Brain Mets Sisters
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Congrats Agness/Ann!
Happy New Year everybody.
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I posted this link here about a year ago, for those of us who want the survival stats. The data is from 2012. There has been another paper in 2014 that included number of mets and has slightly better stats
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I can't find the updated paper. Maybe someone else will. Here is another I found
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Great news Ann congrats!!
My MRI showed no shrinkage from last one but no growth either... I was a little bummed out and worried at first, but RO says scar tissue is building and will take more time before spot shrinks and goes away. I hope he's right.
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Hi Ladies,
My mother finished WBRT on Dec. 22 and came down with a cold in the last few days. She has sore throat, headache, nose congestion. Today she is experiencing nausea and vomited. Is the nausea and vomiting a common side effect after WBRT
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I dealt with nausea and vomiting as well as low appetite for a few weeks after the WBRT I had. For me it was a combo of the radiation, stress and coming off steroids. Even if she is not dealing with steroids or still on them, best thing to do is get a good antinausea med to start. Sounds like she may just have a bug but if she is not feverish, I see no reason not to ask for an antinausea since is impossible to tell the difference between treatment side effects and regular stomach issues. She should also rest when she can as she will be tired for a few weeks. When she is back to eating and feels up to it, she could also try some light exerccise to boost appetite and feel better. It will definitely pass, but it is a long recovery. I started feeling normal approx 2 months after finishing.
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i had nausea during and after my rads (not WBR but 10 treatments). From my understanding it can be caused by the rads since the nausea center is in the cerebellum and inflammation in that area can create nausea. As well the steroids mess with your GI system and can cause nausea. So normal but not like that makes her feel better. In my case it was the rads and the steroids actually helped in the nausea but I still have lingering nausea mostly in the morning. If I could get pregnant I would be sure it was that but not possible. It's tough but goes away pretty quick. Just nausea no puking. Hope your mom feels better. Certainly mention it to the doc.
Josee
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Thank you both. I read a few things online that had me worrying (I know not good!) She is feeling a little better, but will be calling the doctor tomorrow to get a prescription for an anti nausea med. She did good with Zofran while on chemo so hopefully that will help.
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hi tre4,
I ended up with both nausea and vomiting after SRS. Two times ended up in emergency and 1x they figured I was weaned off the steroids too quickly and the second time it was the flu.
I did eventually use very small doses of marijuana ( 2-3 puffs) and it took away my nausea almost instantaneously. I never smoked before but it was the best remedy for nausea for me... I had 10 days and then one day it was gone. I found the anti-nausea med made me dizzy and on top of a precautionary anti seizure med that also caused dizziness it was too much. The good thing is knowing her nausea probably has to run its course, then she should be okay again.
Best wishes,
JoJo
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Tre4, yeah, online is not the best. Support groups like this one is what I tend to stick with when searching brain mets. A lot of places will have brain mets people dying within a couple of months or WBR people getting dementia, loss of continence etc. A lot of times, when things go well, people are not posting as often since they are living life. When things go wrong is when people tend to post more online which can help skew search results in a bad direction. She will have a long road to go which is NORMAL. Rest, exercise when possible and meds to control nausea are the way to go. One other suggestion I forgot, depending how long she had steroids, something to counteract heartburn like rabeprazole or ranitidine may be a good idea if appetite does not improve. I did take them during steroids but dropped after. When I found my appetite still waning a couple of weeks after, got a prescription for rabeprazole since heartburn isn't always felt but can cause nausea.
WBR can be a good tool, there are people doing quite well, not posting since they are living life. Another piece of the puzzle is how your mother was doing before the WBR. If she was still in good cognitive condition, no reason to look for her recovery to be any different. If she was having problems walking, talking, remembering before then that can mean a longer time to recover. Good luck to her. I am sure she is in good hands between her doctors and yourself looking after her. Keep us posted.
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Today my mom is feeling much better, thank goodness and was actually able to eat last night. She called and spoke to the radiation nurse and she said she didn't think it had to do with the radiation based on her other symptoms, but to call if it continued or got worse and her doc would prescribe something. She is weaning off the steroid and will be completely off on the 5th. Next step will be second opinion in Boston on where we go from here. Firsthand knowledge helps so much, so thank you for answering my questions and sharing your experiences. My mom doesn't do computers, but she thanks you as well.
Tracey0 -
Glad I could be of help. Keep us posted.
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hi everyone, my names Kiran. My moms a breast cancer patient with mets to her bones and brain. I was wondering if had one has had to deal with radionecrosis ? My moms cancer is stable for most part but the necrosis is what's giving her problems. They thought it was tumor progression at first but when they went in to remove the tumor the pathology came back negatives odf cancer, it was just dead tissue. She had a reactions to eribulin, started off with a Sore throat and then her tongue started swelling up. She's having a tough month or so. Any advice or suggestions? I've already put in a request for hbot
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Hi ladies! With the holidays, I haven't been able to check in. I hope you all had wonderful Holidays and New Years despite cancer sfuff. I am doing well. I finished my 14 WBR Dec 19th, 3 weeks ago. I have had a few moments of fatigue, but manageable. I am sure most of it was from entertaining family in town and chasing after my 3 kids. I did get some wonderful news right before Christmas! I was diagnosed last April with tumors in my hip, spine, and both lungs. But my PET scan 2 weeks ago showed that I am NED from neck down now. So herceptin and perjeta are working! I am just hoping and praying that the radiation broke up the blood brain barrier and the herceptin can get in there now. I have a scan Feb 2 to see what's going on in brain. Just grateful for stability and each day!
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by heart-
I had to have a crainuotimt because they could not tell if I had necrosis or new tumor in my old rsite that had received gamma knife radiation. In the end it was just necrosis.
So I don't have much to share with you other than I did have to have surgery to confirm necrosis vs new tumor.
Sorry I can't be more helpful
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Great news NicNak!!
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Great news NikNak. I am also NED below the head and credit the herceptin/perjeta I get for that as well. My MO did let me know that radiation can open up the blood brain barrier a bit and that some of the H&P can get up there. I would like that since my cancer has responded so well to these drugs. I will be scanned in 6 weeks to check my body and bones. I hope I will get my brain scanned too since have not had anything since I finished the WBR in September done for my brain. I doubt anything is going on though, no headaches, balance, vertigo or anything I had before so I feel like things are likely clear. I just want confirmation of that fact.
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I will find out tomorrow the results of my brain and CT scans. I'm nervous but it's been over 24 hours since I had the scans, plus my onc's office is still pushing my Tykerb through insurance as of a few hours ago so I assume that's a good sign that I'm. Or dealing with crazy cancer growth at least (or else they'd be taking me off the Tykerb). Still nervous though...I had some brain symptoms over the holidays and I may not be NED below the head anymore
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thinking of you bad at user names.
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Let us know your results. We are pulling for you BAU.
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Thinking of you and hoping for good results today, BAU. The waiting game just plain sucks.
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hello brain met sisters,
I'm so thankful I found this topic on here and for you all being so generous in posting all your thoughts and knowledge. After my DX and I looked up the stats, I just froze and couldn't look another thing up. I feel like an idiot..It's been 22months since that day and I'm finally brave enough to look..lol...That's why you girls are a blessing.
I found out in March 2015 that I have stage 4 TN BC, BRCA+, primaries in both breasts+lymph, around both lungs, spine+ribs, adrenal gland, and 5 brain tumors ( 3 over 1.8cm ).
I had the cyber knife done on the 5 in June 2015, and in July 2016 had it done again to a tiny 4mm one that developed. My last brain scan was 12/28/2016 and I'm happy to say that of the 6 only 3 remain and they appear to be dead
The tumor on my adrenal gland had grown to 4cm in October 2016 and I had the same pinpoint radiation done to that and it is shrinking but other than that, I have not been on anything since chemo ended in Nov 2015....yes it's been over a year since that poisonous s**t !!...that saved my life You all are in my heart each day and although each of our stories are different we share something no one else in the world would ever understand. Thank you for being here and I'm so very sorry that you are.
Keep shining bright,
Nancy
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Nan, welcome, sorry you are joining us but happy you are here. I have never looked up the stats myself. I am too afraid of what I would see and would not want to know. I take my situation day by day. Currently I am met free from the neck down and hope my drugs keep it that way. Herceptin/Perjeta for me. I feel pretty good now. No real side effects to speak of. Hoping the drugs give me as long as possible without progression. My MO also told me that since I had whole brain radiation, the drugs may get through the blood brain barrier which makes me feel good as well. As long as I am not having neurological issues, I am happy with how things are going. Glad to hear things are well with you too.
I hope you pop in every once in a while as well to say hello as well.
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Not being scared is not the definition of courage.........Courage is being scared and doing it anyway.
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Hi all. Some of you might know me from other topics in the Stage IV forum. Those stats below are mine, not his, in case anyone was wondering. My brother just finished radiation to his sacrum and left chest. He's set to start back on Ibrance next week. But the radiation oncologists seem to think he might have brain involvement. He's scheduled for a head CT next week but they really would prefer an MRI. He's claustrophobic, so we're compromising with an open MRI. There's no info online how CT compares with open air MRI, and the doctor's didn't know either.
His main symptoms are general weakness in his legs (could be because of his neuropathy), occasional numbness on his left cheek, and he also gets nightmares and is very emotional, which is completely unlike him. But we don't know if that's depression+opoids+ambien or something else. No headaches though. Now a few days ago he had some hearing loss in his right ear, which we thought was an infection, but no infection found and no wax buildup. What were some of your symptoms that led to a diagnosis of brain mets? Is headache a "must have" symptom? Thanks all in advance.
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I did not have headaches myself. A lot depends on location of lesions as to symptoms. My symptoms were nausea every morning, pressure in my head, thunk vicelike. I mistook that for vertigo and some vision distortion, think looking at a clock but not seeing all the numbers. I do get ear issues but this was after whole brain radiation. Gives a bit of ringing and will feel plugged if my sinuses are plugged. In short, headache does not need to be there to indicate Mets. MRI will show more than CT. I certainly hope his symptoms are treatment related, best of luck. Keep us posted.
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hi L-i-L,
I did not have headaches. Two symptoms that I had were a visual disturbance that was later diagnosed as an Ocular Migraine ( no headache) and a consistent hearing loss / Tinnitis in my right ear only.
My problem with my right ear changed after radiation but has never cleared up and the docs are still unsure that it had to do anything with my brain mets.
Well wishes and hopeful thoughts for both you and your brother.
JoJo
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I had no symptoms when diagnosed. In retrospect, I had lost the ability/ desire to multi-task and care about planning things. These got better after treatment. So I assume my lesions effected that trait.
Other than that, no symptoms
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No symptoms here either...I happened to see a new doc on my onc team and well ...I have kind of a dark quirky sense of humor and I think with how sick I am it kind of put him off. Even after the nurses reassured him that I was always like that, he insisted on the mri...saved my life. I was on a every 2 month mri schedule ( now 3 month ) and only once was I put in the big tube for it, because they also needed pics of my spine. So usually they put this cage thing over my face and just slide my head in, I keep my eyes closed, ask for a fan for fresh air, and take a xanax. All of these scans get harder and harder each time I go, it's like I have to stare the thing down and say " I'm stronger than you are ". Oh it's exhausting! So all in all my brain scan is the least scarey scan for me and if any one has any tips to help me beat my irrational fear ( I think it's that trapped feeling and leave it at that )I would love to hear from you. L-I-L your brother is lucky to have you.
Keep shining bright
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hi Nan,
I've been doing Belleruth Napersteks Meditations for People with Cancer since I was Dx in 2014... it's really help me be calmer when I hit a high anxiety time.
I close my eyes in the MRI ( for sure!) and then I focus on going into deep relaxation. I literally have fallen asleep even with that loud clanging going on!
One time they didn't talk to me and tell me how long each picture was and I found that more anxiety provoking.. so, I make sure to tell the technicians to talk to me throughout the exam.
Have a great day... I'm in a Fitbit challenge this weekend so I have to get lots of steps in today and tomorrow in between football games! Go Seahawks, Patriots, Steelers and Packers, lol. I love NFL football!
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