Brain Mets - Can we pull the threads together?

[mamacze]

Thank God for Joe, Christine and others who are keeping us up to speed on the need for a regular MRI for brain mets. Joe, can we pull the brain mets and brain MRI threads together? I am wondering what if anything is the scanning protocol for us Her 2 +++ ladies who have been on Herceptin for awhile. How often should we get Brain scans; when should they start? Also, I wish all of you sweet angels out there who have brain mets would share with the rest of us just what were your symptoms... Would you be kind enough to share them with the rest of us?
Love,
Kim From CT

Kim......... the 'symptoms' of brain mets can be so varied, to NONE. It depends on size, location and any edema involved.

In my case I've had: 1st dx visual half moon shaped light show of peripheral vision of only one eye...which came and went over a period of a month or so. A little bit of increased dizziness. This was from a 1.5cm tumor and a small 6mm. The small one was behind my eye.

2nd dx of 14 small lesions: NO symptoms at all. And this was over the course of 15 MONTHS, biding my time getting them all addressed/treated with focalized rads.

3rd dx: again no symptoms at first. But with increased size and location in cerebellum and brainstem/pons, 24/7 severe dizziness overnight.

This has not been talked about before but I think it needs to be addressed: There is a pretty good percent of people dx'd with cancer who, at autopsy, are seen to have brain mets, yet were never dx'd with them while alive. In other words, you can have them and they don't bother you, nor do they 'kill' you before death from other causes or progression elsewhere in the body.

It's yet another coin toss with cancer. Unfortunately or whatever, since Herceptin came on the scene helping those of us Her2+++ live longer, the brain continues to be a bit of a hideout for progression of our cancers. I'm still NED in body nearly three yrs out from my doses of Navelbine/Herceptin.

To those who will worry anyway, reporting 'symptoms' can easily get you a brain MRi with contrast. Not Ct scan.

hugs,
pattyz

[StephN]

Good to see you posting.
Do you have any news or still waiting for the next round of scans/checkups??
Hopefully you have some improvement in the dizziness, etc. since you feel like sitting at the puter and looking at this board!

I have my next followup brain MRI next week.
Take care now.

Steph........ you are so sweet, you know! I am on my second rnd of Xeloda/Temodar..near the end of it actually. And am still taking Meclizine for the dizziness...but at half dosage. I am fairly free of dizziness at present, which is such a huge relief! Actually got out and did a small amount of pruning without much incidence!! This really made my day )

MRi on the 29th early, then onc appt in afternoon to 'see' results...... Then leaving for nine days Oct.3-11 for a little trip to a favorite place. I think your MRi is around the same time??? We'll hope for good results for both and keep 'in touch'...
love, xoxooxpatty

[mamacze]

Oh PattyZ,
This has been so helpful to me, you are very clear talking about your symptoms or lack thereof. There clearly is no set type of symptom; nor is it clear to me if brain mets could progress before a reoccurance of lung mets. I wonder if brain mets grows quickly or slowly. It seems like more and more of us herceptin girls are getting brain mets. You say you are NED in body 3 years out from your doses of Navelbine/Herceptin...was that your first line of treatment? Does "NED in body" mean that within those 3 years you do not count your brain mets?
You are incredible, thank you for sharing so much. I am curious to know how mets to the brain unfolds; I am beginning to see it does not unfold "typically"...
Love Kim from CT

Kim... I'm glad I could be of some small help. I can't tell you how much research I've done over the past three years!!!

The growth rate of brain mets is variable as well.... just as in all other types of mets.

The Navelbine/Herceptin was my first and only line of treatment for my mediastinal mets, spot on lung and spot on pelvis.

And yes, I mean NED in body only and do not count my brain mets in that NED state.

Also fyi: my first dx was 12/99 Stage IIIb, Inflammatory and Invasive with two tumors, 6 of 26 nodes positive. Dx of mets 7/'02 two and a half yrs post original dx.

hugs,
pattyz

[Celina]

Patty, I was thinking about you yesterday...wondering how this combo is working for you. I mentioned it to my sister and she asked if you have had any results...please let me know.
Glad to hear the dizziness is better and have a blast "in your favourite place"
Celina

[ewaters]

Hi, this is my first time on the site. By way of background, I was 5 1/2 years out when mets showed up May 05. Had a bad cough and leg pain. Cat and Bone scan showed mets to lungs, liver and bone. Doc ordered a brain scan and 3 very small spots found. i am on weekly chemo of Taxol, Carboplatin and Herceptin with Zometa once a month. i have scans every 8 weeks. Everything has shrunk dramatically. the problem is that although the brain mets have also shrunk (surprisingly, to the doctors), a new 2mm spot has shown up as well as some questionable spots (per a second opinion). Now i have doctors split on whether i need whole brain radiation or stereotactic radiation. I have been pretty frightened of any radiation to the brain but seem to be realizing I will have to have some. The doctors seem to differ regarding the likelihood and severity of cognitive loss with whole brain radiation. Can someone out there give me feedback about the side effects of both types of radiation? Severity, longevity, etc. I am 43 years old and not having any other health problems. I have no physical symptoms from the mets. Thanks. Beth

Celina, I'll post results in a new thread next week. Ofcourse, am hoping to post with VERY good results...

hugs, xoxoxopatty

[StephN]

Kim, and all -
My brain mets were growing without ANY symptoms. This is because they were in my cerebellum or lower brain. There was one clue - my CEA tumor marker was slowly rising. The large met behind my left ear was one inch in diameter when I had my scan. A smaller one was about a quarter inch. I had Gamma Knife and did notice a little effect to my thinking. Since I was on the Decadron which is very strong, I thought that could have been the cause. The length of time to blast the large tumor was about 55 miinutes and this also caused me to lose some hair and it kept thinning for several weeks. Otherwise, the whole procedure was painless to actual tumor sites.

Best wishes to you all with or without brain mets. I feel optimistic about my mets being "goners."

[mamacze]

Hi Girls!
Oh, Beth, WELCOME to our discussion boards; I am a stupid when it comes to brain mets, but as you can see; we have some wonderful sisters who have been to the moon and back with experience (lilke Patty and Steph) and we all benefit from their experience. Patty, I am so glad to hear your dizziness is starting to disappear; I look at it as another chance to slip into a few minutes of denial and enjoy every minute of your special spot, your family, the grass in your back yard. And Steph, NO sysmptoms is a bit scary; I can see why Christine says we all should have a baseline and regular brain MRI's. I wonder what the clinical indications are to doing focalized rads vs whole brain and what are the indications to stop treating? You are all heros in my book; thank you for sharing your experiences so candidly.
Love Kim from CT

Kim, you asked:
<<<I wonder what the clinical indications are to doing focalized rads vs whole brain and what are the indications to stop treating?>>>

There are some cases of single brain mets and cases of several with recurrance of a few more. So, IMO only, it makes sense to go straight to focalized rads (mayber with regular surgery if possible), skipping WBR.

The 'gold standard' is surgery where possible plus WBR. But more oncs are going to focalized rads to 'clean up' area. Where surgery is not possilble, WBR is still the norm first recommeded.

There have been many many studies done using combinations of these tx's. The least successful of all tx's is WBR alone. Doesn't mean it has no successes though.

Clinically, if any brain met is larger than 3cm, focalized rads are not possible. So, surgery if accessable plus WBR. Or WBR alone.

Clinically, if mets are very symptomatic, a high dose of Decadron is started immediately. Followed by one or another type tx dependant on size of mets as I said.

Indications to stop treatment: Where all 'regular' treatments have been tried and failed, sometimes a second course of lower dose WBR is done. Or, if/where available some could go into a trial. Or, in my own case, I'm trying a chemo combination. Treatment stops when there is permanent disabling brain damage or severe progression of other mets indicate death is near or likely soon.

There are more gals who die from progression of their other mets first than from their brain mets progression alone. There is not alot of good info on people like me with brain mets alone...
That is changing though with the advent of Herceptin.

whew!! hope I didn't give you more info than you wanted, lol!!
hugs,
patty