Brain Mets Sisters
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My wife has also started experiencing tinnitus and decreased hearing. One of the leading causes of tinnitus is pressure on the auditory nerve by capillaries.
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Bosco- So sorry to hear you are back in the hospital. Do they know what is causing the fevers? Anything we can do for you? That is so nice of your boss.
I also spent all day in the hospital on Monday. I still have been having localized minor muscle seziures, so they wanted to run tests to try and figure out what part of my brain they were coming from. After being there from 10am -1am, and having a CT scan, an eeg, and a spine MRI, they still couldn't come up with an answer other than it is probably my brain trying to heal itself. They want to give it some time to see if it dies down and don't want to up my keppra yet. It is mostly in my left side and not causing any major issues, other than some discomfort so they aren't too worried. Ugh.
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Hi MammaRay,
I'm sorry you find yourself here but the ladies on this board are so very helpful. I also had a small met in my temporal lobe, but on my right side. It was removed via a craniotomy and then I had SRS to the tumor bed a month later. My current medications are hormonals only, as my original breast cancer and the brain met were ER/PR+, Her2-.
It's been a year since my surgery and SRS and my last brain scan in March was completely clean. I'm now on a 6 month brain scan schedule with my neuro-onc.
Best of luck to you as you start this journey.Carrie
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What hormonal meds are you on? Some AIs can penetrate the blood brain barrier but I don't believe Tamox can. I'm on Zoladex and Femara; of course I was on them when I got the brain mets Dx but I had some very lazy tumors so there's speculation that Femara slowed down growth
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I was on Tamox initially and continued with it for a year. SEs got to be too much for me. I switched to Lupron with Arimidex in January. So far so good.
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tripleP - I have new congestion in my mastoid sinuses as a result of having partial brain rads. It seems to be worse on the left side than the right. Sometimes I hear crackling in my ears. My neuro-onc said nothing really can get in there and hopefully my body will resolve it. If it doesn't then having my eardrum lanced and tubes put in is a possibility but we aren't there yet. Maybe this is helpful info to you.
MammaRay - We were all freaked out when we learned that BC was in our heads. The thing is that BC is radiosensitive and the best, least invasive treatment is radiosurgery. Better to hit it hard early, and with things like water-based fasting to try to make rads more effective. You can do this
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Rad Onc is still being a pain. The MRI's have been approved by two separate SRS MDT's for Gamma Knife, yet he is still saying there is LM. Nobody else can see it.
This makes it hard for it to be paid for on the NHS. He has now rejected it at three separate neuro-oncology MDT's.
He has agreed to look at it again with his Neuro radiologist on Monday. If it isn't agreed this week, I will pay for it to be done privately. An upto date scan is being obtained on Thursday with thinner slices.
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if it is LM it is early onset and not late disease progression. He could be right as it happened to me. What does he want to do, WBR? If it is LM then she should be able to start IT Herceptin -- and the only way anyone has been able to get that off-label is with LM. I'd try that before WBR, well depending on where her lesions are
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separate topic... Has anyone having had WBR experienced the scalp tightening? I was having some awful occipital neuralgia like pain over the weekend coming from my irradiated back of head. It might have been triggered by some chiro and phys therapy last week, which is what I'm hoping. I'm hoping with massage, rest and time that it settles down. Cocking my head made it feel like I had someone whacking my skull and coughing felt like screws going on my forehead. Ugh
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Yeah, he wants to do WBRT. As I said 14 other experts neuro radiologists, neuro surgeons, oncologists, and a professor who has done Gamma Knife for 30 years have looked at it, and they have all said no sign of LM. My wife has had no symptoms. Surely if there was LM over this period of time, she would have some symptoms?
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Agness/Ann,
My wife had WBR, but no scalp tightening. She had some headache at times, but not more frequent than in the past; just a dull headache that was taken care of by Aleve and sleep.
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Freakzilla,
My wife has LM, but I'm not sure what the symptoms would be other than showing on the MRI.
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Where the red line is where he's saying is LM. Everyone else says it's a tumour on the dura.
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Did they scan from different directions? Also, that doesn't look like much LM if it is that type of progression. I say to these docs who say WBR is the only way (knowing that sometimes it is), if it is so easy and not permanent then why don't you irradiate your brain? I was told repeatedly that WBR was the standard of care, it was recommended to me 6-7 times since August and I declined. If this guy won't cooperate find someone who will. Rads is very much based on available equipment and staff training and all machines aren't the same.
Thanks Giovanni. I wish I knew why my body was clamping down on the irradiated scalp and skull so much. Damn it hurts. I've got a message into my RO and tomorrow I go get another craniosacral massage. Ow!
Ann
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They scanned from different directions and that is the only area which shows up. It's 7mm. As I said nobody else thinks it's LM, only one Rad Onc.. Everyone else says no sign of LM anywhere.
The problem is he has to agree it for it to be paid for by NHS. I can pay for it privately but it's about $25K I'll give it to next Tuesday and if nothing has happened we'll get it done privately.
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Damn. That sucks. Can you travel to a different NIH facility? Can one RO really hold that much sway? Forget I said that because I did have LM and the radiologist called it and my neuro team still hesitated for months in my case. Argh! $25K is a chunk of change. Will NIH pay at least for peripheral nursing and staffing supports? My insurance didn't pay for proton therapy to the chest wall in 2014 but they did pay for all the support costs which brought 35 fractions down into the $15K range.
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My neuro-onc wants me on 2mg of dex twice a day to see if it helps with my headaches. So shitty this stuff.
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Agness- I'm also on the same schedule of dex. As a tip, don't take it right before bed. It may cause problems falling and staying asleep. I take mine at 7am and 7pm
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thanks for the reminder about the sleep issue
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Hi Everyone,
My mom is Her2+, and has been a relatively stable stage 4 for the last 5 years. About 2 months ago, they found mets in her brain. They tried to take it out with a surgery but it's spread throughout like a mesh over her blood vessels in frontal lobe so they couldn't take out much. They put her in for WBRT because it's so big - and there was another one or 2 small ones in her cerebellum. She was supposed to have 15 days of radiation (with weekends off). After 9 days, she didn't want to do any more. She was in really bad shape - really tired, feeling awful, lots of trouble walking, etc. She took that Friday off and then Monday and Tuesday as well. Tuesday her doc said if she didn't want to do radiation anymore - since they hadn't gotten what they should - it would be time to look at hospice because systemic drugs won't help with this giant tumor. She decided on Wednesday to go ahead and continue the radiation but on Thursday the machine was down so she had to wait until Friday. So she did Friday and she did today and again said she wanted to stop. She has 3 days left. Anyone have any suggestions? Should we not encourage her to finish out the 3 days? Are there other treatment options for her that we should mention to her doctor? Should we encourage her to finish her treatment? We're kind of at a loss here on what to do. I do know she feels awful. But it sounds like it gets better once the treatment is over. Any advice would be wonderful. Thanks!
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4 Neuro Radiologists have looked at the scan and can't see LM. From another conversation the Onc sad the Rad Onc had a patient with tumours on the meninges before. It was treated with Gamma Knife and some time in the future the patient developed LM. So it seems if patient has a tumour on the meninges, he won't refer for Gamma Knife. Nobody else can understand why. Unfortunately he has a lot of power.
The NHS has a policy to be able to have Gamma Knife. My wife fits all the criteria, and they are still refusing, down to one doctor. I'm sure the press would like to know how a 33 year old is Mum being denied life saving treatment she is entitled to for no reason. Fortunately I have the money, some people haven't
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F#%k! Yes, there is so much bias. In my case my tumor board didn't want to believe it even though you could see it and what else could it be. Again, even if it was on the meninges, it's early stage disese. What about IT Herceptin? Any luck finding that in your country?
Hug
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longdistance - it sounds like your mom has LM spread. They should put her on off-label IT Herceptin as it works against HER2 especially in the case of LM spread. If she isn't up to having surgery to put a port in her head she can start with having it injected into her lumbar. Do you need more info about this. I'm sorry she isn't feeling well.
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Freak, I can feel your frustrations. I applaud you to continue fighting for your wife's care. I have no experience with LM, only GammaKnife. I hope that she can get her needed treatment ASAP.
I had a frustrating appointment yesterday with my onc. I've been on Lupron for ovarian suppression since January. It's not working. He wants me to have my ovaries out. I know I need to do this, just hate the thought of another surgery and losing another part of my body. This damn cancer.
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Goodie - sorry treatment isn't working for you. In looking up alternative AIs I found this article; the first part break down support for Chrysin working in the body but the second part at the bottom talks about how indole-3 and DIM help support liver detox. You might want to try that approach for a few months.
http://warddeanmd.com/chrysin-is-it-an-effective-a...
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Thank-you for the article Agness. It seems to support that, as of now, my best bet is ovary removal and an AI.
Unfortunately, there does not appear to be any effective natural inhibitor of aromatase. Those who require the specific benefits of aromatase inhibition (for now, at least) must rely on the safe but expensive prescription aromatase inhibitors. Nevertheless, some of the benefits of aromatase inhibition may be gained by enhancing the metabolism and excretion of estrogen by using I3C or BioDIM.
I will do some more reading on I3C and BioDIM, but without strong research results to back up their effectiveness, I don't feel it's an option to discuss with my onc at this point.
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Understandable. It is difficult having to face surgery but with the cancer feeding on estrogen and your body running too hot hormonally it is a more direct path to the result.
Have you tried Zoladex shots instead of Lupron?
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My onc doesn't feel that I will have a different result with Zoladex. I feel a little better today after talking with my onc and my obgyn. My gyn will do the ovary removal laparoscopically, so it's minimally invasive and my recovery time should be short.
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Hi everyone,
I'm here to reach out for help. I was first diagnosed stage 2a er/Pr + her2+ in June 2012
And was diagnosed stage 4 feb 2016. With one large tumor in my cerebellum. I feel lost and angry and so scared that I'm not even getting out of bed. I don't feel I've been given any info or hope. I'm 43 and have a 4 and 6 year old and I need to be here as long as I can. How do I do this? I can't stop crying.
Anyone that can offer me advice I would greatly appreciate it:)
Thank you,
Jennifer
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Hi Jennifer,
How big is the tumour? If it is bigger then 3cm, it should be surgically removed, as long as it isn't in a eloquent position. If it's smaller then that Gamma Knife should be performed.
What treatment have your doctors offered?
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