Brain Mets Sisters
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Left foot forward, I'm sorry to hear that! What treatment/s are you on now?
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DizzyDee- they put me back on Xeloda and Tykerb. My next brainnMRI is at end of July, as I had gamma knife done May 2nd.
My CT of my liver was Monday and I get those results tomorrow.
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Keet, I take a very LOW dose of dexamethasone (2 mgs or less) to keep the swelling, inflammation and headaches at bay. I have resigned myself to this for the rest of my earthly life. I take CBD tincture to keep seizures in check. Sadly, I still have dizziness and balance issues :>(.
We have to do whatever we have to do.
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I was approved for wbr(just not the memory area sparing kind the Dr preferred). So I had first. Treatment Thursday. Much pressure in head tonight so I e mailed Dr to increase dex to 4mg. Hope that will help. This is a little scary. Thank you everyone for being there. I value your advice. Any other suggestions for wbr?
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keetmom - I feel they hand out steroids like candy without evaluating the specific patient and the risks. This was absolutely true in my case. The doctor did not even blink when I said No, and that is a clear sign it was not necessary in my case.
However, given that you had a seizure your case is different. I am glad you are on dex.
There is a place for all these drugs....
Z
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I was sent home with a perscription for Rex. I had 30 lesions zapped by gamma knife and never used it. I believe it is good to have on hand but not always necessary
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Thanks for the welcome, ladies!
Question--does anyone know how common is it to have the brain as the first and only site of mets? I'm having trouble finding info on that.
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Here’s a couple images nash but I don’t know how current they are or where these stats came from.0 -
Thx illimae. I figured my situation was pretty rare. But then everything about my situation the past 11 years since I was first diagnosed has been atypical. I hope that means I’ll end up beating the odds
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Hi Nash,
I'm in the "solitary brain met and NED everywhere else" group. My brain was also NED until last scan in March. There's an odd spot in my tumor bed (from craniotomy) that my neuro onc isn't sure if is scar tissue or new tumor growth. I'll see what it looks like at my next scan in July. If it still looks odd, we'll probably do Gamma again. My onc said in his 28 years, he has only had 1 other patient like me. My case has gone the tumor board for discussions on my treatments over the years. Sometimes it's ok to be unique
Welcome. You'll find so much support and knowledge in this group.0 -
Can anyone that has had whole brain radiation reach out to tell me that you have had some time post radiation and NOT suffered from memory or thinking issues please?
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Living I am doing well and I had wbr in March, maybe occasionally some issues but that could be chemo brain.
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Keetmom. Thank you that is hopeful. Did you have headaches or double vision issues prior to raadiation? I'm experiencing that and am hoping that clears up
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Not sure if you all saw that Dani, the daughter of MomAllTheTime, who was a huge support to all of us on this thread, died on March 8th. She struggled for so long. May she rest in peace.
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Someone in my support group sent a link to this video about metastatic brain cancer treatment options. Very informative!
Brain Metastases: A Documentary
Hugs, Susan
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I have a few questions about cyber knife. Is there any reason why I couldn’t drive or travel I’d im not having any effects from the lesion? And did you get sick or exhausted? When they fit my mask the lady had her finger on the left nostril area and as a result I don’t have the air flow on that side...can they fix that? I’m afraid I won’t be able to breathe because I have such sinus problems!!
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Living,, had other symptoms that went away either with radiation or steroids they came at same time, I am only 3 months out so I dont know forsure, I do know that going off the steroids caused a bunch of issues.
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Gracie, I had no issues or fatigue from Gamma knife rads and no limitations on driving other than the day of the procedure due to Ativan. I would definitely have the mask addressed, tell them ASAP and don’t let anyone be lazy about it, even if the have to do the mask over again, it’s that important.
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My third brain MRI following SRS is tomorrow. First showed almost complete resolution of my 3 lesions. The second showed a slight increase in the right thalamus lesion. Hopefully no further progression will be detected tomorrow. This weekend starts our week long family vacation. Hopefully I will receive good news!
Joy
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rosiesgirl,
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Thanks Mae, will tell my onc tomorrow
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Truth be told, I’m worried about all of this! I wonder often, how much has this screwed up my odds of living another five years. Surprising what the words “lesion” and “brain” can do to your thinking!!
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Gracie- I’m almost 6 years out from my metastatic brain diagnosis. I was just treated again but we are hopeful I will have the same results. I understand how scary it is but keep hoping and fighting.
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leftfootforward, 6 years!? That’s awesome 👏
Gracie, I was right where you are in October but even with the addition of brain mets my MO still says the average is 5 years and seems to think it won’t slow me down much. Please know that you’ll feel better once you’re on the other side of this.
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Thanks to both of you! I pray you are both right. I want another twenty years
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I’m really encouraged to read about the five to six year survival numbers. Everything I’ve read seems to indicate two years is good, and my onc said three to four years would be really good. So I’ve been in a bit of a panic. When I was first diagnosed with bc in 2007, my goal was to get my youngest child out of HS. He still has two years of HS to go and I was starting to worry I might not be around to see him graduate.
Off for CT mapping and mask making ahead of Cyberknife next week
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ok I am not very happy. Even after telling the RO nurse that I can’t stomach (literally) dexa and last time I took it I ended up in the hospital we, she said well that’s what we use and Dr. won’t do treatments without it. !!!! Surely there is something else they can give me that will work? They won’t do an iv so decadron is out
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Nash, When I was first diagnosed with early stage BC, my kids were 2 and 6. Now they are 20 and 24 and it looks like I should be able to see my youngest graduate from college and more! There is a cliff of new treatments on the horizon, many already in Phase II or III trials, so we just need to stay alive long enough to use them. No guarantees but reason to hope.
Gracie, If you don't have any seizure symptoms you shouldn't have to take steroids. I didn't have to take them and my doctor didn't recommend that I take them.
Hugs, Susan
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Gracie - I am a week out of Gamma Knife (with the frame, not the mask). I declined the dexamethadeath. The nurse pushed a little. I told her to check with the doctor. He said fine, did not even come over and talk about it ... just told the nurse to let it go.
I am doing fine. Very glad I declined dex for a long list of reasons ... I am getting signals that you might need to have the treatment done elsewhere. This is absolutely your choice. These are very serious issues you raise. The fact that one of your nostrils is blocked is BEYOND unacceptable to the point of being a matter that should require medical review and CENSURE.
Early on, when I was first diagnosed, the neurologist asked me to fill a prescription for dexamethadeath to use if symptoms occur. I did. It sits on my bureau. I WILL use it if I have neurological symptoms like seizures. It's just not necessary if you are not symptomatic.
In the past week, since the procedure, I have had some fatigue. I've had a feeling of pressure in my skull... there is inflammation. There should be inflammation. Inflammation is part the healing process and that is part of the reason I do NOT take dex, but it made my head feel fragile. I was a little wobbly, I did not take on any major task I could not get out of to rest. I did hike every day including some longer hikes with altitude. I was very active cooking with my family and my brothers family who were visiting. I did sit down and rest a number of times.
I had swelling in the eyes which they say is expected from the screw holes with Gamma. I did ice my eyes and the screw holes every morning for 30 minutes. I was supposed to do more, but I was busy with family visiting and that more or less controlled the swelling. I also soak in an epsom salt bath every day for an hour to heal my skin which gets lesions that do not otherwise heal due to chemo. I suspect that the epsom salt bath helped the wounds from the frame heal as well and I highly recommend a good long soak in epsom salts as often as you can swing it.
Day 5 after the procedure the screw holes from the gamma knife frame started hurting. They still hurt mildly today (day 8). The pain doesn't feel wrong, feels like part of the healing process, but all stuff that you have to slow down and care for, a bit.
Overall, not pleasant, some adjustment, but not hard.
Never for one minute during the entire procedure did I feel uneasy about the team, the treatment choice, the procedure, or what I was being asked to do. This is how it should be for you. That feeling in your uneasy feeling in your gut is something you need to listen to ...
>Z<
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Z, totally agree with what you have said and advised. RO nurse is supposed to call me back this afternoon. Will have a serious conversation about all of this. Also seeing my regular MD this afternoon to go over it all with her, she and my MO are really good friends, went to med school together and still keep in touch. She is going to be an invaluable asset going through all of this! Will let you know what I hear
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