your way down the path.

    Be well & stay strong 

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  • Birki
    Birki Member Posts: 80
    edited May 2009

    Love and support to all of you for your encouragement and responses.  We all know how the terror of cancer can be overwhelming and this website - because of the knowledge and huge hearted sisters / members - are so helpful. Even though experiences can be different for everyone, it still helps to know the potential issues and mostly that some survive.  Once again, please please may EACH OF YOU know I appreciate all your info!!!! Bless you.

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  • Birki
    Birki Member Posts: 80
    edited May 2009

    Hi Annalemma - Both my onc and radiologist mentioned those options; however, because of the number of leasions and swelling I have - and probably where they are located - they weren't an option for me right now.  They are very hopefull that the rads will kill or majorly reduce the lesions and them we can look at all other options including those that you mentioned.  Plus I'll be having chemo along with whatever drug that works for HER+ turmors on the brain.  I did a year of Herception which worked great, but doesn't have the ability to reach the brain for some reason. Good news is that they have a great  drug that works the same as Herception yet works for the brain area.  I pray I'm one of those that gets through this very long journey.....  Thanks so much for your comments and info.

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  • saint
    saint Member Posts: 1,877
    edited May 2009

    Birki--there is no reason NOT to believe you are one of those who gets thru this......I already believe you are!

    Be well & stay strong 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2009

    I have a question

    Did you all have bad headaches and vision issues before they discovered brain mets?. That was the reason my Onc ordered additonal brain CT / PET along with my "normal PET/CT.Now I waiting another biospy on Wed, of my eye. I am so darn scare, when you hear "brain" it freaks you out. We are checking out a lot of lesions, including kidney and activity in my spine and hip, which are causing unbeleivable pain - however the fear of what's going on in my brain is the worse of my fears.

    What exactly is Cyber Knife Rads? If I need surgery - again - do they have to drill into your skull? I Am so scared. Not one of these tests, seems to be an easy one. I heard the eye biopsy means they will stick a needle into my eye - and I'll be awake. OMG! 

    Birki - like you - I am crying all the time since I got my scan results. I took copies *hard and transcription, to my PCP, She had salready seen them and spoke with a number of experts, and told me her concerns. (and referrals) My Onc, did not seem to be concerned - Go figure!

    I had a number of biospies taken on Wed, one might be melinoma. Three Drs think the BC "may" have traveled to my eye (s) and concerned about the bones. What's wrong with my Onc? 

    Birki - you are in my prayers. 

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  • Birki
    Birki Member Posts: 80
    edited July 2009

    Thank you all for your support and kind words!

    Lady4Law - The Gamma radiation is a highly targeted type of radiation that is able to hit specific lesions as opposed to hitting the entire brain.  A few people I've talked to about it said they only had to have the treatment once and that it worked really well and had no side effects at all from it.  It's not surgery - its a radiation treatment that hit whatever lesions may be left over from the original radiation.  

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  • Birki
    Birki Member Posts: 80
    edited July 2009

    Hey, has anyone had Cisplatin or Avastin treatment?  I  was told today that I would have 9 Cisplatin (chemo) treatments and also some Avastin (not sure how many).  Also take Herceptin with no side effects.  I read the general potential side effects, but not sure how common they really are.  The meds they gave me so I wouldn't throw-up worked perfectly during my first round of chemo (different drugs) 2 years ago.  Taking the new stuff always makes me wonder what lies ahead of me.  Just curious if anyone has any experience with either drug and how it made them feel. 

    Birki

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  • EGAL
    EGAL Member Posts: 539
    edited July 2009

    Birki,

      I have brain mets and had Gamma in October.  Tumor has pretty well shrunk.  Onco did not offer anything else.  I had Herceptin for a year and then was dx'd with brain tumor 4 months later. Wonder if I should be on something else??!!!??

    Ellen

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  • Estepp
    Estepp Member Posts: 6,416
    edited July 2009

    Ellen. contact DianaT.. PM her.. she had cyber knife and she is still on chemo for the brain mets. She only had one little 7mm one. She will be on Herceptin for life ( possibly) and she is still on Tykerb...

    Anyway sweety.. Diana is my friend and I know she will talk with you. I do not want to tell you wrong, as I am NOT educated that well in this.

    PM her.... DianaT

    She will talk with you.. she is WONDERFUL!

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  • DianaT
    DianaT Member Posts: 532
    edited July 2009

    Hello! Estepp directed me to this posting.

    I was originally diagnosed in Jan. 2008, went thru double mastectomy, chemo, radiation ongoing herceptin then had a brain MRI in Feb 2009.  That found a singular 7mm (possibly 8mm) brain met (so they think!).  I had one cyber knife treatment at the end of Feb, had a follow up brain MRI in April and nothing was found, not even a hole in my head (onc joked that would be what was wrong with me ~ lucky for him I found it funny!).  After the cyber knife, the med onc added xeloda (chemo - oral), tykerb (like herceptin but crosses the blood brain barrier), avastin with my herceptin treatments every three weeks.  This has not been too difficult, my hands and feet are the problem but I can easily tolerate them.  I get tired more and more with the xeloda.  I thought I would be done with the xeloda on July 4th but I have another 3 cycles to go thru.  I had no symptoms of a brain met, no dizziness, headaches, vomiting, etc... nothing.  I went to the rad onc today for a follow up, all my scans show NED so I am praising God!! We will be ok! you have to put one foot in front of the other, one day at a time.  PM me if you want more specific info.  

    Blessings~

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  • EGAL
    EGAL Member Posts: 539
    edited July 2009

    Diana,

      Thanks for the info.  Do you have mets anywhere else beside the brain?  Or is the xeloda, tykerb and avastin all for the brain mets?  I only (yeah, right only) had 4 AC's, 4 Taxotere , 36 rads and then one year of Herceptin for the BC.  Was dx'd four months after ending Herceptin with the brain mets.  My onco said that chemo would not help the brain mets~hummm???!!!???

    Ellen

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  • Estepp
    Estepp Member Posts: 6,416
    edited July 2009

    Ellen.. from what I know... I think you should get a second opinion. Tykerb is GREAT for brain mets. Diana only had a tiny brain met.. no other mets. Please get another opinion. Are you mets still active?

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  • EGAL
    EGAL Member Posts: 539
    edited July 2009

    Estepp,

      Last MRI in April showed it was still shrinking.  Another MRI coming in October, but I have had some headaches in a different area.  I am thinking I should call onco and get an MRI now.

    Ellen

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  • Estepp
    Estepp Member Posts: 6,416
    edited July 2009

    I think so too.. and then ASK about Tykerb.. it passes the brain/blood barrier. Again.. I am not that educated on this.. but my friend is going through it.. so I read a lot on it... I would be on chemo/tykerb if it were me.... Look into sister and big hugs to you!

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  • Birki
    Birki Member Posts: 80
    edited July 2009

    Boy am I jealous Estepp!  The Tykerb gives me a major red itchy rash that was awful to deal with. Then other side effects that we aren't sure if it was just because my rads treatments just ended and the mix didn't do well or what. Oh yeah, plus, my onc prescribed 5 Tykerb a day (250 mg each), but the pills came with direction only to take 1 a day. Scary but glad it wasn't the other way around based on my side effects.  Have you had any side effects from the Tykerb?????  I know it THE drug for my brain mets..

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  • Estepp
    Estepp Member Posts: 6,416
    edited July 2009

    OH my.. I do not have Mets.. I am sorry to lead you that way. My dear friend here DianaT had a brain met and took the Tykerb... I was just responding to Egals response... that she should look into the Tykerb..

    I am not further educated in mets of the brain. Just what I have learned though Diana..

    I hope you can tolerate the drugs you get..!

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  • donna1231
    donna1231 Member Posts: 5
    edited July 2009

    Hi Diane,

    Why did your Onc order a brain MRI if you had no symptoms?  I would like to get one, but he thinks its not nec.  I also have small children, so dont want mets.

    thanks

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  • DianaT
    DianaT Member Posts: 532
    edited July 2009

    the onc ordered the brain MRI because he said it is his standard of care for Her2+ patients.  The herceptin works so well that the only place a met tends to go is the brain.  I have had clear scans and told I was in remission since April of this year.

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  • Joyce4123
    Joyce4123 Member Posts: 188
    edited October 2010

    Sorry you have brain mets!  My daugher has them as well and is on Avastin currently.  She also has liver mets.  Can you tell me what drug it is that you are now on for your cancer?  Thank you and best to you always.  Joyce

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  • Tabatha00
    Tabatha00 Member Posts: 133
    edited June 2011

    I recently found out I had 3 brain mets.  SHOCKER after being 2 years cancer free.   I had 2 of the larger tumors removed surgically and then had gamma knife radiation.  My first session they treated the tumor bed where the tumor used to be and the 2 lesions.  I still have to have the 2nd tumor bed treated.  

    A repeat MRI showed that the 2 lesions are GONE.  The tumor bed of the largest tumor that was removed surgically is "fuzzy and dying".   GREAT NEWS!!!!!

    I am triple negative and meet with my oncologist on Thursday to find out what he wants to do.  My radiation oncologist is of the opinion that I don't need radiation because I'll apparently have brain MRI's every month for a while and as long as things go well they'll bump that up to 3 months, etc. 

    I'm wondering if because I'm triple negative will I have to have chemo?  I see a lot of you ladies are Her+.   Since I'm not what are the odds of me  having to have chemo?   If I have to have chemo (for those of you who have had it) is it a pill I take or an actual chemo treatment?

    Any advice or experience would be GREATLY appreciated.   Oh, and for those with brain mets that had gamma or chemo did your brain mets come back?

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  • sharalou
    sharalou Member Posts: 223
    edited August 2011

    Gamma knife???? SHIT! Just had an mri, and they found a 6mm lesion on the right occipital bone. Went to meet with gamma knife doctor.  Said about 90% curable.  BUT....... there is something behind my optic nerve, that they are not sure what. Having biopsy next week. Gamma doc is hopingi it's a pseudo tumor.  Saw the video for the gamm knife. Only 3-4 in our state. Anyone with good experience and if so, what?

    Shari From Mi 

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  • lutfun_beauty
    lutfun_beauty Member Posts: 17
    edited July 2012

    My mother had a CA breast cancer in left.she was well for 2 years.now she has a brian mets ......what kind of treatment will she get?can anyone have assumption.I am in south asia in bangladesh.my financial condition is so poor.i fear that can i continue her treatnment?What is Gamma knife treatment?

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  • lutfun_beauty
    lutfun_beauty Member Posts: 17
    edited July 2012

    Hi Diana.....

    I read your story ...very similar to my mother's story...may i know waht Dr you have seen...where u live??????

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