Hello. I hope this post finds everyone well. So I just had an MRI yesterday that found innumerable small brain Mets. In retrospect I probably had a few symptoms but none that really slowed me down. I am 57 years old and have been battling MBC for 2 years. I go to Dana Farber. Currently I am on Trodelvy which has stabilized all the other Mets. I am going to have to start whole brain radiation next week. I have a few questions.
1. Anyone have good results with this?
2anything I can do to help protect my healthy brain cells?
3. I need some hope. ❤️. Thank you
Carla
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Ticket123
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I’m on Trodelvy too and right today they found two brain Mets. I had some symptoms but they came with Covid this month. Of course I’m worried too. Tuesday I’ll see my oncologist and we’ll see.. In the meantime what can I say.. we’re not alone
Carla, I haven’t got brain Mets (Yet) and I’m not on Trodolvy. But I’m going through having moved to second line of treatment and I’m starting to get worried as I’m only into my second week and already my side effect are frightening me.
But I do have multiple Mets to skull. So I’m just trying to work out when you and Silver126 say you had symptoms….
Would you mind telling us what the symptoms were? I am constantly trying to get a grip of this whole journey. And brain Mets worry me too.
Hi there. So I’m not sure what is a symptom of brain Mets and what is from chemo. I have had a lot of nausea which can be attributed to either. I think my eye sight has changed which again can be attributed to either. I find it a bit hard to concentrate but I’m anxious. Who knows. The radiologist doesn’t seem to think I have alot of symptoms. I’m still figuring all this out so I don’t know alot. Hopefully someone here does!!!
My right hand is weak and my feet too. I feel weak and my movements have become slower, I would sleep all day. That’s why we thought it was related to Covid post symptoms.
I have not experienced brain mets however there is a pretty active thread on the breast cancer.org stage IV discussion groups . Most people have some kind of targeted radiation and seem to do well , and do well for many years . A few have had the radiation more than once.
It should be easy to find but let me know if you can't and I can try to send a link . It will give you hope and confidence that brain mets can be successfully treated . Hang in there, I can imagine it's scary to have this new situation pop up .
I just posted the link - like this forum you will need to create an acct to post questions . Hope this helps ! Quite a few of these women have had WBR .
I listen to presentations from Dana-Farber on their MBC research and I think you must be in very good hands. There is a little presentation by Dr Lin at this link, which I hope brings you some hope and confidence.
Hi Ticket 123, You could not be in better hands at Dana Farber. One of the top researchers in Breast Cancer Brain Metastases is at Dana Farber. Between your oncologist, the Tumor Board and the researchers at Dana Farber you will receive the most scientifically advanced care available. Hopefully others with direct experience of treatment for brain metastases will be able to share their success stories with you. It always helps to hear about good outcomes. Praying for a good outcome for you.
Just wanted you to know that I am sending hugs and prayers that this treatment will be very successful in eliminating your brain mets. I agree with others on here that there are threads on this site from others who have gone through this. Best wishes.
I am not very tech savvy either. I think if you go to the search bar on top of the site you can put in radiation for brain mets or something like that and see what people have posted. Best wishes.
I am here for you too. We just do not know what is around the corner. I have been waiting for a scan myself and it is crazy we have to wait so long. Well, my doc said ok, and then went to the san ant coference and I had a resident that denied my doc said we would schedule it. I have issues with balance, headaches, numbness on my skull and see odd colored spots. Have lesions on skull already. Many others too on this site have had success with gammaknife and I hope it is successful for you to. They have then stated they have not had it occur again. God willing. My prayers and hugs to you during this holiday season. Blessings
Hear you loud and clear. I am 58 and have been using glasses for computer use and reading for at least 4 years now. Not prescription, just reading glasses. Lately though, blurred vision happens too.
I'm so sorry--I've had to face brain mets twice now and I was so scared. But my HMO (Kaiser) has cyber surgery machines that can send multiple low dose beams of radiation extremely accurately to meet up inside each one and fry it without damaging surrounding brain tissue.
And the 2nd ones were caught extremely early. Not long afterward, I was put on Enhertu which reduced them significantly and no further treatment has been necessary.
Is your oncologist open to either of these treatments? Also, there may be others, but I've only experienced the 2 above. Hopefully, lots of other survivors will post here. I for one want to have lots of information for future reference. I'm sure mine will be back and the wonderful Enhertu is off the table due to a serious side-effect. I pray that there's a solution to yours that you can tolerate and that you will thrive after treatment. I have and I'm 74, so hang in there!
Has Gamma radiotherapy been ruled out?If not, please ask without delay if you can have Gamma radiotherapy. I've had this twice. The last time 3 mets were treated. It is very targeted.
If you can't then ask if they can spare your cognitive function and memory parts of the brain. I have had this type of treatment. It can be done depending on where the mets are.
I trust others on here will have other advice to help you.
hi Carla, I’m so sorry to hear that you developed brain Mets. It’s very scary. I had no symptoms, but during my spine MRI the left cerebellum met was identified by accident. I had a targeted radiation and now having brain MRI every 6mo.
In regards to the vision changes it’s very important to have a comprehensive eye exam (including all devices) at least once a year. Let your ophtalmologist know what is your primary ds is.
I saw that Helen already sent along the link to Dr. Nancy Lin, especially since you are already being treated at Dana Farber. Many people on this site have seen Dr. Lin present at the various conferences as she is one of the true leaders in the broad field of MBC, and her specialty happens to be mets to the brain. While my wife has not had to deal with that (yet…), Dr Lin has been our onc for nearly seven years (and seven different treatment regimens so far) since my wife’s de novo dx and she is just the best—the epitome of a doc who treats the “whole patient”, even with such specialized expertise. It seems like Dr Lin gets involved in reviewing brain-related cases at DF as a normal process but I wanted to encourage you to actually speak with her if you have the chance. I am quite certain it will be worth your time and hers!
On a different note, I agree with other responders who have shared that there are many positive threads on this site from patients who are dealing with brain mets. I can only imagine how scary these first steps on this new path must be…but it also seems like there are a number of very specific treatment options available, depending on the situation. I hope that you will be able to learn more in the near future that will help you on this journey. Wishing you the very best…
Found out I had 2 mets in my brain around 5 weeks ago…. Zero symptoms re balance the only symptom really was headache usually in the morning but nothing major. I was carrying on with my day as usual - even driving! So shock horror was an understatement!
Treatment was Gama knife, on the day following MRI , 3 lesions were found and treated. Thanks to wonderful people on here, I knew what to expect and made a difficult situation easier to cope with. One lesion was 3cm.. any bigger no Gama as there’s a cut off point. They started mentioning operations- I think I had an out of body experience at that point! Thank god the Dr treated all 3…2hrs in the machine, silently dancing and singing to the radio with my eyes shut tight working on my breathing. I guess innumerable Mets has dictated your treatment plan - that’s a good thing.. it all needs to go!
I’m now waiting for a 6 week scan to know what’s what in January- either happy or crappy NY! Good luck with your treatment- I know how your feeling (not exactly, but perhaps similar emotions) as soon as brain were mentioned… well u know how that is😔 wishing you well x
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