Brain Mets Sisters
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Hello all,
I apologize for intruding on your thread, but Linda's husband Jay asked me to post that our friend Lindalou passed away this morning. She wasn't in any pain but was having a hard time for a while now. She was a lovely friend to have here as she was always very encouraging. I was honoured to be considered one of her friends here on BCO
kind regards, dee
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thank you gir lettibb Ng g by us know. Another lost too soon.
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update: wbrt done and starting more chemo on Tuesday. Thank you for the kind words and everyone's stories,it helped to get through each day. I am definitely tired and laying in bed most days right now and eating as much as I can (a lot less but enough). There is both stability and shrinkage in the brain mets.
I hope everyone is doing well
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Mara,
Thanks so much for your inspirational posting! An important lesson I learned from doing Vipassana meditation is that our lives are always changing. Bad times won't go on forever but neither will good times. We should not cling to one or the other.
The other lesson that really resonated with me was to live in the present, don't regret the past or worry about the future.
Though I learned these lessons 15 years ago, they have really helped me most these last 6+ years since I became metastatic.
Hugs, Susan
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I too have appreciated the supportive and insightful comments here. To wrap up my week .. I finished my WBR yesterday. I am still pretty foggy-headed (like my head isn't quite attached to my body) and have fatigue, but I've been pleased to have some energy return over the past few days. Enjoying moments in life seems possible again. Last week it seemed unlikely. The future is so scary, so I am trying to keep myself in the present also. That's great advice.
I will be doing a 2 week wash now and then the plan is to start Olaparib - I have a somatic BRCA1 mutation according to Foundation One, so its worth a try. And, obviously hoping that the WBR keeps the brain stable for a good while.And I'm very sorry to hear of the passing of a sister.
Thanks again.
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Mara, thank you for sharing your story with me and for those beautiful hopeful words. It’s all so very scary. Some days are great but then some are horrible. It’s a constant rollercoaster. I thank God everyday I feel good and I have energy to work out 20 mins a day. Makes me feel good and I sleep better at night. I am truly grateful for modern medicine, even when my veins can’t take it anymore. I’m currently dealing with the whole “being sick (stage 4) and looking healthy”.. because truly, I look and I feel so healthy. It messes with my brain, the latest hit has been accepting that I can’t bear more children. I am just 30 years old. My biggest dream was to have a big family, so having to face that fact truly makes my heart break into a million pieces. I have been going to therapy but this is not something I have made my peace with yet, again the cancer rollercoaster. Thank you again for your kind words, I hope your qol keeps on being amazing and we keep on fighting this thing and lifting each other up.
Xx
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Wow Roro, only 30 dealing with all of this and trying to wrap your mind around no more children. That really is so much to deal with that even I never had to deal with. I was 43 at dx and did not have children myself.
As far as making peace with any of it, only time and the therapy you are getting will help in wrapping your mind around it. That will come for you but I am glad that you have therapy and hopefully family and friends are helping you out as well. Hugs to you, all my positive thoughts going your way.
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Hi everyone
I am new here after being diagnosed with brain mets 1 week ago by CT scan after severe head pain. I have yet to receive full MRI report.
I have been living with lung mets for 1 year, was just beginning to get my head around this and now this terrible blow. I just feel like this is the end. Is this normal? The statistics are terrible and i am feeling very depressed, what is the point of fighting against this if i know its going to win?
I have had two previous primary BC. First ER+ . Second HER+. Then local recurrence ER+. Lung mets 1 year later treated ER+ (to small to biopsy). I am trying to figure out if these brain mets are more likely to be ER+ or HER+.
Am i right in saying if they are correct and my mets are ER+ i am in a worse position?
Thank you so much for reading. Much love to you all
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kissingbooth, it is normal to feel like brain Mets are the end but it’s totally not! They are typically very treatable with radiation, I’ve personally had gamma knife SRS in 2017, 18, 19 and last week. Because I’m so closely monitored with MRI’s, they can be caught and treated while small before causing symptoms. I feel pretty good actually and I think if I can add more feel good years, then it’s worth it. Please let I’m use know what the treatment plan is and good luck.
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Kissingbooth, as Illmae says, there are many treatments out there, though we understand you do need to get your head around this.
You have found a fabulous, supportive group of people here, so keep sharing.
And Roro11, so young to be going through all this.
We're here for you All!
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illimae
Thank you so much. I have multiple mets with one in the ventricle im terrified
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Mods- thank you so much
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kissingbooth, I just had radiation to a spot on the floor of my 3rd ventricle, it was suspicious for leptomeningial disease but fortunately a recent spinal MRI ruled it out. I’m hoping for a good response and will know more next month. My point is that despite the scary stuff, anything is possible.
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illimae- thank you for your replies.
This is what i am terrified about. Do you know if its likely to become leptomeningeal disease if theres a tumour in the ventricle?
Thank you!!
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Kissingbooth, I certainly hope not but my report did state that the location was “suspicious for seeding”. A Spine MRI can help confirm but the way to know for sure is a lumbar puncture aka spinal tap. I had one 2 years ago, it was negative as was my spinal MRI last month for my 2nd lepto scare. That being said, there are still options for lepto mets including radiation and some chemo drugs that can get through the blood brain barrier (BBB) or administered directly through an Ommaya port.
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tucatinib (tukysa)is a new drug that gets through the BBB.
Keep that in your back pocket
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@illimae, thank you for responding to me. Its a very scary time 😔
I know theres treatments available, but all i can think about is the few years that i have 😔
How does everyone get through this?
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kissingbooth, it took me years to adjust to not just cancer that would have been treated and done, to finding out my BC spread to my brain. In 2016, I was convinced I was handed a death sentence and my doctors initially told me to make my final arrangements. I have done a craniotomy, whole brain radiation and a spot treatment in 2018. I am still feeling strong and push myself to be active. It tires me out because I still have a great deal of fatigue I need to fight through but once I have walked or something, I feel much better.
Time is the main thing that helps me deal with things. I have learned not to worry about the future, that will only make me stressed out and miserable. It also takes a long time for the mind to get there. Some people reach the point where they know they have cancer but that thought stays more on the back burner. Eventually it does that for a lot of people. The time it takes to get to that point will depend on your personality, if you connect with a social worker to talk about it or even family and friends. When you first find out it is devastating, eventually it will fade back as day to day life takes over and treatments and plans are in place. Brain treatments are better nowadays as well. Good luck.
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It is with a saddened and humble heart, that I am posting the passing of my beautiful wife Shelley Ann Brown on Tuesday July 14, 2020. Shelley fought her way through this battle with metastatic breast cancer for over two years. Her true grit attitude and her unwavering faith in Jesus allowed her to bare knuckle brawl with her cancer. She always said, “Cancer has F**ked with the wrong girl!” Shelley was diagnosed in March of 2018, and never ever let cancer define her.
I backed out of posting on this site when Shelley’s health started to decline. I had received so much advice from all of you on here, and you all helped us tremendously! I am forever grateful for you to allow Shelley and I to be a part of your journey as you were part of ours!
We had been and I will always stay vigilant, praying for everyone who is fighting the good fight! Through Shelley’s life and her death, her family and I are dedicated to continue on with our fight to find a cure for the insidious and devastating disease.
I want to thank you all for your compassion and understanding, your support and soft words of wisdom. Nothing I can say will amount to the gratitude I have for you all!
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Thank you Scott, may Shelley Rest In Peace.
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You are in my thoughts. Thank you for sharing.
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((((((Scott1975)))))) Our hearts pour out to you and all who loved her. Our sincerest sympathies from BCO.
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Scott, I am so very sorry to hear about your wifes passing. My thoughts are with you and your family at this time.
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Hello everyone
This is my first time making a post. I'm writing on behalf of my mom who was pronounced at the age of 44 with stage 4 breast cancer de novo July 2019. She is HER2+ and was diagnosed with Mets to the brain and one lung. She has received gamma knife therapy and although it did work the tumors came back. She was then put on another chemotherapy which did nothing to help and caused her brain tumors to grow and make her sick. She then decided to get whole-brain radiation which cleared her of all her tumors. Everything was fine recently until She told me that a new tumor has grown again. The tumors in her breast and lung have neither grown nor shrunk so I can't tell if that's a good or a bad thing.
Her doctor is now referring her to a specialist and changing her from herceptin to a new treatment. This will be her fourth chemo change in a year is this normal? She hasn't met with the specialist yet but she did mention that her doctor might put a port in her head to deliver the chemo to her brain.
The name of the new treatment she is starting is called Tukysa has anybody tried it and has it worked well?
Also, how do you guys cope? When I tried to talk to her about it she kind of seemed standoffish and like she didn't want to talk about it with me. I think it's because she feels I'm to young. Recently my mom did tell me though that she felt like the doctors don't want to tell her chemotherapy isn't working because they keep changing it. It feels like she is getting a little pessimistictic about things and I'm also having a hard time dealing with it also.
Sorry if this is a lot. Thanks for reading.
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Ironic, cancer in the brain can behave and respond to treatment differently than in the body. My body has been pretty stable for a few years but something pops up in my brain annually, just happens that way sometimes.
For Tukysa, my doc was involved in the trials and is very excited about it, this will probably be my next treatment too.
For coping, it’s hard, especially in the beginning and when the future seems so uncertain, please don’t take it too personally. We get stressed out and sometimes just want to talk about things other than cancer or nothing at all.
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Hi Ironic, and welcome to Breastcancer.org,
We're so sorry to hear about your mom's diagnosis, but we're really glad you've found us. We're all here for both of you!
As illimae shared, every treatment works different for everyone -- what works for some, might not work for others. And, sometimes it's a little trial-and-error to get the drug right that works. The good thing is there are lots of targeted therapies that your mom's doctors can try in order to keep the cancer at bay.
Tukysa is a fairly new treatment that has been recently approved, and it does show promise. You can read all about it on the main Breastcancer.org site's page on Tukysa. There's also a helpful Research News article on the topic: Adding Tukysa to Standard Treatment Reduces Brain Lesion Growth Risk in HER2-Positive Metastatic Breast Cancer
And, for more information on other treatments, visit the Targeted Therapy section.
We hope this helps give you some encouragement. And we're thinking of your and your mom and hoping for something to work soon!
--The Mods
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I am in Tuksyla currently for brain Mets. Nothing else stopped them. You can PM me if you’d like.
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Thank you guys for responding. I'll make sure to pass it on.
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Hi Brain Mets Sisters. I am not new to MBC but I am new to brain mets. It certainly is terrifying and takes this whole thing to a new level. Had surgery (craniotomy) in February. I am doing ok and am back at work. I would welcome hearing from others who had major surgery and are trying to get back to a stable life. I am now on kadcyla, which seems to be working well. Is this group active?
Thank you
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Yup, we’re active here. I had a craniotomy in January. Recovery from the procedure itself was fine but a complication of my surgery was temporary nerve damage to my vocal cords, which have resulted in difficulty swallowing/speaking and the malnutrition, coughing and choking that can with it. I’m slowly improving but doing well overall.
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