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Brain Mets Sisters

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Comments

  • mara51506
    mara51506 Member Posts: 6,512
    edited January 2018

    Incognitomom, I experienced these symptoms myself. Unless you have weakness or a headache that will not be relieved by a pain reliever, I would not worry. Once you are finished WBR, these things will subside. Hydration and protein can also help the dizziness, if there is so much you are not able to get around, mention it to RO in case the steroid dose needs increasing.

  • wleeky1952
    wleeky1952 Member Posts: 60
    edited January 2018

    I had MRI brain yesterday and met with my RO that afternoon. He was pleased all spots have shrunk considerably. I had one that lesion just a little bigger. I had a special MRI that would tell if blood fed, it was dead tissue and will not cyberknife. I go back in March for follow up. I feel we all made the right decision tfor WBR it was rough but doable. My hair is growing back even no bald spots. I have my next Kadcyla on January 24

    Wanda

  • illimae
    illimae Member Posts: 5,739
    edited January 2018

    image

    Yay Wanda, good news!

  • Kaption
    Kaption Member Posts: 2,934
    edited January 2018

    Wonderful news, Wanda. Thanks for sharing. We need to hear it

  • mara51506
    mara51506 Member Posts: 6,512
    edited January 2018

    I am so glad to hear this Wanda. Always good to hear good news. I am also glad to hear your hair is returning.

    Mine has not returned though my hair tends to grow super slow with the Herceptin/Perjeta. I still do hats, wigs etc. It is filling in now BUT I clip mine super short since I will not grow it until it covers my whole head.

  • incognitomom
    incognitomom Member Posts: 80
    edited January 2018

    Wanda, that is such good news!!!


  • incognitomom
    incognitomom Member Posts: 80
    edited January 2018

    Wow! I'm done with 10 radiation treatments and reducing the steroids. I think I came through this amazing well with very little side effects. It's like they zapped out an anxiety center. I was scared as hell and it really wasn't awful. I felt a little high for a while but now I'm mostly back to normal with my first follow up tomorrow. Did anyone else come through mostly unscathed?

  • Lita57
    Lita57 Member Posts: 2,338
    edited January 2018

    Incognito,

    Yes, it was pretty easy for me, too. Not too many cognitive deficits cuz they put me on Namenda which is an Alzheimer's drug to reduce the possibility of deficits. I take a pill in the am and pm. (Had WBR in mid September)

    RO told me I might experience a low point about 2 mos post rads, and I did...I was depressed and fatigued, but it didn't last long.

    I'm still on very low dose steroids because i still have dizziness and the occasional headache. I still have all 20 brain mets, so that's to be expected.

    Glad you're doing well.

  • incognitomom
    incognitomom Member Posts: 80
    edited January 2018

    Thanks Lita!

    I also have 20+ brain mets and am on Memantine, which appears to be working. Tihs all happened so fast I didn't have time to do my usual research or ask many questions. I am so glad you are doing well! I will ask my RO about any slumps 2 months out. I have a 4 year old I have to stay peppy for :-)


  • wleeky1952
    wleeky1952 Member Posts: 60
    edited January 2018

    I had WBR (10) finished in Sept. it was rough but doable for me. Mostly fatigue and weak legs but getting stronger everyday. I had some depression but as I got feeling better that improved. Will stay on maintenance dose (2 mg) of steroid. It has helped.

    Wanda

  • incognitomom
    incognitomom Member Posts: 80
    edited January 2018

    Hi Wanda!

    Now that I'm finished WBR, my RO is being more forthcoming :-) I told him the steroids made me happy and high and he said that was common. He did not mention that before. I'm tapering off and down to 1mg today. I completely forgot to ask him today about the depression. I don't want that. The fatigue I was experiencing before is coming back with the steroid reduction.

  • azs40
    azs40 Member Posts: 45
    edited January 2018

    Hi everyone...

    I was recently diagnosed with bone mets, and then last week was diagnosed with brain mets.

    Today I had gamma knife rads for 2 tiny lesions, that turned out to be 7 tiny lesions.

    Oddly, before last week, I was accepting the bone mets diagnosis. I'm on Ibrance/Faslodex and feeling pretty good - better than I had for a few months - and going about my life with my husband and 11-year old daughter.

    Now, the brain mets changes things. It's more piled on what's already a lot. I want to be here for my daughter, want to get her to adulthood. Somehow, it doesn't seem possible now.

    Can anyone offer hope? Success stories? I do know of a couple of women who are still here, multiple years post brain mets diagnosis - and I'm hanging on to those tooth and nail.

    I'm a fighter. My mom was too...she lived 15 years with stage 4 ovarian cancer. Just need a little boost today.

    Best to all of you.

    -

  • josgirl
    josgirl Member Posts: 61
    edited January 2018

    Azs4,

    In a similar boat. 6yr Old daughter and scared out of my mind. But life has returned to more or less normal and traffic is finally beginning to bug me again :) I was diagnosed with brain mets in sept 2016 and had surgery (2cm lesion) then Ibrance and femara. It’s scary entering the unknown but we must do it. I’m in western MA so I feel you’re close PM me and maybe we can arrange coffee - I love this site but find myself to be very isolated in person cancer wise.

    Josee

  • leftfootforward
    leftfootforward Member Posts: 1,396
    edited January 2018

    I had 4 kids all under 10 when diagnosed with liver and brain mets. Gamma knife in dec 2012 plus Chemotherapy and I am still here. No new brain mets.

    Hope that helps

  • incognitomom
    incognitomom Member Posts: 80
    edited January 2018

    azs40,

    I was diagnosed with 20+ brain mets about 3 weeks ago. Scared the crap out of me and had WBR which also scared the crap out of me. I had 10 radiations and it all happened so fast I couldn't process it. It has been the scariest part so far, but I came through it just fine with very little side effects. I have a 4 year old on the autism spectrum and just need to be at the top of my game. I think I'll be ok and I'm starting to be more optimistic. It is very scary though.

  • azs40
    azs40 Member Posts: 45
    edited January 2018

    Thanks ladies! Always appreciate hearing back from you.


  • Goodie16
    Goodie16 Member Posts: 297
    edited January 2018

    azcs40 - I'm sorry you find yourself here, but welcome. I was diagnosed with a solitary brain met almost 3 years ago. I had a cranitomy and gammaknife to the tumor bed. Three years later I'm NED in my head and below the neck. There is hope!

  • susaninsf
    susaninsf Member Posts: 1,099
    edited February 2018

    IncognitoMom,

    So glad your WBR treatments went relatively well. I don't know if your rad onc told you but WBR fatigue tends to become heavy about a month after treatment is over. I had a decent amount of energy during treatment even though I wasn't on steroids but a month out I was knocked out for most of the day. I think it was over within a week. Since you have a little one, just plan to have someone else around to help during that period.

    I'm almost four years out from my WBR and doing very well. Had a couple of tiny tumors come back in November but I had them zapped with Gamma Knife. So far, one is completely gone and I'm hoping that at my next scan the other will be gone too. The radiation can take a while to work. So if you don't see any dramatic changes at your next scan, don't worry.

    Hugs, Susan

  • Nina27
    Nina27 Member Posts: 20
    edited February 2018

    hi ladies, my name is Nina and I’m 33. First diagnosed in March 2016 since then cancer has spread to liver, bone, lungs and adrenal gland... we found out in November last year that I have my first brain met and a recent planning scan for stereotactic radiosurgery revealed multiple Mets but the largest only measuring 23mm x 19mm so not very big but again progression.

    I’m scared that the radiotherapy is a waste of time.

    Has anyone ever been given a prognosis? My oncologist won’t say anything about time.

    Thank you x

  • Bad_At_Usernames
    Bad_At_Usernames Member Posts: 241
    edited February 2018

    Hey there, in terms of long-term survival, I know one person who was treated for brain mets in 2005 and one treated in 2003. I know bunches more in the 5-10 years out range.

    Nina, I don’t know how docs handle it in RSA but in the US, they usually start gently bringing up end of life when they think you have six months or less. Are you in a big city? I’m a bit confused - they found the first brain met in November and they are just doing radiation planning niw

  • Nina27
    Nina27 Member Posts: 20
    edited February 2018

    no chemo as worked longer than 4 months and by 6 months the progression is significant.

    I had to raise about $10 000 for the Caris Molecular Intellegence Test to see if I could use immunotherapy or any other drug that would be effective in my genetic make up. These test results only came back around christmas then we had to motivate to our medically insurance for stereotactic radiotherapy but because it’s not a common procedure here In SA and expensive they denied it so took another couple of week to fight and change their minds.

    I feel like too much time has been wasted now

  • illimae
    illimae Member Posts: 5,739
    edited February 2018

    Nina, my docs won’t say how long I may have but brain mets are increasingly treatable. I had gamma knife to 5 small lesions in October, now 4 are completely gone and the 1 left is continuing to shrink. I’d say it’s worth it :)

  • mara51506
    mara51506 Member Posts: 6,512
    edited February 2018

    Nina, I had whole brain radiation in 2016. I guarantee that I would not be here without it. The treatment you are up for is definitely worth. I also agree that I do NOT want to be told how long left. I only want to know if it becomes time to get hospice. Our docs cant predict how long we have. Go by how you generally feel. Hope is a good thing to have.

  • wleeky1952
    wleeky1952 Member Posts: 60
    edited February 2018

    Nina I totally agree with Mara and illimae. How long I have is not something I have asked my MO and RO. I have worked for Hospice and Palliative Care for last 15 years and will know when I am ready for that next step. For now I completed 10 WBR in September. Just had MRI everything shrinking. Started back on Kadcyla so far so good. 4th great grandbaby due in April. I was really scared for my WBR but I made it thru it with the support on this wonderful site from the ladies who had experience.

    Wanda

  • susaninsf
    susaninsf Member Posts: 1,099
    edited February 2018

    Nina,

    As everyone else said, there are lots of long-term brain mets survivors but all the ones I have known have had brain radiation, WBR or Gamma Knife. It is terrible that your medical team waited so long, but I probably had brain mets for a long time before being diagnosed and my largest tumor was about the same size as yours plus over a dozen smaller tumors. WBR got rid of all of it. It's not too late

    I hope you do the radiation therapy. We are all here to help you if you want more information about the treatment.

    Hugs, Susan

  • mara51506
    mara51506 Member Posts: 6,512
    edited February 2018

    Wanda, congrats on the new great grandbaby. I am enjoying my great nephew who arrived in december.

  • Becs511
    Becs511 Member Posts: 118
    edited February 2018

    Hi All!

    Just wanted to share that I had my every 2 month brain MRI last week, which coincidentally was exactly the 2 year mark since my original brain mets diagnosis. I am very happy to report that all 8 mets are still stable and my neurologist feels that they are now just "shells". That the insides of the mets have no activity and the outsides are just growing and shrinking due to necrosis and treatment effect. I have also been seizure free for over a year now!

    As a note, I had SRS to all 8 mets, but they still progressed. I then tried Tykerb and still progression. The one thing that has been proven to work for me is Avastin. The only side effects I've had are minor bleeding issues and high blood pressure but mine is very low to begin with, so it balances out...

  • illimae
    illimae Member Posts: 5,739
    edited February 2018

    Great news, thanks for sharing the update!

  • Freakzilla
    Freakzilla Member Posts: 73
    edited February 2018

    Great news Becs!


    Are you on Kadcyla and Avastin now?

  • Becs511
    Becs511 Member Posts: 118
    edited February 2018

    Avastin, Xeloda and Herceptin

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