Question for those with brain mets

[Hazel Joyce]

I have had a headache on the top left side of my head for 3 days. I very rarely get headaches. I have an appointment with the onc NP tomorrow. My question is: Did you have symptoms of brain mets before the tests, or did they find the mets on a test before you became symptomatic?

Thanks!
Jean C.

[Believe51]

Hubby never gets headaches, I get the migraines, but he was getting a few that he thought were from pain meds (he never took medications, sugar, etc). We demanded a scan and thankfully so, we found he had 5 mets ranging from 4-9mm and the rest were what they said looked like a 'salting'.

If we waited without the scans, 3 months and he would have had very bad symptoms. I truely suggest that if your headache lasts for another day or two.....MAKE AN APPOINTMENT!!! DEMAND A SCAN IF NEED BE!!! (This is ALL about you)

I will include you in our prayers and hold you close to heart. Please remember, until you find out what is happening==do not panic. Try to stay focused and troubleshoot if anything is different, so when the doctor asks that question, you have a comeback. Ex: Are you a coffee drinker that maybe is not drinking the usual amount?? Have you been taking pain meds at a lesser amount than normal or more than normal?? Allergies?? Stresses?? (I know, of course there is stress!!) etc, etc....

Best of luck Sweetiie, you will remain in my positive thoughts!!!

Waiting For A Miracle...and commanding one soon..>>Believe51

[Emmay]

Some people on this board had no symptoms when brain mets were detected by MRI. Others had headaches, scheduled an MRI, then were diagnosed...and others still, had headaches, worried, got an MRI, and nothing was found. Be proactive and schedule an MRI -- if mets are found, they are far easier to treat when they are small.

[hutchibk]

I had no symptoms at all. My brain mets were discovered incidentally. We had scheduled an MRI to measure the bone met on my neck and I asked if we could look at the brain while I was on the table, as it had been about 18 months since we had done a brain MRI. My Onc agreed so we did it. We had seen a small incremental increase in my tumor markers in the month leading up to the MRI, so that also contributed to the decision to look at the brain. But, no symptoms at all before or since we learned about them.

[Beckie]

My oncologist was reluctant to order a brain MRI without symptoms, but after consulting those on this site who had no symptoms, I got my MRI and found the mets. Your headache may not mean anything but knowing, getting the MRI makes sense for Her2's. Getting the MRI and finding out you're clean would be great, or getting it and finding mets while they are still small and starting treatment also makes sense. Knowledge is power. God bless.

Beckie

[LindaC]

I suffered with a headache for three weeks I to thought it was from meds,went to the hospital and had mri and was told brain mets.and I caught it early.

[lexigirl]

Jean,

I had a headache that only seemed to bother me when I first got up in the am and before bedtime. I was afraid I may have had brain mets. I went and had an mri and everything was okay. The funny thisg was after I had the mri, I quit having the headaches. Probably best to have one done if you haven't ever had one.

Thinking of you and saying prayers,
Lexi

[lu ann]

While looking for the cause of the numbness and tinging in my left hand I was ordered an MRI of my media plexis and my cervical spine. A small tumor showed up in my cerebelum. A whole brain MRI was ordered in June and found the previously dx skull met from last Fall surrounding my optic nerve. I was in the Emergency Room June 24th with double vision. I started WBR the next day.

It's wild how things that have no real connection can lead us to a diagnosis of another problem. If I hadn't of told my husband about the numbness and he hadn't of told my doctor, she wouldn't have known to look furthur. I have the tendency of sucking up symtoms and my husband tells on me everytime. My mastectomy scarline turned pink a couple years before I was dx. with mets. I had my suspisions but blew things off. I had been in and out of the Hospital with biopsies, kidney stones, surgeries etc. etc. and I didn't want to do it any more. Sticking my head in the sand did not make it go away. I don't know if an earlier diagnosis would have made any difference, but we all need to read our bodies and be pro-active in our care.

God is taking good care of me, though I wish He would give me His Devine healing, but for His reason, He is going to let me keep walking around that mountain in the desert until I get what He is trying to tell me..

They say if you have a symtom for 2 weeks you should let the doc. know. Otherwise you will drive yourself crazy with every ache and pain.

Brain mets was my worst nightmare but I got through it. It was rough, but doable.

I wish you God's Blessings and NED when you have your tests.
Lu Ann

[hutchibk]

About a month ago I had a week of freaky lightheadedness and dizziness, mostly when sitting but not at all when walking. I was worried that it was a symptom of my brain mets. (especially since I have chosen to sit still on rads and see what the Tykerb/Xeloda does to them). I saw my onc during that week and described it to him. He asked all the appropriate questions and did the appropriate exams, but wanted me mostly to keep an eye on my walking... if I started stumbling or walking like I was drunk, then we would have cause for concern. We also speculated about the fact that the mold counts in Texas are off the chart this summer because of our non-stop rain, and perhaps it was an allergy symptom. That was what he felt was more likely. I went home and the next day I started a regimine of Allegra, Nasalcrom and 3 Motrin every morning. By day two, my left ear started popping like when you are driving down a mountain or it is drying out from having water in the ear. It popped sporatically for the next day and a half. And, by day two, my dizziness went away. I told the onc what I had been doing and he said that the dizziness had apparently been from fluid collecting due to allergies/mold, and then the popping was because of intermittent opening of the Eustachian tube that was swollen and causing the fluid to collect in the middle ear.

What a relief that was! So I just keep taking my Allegra every day and haven't had any dizziness since. We have my next brain MRI scheduled for Aug 13.

[Adriana Mangus]

Dear Brenda:

My MRI brain is on August 13 as well. I was scheduled to get one done on Thursday July 26 and I panicked! I felt so stupid afterwards that I called the scheduling department right away to get another appointment. How do you get to relax before the MRI? Any ideas. I appreciate a response.

I had a Brain Ct scan a year ago, but I heard that it's not as accurate as the MRI. The Ct scan was clear.

Thank you Brenda

[hutchibk]

Hi Adriana- The MRI is nothing to worry about, really. It is just a series of fairly loud magnetic clunks and vibrations. (I find it much easier to tolerate than Bone Scans, because when that machine sloooowwwwly makes its way over my head at 1 mph, 1 inch from my face, it FREAKS me right out. LOL.) My first couple of MRIs I chose to do the open-sided machine as I was worried about feeling claustrophobic. But I am not typically a claustrophobic person, so I switched to the new regular machine at my rads office and it was no problem. They have a multi-mirrored contraption that they put above my head that allows me to see the room and not the machine. It is pretty awesome. The hardest part is staying really still for 30 minutes, especially when something starts to itch. Which never fails. I usually close my eyes and start doing math in my head (like adding up all of my medical bills) and before too long, the vibrations kind of lull me into a good little doze. They do give you earplugs to help muffle the sound, and to protect your ears from the higher frequencies. They talk to you pretty regularly over the microphone to check on you and ask how you are doing. I know some folks who take a xanax before an MRI. I find that I don't need one, but I know it really helps for some...

[Believe51]

Hope you know that I sometimes feel funny writing here not being the one sick with BC, but I do have other health conditions; in the past I needed a hysterectomy at 30 years old (refused hormone replacement therapy...thank God for that today).

I just want to say that the unknowing was the worst for us, the stress it created was hard to push away at times, and still is (scanity). Not knowing, taking the test, waiting for the results..nightmare...nightmare...nightmare!!

Try to look at it like this, (and please do not get offended):

The worst day of our lives for my wonderful husband and I was not the day we first heard the word CANCER!!! Our worst day was the day before.....the day before we did not know what we were up against, we had no way to fight back not knowing. The day of diagnosis was the first day we were empowered...the first day of our battle.

Now I do not have the advice about what to do before the scans to avoid this stress, but we tend to have those same feelings too. Radiation to my husband's BRAIN & PELVIS was rather scary to us and still is, but we are almost through it. That test said he had many 'salted' areas of the brain and 5 mets that were 4-9mm each. We must have a night to ourselves to ponder (we do not ponder about the test, the waiting, the results..). Rather we talk about our 3 1/2 year old granddaughter and wanting to watch her grow. Do not get me wrong, we are all fighting for the same thing whether we are effected by BC or the caregiver. The reason for this fight is for the same reason as anyone else has (we all want to watch our children/grandchilren grow, stay near our spouses, to even go to work like he once did).

Pushing away those feelings that come with the whole 'scanity' thing has to be the hardest thing we have ever done. Try to tell yourself that once you find out, good or bad, then you have the ammo to fight whatever comes your way. Scary as it is you will have been empowered!! If the test comes out clear, then you have spent the last how many days worrying. If the test comes back not so good, then you have the power to plan your next course of attack.

You have always remained in our prayers and are there even more so today. I shall light a candle tonight as I do every night. One candle is always just for my husband, the other is just for my friends. Tonight I will be lighting two large Yankee Candles that are 'Wild Cherry'....hope you like fruit Sweetie!!

Sending out humungous hugs and prayers that you can find the peace to follow through with this all. And again, you are always close to heart and mind. Count me as a distant supportive friend. If we all pray from different parts of the world, we gotcha covered!!

Waiting For A Miracle....and commanding one soon>>Believe51

[hutchibk]

So true, so true! The apprehension associated with waiting for what might be "less than happy" results from a scan is at least 50% of the battle. I love the term "scanity" - I like to think of it as the sanity that we need to tap into every few months in order to approach the process of scans...

I have never been too afraid of my results. Don't know why. I guess because as Believe says - info is power. I just always assume that it is possibile that something new will show up, so I am usually fairly prepared and ready to dig in and solve whatever it might be. When it happens, of course I am disappointed, but it's not a huge surprise. Then, on the flip side, when nothing shows up or if something shrinks or disappears, I am thrilled!

[Andrea Barnett Budin]

I was never a pill taker, but bc changed that. My oncs said -- You know you don't get a medal for suffering. There is no reason for you to be in pain. They do not give out awards for such things. Take the pain pill. BEFORE it gets bad, before it gets out of hand. Be good to yourself.

Before a brain MRI, I confess, I take an Ativan. In fact, my onc told me to take 1 the night before as well, to get a good night's sleep and not worry. He's the one, in '98, who pushed me to do Taxotere, the most highly aggressive weapon at the time, to fight my highly aggressive ca. Tailor-made. A mean nasty drug that did the job, so I love it.

In the MRI machine, I doze. I bring my Andreas Bocelli Romanza CD and they give me headphones and I drift into reverie. I have my husband drive! This last time, I woke and it wasn't quite done. I decided to be brave (super serene from my one little Ativan) and take a peak. It was WAY BIGGER in there than I imagined. I thought the machine would be inches from my nose. It was roomy. Or so it felt at the time. So, now, I don't think I'll need the Ativan next time. I am a bit claustrophobic, but this is not what I'd envisioned. THE REALITY IS RARELY AS BAD AS WE CONJURE UP FOR DAYS, EVEN WEEKS BEFORE. Have you noticed that?

As for INSCANITY -- I still get it. I request a same day report, scheduling myself for the first appointment of the day, to allow TIME, for the report to be emailed to my doc who calls me. I call the doc the moment I get home and remind his nurse that I will be sitting by the phone, with my husband, awaiting their call. After all these years, we sit on pins and needles waiting to hear -- STABLE. We bought some more time! Yeah! Celebration. In '98/'99 we'd get exact measurements of each and every multiple tumor in my liver and compare sizes from the last report. Paul would take the square root which clarified and seemed to magnify what didn't at first appear to be much progress. We (the Taxotere, Herceptin, me and Paul and my oncs) knocked every damn cell out. I DID get in the way some, but I am glad I took the most difficult path. It was just what I needed. Facing lousy odds, I just did what I had to and prayed and focused my ENERGY and thoughts, meditated, used guided imagery and took (and take) heaps of supplements to keep my immune system in fighting spirit and all systems cooperating in HEALING.

This is what I wish for all my Sisters. Don't just ask for a miracle -- insist on it -- call it to you, with the power of your consciously chosen mental dialogue that plays out in your head all day! Signal the Universe with the purest most passionate ENERGY you can muster, and it will sense your vibrations going out and match them IN KIND!

Sending you loving, healing energy and prayers all... ANDI :)

[Believe51]

Amen Andrea, that is what I am doing right now.

Waiting For A Miracle.....'and commanding one soon'>>Believe51

[Grace]

Jean--I had an MRI just a few weeks ago, worried about brain mets. I didn't have headache, however, but dizziness and nausea. The results were negative and I was so relieved. I put off telling my oncologist or anyone of my symptoms for a while, as I was afraid the test would come back positive, but finally told my oncologist and he ordered the MRI. The weeks of anxiety I went through thinking it was mets was far worse than the anxiety of waiting for test result.

I found the MRI very easy to do, except the contrast part. Because I was in the machine when they had to access vein, I couldn't direct them and at first they went for a vein that never works, with lots of pain and bruising. So if you decide to get one, make sure they understand before they start which veins are acceptable and which aren't. Other than that it was a very easy test compared to some others I've had.

I suspect most of us get headaches for a few days or so, for whatever reason, and in the past we would have ignored them. I did tell my oncologist that I was embarrassed he'd think I was a hypochrondriac. I liked his response: "Before cancer you would have been; after cancer it's not possible. Always be concerned about symptoms."

[Hazel Joyce]

Thanks to all of you for your wisdom and support! I went to the onc NP today. She ordered an MRI which I'll be having on Sunday morning. (I had my first brain MRI in January before starting chemo.) I'm going to take Ativan beforehand. The NP said that I'll get the results by Monday evening. I'm hoping for a sinus problem!

I really appreciate everyone's input!

Jean C.

[Andrea Barnett Budin]

Jean,

Did I say that when I take an Ativan (other than before going to sleep) -- I make sure someone else drives! You can't predict how you will react, but I wouldn't take a Xanax or painkiller and DRIVE!

Lots of luck to you. Hoping for a bout w/the sinuses. Or stress. Or anything other than mets. Will say a prayer for you, and for Marie's husband, and for Adriana and for Brenda and all Sisters in need of one... LOVE, ANDI

[hutchibk]

My center always accesses me for the contrast before I go into the machine. I would think that that would be standard procedure... hmmm.

[Hazel Joyce]

At my place, they don't start the IV until they're ready to inject the contrast. I don't mind the noise or the proximity of the machine, but the IV start and the contrast injection drive me mad! I'm going to tell them that I would prefer that IV therapy start my IV before the test starts.

[VaMoonRise]

Several weeks ago I started with a terrible headache at the base of my skull on the left hand side that radiated upward over the top of my left ear that would not go away. I would wake up with it, go to bed with it and start all over again the next morning with it. I thought it was tension headaches which I had never had before in my life but just by the way it felt I thought that's what it was. I would go from the bed to the couch everyday and couldn't even bear sitting up, I was only able to get some very minor relief by laying with my head on a pillow and if I turned my head a certain way it caused even more pain. I was also having awful bouts with nausea. I mentioned this to the nurses in the infusion room and to the NP and they kept telling me that it was probably side effects from Gemzar. I haven't been on Gemzar for very long but I couldn't imagine that the side effects would be like this because I had been on harsher chemo's before without feeling this badly. I finally was able to push them to do an MRI of the brain which I had never had one done before since being diagnosed with BC. My Onc always wanted to wait and only do one if symptoms appeared. I much prefer having them done periodically to be on the safe side and to be able to catch something as early as possible but I don't know how often they recommend having MRI's done for patients with mets.

Well, they did the MRI and unfortunately it came back showing two definite tumors and a possible third. One is located in the cerebellum and the other in the cerebella. They started me on WBR and steroids immediately. I just finished 15 doses of WBR this past Thursday. The side effects of the radiation and steroids have been a bit tough, they range from fatigue to insomnia, hair loss (again), sore scalp, sense of taste all messed up along with thrush from the steroids, emotional rollercoaster, and not sure if this is from the brain mets or meds but I have been wobbly on my feet and sometimes feel loopy in the head, lol.

They stopped the Gemzar immediately while I went through WBR and haven't started me back on it as of yet but have continued with me on Herceptin once a week. I just had a CT scan done yesterday of my chest, abdomen and pelvis which I should have the results of on Monday. I am very nervous about the results of the CT scan because I had failed to respond to my last treatment of Navelbine for liver mets and hadn't been on Gemzar long before discovering the brain mets. I am praying that there are no new areas and that the liver hasn't progressed uncontrollably. I also hate that I have to wait 6-8 weeks for another MRI to even find out if the WBR has had any effect on the brain mets. I am trying my best to stay positive and keep telling myself as long as there are no new areas and even if the liver mets have progressed some more that we can formulate a new battle plan to beat them back again. Not knowing if they will put me back on Gemzar or not or start with something else now is nerve racking too. I just hope that after I meet with my Onc on Monday and get the results of the CT and have some kind of plan in place that I will feel better. I will also be glad when I can stop taking these steroids all together.

I would tell anyone that has some type of symptoms whether it be headaches, visual disturbances including floaters, numbness in fingers or toes, unsteady gate or just a gut feeling to really push for a MRI. Be proactive because no one knows our bodies like we do ourselves and always better to catch something early than later.

I am so glad that you are having the MRI done Jean and I will be praying that it is sinus problems or some such minor thing. My thoughts are with you and sending lots of good vibes your way.

Love & Hugs,
Nicola

[Susan2]

When I go in for MRI's, they give me a cloth to cover my eyes. It's saturated with aromatherapy to relax me. I meditate until I fall asleep.

[hutchibk]

That's a great idea! A lavender eye cloth...