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03-24-2008, 04:24 PM
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#1
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Junior Member
Join Date: Mar 2008
Location: New York, NY
Posts: 1
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Brain mets... Looking for answers!
My mother was diagnosed with breast cancer and they removed the lump, she was in remission for a year. Then after more more cancer they did a double mascetomy and removed the lymp nodes from under her arm. One year ago they found that her cancer spread to her lungs, liver and brain. She had serveral small spots and one 30mm tumor on her brain. Eight months ago she had WBR fifteen days straight and recieved good news that the small spot were gone and the big tumor's size had reduced. Then her neurologist avdised her to take care of her lungs and liver and then they would continue on her brain since it was under control.
Two months ago she received her PET scan results and her lungs and liver was clear. Then a new MRI revealed so many new brain mets that they could not count them and the large brain met was back up to 30 mm. She has now taken 2 months of Temodar b/c her doctor said she could not have WBR again since she had it 6 months earlier.
Can someone have WBR more than once?
And what is the life expectancy for a person with this many brain mets?
I have read everything online and I really want the truth....
Thank you in advance!
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03-24-2008, 05:20 PM
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#2
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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Hi Whitney! I'm sorry to hear about you and your mother's struggles, but I'm glad you're asking questions on this site. My wife was told she could have WBR twice, and I'm not sure, but it would seem to me to be the same for your Mom. It's great that her liver and lungs are clear. Also, I don't know all of the details, but I think Tykerb passes the blood/ brain barrier as well. That may be option. You're both in my thoughts and prayers, Bill
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03-24-2008, 05:20 PM
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#3
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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I was DXed one year ago with multiple tiny brain mets and three 8-9 mm bigger mets. At the time, Tykerb (lapatinib) had just been approved for use in the metastatic setting. My docs told me that we should consider WBR followed by Tykerb. (and if after that we still saw brain mets, then we would start looking at Temodar and other options...)
Well, I sat with them and went over the options, and we decided to start with pharmaceutical approach...Tykerb/Xeloda (because Tykerb and Xeloda cross the blood brain barrier and would potentially treat the brain mets without WBR). We would MRI again in a month and see if we were getting any response, and if not then we would consider targeted radiation or WBR immediately. In a month we saw less enhancement of the spots, after 3 more months we saw them shrink by half, and after 6 months total, all my brain mets were gone.
Long story short, my experience has been incredible with Tykerb/Xeloda. Has her doctor talked to you about this treatment option (which many are using post WBR and also getting great results)?? If not, you need to bring it up to him ASAP and tell him you are interested. Many of us here are on Tykerb/Xeloda and having great response. Of course, there are always those who a treatment does not work as well for, but it is a powerful option that should be considered!
__________________
Brenda
NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)
Nov'03~ dX stage 2B
Dec'03~ Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~ Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~ micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~ micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg
Apr'07~ MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~ Started Tykerb/Xeloda, no WBR for now
June'07~ MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~ MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~ PET/CT & MRI show NED
Apr'08~ scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~ MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~ dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~ Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~ new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~ new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~ 25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.
"I would rather be anecdotally alive than statistically dead."
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03-31-2008, 05:21 PM
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#4
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Senior Member
Join Date: Feb 2006
Posts: 1,014
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A friend of mine had WBR twice, she had lung cancer with mets to the brain. Sadly the mets to the brain came back and she was told if she did WBR a third time, she could end up a vegetable. She choose not to do it, she passed away last year. She survived 22 months with lung cancer/brain mets..Survival is different in everyone and hard to predict...sherryg683
__________________
Sherry
Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
8 years NED now
Scans every year
Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
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04-01-2008, 06:07 AM
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#5
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Senior Member
Join Date: Sep 2005
Location: OH
Posts: 385
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Whitney
Have you gone to the pull down menu on this site for brain/metastasis? There is a wealth of information there. Good luck to your mother and to you.
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04-01-2008, 08:13 AM
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#6
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Guest
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Brain Mets Website
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05-08-2008, 10:25 AM
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#8
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Senior Member
Join Date: May 2008
Posts: 62
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Just a warning, so far I have found the Internet junk about WBRT to be dated. Don't read anything that is more than a year or two old. The therapy has changed dramatically in the last year or two. Much less scary! (This site gives two people who had 50Gy, I'm only getting 30Gy, the new standard.) I'm in week two of two of WBRT, and it ain't nothing as bad as the whole breast rigamarole was in the first place.
Insist on seeing all the Oncology Radiologists and Neurosurgeons and Neurology, now, for a long consult. Chances are they can assuage some of your fears.
There are still plenty of options for your mom.
Some of us are bound to be the new hope. There are few "truths" because we are the new frontier. New chemo, new antibodies, new hope.
Carla
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