Brain Mets Sisters
Comments
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Susan - glad the foot thing doesn't sound too bad. But the caffeine thing - wow, that's been keeping me going. Maybe I need to cut down.
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that's great bosco!
Susan, I also have the clogged ears and nasal congestion. I wonder which poison is the cause of it, since we are all on similar regimes. I can't remember if it started before the xeloda or not.
My head is still foggy a lot of the time. I just want to be able to think straight again. On the upside, I am able to sleep a lot more now, even though it's still two hours at a time.
Hope everyone is having a good day.
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thanks all for the good wishes. I hope we all stay as well as we can
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Hello Ladies:
Just found out I have to a MRI on my brain. Quick question what does WBR stand for? Sorry new at this now thanks.
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whole brain radiation
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thank you so much Delliriumpie!
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Quick post to let you know that the swiss cheese holes in my brain are rapidly disappearing. Steroids tapering is helping a bit with sleep (not so much tonight!) and eating fewer sweets.
I found out I'll need to stay on Keppra which is anti-seizure. Anyone else continuing on an anti-seizure med? They tell me I never actually had one.
SusaninSF- I asked about the cystic versus solid tumors. Rad onc said mine are solid. She also said solid is considered easier to treat.
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I have been reading back thru the thread and there is some great info but I don't really see how people are picking Cyber knife vs Gamma knife. Seems like the Cyber knife is easier but I have just started reading. I was told this morning my scan last week showed some brain stuff and I will be doing a brain MRI later this week. Just trying to get my ducks in a row
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To Lilylady...In my case the treatment was just called sterotactic radiation. I think the cyber or gamma knife refers to types of machines. The gamma knife machine was not available in the practice I went to. The treatment was relatively easy after the prep of making the mask. I didn't have any real SE except some stomach upset which lasted for a couple of days and fatigue that lasted for several weeks. I worked thru it all, tho. I had 3 sessions to treat 1 met. Good luck to you!
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Thanks for the info. I was hoping to get thru this without telling my parents and family that anything has changed. If you worked thru it I am hoping I will be able to do the same
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I had Gamma Knife to the brain on 9-11-14. I had a tumor in the balance area and recently notice again balance problems...not severe, but I'm off. Is it possible that the tumor is already growing back? Or is it just side effects from that area being radiated?0 -
hinds I think it could be an SE of rads. Balance issues and clumsiness are also listed SEs of several meds I am on. I can't remember if you are still on steroids?
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To Annie62
I haven't had any seizures either but neurosurgeon wants me to stay on low dose Keppra for another couple of months (started end June)
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is the keppra just a preventative for possible seizures or does it also control the swelling? I was prescribed it when I left neuro ICU but due to a screw up at the pharmacy, never knew it. By the time I noticed the multiple errors that were made, a month had passed. I asked nurse practitioner if I had to take it. She said I should but upon my resistance, she said I didn't have to since I had never had a seizure. She seemed a tad uncomfortable with it. I was scared if the SEs. They were so similar to decadron, my enemy
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Annie62,
Thanks for the info about cystic vs. solid tumors. Since the cystic seem to be rarer I can see why the treatment would be more difficult. So far, on this board, no one's come back and said they also have cystic.
Hugs, Susan
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hinds agree with delirium I still have balance issues when I'm tired which is every day
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Re the keppra ladies. thx. I'll ask at my appt next week if it is forever or temporary.
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Good news yesterday! My brain MRI showed that my brain tumors have shrunk by about 50%! On my last scan, the biggest was 2.1cm, now it's 1.2cm. Some of the smaller ones are no longer visible. I'm now about 5 months out from WBR and this is the first time I have seen improvement so those of you who just finished treatment, be patient. My body PET/CT scan was more mixed but overall pretty much stable. Hopefully, this will make those who are going through treatment now feel better that these treatments can work! Definitely not "game over"!
Hugs, Susan
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that's great news Susan! Very happy it's working for you. :-)
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Susan --Our post has made my day. I am so happy for you and also hopeful for me.
I do have a question for you guys. I finished WBR 1 week ago. I am tapering off the steriods finishing tomorrow. But my face has become more moon-shaped and puffy and my eyes are puffy as time goes on. I thought it would be opposite. Any experience with this and when it might subside?
Thanks,
Annie
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great news Susan
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Hello Ladies,, I recently had a Brain MRI and the repot indicates there is a small cancerous lesion on my skull which was not there before. Says it's on frontal area of my skull, and dura. Probably just above my left eye. I have no symptoms but have had some double vision which may or may not be from that. While I am relieved it is obviously bone involved and not my actual brain, I am still concerned.
Has anyone else had this and did it eventually go to the brain? I guess I am wondering how often it does go into the brain from the skull. Also, how was it treated? My onc referred me to my radiation onc and he had me just wait a few months before another MRI will be done, I guess so he can see how fast it is growing. I have the next MRI in a week. He wasn't exactly clear about how exactly it will be treated, but it sounded like with rads.
If anyone has info on skull metastisis or the treatment, please provide whatever info you can. I appreciate your help.
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Hi Judie - sorry I don't have experience here. I hope it stays a skull mets, but if its on the dura that is the lining of the brain - not in the tissues of the brain - I think.
I would think they would radiate that one spot, but I'm not 100 postive.
I had diffuse small mets in the brain tissue and 2 slightly bigger ones also in tissue. I had whole brain radiation because I had 5+ mets. If it was just the 2 they would have just zapped those.
Hope this helps some.
I hope it the rads will just kill that sucker and you don't need to think about it anymore.
Annie
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Judie,
I have a friend who has a skull met that is also pushing into the dura. So far, they are also in wait and see. She is always on chemo so I suppose they are hoping that will work on the skull. She only has bone mets. I don't know that there is any higher chance of getting brain mets from skull mets than from anywhere else. You should ask your MO.
Hugs, Susan
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Encouraging to know that the balance issues are from rads not another tumor or the one growing back. I have a ct scan for everything under the neck on Monday and a few weeks later a MRI for the brain. Why do they need to scan every few months?
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Why is the rad doctors say that untreated brain mets life expectancy is one to two months? I know the one I had was there a few months before it was spotted on the MRI due to balance problems I noticed. I didn't tell the doctor at first because I didn't want to deal with brain mets. When I finally did it and a few others was zapped.
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Judie, I have skull mets that are "suspicious" for going into the brain. Several docs had told me that it is rare for skull mets to progress into the brain. But just to be proactive, he had me do weekly spinal taps with methotrexate, which starts off easy but ends up (for me, at least) horrible with SEs. I was having all the symptoms you'd associate with brain mets: clumsiness, double vision, cognitive decline...Once I finished (last week) the SEs faded pretty quickly.
In the meantime, we're waiting until Nov. for my next scan to see what it says.
Also, about 4 years ago I had a single skull met that was above my right eye. It was causing headaches, and my onc talked to an incredible surgeon who said he could just remove the spot. He cut me from one ear to another about at the hair line (sounds gross, but it was very surprisingly simple) and removed the tumor, put in bone putty and titanium mesh, and finished up. I only spent 1 night in the hospital and then went home.
I did have a seizure the next day, I assume from brain swelling? But I was amazed at the speed with which I recovered. I left 2 days later to go to my daughter's college graduation across the country. The pain was minimal (I expected massive pain, but didn't need more than Tylenol) I did have dissolveable stitches that looked a bit Frankensteinish, but that was over pretty quickly.
I never did have rads, though. Hope this helps.
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Thank you, Annie, Susan and raro. Now I at least have some idea what I might be facing. raro, from your recent posts I did see what you have been going thru with the methotrexate in your spinal fluid. Just sounds like the absolute worst. I hope you are done with that. I came in late to the thread and did not realize why you had to have that done...one skull met. Oh man, if they start talking spinal fluid I am out of there! I can't run too fast with a walker, but I will certainly be motivated! Truly that sounded just awful and I am so sorry you had to go thru it. You have endured so much, raro. Now the surgery you had done did not sound nearly as bad as the spinal tap times. But you are very brave, raro. You really are. Thanks all of you for the info. I will keep you posted.
Hindsfeet, , you asked why they repeatedly scan us. I believe it is to keep track of what the Cancer is doing. Is it smaller (hopefully) or larger (progression) ? This way the docs see if whatever chemo you are on is working or not.
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I have spent my Sunday reading this entire thread and I am encouraged by so many positive outcomes. I had a horrible scan 2 weeks ago and that is also when they dxed the brain mets. I have changed chemos-now on Iexmpra and have been to see the rads guy. I am seeing a neurosurgeon this week and depending on how many other poor souls have messed up brains and how fast the insurance company works I may be doing Gamma Knife by the end of the week. Sounds suspiciously fast but the rads guy said they don't mess around.According to him the area that the biggest tumor is in straddles a cognitive and physical function thing. Bad area for seizures so they have requested I stop work for now. He explained the physical thing to me as ---say you wanted a drink of water...your brain would know that but wouldn't send the message to your arm to pick the glass up. Mine would be a left sided problem. I have no symptoms right now so no steroids or anti-seizure stuff yet.
I am going to rest on the reading and pick it up again tomorrow. Maybe I can hang onto the names ect without constant back peddling.
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Lilylady best of luck to you. I hope they are able to shrink that sucker down and avoid future impairment.
Quick update on me: MO and Rads onc agree now that brain rads over Ambien is okay. Took one last night and sleep more than I have in a long time with some resting periods in between. A little groggy this morning but worth it. I think I'll try every other night for now.
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