Brain Mets Question

nowaldron

Hi Ladies,

I hope you are all doing well on this unfortunate journey!

I seem to have a thousand questions lately since I just passed the 3 1/2 year mark. OK, so for those of us who have had brain mets as a recurrence, what were the symptoms? I have had the weirdest headache the last few days. I started back teaching two weeks ago so I was thinking it was just the stress/excitement of a new semester. But, it lingered over the weekend.

Though I rarely, if ever, bother my onc, I wondered if this is something I should share with her. It also seems like I have a slight stiff neck. I live in MA and I was thinking EEE (mosquito borne virus), but I don't have a fever.

I am thinking of giving it another day - before calling onc. What do you think?

Thanks so much :-)

Nancy Rose

BTW, my skin condition turned out to be "abundant Staph aureus" so I am on an antibiotic for two weeks.

3-16-2011

Hi Nancy rose

I see you have bone Mets. I have multiple skull Mets and they leave me with nasty and odd headaches. For some reason cat scans and pet scans did not see my skull Mets but MRIs have. Just another thought for you. I encourage you to call and ask to have it investigated. I was having weekly disabling headaches before I had it looked at and that was silly.

I hope this was helpful

Mary

AllyBee

Hi Nancy Rose,

It doesn't hurt to ask for an MRI just for peace of mind. Personally my brain met didn't give me a headache, the only noticeable symptom I has was vision issues but only just before they found it. I probably had it for a couple of months before that happened. Looking back I had a few dizzy spells but I also have low blood pressure that could have caused that.

I frequently get headaches now but it seems directly related to stress, no new spots on my MRI since July 2018.

Ally

nowaldron

Thank you so much Mary and Ally. I had two spots on my skull when I was first diagnosed in 2016, but have been "stable" since September 2016. My onc calls it "stable" but not "NED" because of the bone mets.

I am supposed to have scans in November (every 6 months now) and sometimes I think my onc doesn't like it when I raise an issue. This may just be me as she is otherwise wonderful and brought me from the brink of death when I was first diagnosed. I am just one of those people who doesn't like to bother anyone.

My cousin is a nurse so she has been monitoring the situation - I told her I would wait until today to see what happens. But, I woke up with the same weird nagging headache; it also seems that my neck is bother me. Ugh.

So, I think I will give her a call and see what she thinks. I was talking to some people at school yesterday (I am a college prof, whoopee!) and she kept insisting that I was only dehydrated. She was only trying to help and she teaches in sport medicine.

Thanks again and hopefully it is nothing! Have wonderful day. It is just beautiful here in Boston today. :-)

vlnrph

For Mary and anyone else wondering why skull mets don't show on PET scans - your brain is using so much glucose all the time, it lights up and covers over any spots that might be present on the bony shell that wraps around it. A year ago, my extensive bone lesions included that outer area but the MRI done to look at the 'gray matter' inside was OK.

I hope Nancy was simply dehydrated or perhaps reacting to the antibiotic she is taking. When I was still working as a pharmacist, we would suggest acidophilus capsules or something similar to help restore normal gut flora.

Maybe eat a little yogurt with active cultures this weekend? Separate your snack from the prescription dose by at least a few hours if possible.

3-16-2011

Thanks vlnrph

illimae

Absolutely tell your MO about the headache. I had a headache that lasted 3 days and was scheduled for a Brain MRI. Mets were found but they were too small to cause the headache, however, finding them before they got bigger made them far more treatable. Radiation (gamma knife) was scary but super effective.

nowaldron

Well, I went for an MRI Thursday night. I am still teaching full time, so a night MRI was not fun, but I got through it. I am seeing my onc Monday for our regular appointment, so I should get the results then. I know, if found, they can treated so I am not totally freaking out. Of course, after living with this disease for 3.5 years, it has just become a fact of my every day life.

My headache has not really subsided, so I am very concerned at this point. Of course, the fall semester just started so I am hoping it is just the stress of being back to school and getting back into my regular routine (up at 5 a.m.).

Thanks for those who offered advice, it was much appreciated.

Nancy-Rose

LoriCA

Just to give you some hope, I had a daily headache for over a month before I told my MO (since Herceptin can cause headaches I didn't want to complain too soon, but I knew these were different), and they immediately scheduled a brain scan. Thankfully my scan was clear and my headache turned out to be due to something else - I was having neuropathic muscle/tendon spasms that I believe are from the Herceptin/Perjeta. They had been increasing in frequency and severity for the past year, and when my headaches started I was having over 100 spasms a day. After we got the clear scan, my MO thought that the constant stress my body was in might be behind the headaches. He started me on a muscle relaxer which reduced 90% of the spasms, and like magic my headache went away.

Keeping my fingers crossed that you get a clear scan too.

LoveFromPhilly

hi friends! I may be having a hypochondriac moment but I have this painful bump on the top of my head. I will be seeing MO in about 1.5 weeks so I can wait to talk them then. It’s probably a pimple or something but ouch! Anyone experience an actual painful Bump with skull Mets?

Thank you for your thoughts!

Philly

nowaldron

Hi Philly,

I know exactly how you feel! I started this thread a couple of weeks ago because I was also having a "hypochondriac moment." I have skull mets and have never had any pain from them whatsoever. I never had a headache or anything else. One thing is if the bump is moveable; if you can move it around on/under your skin, then it might be nothing to worry about.

My headaches turned out to be tension/stress related and I hope your painful bump turns out to be harmless as well.

It is so hard for you and the rest of us to live with this on a daily basis. Every time I feel a new pain or twinge, I am convinced that it is roaring its ugly head again!

So, keep up the faith dear heart. I'm not going to say everything will be fine because I hate it when people say that to me.

All the best,

Nancy-Rose

LoveFromPhilly

Nancy-rose thank you so much for your thoughtful and kind response. It is true that each little thing can cause the “cancer progression” alarm to go off in ones head! I have no idea what that tender bump on my head is but I think 🤔 it may be getting less tender today. These meds make me so spacy that it is perfectly possible that I hit my head on something and just don’t remember it! I’m hoping that tomorrow it has calmed down.

I am sure you were relieved to know the headaches are simply headaches. An easy thing to get worried about since I do believe it could be a symptom of brain Mets although seems like people have symptoms as well as do not. Guess that’s why it is always good, and not weird, to investigate

I’m gonna keep on keeping the faith ! Thanks for the reminder 😊

Hugs!

Philly

nowaldron

Hi Philly,

You are so very welcome. These message boards are great to connect with other MBC warriors. I am not on here often, but this is the first place I go when I am having a "moment."

I hope your onc vist goes well.

Hugs back xxx,

Nancy-Rose