brainmetsbc.org

"I get to join the brain mets club"

These were the words that Ann put in the subject line of the email message she wrote to her online support group, bcmets.org, in late November 2007 when she discovered her breast cancer had spread to her brain:

"Turns out I have a small tumor on my pons (don't know exact size) that is probably causing the double vision which has gotten worse today.  Monday and Tuesday I could still see things single close up, but not anymore.  I am wearing an eye patch so I can see single to do things such as type this email.  Needless to say I am scared and very discouraged and so grateful for this group."

Elizabeth was quick to respond:

"Oh Ann, I remember the fear when I was first diagnosed with brain mets.   I had whole brain radiation which exhausted me so much I had to go on disability from the world's greatest job but it worked and I began feeling better after a few months.  Then next time it came back, I think there were 3 lesions and they did gamma knife which also worked but the mets eventually came back.  I haven't suffered too much from it but I'm a bit wobbly and extremely sensitive to light which my onc says is probably due to the Xeloda rather than the tumors.  I also take Temodar after two weeks of Xeloda.  So I get to go from constipation right to diarrhea but I've learned how to take care of it now so it's no biggie.  Sometimes, the lesions that I have in my brain shrink just a little and the next scans might show that it has stayed the same.  It rarely spreads or grows but it did show up in a PET scan back in the summer and it was gone at my next scans two months later. Best of luck to you!  Hang in there."

Jenny also offered her encouragement:

"I've been dealing with brain mets for 6 months now, and yes, there is hope. I had WBR (whole brain radiation) in late May - early June after coming pretty close to dying. I had way too many mets to even think about Gamma Knife or anything similar. It wasn't an easy thing to recover from (although I don't know how much of that was the seizure that left me unconscious for a couple of days), but I am back working full time as a pastor, being a mom to my kids, even driving. I also have bone mets and at least one liver met. At present, all of my mets are stable or shrinking. I'm on Herceptin, Lupron, Femara and Zometa. Hang in there - yell a bit if you want - and know we are all pulling for you."

”I did not like hearing about your double vision,” Patty wrote to Ann. “Did not want it to be brain mets. Damn.”

"I've had two of my many brain mets on the pons/brainstem. One was successfully radiated with focalized treatment. One is there now. They've been 3mm up to 7mm.  My 24/7 dizziness was nearly resolved after about a weeks time on Xeloda/Temodar, then gone completely thereafter, never to return in the last two years three months. (Knock wood) But with my latest progression on Xeloda alone, we've added the Tykerb and restarted the Temodar. Had MRI after two rounds/two months: some slight shrinkage to several of current 8-ish, the rest stable."

Shahna, who had recently joined this online community, wrote:

"Hi Ann. I may be joining you shortly and must admit to being terrified about it. Just had my CT of my head today.  I started having double vision about 2 months ago. It is intermittent so doc said it could be from skull mets or even possibly from the Taxotere  I'm on so I am crossing my fingers that is the case but I will not know until the CT results are in next week so now I wait and worry. I was so hoping to avoid this complication but I guess we do not get to pick and choose, do we??"

But later that day, Shahna wrote again:

"I am getting the ‘good’ news early.  I see my doc tomorrow at 10:15.  He wanted to see me right away after the scans. I know what this means. They never see me right away unless it is bad news so I have joined you with brain mets. I am having a pity party right now to be honest and I think I am going to try to find some encouraging posts of people who have pulled through with brain mets for several years as I have this awful feeling my chances of being around in another year just took a big nosedive. Merry Christmas to us we keep getting hit by this bus. It sucks having cancer. When there is no real answer. Why me? I am really not ready to go just yet so any posts of encouragement from ladies with longer term survival i.e. more than 6 months with brain mets and what sort of treatments you had would be greatly appreciated right now. I am having a hard time coping with this right now and really need hope even to continue the desire to fight."

Deanna was quick to respond to Shahna’s cry for help:

"I have had brain mets since Jan. of this year. I had Gamma Knife in Feb. and had four spots treated. I have had MRI’s every three months since and had two clear ones until just recently. I now have three new spots, the other treated spots are either gone or stable. I am scheduled again for Gamma Knife on the 10th of December.  I don't plan on going anywhere, anytime soon."

Elizabeth wrote again with encouragement:

"I have had brain mets 3 times since 2004.  The first time, I was treated with whole brain radiation and it cleared up all of the lesions.  The second time was a year later with 3 lesions and they used gamma knife and it cleared it up again.  The third time they came back we tried various chemos and the lesions are smaller but still there.  I'm currently on Xeloda, Temodar, and Femara and hanging in there.  I plan on staying around for awhile, too." 

Responding to Shahna, Shelly shared her experience:

"Hi, sorry to hear that you have joined those of us with brain mets. I was diagnosed with brain mets in April 2006, had surgery to remove 4 tumors. My doctor used a chemo wafer - which I don't think is widely available - he placed a chemo wafer in each cavity where he removed a tumor. The wafers break down and slowly release chemo. No other chemo makes it to the brain due to the blood-brain barrier. I feel very lucky to have received this treatment. I also had Whole Brain Radiation (13 treatments). I have brain MRIs every 12 weeks and so far...so good. I am a little more than 1 1/2 years out from the brain mets diagnosis and just over 3 years from my original BC diagnosis. I am currently on Xeloda but it's for bone mets. Hopefully this info helps. Feel free to email me with any questions."

Sandy also reached out:

"I agree with you that a dx with brain mets is very frightening. Before I was diagnosed with a large cerebellar brain met (March 2005), having brain mets was my biggest fear. Now, I've grown new fears (of leptomeningeal mets, and of ascites) - because, despite having had two craniotomies for that one fairly large brain met, then CyberKnife afterwards to "clean up the margins" after surgery, and two more CyberKnife procedures within the next 6 months to zap very small brain mets in other places, I've had a good life and very few after-effects from the brain mets and treatments. A bit of positional vertigo on occasion, which I learned to deal with successfully with some months of physical therapy. So that was 2.5 years ago now, and I've traveled, worked, had decent energy, enjoyed get-togethers with family and friends, and do many crafts, all with a history of brain mets, and the possibility/likelihood that more will pop up in the future."

Diane shared her brain mets history:

"I was diagnosed with 6 brain mets in different parts of the brain. The diagnosis was end of Jan 2007. I was symptom free and was going for a checkup at MD Anderson. They immediately put me on steroids for an edema around one of the tumors. I then started 10 whole brain radiation (WBR) treatments, one treatment a day. I am happy to report that my latest MRI of the brain shows no evidence of tumors, 10 months later.  There was a period of recovery time afterward because I had some residual effects from the WBR or the tumors themselves.  I was told that the tumors will swell a bit from the radiation because of cell death.  That could cause the residual effects I had after treatment."

Jane was also moved to respond:

"Shahna, you have a lot to fight for! Please don't give up. I just passed my 2 year anniversary post-WBR, and have very few long-term side effects. The occasional short-term (very short) memory loss is the hardest to deal with, and only I notice it. I know it, but others wouldn't. There is some frustration with it, and I get "down" at times, but not often. Expect to have a few months of side effects, but they can be all over the board as far as what they may be. Fatigue, plugged ear, and stomach and some headaches were the main ones. My balance has never been as good since the WBR, but I've been to a balance clinic and gotten PT (physical therapy) for it? REALLY, you have reason for LOTS of hope!"

You can read what these women and hundreds of others have to say about brain mets and every other aspect of living with metastatic breast cancer, by visiting bcmets.org and searching or browsing the archives.  Or you can join the bcmets.org mailing list yourself, and interact with other women who’ve lived the experience.  They are the real experts!