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Brain Mets Sisters

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Comments

  • Kazzie61
    Kazzie61 Member Posts: 418
    edited August 2013

    Just an update.....onc has ordered a brain scan (I'm going this morning).

    He said any new symptoms should be checked, which I'm grateful for.

    Hopefully it'll all be good & give me peace of mind.....keep ya posted.



    (((Hugs)))



    Karen xx

  • Kazzie61
    Kazzie61 Member Posts: 418
    edited August 2013

    Brain scan all clear....:) :) 👍👍👍

    So stable bone mets, barely visible liver mets & no brain mets......I think I might get to meet this grand baby of mine.....:) 😜😜😜



    (((Hugs)))



    Karen xxx

  • Chris62
    Chris62 Member Posts: 10
    edited August 2013

    yay!yay! yay! and super yay!!  So happy for you.  Do the scan clear dance....

    Hugs

    Chris

  • Karen2012
    Karen2012 Member Posts: 75
    edited August 2013

    Got called by cancer clinic at 9:00 p.m. last night to show up to see an onc (mine is on vacation)  and he said it couldnt wait til Monday. I have an appt. at 9:15 this morning. Had a cat scan yesterday. He said radiologist saw something we need to discuss immediately in my neck. i'm assuming its the lower part of the brain. He also asked me if I double vision, balance problems, or headaches. Scared as hell right now. Will post when I get back. Any words of encouragement??

    I feel very defeated and doomed.

  • hotandcold
    hotandcold Member Posts: 70
    edited August 2013

    Oh Karen, what a hard thing to do as my Onc  dr. just ordered scans and asked me the same questions. I have some nasuea and he wonders if there is a tumor in my lower brain/neck that is causing it. My scan isn't until next Tuesday.  I finished WBR 10 weeks ago.  I had MRI, at 5 weeks out and it showed that all the little ones were gone and rads Dr. said we should wait another 5-6 weeks before we did another MRI. Good luck with everything.  Take hope that the one time another Dr. called me because mine was on vcation , it turned out to be nothing.  I later thought the Dr. just wanted to make an exta office visit money.  

  • jocanuck1951
    jocanuck1951 Member Posts: 214
    edited August 2013

    Jeez Karen, I'm thinking ya!

    You too Hotandcold!



    Could it be that the onco's are being very diligent? Xoxox. Jo

  • EnglishMajor
    EnglishMajor Member Posts: 122
    edited August 2013

    Sending good thoughts, Karen. Maybe as Jo suggests the fill-in doc is being super diligent. If there is any question, of course they want to err on the side of caution.

  • Karen2012
    Karen2012 Member Posts: 75
    edited August 2013

    Results are in ... 4 mets in the bottom half of my brain, probably doing another scan to cover the top too. Put on prednisone today to take care of the fluid in my brain. Onc is shocked that I am asymptomic. No problems whatsoever that I can blame on brain mets. Next on the agenda ...radiation next week. I had a bad feeling about this. Can anyone provide me some encouragement with their experience with brain mets. I told the onc I didn't want the prognosis. I only want to hear from you girls that I trust.

  • Kazzie61
    Kazzie61 Member Posts: 418
    edited August 2013

    Karen2012.....I can't offer any advice but just wanted to send big (((hugs)))

    Thinking of you & I hope the road ahead isn't too rough xx



    Karen xx

  • Chris62
    Chris62 Member Posts: 10
    edited August 2013

    Karen, I was just diagnosed with Brain mets July 2013.  I had no symptoms either.  I am now undergoing WBR.  It is a very scarey diagnosis.  The meds I was put on to prepare me for the Radiation made me sicker than the cancer.  I try to stay in today and hope that I will get my second wind before to long.  I have completed 9 treatments and have 6 more.  My head has become tender to the touch, so far I haven't lost my hair yet.  I'm supposed to though according to statistics.  I am hoping you find peice within this new journey you face. 

    Hugs!!!

    chris

  • Karen2012
    Karen2012 Member Posts: 75
    edited August 2013

    Thank you Kazzie 61 for the encouragement. Chris - please stay in touch with me with through the board or by pm. How many mets did you have?

  • jocanuck1951
    jocanuck1951 Member Posts: 214
    edited August 2013

    Karen....so upset to read your news...so upset! Xoxox Jo

  • formygirls
    formygirls Member Posts: 154
    edited August 2013

    Karen,

    I have been dealing with brain mets and have gone through radiosurgery twice. I am sorry to read your news. I wish you well and hope your tx plan can destroy these mets. Brain mets suck. The first time I had 9 tumors and this month another five. Lots of hugs. I get by with daily Ativan. Anything to forget reality. I stay away from any prognosis discussion.

  • Karen2012
    Karen2012 Member Posts: 75
    edited August 2013

    Thank you Jo, I'm just hoping for the best on Tuesday when I have a total MRI and hope they don`t find more.

    Formy - what is radiosurgery, sorry my question mark isnt working. I wonder if its something they do in Canada. I`ve been told I`d probably have WBR, why is everyone so against this. I need to know the facts from my mets sisters. So I have an argument against it with the radiologist.

    Thanks gals

  • hendricks1
    hendricks1 Member Posts: 24
    edited August 2013

    Hi Ladies-just curious about the radiosurgery (I guess that's Cyber/Gamma Knife right?). What is the maximum you've been told as far as being able to do surgery?  I was told 10 or so?  

    Also, just curious if anyone is on Xeloda or BKM120 and had experienced bad rashes? I've had one for the last week, cant figure out which drug it is or if it is a reaction to another drug, sun reaction or what.  It's driving me crazy-a week and it's still spreading to different places : (

  • formygirls
    formygirls Member Posts: 154
    edited August 2013

    Karen,

    Radiosurgery is targeted radiation ( steriotatic radiation) vs whole brain radiation. This targets radiation only at the tumor sites. Both procedures have their pros and cons and your radiologist can discuss what is right. Radiosurgery can be done in a few days and has less side effects but is not effective when you have a large volume of mets. My cancer center is unique that they did it for 9 mets but it is generally done for 3 or less mets. WBR is generally done only once so the timing should be right. At my center they do not repeat WBR. Radiosurgery can be repeated as needed.my next tx will probably be WBR. Pm if you have any questions. Happy to talk with you.

  • Karen2012
    Karen2012 Member Posts: 75
    edited August 2013

    Thanks for the info formy. This is all new to me.

  • Capriness
    Capriness Member Posts: 111
    edited August 2013

    I posted this as a new thread on the Stage IV board but thought it might get better answers on the brain mets thread:

    My onc suspects I may have brain mets so he's having me get an MRI on my head.  The only problem is I'm extremely claustrophobic and can't have anything touch my mouth or nose or clamp my head down or I freak out.

    They told the appointment setter, who then relayed to me, that they don't clamp my head down or anything (whew!) but it involves a "harness" and "something across my face but not touching it."

    Has anyone had this type of MRI and if so, can you please explain better how it's done?  I'm being driven there so I'm going to take a double dose of clonazepam but I'm still scared to death.

    Thanks for any info.

  • Karen2012
    Karen2012 Member Posts: 75
    edited August 2013

    Teri - We're in the same boat... far as I'm concerned...we've been to hell and back already. My thought is that this, in combination with clonasapam should be ok for us. I go tomorrow. When do you go? Good Luck!

  • Capriness
    Capriness Member Posts: 111
    edited August 2013

    Karen, my appointment is Thursday at 1:30.  I'll be thinking of you tomorrow.  Please keep me in your thoughts on Thursday.

    Thanks.

    Teri

  • formygirls
    formygirls Member Posts: 154
    edited August 2013

    I have had many brain MRIs. They do put something around your face to hold it but it is not clamped.you do have to stay still the entire time. It is very loud so they give you earplugs. My machine is the loudest one in our center but my brain onc insists on it. If you are very claustrophobic, is an open MRI an option? We do not have one but there are places that do. I also get contrast during it. Mine is over an hour long but I believe the std is around 40 mins. The noise bothers me more than anything. I take an Ativan and just keep my eyes closed during the ordeal. I get one every 6 weeks so it is another thing that I just deal with. It is better to get a high res MRI if that is an option so you don't have to take another one for radiosurgery planning...hopefully not needed. I hope this not too much info.



    I wish you both good luck and hope you get good results.

  • hendricks1
    hendricks1 Member Posts: 24
    edited August 2013

    Ladies, I too am not a fan but I keep my eyes closed the whole time and sing songs to myself, the lullabies I sing my kids, old favorite tunes help me pass the time. Hope you both have good luck this week-thinking of you and sending hugs.  Gail

  • jocanuck1951
    jocanuck1951 Member Posts: 214
    edited August 2013

    I'll be sending GOOD thoughts to you guys...pocket party... Karen, the bar is serving herceptin for me tomorrow, Teri I'll jump in your pocket on Thursday ! Xoxoxo Jo

  • Capriness
    Capriness Member Posts: 111
    edited August 2013

    Jo, so if I feel something in my pocket IT IS NOT A SPIDER so don't smash it! Surprised Got it! Thanks.

    And thanks to everyone for all the help and advice. 2 more days.  I'm nervous but got another headache this morning so I know I need to do it. Gotta love this F***in' disease, huh?

    Teri

  • jocanuck1951
    jocanuck1951 Member Posts: 214
    edited August 2013

    Ha Teri....I move mountains and don't sleep till I've killed the sucker! Get good and drugged...who gives a sh*t.....blast yourself with Ativan, truly!! I'll try not to squirm lol xoxox Jo

  • Karen2012
    Karen2012 Member Posts: 75
    edited August 2013

    Teri - I went today an it was totally unexpected as to how easy it was. Granted it was a new hospital where the MRI's are newer and brighter. But I did bring a sleep mask with me, but no need for it my eyes were totally open. Piece of cake. I hope it goes just as well for you. I'm more concerned about my results now. Good Luck.

  • jocanuck1951
    jocanuck1951 Member Posts: 214
    edited August 2013

    Please let us know Karen. Xoxox. Jo

  • Rosevalley
    Rosevalley Member Posts: 1,664
    edited August 2013

    I will be sending out prayers for you Terri and Karen. Take the drugs and try and relax. The closed MRI's give better images I was told... as miserable as it is being squished inside a tube with banging everywhere. Just remember it will end! You want the best images, so try and remember being confined is temporary. I will be hoping for the best. You both have been through so much.

  • cthynsh
    cthynsh Member Posts: 11
    edited August 2013

    Suckers keep trying to invade. Gamma knife getting old...fast!

  • Chris62
    Chris62 Member Posts: 10
    edited August 2013

    Well I finished #10 WBR and I still know my name and where I live.  Feels good.  My hair came out in clumps and I am now sporting a bald head again.  The best part of that is I can be ready to walk out my door to go anywhere in about 30 minutes if I already know what I'm wearing.   I don't wear wigs or scarfs just a little hat so the glare off my head doesn't blind anyone.  I'm glad to be alive today. 

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