I have just been diagnosed with meningeal mets to my brain and also a met in the muscle behind my eye all from ER+/PR+ HER2- breast cancer which has been bone only for two years. This seems to be very rare but I was wondering if anyone else is in the same position? My oncologist wants to proceed with Whole Brain Radiotherapy however I am really worried about cognitive issues as I have three young children and I want to survive more than anything in the world. I would appreciate any tips.
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BoneMetsAussie
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hi mbc sister. i am so sorry to hear. unfortunately i have no advice to give, as i am not familiar with brain mets or the Radiotherapy you speak of....so hoping someone on this board does and will reach out! i cannot imagine going through this mbc struggle with 3 very young children. my heart goes out to you💛. you have my empathy...just wish i had something concrete to offer.
my journey has been longer than i thought when first diagnosed....that's for sure. i thought i was going to die immediately.....oh little did i know about this type of cancer...haha! as for the positive attitude, if you have spare time....which i doubt with 3 little cubs.....look me up and read my initial post called 'new....well sort of'....i'm warning you though that it is long. too long...lol.
you are way too young to be on this journey. i'm serious when i say my heart is breaking for you. my daughters are grown. you are the one with the positive attitude! how are you feeling? do you have good support? xo
In January of ‘21, I had brain mets and an eye lesion too. I had gamma knife radiation that took care of the brain mets. Evidently my other therapy killed the eye lesion (piqray and fulvestrant) but I was prepared to have brachytherapy radiation for my eye too. Whole brain is to be avoided if more targeted therapy is possible.
Hi. I'm really sorry for your diagnosis. We too have two small children, we are fighting just like you. Susie (my wife) has Er- PR- HER2+/- breast cancer. That also spread to her brain but not meningeal. I read about it before her diagnosis as I was worried. Few things I can remember, leptomeningeal is difficult to diagnose, have you considered a second or even third opinion? I read it was worth while. If it does turn out to be correct, there was a chemo implant that could be implanted into the brain that treated the leptomeningeal disease, I'm really sorry, I can't remember the name but a quick Google would soon reveal it. I'll post this and go check again for you. We also didn't want whole brain and were offered SRS to the lesions in Susies brain. We've not had it yet as the current treatment protocol seems to have it under control, we have another scan next week.
I remember that you need treatment that crosses the blood brain barrier (not all do). We are on Capecitabine. We also take Fenbendazole and cannabis oil. All of these cross the blood brain barrier, for how long who knows!
I wish there was more I could do to help, I feel for you all.
Also, if you or anyone hasn't read Anne's book, GET IT NOW!! Is so useful, it's my first place to turn when new things happen, honestly.
Anne s book is "In insider's guide to metastatic breast cancer". You can get a PDF download.
All the best, you are in my positive conversations with the universe. XXX♥️
Hi. I am sorry for your progression. I am in this nobody wants to be group for mbc but I have other Mets. My cousin has brain Mets for 4 years She was recently offered the whole head radiation but refused. They treat her with chemo and spit radiation. She is feeling fine. On the other hand, I am a member of ErSO breast cancer activism group on Facebook. We all try to support a very promising compound ErSO that is supposed to be a cure. There is a woman there who got a whole head radiation and feels fine. No cognitive issues. Hope for cure. This is a horrible disease but many women live for many years.
I am sure that you must change your food immediately!Do a keto diet with minimum Carbohydrates and proteins.
No more sugar, no more bread, and rice. Only green leaf ץ
Green juices, wheatgrass, a little oily fish, wild salmon, sardines, forbidden fruits, not even tomatoes. it helps. People do not understand that cancer is a metabolic disease. Cancer loves sugar and starches. It is not clear why 21st-century people still do not make a connection between cancer and industrialized and bad food. There is a lot of material online about a healthy and healing diet. You will learn it and do it. In your situation, you have nothing to lose. It is true that it is difficult to give up delicious food. But if you want to live you have no choice. This is what I do for months and a half and it really helps in addition to medications to erase the tumors and especially to erase the terrible pains I had in the tumor areas.
I am sorry to hear that you have been diagnosed with leptomeningeal metastases (LM).
Patients with brain or leptomeningeal metastases are encouraged to visit this comprehensive website called MBC Brain Mets that contains information about treatments, finding clinical trials, and more: mbcbrainmets.org/
Below from my book, "The Insider's Guide to Metastatic Breast Cancer," which is also available as a complimentary .pdf, is an excerpt about preservation of cognition while undergoing WBR. For detailed information about treatments, contending with side effects, and more, visit insidersguidembc.com
I hope you respond well to your treatment!
Preservation of Memory with WBR: As mentioned in the Brain Metastasis chapter, there is a type of WBR that is a “hippocampus sparing procedure” which may help to preserve a degree of memory that might otherwise be lost as a result of the procedure. It can (and should) be combined with Memantine HCL, which is an Alzheimer’s drug used to help preserve cognitive function. In a study of 113 patients, at four months after undergoing the hippocampus sparing procedure, the decline in recall (as compared to baseline) was 7%, significantly better than the 30% cognitive decline in the historical control group that received WBR without the hippocampus sparing procedure. From: jco.ascopubs.org/content/ea... and vimeo.com/321234317/33959e4ee9
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