Brain Mets Sisters
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Mara, thank you so much. Your post comes at a helpful time. Got CT, Xray, and MRI last week, and it shows it's working but there are still words like "widespread" and "innumerable." I finished a month ago. They put me back on Decadron because there is still so much swelling. Then Thurs I had Gemzar, and that always makes me tired the following weekend. So I felt better yesterday then hit by a truck today, and it feels like being kicked back in the hole. Also, it was my birthday and people got me lots of chocolate because V-day but my hubby didn't get me anything and I'm pouting a little. Lol
So your words feel like a lifeline.
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Selkie, Glad to be of help.
I hope you at least enjoyed the chocolate, though your husband could have got you something too. I bought myself chocolate for V day as I am single and I already ate all of it. Hope you enjoyed your birthday, even without husband getting anything.
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Pam,
So on what basis did they diagnose you with brain mets on January 23rd? Do you have an eye tumor?
I'm not HER2+, but most people with brain mets are HER2+. There are many other conditions that cause double vision, like cataracts.
Let's hope that it was a premature diagnosis.
Hugs, Susan
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I have been given permission to post this photo.
The planets aligned and I was able to meet up with Susan today at treatment. It was nice to put a face to my friend and to see her in person. you all mean so much to me. Thank you for all of your support.
Best wishes to susan as she starts new treatment snd has a very long day today.,
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I agree, nice to put faces to the names I have been seeing since I joined BCO back in 2015. I frequented the brain mets thread as I was most fearful of spread to the brain, little did I know I already was Stage IV until the tumour grew rapidly in 2016. This group has changed, lost some members, some of us just keep going and defy our own odds. May treatment keep extending out timeframe with better and more effective treatment with good quality of life.
This is me with a boatload of makeup on and weirdly drawn eyebrows. Good lighting for the oncologists office though.
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Good to see your faces!
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Unfortunately I have to join you. Yesterday my mom found me unconcious by my desk and had to call the ambulance. When they ran scans on me, they found a 2.3cm lesion in my brain.
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dya- many hugs. This is a great group for support. Sorry you have to join us. There is lots of knowledge here. Ask away when you are ready and able. We are here for you. May they stabilize you and find a plan soon.
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Welcome dya, we’re here for support and any questions you might have.
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Dya, I am very sorry you are here as well. As stated by LFF above, we are all here for you for questions and supports as needed.
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Hello everyone. I just wanted to introduce myself and thank you all for sharing your stories. Reading them have given back life. I found out ten days ago that I now belong to this club (brain Mets) and it has been a nightmare since. My craniotomy is scheduled for tomorrow; I haven’t slept, the shock is real and the fear and mostly, I am mad. So upset that this can happen to anyone, that in 2020, there isn’t a cure for this this horrible disease and although I know, new drugs keep us alive, it’s just not enough. I believe these are valid feelings and I don’t want to sound ungrateful for medicine and everyone who works to keep us alive but it’s upsetting, no matter how I look at it. It’s unfair. I will be 30 years old next week and I have a 3 year old. I have so many plans for us. I want to be positive but the thought of death clouds my judgement. I hope to keep on reading more positive stories to keep my spirits high, so again, thank you all so much. Xx
P.s: tips for after the craniotomy would be appreciated. I’m nervous and scared.0 -
Dya, I'm sorry you find yourself here but please know there is a lot of support and knowledge among our members. Please feel free to ask away when you are ready.
Roro, I'm also sorry to see you join us. Please don't stress too much about the craniotomy. I found mine to be an easier recovery than from my mastectomy! I was in the hospital for 3 days and discharged home. I followed up in about a month with GammaKnife radiation to the tumor bed and have been NEAD since. This was in February and March of 2015, so I'm 5 years out. You are certainly entitled to your feelings and they are valid. The first few weeks after a brain met diagnosis are tough, but know that there are drugs, radiation, and surgery that work to give you back your life. Much love.
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Roro, I had a Craniotomy in January and healing from the procedure itself has been fairly easy. The incision site was achy for a few days but not bad. Now, I did have a secondary issue with a nerve that got irritated and resulted in swallowing difficulties but it is temporary and not a common complication. Best of luck to you 🙂
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I had a craniotomy in July 2016. I was lucky, no complications for me. Some nerve sensations, tooth sensitivity sensation, though my teeth were not sensitive. Little tinnitus and a cool scar. I had surgery on a Friday and was out of hospital Monday. Had to stay on a high dose of steroid as my brain was very swollen. I gained weight from those. I was in the grocery store shopping on the Monday. For me, there were no real complications.
Brain mets are scary sounding but treatments have improved so much since this thread even started. I would stick to posts within the last 2 to 3 years. I was told in 2016 that it was over for me and that I would not last much longer. Terrible thing for a doctor to say to a terrified patient. I am still here in 2020 and walking hours a day, enjoying life on my small scale. Be the stubborn patient in your head and take one day at a time. This is so new that it is overwhelming but take it one day at a time.
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Hi All, We are posting this on behalf of a researcher named Qing Chen at The Wistar Institute in Philadelphia (https://wistar.org) whose goal is to ultimately use research to create more effective therapies for breast cancer brain metastases.
She is currently applying for a DOD Hope Scholar Award. This award supports individuals early in their careers who have demonstrated significant potential to effect meaningful change in breast cancer. She is looking for 1 more "advocate mentor", someone passionate about this subject to serve as on her research project. The application deadline is March 26, 2020. Altogether she would to work with advocates on a 4-year plan on how to conduct more efficient and translational research.
If you are interested in working with her, or know someone else who may (e.g. a family member, friend, etc), please reach out to her: qichen@Wistar.org.
Thanks, and sending hugs to All
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By the way, we too love to put a face to the names, so LOVE your photos!!
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I am off for my brain scan. Will hopefully get results tomorrow when I meet with the clinical trial team.
For now hoping for two things: 1 I am stable
And 2 that my kids get through their first day of online learning as the school district is closed due to the virus. All school is being conducted online.
Big day.mp
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LFF, will be in your pocket wishing for stability and good luck to your kids as well.
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leftfoot, I’m jumping in your pocket too. Good luck!
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LFF,
Thinking of you and hope your scans go well!
Hugs, Susan
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I'm brand new as of today in the brain Mets group...TNBC...will have radiation consult later this week...I m scared to death....would love “a hand to hold
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stilts/ here for you. you are in the worst of it now. You have many options depending on size, number, and location.
gama knife, cyber knife, surgical resection, whoke brain radiation, chemotherapy agents.
It’s scary with no plan. It’s scary with a plan but less so.,
I am a 7 year brain Metavivor. There it s hope. Breath and know we are here for you and will answer your questions.Take care
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Stilts, lots of hands to hold and different radiation treatments too. I have had brain surgery, whole brain radiation and local radiation too. Been here 5 years and still stable, good quality of life.
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Dropped everything and got in with rad ONC this afternoon when they had last minute cancel. He wants to do whole brain radiation due to many small Mets x 14 treatments...starting tomorrow!
I greatly appreciate your support 🥰...more later0 -
Stilts, a couple of us have been through the wbr ourselves, if any questions come up, let us know.
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not sure how I feel.
Was told my brain scan wasn’t as god as they had hoped. I guess the tumors are back to the same size they were in January. There were no new spots.
so I could be stable or I could be progressing. They are waiting to hear back from the study bosses as to if I can remain in the study. the MO thinks I am stable and the size difference is due to RO and machine differences. I also tapered down to minimal steroids so it counn oh d be more swelling due to less medication.So I’m numb, disappointed and trying to reframe that stable would be wonderful. If I hadn’t had such remarkable results last time I would probably be estatic right now.
So going home feeling like I was sucker punched but knowing I will reframe it in a day or two. Will be great if in Friday I hear- you are still in the study and considered stable.,
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left foot...sending many positive thoughts your way for stability
First of 14 wbr for me today...did any of you take Memantine for cognitive changes with wbr
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I did not take Memantine for cognitive changes. After almost 4 years, I really don't notice a difference to where I was before . The only changes I went through after wbr was really not reading a lot or anything and some short term memory, mostly for where I would leave something. Those two things did go away for me a few months after wbr was over. If you are being offered the drug, certainly go ahead and take it if it makes you feel better.
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I just wanted to thank everyone for the words of encouragement prior to my surgery. I am 10 days post op. Everything is okay, I have a treatment plant already. I feel at peace. Can anyone share with me some side effects after the surgery? I have mentioned all of this to my neurosurgeon and he assured me it’s normal but I am concerned anyway. I am experiencing a little ringing on my ear as well as what feels like a headache on the opposite side of surgery, my arm feels tingling too, just a little. I think maybe I need to rest more?
Anyway, what an experience this has been. The first few days were so dark, but I am hopeful everything will be fine.
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Roro, there will be some odd sensations. I experienced tinnitus, sensitive teeth (had nothing to do with my teeth) and odd pain when I even lightly touched my head. This will happen for a bit. The nerves are knitting themselves together, so it is to be expected. I still get tinnitus occasionally, but it will subside. Unless you are dizzy, weak on one side or anything like that, most of this is normal. It is just unsettling. For the headache, I would take Tylenol if you can. They would probably not yet want you on ibuprofen due to bleed risk, check with doctor before taking. If the headache does not go away with painkillers or lasts longer than 2 weeks, definitely let doctors know.
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