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11-15-2013, 12:46 PM
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#1
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Senior Member
Join Date: Nov 2010
Posts: 186
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Need info on WBR
We found out today that Kiri has brain mets. :-( She just called me. She's on steroids, and pretty hyped up (though talking to her mum can't have helped calm her down :/ ). There are about a dozen tumors all over her brain, they don't even know how big because of swelling, but they think under a cm each. They're starting whole brain radiation today, and finishing the day before Thanksgiving. And in the middle of everything, she plans to come down here (to NJ from Boston) with her boyfriend the weekend before Thanksgiving, then somehow get back to Boston on Monday for more rads, then fly down to Chattanooga on Wednesday when her radiation ends to meet up with the boyfriend and go rock climbing on Thanksgiving.
I'm worried that whole brain radiation totally wipes you out, you're not supposed to drive, but it's not my job to tell her how to live, especially at this point, so I just fret. And I'm so so scared for her, but she is handling this with courage and humor and aplomb, if somewhat on fast forward due to steroids, as she always does.
So those of you who have undergone WBR, what might we expect? I know--as I was reminded firmly by my daughter--that everyone's response is different. How long might she be on steroids? I hate what they do to her. They plan to scan her again a month after the rads, and she will stay on herceptin and perjeta, with the possible addition of another chemo, for the duration.
She is triple positive, and was declared NED just 5 weeks ago after 6 months of treatment with taxol, herceptin and perjeta for multiple liver mets.
Thanks all for any help and support.
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11-15-2013, 05:01 PM
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#2
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Re: Need info on WBR
Tykerb passes the blood brain barrier and could help. If they want to add a chemo, Xeloda and Temodor also pass the blood brain barrier. Just information - not advice.
__________________
Kind regards
Becky
Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia
NED 18 years!
Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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11-15-2013, 06:59 PM
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#3
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Senior Member
Join Date: Nov 2010
Posts: 186
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Re: Need info on WBR
Thanks, Becky. She was on Tykerb back in 2010 when she was first diagnosed and had a very bad reaction and ended up with pancreatitis in the ICU, so they won't give her that again. But she is meeting her onc on Tuesday & I think adding Xeloda to the mix is a definite possibility.
I am still in horrified mode. :-(
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11-16-2013, 09:27 AM
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#4
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Senior Member
Join Date: Jun 2007
Posts: 2,210
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Re: Need info on WBR
Reading this I don't know whether to laugh or cry. The news makes me sad but then in the next sentence she is going rock climbing! And that makes me feel joyful. Her spirit is indomitable!
I don't want to minimize your grief and fear. This has been a roller coaster of anxiety from the beginning for you and you have handled it so well under so much adversity. Hopefully her doctors will rein in the travel plans/climbing if they feel its a bad idea Or maybe they will give her their blessing. Otherwise I guess you have to keep doing what you have been, leaving her in Gods hands
You have raised one amazing girl
We all are here to support you. And share your worries. Please keep us posted
And keep the faith
__________________
Bonnie
Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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11-17-2013, 01:01 PM
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#5
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: Need info on WBR
Very sorry to hear that news. This takes me back to our dear Courtney, and how she hiked and enjoyed the outdoors.
Yes, your daughter may have to stay on the ground if she has that much swelling and will need the steroid that always goes along with that diagnosis.
The fresh air should do her some good, but the boyfriend needs some education as to what is now happening. He needs to know what to do in case of seizure.
Praying along with you that the WBR will put thse mets in their place. She very likely will have some spots treated individually by radiosurgery in the next few months if not sooner.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.
MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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