Brain Mets Sisters
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You WILL get thru this, illimae! You're a strong woman, and to quote you..."I am determined to deal with this and move on." A wonderful mind set!
You just need to steel yourself, as you are doing. It could be worse. You'll be IN AND OUT. It's a targeted procedure, and it works very well.
Those of us who have/had to do WHOLE BRAIN RADIATION have to go thru a lot more...radiation every day for weeks, and your head gets BOLTED down to the table in a "Hannibal Lecter" type mask. Plus, there are neurological deficits with WBR, and you won't have to deal with these. My short term memory is shot, I don't remember any of my dreams, and now my right side is going numb...all because of WBR, which does not discriminate between the malignant brain cells and the healthy brain cells.
Still in my prayers,
L
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Thanks Lita and all of you in the group, I appreciate the warm welcome and well wishes. Hopefully, this does the trick, if not, WBR will be considered if I have continued progression later. I only finished breast radiation 2 weeks ago and I haven't even had my first post chemo haircut yet, so no time like the present, I guess.
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illimae, you are in my thoughts and prayers. Hoping this set of rads takes care of everything!
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Thinking of you Illimae! Hang in there.
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See about getting an anti anxiety drug. It is a different thing than even WBR but will have a shorter recovery period. I will be having similar treatment for my new lesions in the tumour bed. I'll be thinking of you.
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My wife has had Gamma Knife 3 times, and was completely fine the next day, apart from being sore where they fitted the headframe.
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Glad to hear that too Freakzilla as I think I will be having the same thing in short order.
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Good to know freakzilla, thanks
That headframe sounds pretty brutal, though. I recall thinking that the mesh mask was some sort of torture device but the metal sounds medieval.
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they premeditated me with Ativan and gave me more once I was there for the fitting of the metal frame. I didn't mind it as Ativan took the edge of
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illimae so sorry you had to join this wonderful bunch of ladies. What about your systemic tx, what are they changing it to?
Lita you coming along?
Mara I can't believe you have to deal with that. Yes, D has 2 small lesions in the cerebelum, one thy had to use rads, the other they are watching.
Dani is having her MRI on Tuesday, due to progression in her body, she will be in an ew place, new docs, didn't decide exactly if that's where she will be at, but we need to regroup and at least the scans she will be having, the PET/CT and the MRI of the brain. Her former Onco ran for the hills. Literally, she is not answering emails, I, we could escalate this but there is so much work ahead of us, i gotta compartmentalize, she went through a hard time last week by being neglected at the Center, they literally do not know how to take care of emergencies. It's a disgrace.
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Hi Mom...I was worried about you because I hadn't seen a post from you in a while. Sorry to hear that Dani had an emergency. I hope this new team can help her.
I'm experiencing a lot of numbness on my right side, but the RO said physical deficits are to be expected with the leptomeningeal involvement. Still having headaches, so I take a very low dose of steroids to help with that. Chemo infusion #2 on Wednesday.
Praying for Dani,
L
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Just found out that a woman in her 40s from my live St IV group is now going on Hospice because of the big tumor in her frontal lobe. She already had WBR, but has just recently lost the ability to speak.
I HATE this disease! We just never know when our lives are going to take a turn south.
We must be thankful for the functional days we have.
Thirteen fires burning out of control here in Northern California. Wineries have burned to the ground; hundreds and hundreds of homes burned to the ground. The Hilton in Santa Rosa off Hwy 101 is now gone. Tens of thousands of people evacuated. Hard to watch the devastation on TV.
This will go down as the worst summer/autumn in our history, with all the hurricanes, floods, fires, and earthquakes. (4.2 earthquake near San Jose just hours ago.) It feels like Armageddon.
L
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illimae, like leftfoot, they gave me ativan before fitting me with the headframe. It really wasn't bad at all. I felt fine afterwards and even stopped for lunch on our way home. Some tiredness in the days following the gammaknife, but that was really it. Best wishes to you.
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Hi everyone, I'm new here. I found out yesterday that I have tumors in my cerebellum along with swelling that is posing a danger to my brain stem. I was admitted to hospital yesterday and am scheduled for surgery on Monday. Gosh, this is a lot to take in.
Looks like there are lots of terrific ladies here, so I'm in good company, and lots of knowledge and experience.
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Lisa, my knowledge is limited, but you are in my prayers. Feel these gentle hugs!
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Lisa, I can definitely empathize with surgery happening quickly depending on the size and location of your lesions. In and of itself, barring any complications, craniotomy is not as bad as it sounds. I was out of hospital in 3 days. Depending how much they can take out, it should improve any symptoms you might be having. Keep us posted, quite a few of us have undergone that kind of surgery. Sorry you had to join us, but welcome.
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weekly
Just had MRI lesions all over brain will start wbr next week dcar d any advice
Paula.
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Sorry to hear the confirmation Paula, I was really hoping it was something else like a meds SE.
momallthetime, no change in treatment as my left hip bone met improved from the June (pre-surgery) scans, which was my only met location and the rest of me is clear. My MO believes that some cancer cells made their way up there before chemo through my positive supraclavicular node but were too small to be detected at the time. So, current meds seem to be working, I sure hope so, as optimistic as I am, it's hard to accept that I may not see my 45th or 50th birthday. Also, I'm very active, work full time and feel totally normal, so it's equally hard to imagine anything that could stop me from seeing those birthdays.
Lita, I grew up in Huntington Beach with fires as a part of life in the general area but I don't recall any with this much loss of life, so destructive and sad.
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illime,
Will be starting wbr next we k
Paula.
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My gamma knife is scheduled for next Friday, I'll be thinking of you.
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Paula, brain mets suck rocks for sure. Hugs to you.
Illimae, no reason not to expect being around for those birthdays. Treatments have improved so much.
My localized lesions suck too BUT my new RO says she can zap them away. They are super tiny so we will MRI them again to see if they grow. I don't feel quite so bad since they recurred at my original tumour site. RO thinks I can go for years which was nice to hear.
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Thanks for the support, everyone. Now that I'm thinking about I'm wondering how long these have been growing. I love my yoga classes, and I've noticed for months that my balance was off, but I chalked that up to post-chemo neuropathy. Anyway, it's good to be among friends.
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Welcome, Lisa....yes, I've wondered how long I've had mets, too. I probably had them as early as JUNE of this year because of all the eye/vision issues I'd had.
Once again, I just chalked them up to chemo, too.
Damn brain mets!!!
L
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just found out after a brain MRI today hat I am starting wbr cause of multiple lesions all over the brain can I live long? Would appreciate any advice, I'm just not ready to die yet
Paula
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I don't know if it's been shared here as yet, but I wanted to pass this new trial info' along to Lita, Kaption, illimae and others...
https://www.armyofwomen.org/studies/977
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Paula, please do not prepare yourself to die right away. Although we need to be practical regarding wills, estates, powers of attorneys when we become stage 4, it does not mean that you won't take years.
I was dx stage IV with met to my brain july 2016. I went through WBR and recovered from that. It took me longer than it needed to mainly because I held a lot of fear before, during and after treatment. My MO thinks I was stage 4 from the start since my body has been NED since my first rounds of treatment from the neck down. This is since 2015.
It will take a long time for the initial fear of the brain mets dx to subside. Look to relaxing music, guided meditations on youtube as a gentle way to go to sleep. I listen to them and still do since it allows me to lose the fear that can come at night. It will take a while, BUT WBR is doable and if you check earlier posts you can see people also can last for years with good qol. Hang on to that. You are mobile and active, keep those up as well. They will help before during and after radiation. Thinking of you and us all going through the brain stuff. As Lita's wonderful button says, Stupid Cancer!
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Thanks, Deanna. It’s good to know there is research being done.
I’m HER-negative. (Originally barely positive, I probably have not updated my info. )
Thank you!
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Mara,
You know that it took it longer to heal cause you were scared, that's exactly how I feel terrified and don't know what to do about it. I am dizzy and I Therefore cannot exercise so I spend almost t of time some feeling sorry for myself l. Help me get to a better place.
Paula.
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Paula, I sympathize. The best bit of advice I can give is to allow yourself the time get to a better place. If your cancer centre has a social worker, ask for one. Failing that, sometimes watching your favourite movie is helpful. Don't pressure yourself. Once you have been treated, you will feel better. Don't hesitate to ask for anxiety meds either. Another thing that can help is the 4-7-8 breathing method. Link is below. It can help you relax, can be used for better sleep too. I am thinking of you.
https://www.drweil.com/videos-features/videos/breathing-exercises-4-7-8-breath/
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Thanks Mara,
Warm hugs to you, Paula.
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