Brain Mets Sisters
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MyMiracle, I am fairly confident it is not cancerous too although I need to keep a small part of my mind open to the possibility so I don't get blindsided either. I am also encouraged that in the 5 years since the met was first found, nothing has appeared anywhere else in my brain. I have also never had mets anywhere else in my body. So I am lucky, I have the most aggressive breast cancer but due to that fact, it responded exceptionally well and still does to chemo, Herceptin and radiation. May it continue as long as possible.
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Mara, Illimae, are also my inspiration, and MyMiracle you too, your post gives me such hope. Hopefully so sorry for all you’re going through I hope it gets better. I am almost 6 months out from WBR, back at work, using my noggin, and try to walk a mile a day. Serious fatigue only pops up 2 or 3 days a month now and appetite is still improving. I pray this cancer can just stand back or better yet just go away for as long as possible. I pray for all of us, for new effective drugs, and a cure. I’ve been taking a break from social media including BCO, as DH’s BIL just passed away yesterday from Covid after a long fight so it’s been very sad to watch the news lately. Just popping in to see what’s going on.
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kikomoon, I’m sorry to hear about your BIL, sending you good vibes.
Nothing new here. Scans later this month but feeling calm about it.
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Kikomoon, I am sorry about your BIL, covid is a vicious beast for sure and I can barely get through that section of the news where I am from due to the 4th wave, anti vaxxers, anti maskers etc. I listen enough to know rules required to shop etc and that is it.
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LFF,
Thanks for sharing the pics of the family! Gave me a smile on my face on a day when I have been feeling unusually down.
Hugs, Susan
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I had a question, do any of your anxiety go up n u feel like calling ambulance. I’ve been this way lately. Thinking cuz I’m just so scared of my dis
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It depends on the symptoms. If you are extra weak or have new symptoms you did not have before, then yes, an ambulance to be seen at the hospital would make sense.
Are you having any new symptoms you did not or is this feeling like high anxiety, panicky lack of sleep or any of that?
If it does feel more like anxiety and less physical issues, a social worker or online support or doctor may be more in order.
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HopFull2,
I was experiencing over the top anxiety and couldn't find any therapist to talk to. Left a bunch of messages and no one called me back after two weeks! My Palliative Care doctor suggested a light 2.5 mg dose of Olanzapine (aka Zyprexa) at bedtime to help me sleep and reduce my anxiety and it has worked well for me though some days it helps but doesn't get rid of my anxiety. I finally found someone for talk therapy. It is a non-profit that uses grad student interns and billing is on a sliding scale. They called me back right away and found me someone to talk to in a couple of days. Onco Psycho therapy at UCSF has a two-month waiting list.
I know how hard it is to deal with that kind of anxiety and feel like there is nowhere to turn. I hope you find help soon.
Hugs, Susan
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Hi ladies. I just want to share the passing of my mom last Aug. 8. She got severe covid pneumonia as she was having her WBR. It still feels surreal and the pain just gets heavier each day. She already completed 5 rounds of WBR and was handling the side effects so well. She even had her clear vision back, she finally didn't feel any headache too and was finally able to walk without stumbling. She's been battling cancer for a year and a half so bravely. From her chemo, mastectomy and radiation, she was a fighter. In fact, she was even more radiant and blooming as ever. She made it look like all the treatments were so easy. There was so much hope and light but covid took it all. I am so heart broken. Our whole family is.
My heart feels like it's been ripped out as i was reading the threads again today. This site gives me so much hope from the beginning of her diagnosis, hoping and praying that i could happily post on the 5, 10, or 15 year success stories thread. I still don't understand why this happened and how long will i ever accept my mom's fate.
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fightingmama, im so sorry, wishing you peace in such a difficult time.
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Fightingmama, so sorry as well to hear about the passing of your mother. My thoughts going out to you and your whole family. Cancer is one thing to deal with but to add Covid to the mix was just awful luck. Again, so sorry for you and your family.
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Fightingmama, I'm so sorry about your mom. It's all hard enough without Covid. I'm glad you remember her being radiant, I hope comfort and peace comes to you family soon.
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Last Monday I had the standard blood work. MO called and said Bilirubin was too high, so had to stop Tukysa
I asked her if stress could be a factor, as I got sucked into a deadline at work (that won't happen again) and she said...."maybe". She's humoring me and letting me test again tomorrow. I've upped the fiber, fruits/veg, water, hoping it comes down and I can resume meds...0 -
illimae Thank you so much for much for telling me about this thread! And I know this sounds morbid but we can hopefully say these things these here, I am SOOOOOOOO thrilled to see you still interacting on here and still making life work. You are and have been an inspiration to me, so thank you for that so much. I know it hasn't been an easy road at all.
I have brain mets in my dural lining. So now MBC --> is being called LMD. Oh sigh, oh joy, oh boy.
I have had 10 rounds of WBR that ended last week and started Carbo/Abraxane this week. So far so good with the chemo. I am surprised!! Taking my meds though to keep any funky side effects at bay. All my hair shot out on day 11 or 12. So of course I can't imagine or help wondering what that is like inside my brain.
Currently, we are treating the brain with rads and the body with chemo and praying for the best. I have to have my lung drained twice a week, it is relieving actually to get all that fluid out of my pleural lung space as weird as it all is.
My MO told me to stop working. To not be alone for long periods of time (so I am currently staying with my parents) and some autonomy is being taken away. I am trying to accept this part which is hard. I miss my apartment and my bed!!!
Anyone else go through some lose of your independence because of this disease? He is worried that some sort of neurological symptoms may arise and I will be alone needing help, is what I believe he is saying. my mom and I are considering getting apple watches.
Love ,
Philly
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Philly, I so sorry you had to join us here but welcome. I did not have lasting neurological issues myself, just exhaustion. I was more forgetful for a couple of weeks after WBR as well but that resolved by itself.
I live alone myself and have a wellness call Mon to Fri. If I did not answer, older DB would be called.
Good idea on the watches. One thing I will add is that neurological issues usually present before WBR. An exception could be disease progression. Keep an eye out, walk if you can, even in the house on the spot and that helps to clear some of the cobwebs or with someone else for the first few weeks.
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Philly, not morbid at all. Many, like Mara, recover well after WBR, although, I hear it can be tough and take some time. Good vibes coming your way!
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Hi Philly,
I lost some independence after WBR when the RO said don’t drive anymore. He said work if I want (after I took short term disability). People check my work though, and I don’t have my own projects anymore. Less stress.
My bilirubin numbers went back down to an acceptable level so back on Tukysa today! 🥳
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Well, my WBR miracle didn't last long. After a clear scan 8 weeks ago, I found out on Friday the latest brain scan shows 'multiple new lesions.' I'll be finding out more from my oncologist tomorrow, like hopefully size and number. I'm asymptomatic.
Obviously I'm terrified, and especially worried that they won't do radiation again if there's too many. I know you can have Cyber and Gamma after WBR, but only on a certain number of mets. My big fear is they will say there are too many, and that means the gig is up, I guess. Hospice time.
I'm TNBC, and just wish there were decent systemic treatments for brain mets like for Her2! Has anyone heard of a non-Her2 person controlling brain mets systemically? Cape is meant to pass the BBB maybe, and Trodelvy also maybe - but not as assuredly as something like lapatinib. If anyone has heard of new research on treatment of brain mets let me know!
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Phet, I’m sorry about the news spots. Gamma knife is usually limited to 5 or less but I’ve heard of others who’ve had as many as 17 spots treated. Also, I don’t know much about TN but I recall immunotherapy having some positive results and yes, cape does cross, I’m currently on it and find it pretty tolerable after a tough start with side effects. I wish you well and hope for several options.
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Dear Phet,
I'm sorry to hear about this. I wanted to point you in the direction of a very inspirational lady called Kris Hellenga, who has triple negative breast cancer (since 2009) and has been having treatment ever since. She set up a charity called Coppfeel, to educate younger women to the fact that they can get breast cancer and what signs to look out for. She was told she was too young when she went to the doctor with symptoms. By the time she was diagnosed, it was already metastatic. She has been living with metastatic breast cancer from the age of 23 (since 2009). She's still with us and has been having treatment on and off. THis is in the UK. I wonder if this might help you at all. Big hugs.
RebzAmy
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Phet, I am sorry you had more lesions show up, that is scary since you have already had WBR. There have been people on this thread who have had a lot of brain mets done at the same time, there is also WBR which could also be done again though that is a less desirable way to go. If they are big enough or clustered in the same area, that area of the brain could be targeted. There is also surgery depending on location and then radiating the surgical area. Xeloda and possible immunotherapy options as well to ask about. Don't put yourself in hospice mode yet unless you are told all possible options have been exhausted and even then, go for a second opinion.
My RO as much as told me that if my mets come back, she would have no problem radiating the spots themselves of ordering another craniotomy in my case. The area has been radiated twice but she has observed a lot of healing in the area too which led her to tell me about possible rads again.
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Dear Phet, I know a woman here in Lithuania who got gamma-knife to ~15 small brain lesions, then she progressed with ~15 more and got it again, and now she has ~40, and will get it again for these. When I talked to her, I got an impression that it procedure possibility depends on size of lesions and... regretfully - planning efforts. It is just an astonishing amount of work to plan to treat many mets and radio-surgeons-planners have to be very dedicated... Main point is - everything is possible. Also Nalie Agustin, a known blogger, has many brain lesions treated twice with cyber-knife. She's in Canada. Saulius
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thank you dear friends. I am very very willing to stay ass optimistic and hopeful and you have managed Toto as I lay here in the infusion center getting 2 untold of blood transfusions.
i have some sort if pneumonia in my lungs which i could feel and knew something was off and finally we realized what it is. I am so grateful that the lungs are a way of a tell-tale sign for me. Although I am so off balance too their going give me a walker 😱 here I am 44 years old with a walker in the middle of tRNA city. This is what we do though to keep going and get through the rough patches, right?Phet: i m so sorry too hear your news. It must be both devastating and just defeating ti get. It would knock the emotional sails right. I also agree wjth, if you are able, to follow this women Nalie Augestin on eithe Instagram or wherever so posts. She is am inspiration to us all. Somehow showing us the ugly bits with lots of positive energy behind it all but not in obnoxious way. Sending you strength and love each day flower
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Philly, I am sorry you are having to deal with pneumonia, may that clear up for you as soon as possible. I can empathize with how weird it may be having a walker at your age but would rather have that than imagine losing my balance. You are right, we do go through rough patches at different times for sure but hopefully come out on the other side. In your pocket for everything.
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hello all, diagnosed with multiple small brain Mets this week. Had just started on trodelvy Tuesday due to increased liver Mets, but got a brain scan Tuesday afternoon due to headaches and dizziness, so now I’m paused on trodelvy until my 15 WBR sessions are completed. Lots to process this week. Can anyone tell me what they’ve experienced on wbr? Should I extra be down for the count during this? Curious if dizziness got worse during them resolved after? I’d love for that to be mitigated. Thanks In advance for any info! Feels like a lonely place to be and hate to put my husband and10 &13 yr olds through this too.
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If you did not have dizziness before brain mets presented themselves, it should end after they are radiated. I am sorry to hear you are joining us.
I had 10 sessions of WBR, after it was done, I experienced a lot of fatigue and lack of appetite mostly. Once my appetite started coming back and I started walking more, recovery came back quickly after three to four weeks. You may experience some issue with things like following TV or books as well but that also went away for me. The radiation also works on the brain weeks and months so it can help allow more of the chemo drugs being given into the brain for a while.
I am sorry you are joining us here, keep us posted on your progress if you are able and we will help wherever we could.
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thank you Mara. Means so much to hear from you. This is so bizarre. I did have dizziness b4 rads, I’m hopeful they will subside and I hope to get back to moving more easily around my home, but don’t know how high to get hopes up. Having a hard time getting around for.
Phet, as a fellow TNBC’r, thinking of you too.
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hello, just passing on the msg that AmyQ who posted on this thread, is moving to hospice care. Please keep her in your thoughts.
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also want to share this review from sep 2021 Nature on brain mets tx & clinical trials
https://www.nature.com/articles/s41523-021-00326-5
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Thanks Moth, got the message from Micmel's thread about AmyQ, thank you for posting here, that is kind for all here who know her. My sympathies to all of her family and friends out there and here as well.
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