Brain mets discussion- Please share your thoughts

[yanyan]

1. How often should you have a brain scan? If MRI is not an option, would CT with contrast be good enough?

2. Paul has shared his positive experience treating his wife's brain mets with herceptin. When there are mutiple brain mets, is WBR a better solution?

Any other thoughts please share ! Thanks!

[KsGal]

Well, I am probably the least expert on this subject, but Im considering my recent experience...Im putting in my two cents! I think anyone who is her2 positive with mets should have brain scans included with their regular scans every three months. It should just be protocol. Paul did share his wife's positive experience with the herceptin intrathecal, I believe, but it's awfully hard where I live to find anyone that would be willing to do that as it is still considered experimental. When I mentioned the intrathecal herceptin many months ago before this even happened to me, my doctor wasn't even aware.

[Rolepaul]

I recommend once per year to 18 months for an MRI of the brain for the first five years. After five years, it seems that the brain is unlikely to be a location for the cancer to reside in, so maybe every three years to five years. If you get headaches, dizziness, etc. then it should be done immediately. If there is more than 5 sentinal nodes definitely do this. That assumes cancer-free elsewhere.

There are going to be two articles in journals shortly discussing IT Herceptin. That may help with this form of treatment. Doctors are very risk adverse and many will go with standard treatments, such as focused beam rads when lesions appear or methotrexate IT or WBR. There appears to be increasing evidence that the high dose IT Herceptin is a better alternative, but it is hard to get traction. MD Anderson in Houston is starting to gather more patients to get the evidence together, but I can tell you it is still not yet known by many physicians. Have your treatment specialist call Dr. Monica Loghin at MD Anderson Cancer Center in Houston Texas to get additional information. I am trying to get som public forums to get the word out. We shall see how succesful I am.

[Lauriesh]

I have been stage 4 for 2 1/2 years and I have a brain MRI at least once a year. I would love to get one every 3 months but I know my onc wouldn't agree to it, I had to fight him to agree to once a year.


Laurie

[Mandamoo]

I can't have an MRI unless I get the skin expander in my breast removed (it has a magnet in it) - I have had a clear head CT when commencing the trial and have had a couple of PETs - I could have the expander removed but not keen on the surgery.

[KsGal]

Manda..I still have my skin expanders in with magnets, and I have two brain MRIs in the last week.

[jml]

It seems like following the brain is very subjective, specifically if you've never had brain disease. I chose not to get regular brain MRI's for many years - the first 8 yrs of my Stage IV dx. I just didn't want to know because I didn't think I could handle it.
My doctors were respectful of this. Also, I think insurance may limit access to brain scans if you don't have history with brain disease.
I finally had to have a brain MRI in june 2010 as I was screening for a study and discovered a 4mm lesion in my L lobe. I had a single shot of rads, Novalis. My brain was clean for a year & a half, when a f/u scan showed a 2mm "shadow" in the same region as the previous spot. A f/u 8 weeks later revealed 8 spots in my brain, 2 larger ones in my R lobe & brain stem.
That required 15 rounds of WBR, and the dreaded decadron. But by the grace of God, my brain scans were clear in the one month post rads f/u MRI, and have been ever since. I was virtually asymptomatic with both events, so I'm pretty terrified each time I do another f/u MRI. I'm on a q3mo schedule now.
My next Brain MRI is January 8. I can't bear think about it.
Trying to stay in the moment and not borrow problems from tomorrow that may never come. But last January was the start of a very difficult 6 months- WBR, progression of systemic disease & starting a 14th line regimen, and losing my dad & a bad cycling accident that put my sister in ICU for 4 days. I don't know how we got thru that horrible time...but we did.
But I digress...;(
Thanks for starting this thread, Yanyan. Sharing our experiences is as cathartic as it is empowering.

Keep the Faith everyone & Here's to a brilliant 2013 filled with
miracles of all sizes & so many possibilities~

Jessica

[NEDenise]

Jessica,
My f/u MRI is on Jan 8th too! I think that's a good luck omen for both of us! I'm 4 months out from GammaKnife, and they do an MRI every other month still. Eventually, it will go to every 3 months, but my regular onc also orders CTs of the rest of me every 4 months. Lots of scans, but so far so good.

As for when and whether we HER2 warriors need MRIs...I was completely asymptomatic, but on the day of my last Herceptin infusion, I asked for a brain MRI. I told my onc that I wouldn't sleep at night unless I was sure my brain was clear before I went off into the world thinking I was NED. The MRI was scheduled for a few days later, and that evening I got the dreaded call. Not one, but TWO lesions in my brain...and not little tiny ones either...1 cm and 3cm...the larger of which was so close to my brain stem that the neurologist couldn't believe I had no symptoms. Evidently, I should have had both vision and balance symptoms related to the size and position of that lesion. It's very scary to consider what may have happened to me, if I had not insisted on that "end of treatment" MRI.

In hindsight, I wish I had insisted on being treated with Tykerb/lapatnib during the Herceptin only portion of my treatment. I wonder if that would not have protected my brain. As it is, when the cancer had nowhere else to go...it hid in my brain...which, according to two of my docs is not nearly as uncommon as insurance companies would like us to believe. The problem is...Tykerb is pricey...so they don't want to pay for it before disease is evident in the brain. I wonder how they'd feel if it were their mom, sister, wife...?

Anyway...I too digress...down from my soapbox. Jessica, I'll be thinking of you and sending prayers and love on the 8th.

Yanyan...thanks for starting this thread...knowledge is power!
Denise

[yanyan]

Thanks sisters for sharing your thoughts! Knowledge IS power! Brain scan is not a routine unfortunately so i feel we should be armed with knowing in this aspect. Wishing everyone a happy and healthy 2013 !

[Rolepaul]

Nina went from July 2005 to October 2009 without symptoms. That is why I am sucha strong proponent of checking. If there are more than four lymph nodes that are positive, the brain and spine need to be checked and then rechecked two years later. This should not be that hard.

[yanyan]

Just want to add your doctor will order it if you complain about symptoms- headaches, dizziness ect