Brain Mets Sisters
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Lita my thoughts go with you. I really hope it turns out to be a more benign explanation. I know that may not be but we need hope no matter what.
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Dear ones...it's worse than i ever expected. Going on hospice.
Details to come, im just too stunned now..
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Oh Lita, wrapping my virtual arms around you and your family.
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Lita- you are in my thoughts.
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The end is near…
Dear friends, it is with the utmost sadness that I write this. I went for my brain MRI today, and I received the results a couple of hours later. It's way worse than I could have ever imagined. The dr is amazed that I'm still standing…I have MORE than 20 brain tumors and I also have meningeal activity in the lining of the brain, which is very hard to treat. I have elected not to have "whole brain radiation" because it would turn me into a zombie/vegetable (given the LARGE amount of tumors I have), and I would no longer be me…just a body lying in a bed, waiting to die. I have elected "hospice care" and will be signing up for it on Tuesday, after the holiday. In the meantime, I will try to finish my third novel in the Bullmina Bulldog trilogy. The dr says I have only weeks, maybe a couple of months left. I am losing vision in my left eye, and the headaches and dizziness are considerably worse. I have been given a Rx for steroids to help with some of the pain and brain swelling. If you wish to come and see me b4 I start losing cognitive function, I suggest you do it now. Keep in mind, I am very fatigued and can only handle short visits.
Blessings to you all, Lita
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Forgot to add that the "lesions" are beyond the parameters for cyber knife or gamma knife. I still might consult a neurological oncologist, just for a 2nd opinion. But MO says it doesn't look promising, considering all the "other" progression I'm having in the bones, pancreas, other organs, abdominal wall, etc.
We all have to face the inevitable sooner or later. I'm just pissed that it ended up being "sooner."
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Lita, my thoughts are with you and your family. I am sorry this is facing you sooner. You are one helluva woman from all the posts I have seen across the different threads and been as feisty as they come. I totally respect not wanting to go through WBR at this point. Hope they give you some steroids to alleviate your more immediate symptoms and that your transition is a peaceful one.
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Mara and you dear ladies....
I'm not afraid of death....just the actual DYING part, and the not knowing how much function is will still have and for HOW long.
I didn't really start having the bad headaches until about 3 wks ago. Of course the eye problems started in late June. The ear whooshing only started about 2 wks ago
My MO is off until Tuesday, but I intend to TRY and get a consult with an actual neuro-oncologist. My MO is just a general oncologist.
I want to hear what a real "brain" person has to say b4 I literally sign up for hospice.
Yes, I'm still pretty cognizant, but I notice it's getting harder to type. Every time I stand up now, I get really dizzy and feel like I'm going to pass out. Keeping the walker and cane close at hand.
Thank you for all the love. I will try to write when I can.
I will possibly set up another thread in the STAGE IV only forum if I can.
Getting really dizzy now, just from sitting!
Very, very scary!
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Lita, how long have you been on the steroids? These can significantly decrease any brain swelling symptoms. I had the whooshing myself and by god it is annoying for sure. Once the swelling is brought down, it can really help the other symptoms. It's like night and day. I do recommend speaking to a neuro onc to get a better picture on options and what they think given the other mets in your body. There are people here who do have and have had more than 20 mets and gone on to recover a long while. I think two oncs are better than one for body and brain all things considered.
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Thanks, mara, that's precisely what I think.
My brother said if the biggest ones are close to the surface (dura), why not try surgery?
Nevertheless, I'm prepared for hospice if there's nothing else to be done. Heck, they haven't even convened a tumor board to review this. I'm just going by one associate onc's opinion for now.
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My tumour was in the dural layer, not deep down. I only had one but most of it was removed by surgery. I did go the WBR route BUT I was not dealing with any other mets. To this day, I have only had the one met and nothing else.
See what the neuro says first and what your neck down mets are doing. You have more considerations than I did. I hope the two oncs working in concert can come up with a better plan. Brain mets are not necessarily the end and often, anybody with body and brain mets die from complications from the mets in their body. It is just so scary when it lands in your brain. If you fear WBR so much, push as hard as you can for gamma ray that just targets the tumour. You probably have more options in the US than I did here in Canada. I am at a great cancer centre, but we cannot just say do this or do that. Good luck.
All being said, once the steroids kick in, your other symptoms should alleviate.
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I'm a little scared to take such a high dose of steroids, so for today, I just took 4 mg, and I'll take a dropper of cbd oil this evening so I can sleep. I DID NOT SLEEP hardly at all last night, and you need to get some sleep with cancer.
I still vacilate between feeling totally freaked out and trying to accept this.
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Chemo..tumor brain. Fogot to say I'm on dexamethasone (decadron).
Anyone have GOOD, POSITIVE stories to share re this drug?
Everything Ive read so far says it's a nightmare, makes you gain weight, gives you eye problems, joint problems, rage, and of course you can't sleep on top of it.
I need some inspiration to know I'm not taking this crap all in vain. Don't know when I'll get 2nd opinion.
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Dex is what I was on as well. I did experience increased appetite, water weight gain as well. They will relieve your brain swelling so I would take thedosage prescribed. I did have some trouble sleeping but was able to rest 2 to 3 hours at a time. It was able to relieve my own brain symptoms as well. To burn some of the extra energy, I did a lot of walking to work it off.
Once the brain swelling symptoms are relieved, it will make it easier to wait for meetings etc. Also ask for ranitidine so they don't cause stomach pain.
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Kandy started a thread for Lita so she won't have too many threads to try to keep upmwith.
https://community.breastcancer.org/forum/8/topics/...
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I will keep to this one if anything comes regarding brain met questions. I will also check the other thread too.
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Thanks, Mara. I'm getting a second opinion RE: brain rads. I'm not ready to "throw up the white flag" yet. I'm not a quitter....but we'll see what Dr. Ben has to say.
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Lita so so sorry you got this horrific news. Yep, you kinda knew it, that's for sure. Def 2nd opinion. Listen, Dani has more than 30 tumors, but not all of them are in horrible or sensitive places, so maybe that's what Mara meant that people could have a lot of tumors and still do well. It's probably most important the leptomeningeal influence, how much of it, and even that could be treated sometimes. And also as mentioned here, maybe some Gamma knifes tweak here and there, why not? It might help you with vision etc... It really also depends exactly where are the most dangerous areas where these tumors are, damage wise. One can just imagine the anxiety you are going through, but def a neuro radiologist and oncologist should have a look at those images.
When you know that it's really the time for Hospice, we'll be there for you.
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I FELL down tonight out in my new patio. Will post on the new thread.
Scary...i was just trying to pull weeds. Daughter and husband pulled me up to spare my back.
Broke my glasses...DAMN,
THings are obviously progrssing.
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Lita,
I'm so very sorry to hear this news. You will continue to be in my prayers as you navigate the coming days. Much love to you.
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Lita i got you on YOUR thread. We are all with you.
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Hi my brain mets sisters!
It's been awhile since I caught up on this thread. In NYC right now and couldn't sleep so decided to check in. So glad to see that the thread continues to be active.
Mara, Thanks for continuing to carry our torch that some of us have done very well after WBR and that, for us, this was the best option.
It's been almost 3.5 years since my WBR. My brain is still clear and my higher-level brain functions seem to be unimpaired. Short-term memory not great but all of my friends and my husband seem to be having similar problems so I think that a good portion of it is just normal aging. The rest of my body is improved to stable. Continuing to dance and do Iyengar yoga every day. Continuing to see my Chinese medicine doctor. So far, able to enjoy my life. Knock on wood...
My young metastatic breast cancer support group has experienced a bizarre surge of brain mets this year. There are now ten of us. Can't figure out why that would be. Some in their early thirties.
Love to all of you, Susan
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new to this thread (sigh), but what an incredible resource again
very comforting to read stories of so many getting the bad news, but despite this, managing to get decent treatment options and buck the odds
would have a question for the community (couldn't seem to find this topic in one place): for those who have had locally treatable lesions with rest of the disease still controlled, is there a general preference for SRS/Gamma-only vs resection + Gamma? Will probably hear the pros and cons on pure clinical side from neur onc directly, but sometimes other patients experience is invaluable and quite curious as to how people in here feel about this type of decision, wrt potential SEs, management of cognitive impairment risk etc.
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Hi orpheus,
I'm sorry you find yourself here, but as you already noted there is a wealth of information here and much support.
As to your question, I had surgery and gammaknife to the tumor bed. The reason this was elected for me, was the tumor caused me to have a seizure and my neuro onc thought it was best to remove it. I have been NED for 2.5 years. The craniotomy recovery, for me, was easier than the recovery from my mastectomy. Aside from some fatigue for a week or two after, I had no SEs from the gammaknife. Best of luck to you.
Carrie
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Thanks Susan, just trying to help our sisters/brothers realize that WBR can be recovered from with a very good quality of life. I know you take Namenda. I never took Namenda myself and really have no real memory/cognitive issues either. Exercise and adequate sleep help me the most. Hugs out to Lita57 and Wanda who are currently undergoing WBR.
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Hi all...can't remember if I posted here already but wondering if any of you have advice for my situation...I'm traveling this Friday for a 4th opinion with a Dr that focuses on brain/lepto metastasis so hopefully will have more confidence on how to proceed.
Radiation to 3 brain lesions in mid July (1 described as leptomeningeal by radiologist, sounds like on top of cerebellum). Scan mid Aug shows all 3 are responding, BUT 2 new ones with one described as leptomeningeal (left frontal). Recommendation was to do another round of SRS but I'm concerned on how quick new ones are showing up and also the leptomeningeal description. Found reputable Dr willing to try intrathecal herceptin...is this an overkill??? Appreciate any thoughts you may share!
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Gramen, though I have not had it myself, I would say no, not overkill. If you are able to take advantage of it, I would take intrathecal herceptin myself. A couple of people on this thread have had it and had great success with it. Good luck in what you decide.
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Sorry to see new people here, and ESPECIALLY to hear about all the YOUNG women getting brain mets.
Told radiologist yesterday that I think ALL women who initially have St 4 Dx should automatically be getting a brain scan, just as a matter of course. Brain mets don't usually happen with early stage BC, but you're chances are about 50/50 for getting brain mets eventually once you're St 4. The reason is that St 4 women are now living a bit longer, so the little bastards are floating on up into the brain.
Radiologist told me they automatically do it for ALL lung cancer patients because the brain is one of the first places it migrates to for lung. But because over 200,000 women a year get Dx;d with BC, it's VERY expensive to do a brain MRI on all of us.
Hopefully that will change.
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thank you very much, Goodie16 . This looks like a similar combo (surgeon says, if it's operable at all, I'd rather go for it myself, and use SRS to "clean up leftovers")
very comforting to hear you sailed through that bump in the road and never looked back. all very scary at the moment (though with great response to HER2 regimen, it seems to be expected that it'll pop out up there eventually), but seems like this is a real area of progress these past few years
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Orpheus - the first days and weeks after a brain met diagnosis are the worst. Once you get a treatment plan, you'll feel a lot better. I'm thinking of you!
Lita - you continue to be in my thoughts too!
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