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Brain Mets Sisters

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  • mara51506
    mara51506 Member Posts: 6,173
    edited November 2022
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    Probably a good idea, helps to relax. I found for myself the slow breathing and eyes closed quite relaxing. Our MRI machines have nothing to look at and the adults don't get music to listen to vs kids. Once I lie down, I am practically asleep anyway. You'll be relaxed and before you know it, it will be all over. One treatment may not give all the brain SE that many treatments can give. In your pocket.

  • illimae
    illimae Member Posts: 5,608
    edited November 2022
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    I’m ok with the procedure itself but take an Ativan every time the night before and morning of gamma knife to deal with the mask or head frame because that is the worst part for me.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2022
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    Thanks Mara. I have been feeling very very discouraged since this diagnosis..mainly bc with TNBC once it starts spreading like this (and also now spread to my lungs and more in liver than ever before) I realize I am running out of time...fast. I mean for the Triple + people on herceptin that have to deal with brain mets at least they know the herceptin is keeping the rest of the body with cancer at bay or stable... this for me ...well for us (my husband and I) was just a huge blow and what we feel is the beginning of the end. :(

  • susaninsf
    susaninsf Member Posts: 1,099
    edited November 2022
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    Nicole,

    I always close my eyes too because I'm worried about becoming claustrophobic. I'm surprised you will be in the radiation machine for 25 minutes. Maybe I'm mixing up my WBR treatments with Gammaknife treatments but I thought it was more like 5 minutes. Does anyone else remember?

    I'm having some kind of radiation to my two new brain mets hopefully this coming week because I need to get it done before starting the PY-159 trial. Once I'm on the trial, I can't do any radiation.

    As you know, I'm not HER2+ but I am ER+. and have run through all of my ER+ treatments as well as chemo so I'm in a similar place to TNBC people. Mainly looking at general solid tumor trials which tend to work best on TNBC.

    Hugs, Susan

  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2022
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    Susan I never had anything done to brain..but they decided to tackle both mets in 1 session so thats why its like 25 -30 min ... I think they said they break it down into more sessions when there are more than 2.... I know when I had the radiation (regular , not Cyber Knife) to my spine it was for 10 days and each session was like only 3 min in the machine..or maybe 5 min it was so fast.

  • anotherone
    anotherone Member Posts: 546
    edited November 2022
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    it is depending where and what they going to get .

    I just finished 5 sessions of CyberKnife , about 40 mins each. Nonside effects , have not taken anything for the sessions.

  • susaninsf
    susaninsf Member Posts: 1,099
    edited November 2022
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    This thread seems to be quite inactive but I hope some of you are still out there and doing well.

    I have two tiny new 3mm tumors near my cerebellum. In order to get on a trial, I have to get them zapped. I was surprised that I need to have the cage screwed into my skull again for Gammaknife. Is my hospital just way behind the times or is it because they have to be very precise with such small tumors and the proximity to my cerebellum?

    I'm dreading sitting there for hours with the cage screwed into my head and getting new scars in my forehead. I mean, if I had hair to cover them it would be ok but I have very little hair these days.

    Hugs, Susan

  • nicolerod
    nicolerod Member Posts: 2,877
    edited November 2022
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    Susan I am having cyber knife today and no screwing in of anything for 2 mets...just made a mask thats it...I go. in an hour.

  • moissy
    moissy Member Posts: 371
    edited November 2022
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    Susan -I had several small ones hit with SRS and only had the mask, not the Gamma screw protocol.

  • illimae
    illimae Member Posts: 5,608
    edited November 2022
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    Susan, my GK’s at MDA are done with that terrible face cage too. I absolutely hate it but have been assured that yes, it’s about precision. At least it should go quickly with just to 2 tiny spots, good luck.

  • mara51506
    mara51506 Member Posts: 6,173
    edited November 2022
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    Susan, I am sorry about the cage being used again but perhaps you can question why a mask cannot be used for two tiny mets. I have only had two mets at most but they were just zapped over 5 days using a mesh mask and to be precise, I had to have an MRI of the brain while fastened down in the mask plus the regular MRI stuff as well.

  • mara51506
    mara51506 Member Posts: 6,173
    edited January 2023
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    SusaninSF has passed away peacefully with her family by her side, just wanted to let other sisters know since Susan was a big part of this forum. My condolences to her family, friends and friends here as well. She made me feel better after I got my tumour and made me less fearful. Glad she is at peace.


  • waves2stars
    waves2stars Member Posts: 122
    edited February 2023
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    I haven't been active here in quite a while after a dx of stage 4 NSCLC. I just wanted to say that when we initially thought my brain met was from breast cancer, I found so much good information on this thread, and Susan, and really all of you, inspired hope in that I could still have some gas in the tank. Your collective experiences on craniotomies and brain radiation prepared me to have educated discussions with my care team. Wishing peace for Susan and her family, and love and thanks to all of you.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited February 2023
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    Just had brain scan this morning... prayers are welcomed.

  • kbl
    kbl Member Posts: 2,740
    edited February 2023
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    Sending prayers, NicoleRod, for good results.

  • Goodie16
    Goodie16 Member Posts: 297
    edited February 2023
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    Mara, I had no idea Susan had passed away. Thank-you for sharing. She always had so much insight to share with posters here. My prayers to her family and loved ones.

    Sending prayers for good results, NicoleRod.

  • AKJ
    AKJ Member Posts: 115
    edited February 2023
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    I have 30 tiny brain lesions that so far have not interfered with my life. I’m hoping for a good result from Verenzio, which I just started yesterday. The radiation oncologist said that I’m not a candidate for cyber knife or gamma knife. The only rads option is whole brain. Who here has had WBR? How were the side effects

  • mara51506
    mara51506 Member Posts: 6,173
    edited February 2023
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    I have had WBR. The side effects for me at the beginning were mostly fatigue, lack of appetite and not being able to follow plots of books, movies or TV. This lasted maybe 2 to 3 weeks and started subsiding once off the steroids and less depression. I tried to keep up calories with boost most of the time mixed with Carnation instant breakfast for the calories and protein. Food got better after two to 3 weaks. Hit an exhaustion 4 weeks after but recovery was quick, started eating more food with the carnation instant breakfast as well. I was able to start walking in the house and then outdoors. My cognition picked fairly quick after the WBR and some good rest. I did not experience pain but did have some nerve issues that were not related to the WBR but to an initial craniotomy to remove a 10 cm met so that stuff was going on at the same time as the WBR.

    Overall, if you are told you need WBR, the biggest thing to remember is that you should come out of it all the way you went in and bear in mind, some short term memory may be affected but that is easy to manage with reminders, post its etc. My short term has not been affected tp date.

  • AKJ
    AKJ Member Posts: 115
    edited February 2023
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    Mara, thanks for the input. I’m glad that WBR worked out for you. I’m terrified of it. But I’ll do it if I have to

  • nicolerod
    nicolerod Member Posts: 2,877
    edited February 2023
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    WBR can only be done 1 time right? So if you get numerous leisions again you cannot get treated correct?

  • mara51506
    mara51506 Member Posts: 6,173
    edited February 2023
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    No, WBR can be done twice. Having said that, if you had a smaller area of relapse, radiation of the location only would be done. I had my surgery and WBR. We expected relapse due to some of the original 10 cm met being wrapped around a blood vessel and not being able to be removed. I had radiation to the surgical site post WBR almost two years after the WBR. Nothing found since.


  • moderators
    moderators Posts: 8,085
    edited March 2023
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    Hi all, sharing some news here that you might be interested in. We hope this helps!

    Tukysa Plus Standard Care Improves Survival in People With HER2-Positive Brain Mets
    Feb 27, 2023

    Tukysa plus the standard of care improved survival in people diagnosed with metastatic, HER2-positive breast cancer that had spread to the brain. Read more...

  • ultimatenerd
    ultimatenerd Member Posts: 2
    edited April 2023
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    Hi everyone, just reaching out here to see if anyone can give some insight/experiences of their own.

    My dad has done 10 sessions of WBR, but the following week he has had more confusion/delirium and a ton of weakness in his legs and arms.

    The doctors here ordered an MRI and the results state that the some of the tumors in his brain has gotten slightly larger.

    Is this normal post WBR? Especially just a week out? I'm just worried for my dad as his condition just seems to be getting worse and worse...


    Thank you all in advance




  • illimae
    illimae Member Posts: 5,608
    edited April 2023
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    ultimatenerd, I haven’t had WBR but I have heard of something called “tumor flare” and definitely the possibility of swelling after radiation. I believe steroids are prescribed for this, perhaps he needs a higher dose. I’d call or message his team right away to figure it out.

  • ultimatenerd
    ultimatenerd Member Posts: 2
    edited April 2023
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    Hi illimae,

    Thank you for getting back to me so quickly!

    I was told that they will do a lumbar puncture to check if there are cancer cells there or not.

    But for now they have increased his steroids just a bit. (Currently on 10mg's a day DEX)

    Hoping that the lumbar puncture comes back negative.

    Thank you again!!


  • mara51506
    mara51506 Member Posts: 6,173
    edited April 2023
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    ultimatenerd, glad they are looking out for him with the lumbar puncture. Just to be clear, they get all the info, there are still drugs they can give to shrink the tumours that may still be growing. Brain swelling is definitely a culprit to consider, that was how my original brain met was found, seizures, blacking out, head pressure and weakness. Steroids will relieve symptoms if they are related to swelling. I am in your pocket sending support to you both and hope this gets looked after quickly so you can be given next steps.

  • corduroy mouse
    corduroy mouse Member Posts: 22
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    Hi,

    I hope this thread is still active or will be restimulated with this post. Just had 3rd TrueBeam (like CyberKnife) for recently diagnosed metastatic brain lesions (5, largest 1.7 cm). Initial diagnosis was right IPLC and ISLC back in April, right mastectomy 5/25/23. ER+, PR-, Her2- (but my HO is having blocks repulled and sent out for PD-L1 and other genetic testing since there was an additional metastatic lymph node at surgery which was not part of the original pathology.

    Long story (actually short story…hahaha), failed A/C chemo due to immune collapse about 2 weeks ago, and during that stay the brain mets were discovered. At least I know I'm not losing my mind. First 2 TrueBeam treatments were the oddest experience, and probably a result of medications as well as intracranial pressure. I would close my eyes, and had intense depersonalization, loss or reality, loss of body experience. I thought I might be dead, but I was really okay with that (at least at that time). It's hard to explain to famiily/friends since I can hardly fathom it myself.

    I do hope someone is still active on this board….it's really hard to find others who can relate to this situation. I try to keep a positive attitude and accept that this is something that just happens. I have lived pretty much the lowest risk life imaginable, but I was crap at taking care of myself. Self-advocacy, previously noted by a few people, seems to be the most useful off all tools in our own little tool boxes. This kind of CA is rare enough that many in the medical field have not first-hand experience in treating it. I'll keep my eyes and ears out (yes, those ridiculous elf ears that came when I lost my hair during chemo) and post if there is anything I can contribute, and until then, please let me know if anyone is still out there. Thanks!

  • AJ
    AJ Member Posts: 213
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    I have brain mets in addition to lung and liver mets. But I can’t get focused radiation because the mets are too tiny and diffuse. So far the Verzenio is keeping them in check. Sounds like a weird experience in the rads machine!

  • mara51506
    mara51506 Member Posts: 6,173
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    I have had both whole brain radiation 7 years ago and another focused beam of radiation as well. I will say, I would feel out of it and weird, but it went away after.

    I have only had a 10 cm met that was removed surgically, some was wrapped aroung a blood vessel so though it was radiated, there was the expectation of it returning to the surgical site post WBR. I am now several years beyond. Keep your mind day by day, keep moving if you can. Don't attribute every pain in your head as more mets. My head only hurt due to the skull pressure from a swollen brain. It is easy for me to say that cancer is not as much of a concern but I am very used to it now. Now I deal with fall etc but am learning ways to cope with that. One day at a time, we are here and if we are not, meet and ask questions in the living room as well, does not hurt to have more than one place with us brain mets sisters.

  • emac877
    emac877 Member Posts: 688
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    I am seeing some familiar faces here but wanted to introduce myself. I found out today that I have four spots in my brain that are likely mets. They are small, all under 0.9cm. It sounds like I am going to be scheduled for SRS which is something I don't yet understand. The spots are in the right and left cerebellum the left frontal gyrus and one spot that says left kidney on the report but I have never heard of the brain having a kidney so I am going to have to get clarification on that one.😲 I hope to hear from my MO or his PA tomorrow for more info. I'm just not even sure what to expect at this point.