What were your brain mets symptoms?

Anonymous

And did they progress in severity or did they stay the same/get better at times?

My onc is putting in an order for a brain MRI and I'm scared

Lolis197138

hi,

I have no experience re to your questions but I am keeping my fingers crossed for good news and hope that someone with more experience on these symptoms chimes in.

Keep us posted!!

letranger

Hi there,
My symptom was the worst headache of my life. Got an MRI right away. I had 4 brain mets initially. Nothing helped relieve it. But there are sometimes symptoms of dizziness or a seizure. Get the MRI and take it from there. I was pretty scared, too. So it's normal. Pretty scary stuff dealing with the brain. Keep us posted and join us on the brain mets sisters thread if need be. But I hope everything is clear. Btw: my headaches are also due to migraines. That may be the culprit for you. My best to you. Xo letranger

Anonymous

Actually, although I've been prone to migraines since 2008, the main culprit in this case has been intense episodes of arm tingling and twitching. I first chalked it up to treatment (my surgery arm and I do have cording and mild LE) but I've had about six now over the course of two months and decided it was time to check things out. My cognitive and motor function is good and I'm not in any pain, so if there's mets, I want to zap them bfore it gets to that point.

letranger

best to check it out. Her2 likes CNS- not to scare you. But hopefully it's related to your LE and you can resolve it. I have LE, too, and use a machine and sleeve works wonders. Also see LE specialist who drains lymphatic system. I'm sure you know all this, but writing to support you and let you know we are here.

Anonymous

Yeah, I know of the Her2/brain mets link. It's one reason I unstuck my head from the sand and insisted on a scan. Did you have a scan as soon as you had your headache? One thing is my symptoms haven't been progressive. They come and go and I had arm tingling a week ago but haven't had twitching in a few weeks. So I hope that's a good sign it either isn't mets or I have a relatively slow growing tumor if it is. Thanks and hope you are doing ok..

letranger

yes, I got a scan within a week - you know insurance and authorization. We initially thought my headache was due to degenerative disc at C5, which may have been contributing to it. This was only discovered when I had my first MRI at diagnosis. I think symptoms can vary. But it's good to know if there are any other underlying problems besides mets. My onc seems to believe that my neck problems are what truly alerted us to brain mets. I have several lesions and believe I am asymptomatic. On another routine scan, my lesions multiplied and I had no idea! Many of the gals on the brain mets thread did not feel it until they had a seizure.
Feel free to ask as many q's as you want. But do get the scan. Agreed, I also think it is a good sign that your tingling has stopped. Xo letranger

Anonymous

Fear of seizures was what prompted me to have this checked out. I had one episode about a month ago with major arm twitching. I work in a 3rd grade classroom and I don't want to risk having a seizure out of the blue and potentially hurting a kid. As far as underlying problems, I've read about RIBP, which I seem to have a few symptoms of so if the scan is clear, I want to get evaluated for that before it starts impacting my QOL

letranger

when is your scan? Keep me posted. You can pm me if you want or talking here is fine. Maybe others will join in. By responding here, im trying to bumpup your thread so others may see it.

Anonymous

My onc put the order in this morning but the schedulers haven't called yet.

My grandma died yesterday so I'm trying to keep it together for the sake of my mom while fighting off panic attacks

letranger

Oh hon. So sorry to hear about your grandma. you are so young to be going thru so much.

Do you have a case manager with your insurance? Contact that person and he/she can expedite the order. I have one and she authorizes my orders almost immediately.

Hugs

Anonymous

I don't have a case manager but I haven't had much in the way of scans ordered since dx. I never got the call from radiology today, so I will email my onc tonight or tomorrow morning.

Thank you so much for your responses.

Anonymous

So I had another episode of tingling and throbbing in my arm during a bike ride today BUT it was much, much milder than previous episodes. I didn't experience any twitching, didn't move into my shoulder at all and I had full motor control during it. So while these episodes are continuing, they are regressing instead of progressing which I hope is a good sign

letranger

hey there, just Checking in on you Regressing symptoms are good. Glad to hear it

Hugs to your family during this difficult time.

Anonymous

Thanks. I finally have my MRI set up for Thurs afternoon. Apparently I will find out the results by close of business that day.

I'm wondering if my episodes are related to clonazapem. They started around the time I ran out and couldn't renew my prescription for awhile and got better when I restarted. However, I wonder f restarting the the clonazapem could be maskingsymptoms..

letranger

good you'll get answers on Thursday. You have much on your plate to deal with this week so try not to worry too much. After you can rule out brain mets, you can move on to differential diagnosis . Hugs

TB90

I am not aware of what dosage or frequency you were utilizing clonazepam, but I am aware of suddenly stopping this medication causes a multitude of symptoms and some of them can be very serious. It is very likely that this can be related to your symptoms. In fact, it would be quite unusual to have no side effects from discontinuing suddenly. Let's hope that is the cause. At least then you will be able to manage the symptoms in the future by ensuring you do not run out of this medication. My fingers are crossed for you. ((((hugs)))))

Anonymous

waiting for MRI. So scared.

Thank you for the reassurances tb90. I have certainly learned my lesson on how powerful the benzos can be, even when taken as directed!

letranger

I know you're scared. But still a good chance they are not mets. Hoping so hard for you. You need a break from all this! Hugs, letranger

youngsurvivor14

Has anyone had symptoms of a pressure feeling in the head, accompanied with very occasional moments of dizziness or feelings of nausea?

I've had this weird pressure on the top of my head for a month now, and every now and then I feel slightly dizzy or nauseous. It doesn't exactly hurt, but I have it literally all the time. I really hope it's nothing, but I am really freaking out. I told my doctor about it and she ordered a brain MRI, but it will probably be a few weeks before I can get it.

KBeee

Youngsurvivor, Hoping all turns out ok. Hoping it's just sinus stuff, but glad you're getting it checked.

Brightsky

Youngsurvivor14, Please let me know how your MRI turns out. I am having similar symptoms, plus some weird tingling sensations like pin pricks throughout my body. I also feel like I have major brain fog, dull headaches off and on along with feeling clumsy. I feel ridiculous bringing this up to my oncologist because I had a pCR to chemo.

Anonymous

Not to scare you Brightsky, but my main symptom was tingling. And I did not have a cpr, but I had a very good response...the damn BBB gets in the way of the chemo. I see you had Taxol so it's most likely something like neuropathy from that, but from someone who is still healing from a crainontomy, if it's mets, it's so much preferable to have them zapped with SRS than go through surgery or WBR

Brightsky

Bad at usernames, you are not scaring me :-). I had Taxol 6 months ago. Can neuropathy show up this late? I didn't have a problem before. I guess my issue is that my symptoms are so vague, or they appear and seem to regress (the dizziness has improved). It's just so annoying to have to worry about every ache, pain and weird symptom. Thanks for your input. I hope you are having a good response to treatment

Anonymous

Ugh, I hate being this person. But my symptoms were very vague too. I would go weeks without an episode and then have two in one week. And my symptoms regressed but that was due to restarting clonazapem. I was having very mild seizures and clonazapen is an anti seizure med. I hope you are fine, but some of what you said rang an unpleasant bell for me. And I want to speak up because I absolutely believe that if there's one site of mets where finding them early makes a difference in prognosis it's the brain.

Brightsky

Thank you! I appreciate you sharing your concerns. I am paying close attention to what is going on. Aside from having triple negative one of the reasons I worry about brain mets is because strangely I had systemic symptoms before I was diagnosed. I was fatigued and my immune system went into over-drive. I was being worked up for lymphoma so they did a PET scan. That is how they found my breast cancer. My oncologist worked me up for a bunch of auto-immune stuff and infectious diseases. Everything was negative so they told me that (although rare) maybe my immune system was having a response to the cancer. I worry that a systemic immune response may correlate to systemic BC. And like you said before, the BBB may have prevented the chemo from getting everything. So I don't know. I will keep you posted. Can you share with me what your "very mild seizures" we're like. I feel like I get an "aura" sometimes. A sense of dread/fear/anxiety and then I get a hotflash. It's all weird but I guess at this point everything has a plausible explanation that's not as scary brain mets.

Anonymous

I would have intense tingling that started in my hand and moved up my arm, eventually stopping at either my shoulder or back/chest. This would happen for about five minutes and then stop. It would happen every few weeks although occasionally it would happen more frequently. It was only on the side I had surgery and radiation on so it was easy to chalk it up to that at first. One time, it moved into my shoulder and I had shoulder spasms. At that point I decided I needed to get a scan. But I wanted to get through the holidays first And during that time I restarted clonazapen and my symptoms regressed. But I had already decided on having the scan and didn't let me talk myself out of it, thank god.

ShetlandPony

Brightsky, I'm just popping in to say that it seems like a dread/fear/anxiety aura can be a normal part of a hot flash, as was true for a female family member without bc. For me emotion, including anxiety, usually triggers a hot flash. My theory is that these things are related because the hypothalamus is the part of the brain responsible for both the fight-or-flight response and temperature regulation. Hoping for good scan results for you and everyone else here.

Anonymous

I agree with ShetlandPony. When I get emotional I almost always get a hot flash after. Praying for clear scans for you all.

Brightsky

Thank you so much everyone for sharing your experiences and knowledge. It is extremely helpful and comforting. Having breast cancer sucks but I I know one thing, I am in the company of some amazing people, and for that I am grateful.

youngsurvivor14

I too have major brain fog, but I have assumed that was from the chemo. I have the most difficultly concentrating and with short term memory. I'm still having pressure in my head, but I'm having a brain MRI this weekend. Fingers crossed its clear! Most of the time I'm calm and sure it's fine, but then I have moments of panic!