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Old 11-28-2011, 06:32 PM   #1
bestfriend05
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WBR or wait and watch????? pls help

Hello everyone, my mother was recently diagnosed with stage 4 and mets to brain (single lesion) which was removed surgically, she has now been advised to get WBR or wait and watch..!!! can some one pls help us in making this decision, has anyone everbeen in a similar situation before..? we r so confused and stuck, really really dont know what route to take..she is er and pr +ve and her2 -ve, so cannot have herceptin...! what is one to do..???
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Old 11-28-2011, 06:47 PM   #2
Becky
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Location: Stockton, NJ
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Re: WBR or wait and watch????? pls help

Tamoxifen or aromatase inhibitors are usually used in hormone positive cancer. Both cross the blood brain barrier including all three aromatase inhibitors (Arimidex, Femara and Aromosin).

If you mother has been on one of these, she should switch. If she has been on Femara or Arimidex, she should talk to her doctor about switching to Aromosin (works in a different way than the other two). After that, she could switch or use Tamoxifen if she has never tried that.
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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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Old 11-28-2011, 06:49 PM   #3
Becky
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Posts: 4,179
Re: WBR or wait and watch????? pls help

I also want to add that the common breast cancer chemo, Xeloda, also crosses the blood brain barrier. There are some side effects but hair loss is not one of them.

Also, Temodor, a chemo that crosses and is commonly used for primary brain cancer is used.

Both are pills.
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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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Old 11-28-2011, 07:21 PM   #4
Joan M
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Posts: 1,851
Re: WBR or wait and watch????? pls help

I'm sorry to hear about your mom's brain met. I had one met, so I understand what you are all going through.

My met was also treated with surgery as well, and then followed by targeted radiation to the brain. 5 doses of IMRT (image modulated radiotherapy). The tumor bed was radiated. I preferred avoiding WBR, and I know of a few women on this board who have had several brain mets individually radiated, but who did not have surgery. That is, their tumors were small enough to be treated by only radiation. I was advised to have surgery followed by radiation. My tumor was 2.6 cm.

My met has not recurred and I have not had any others since.

Wishing the best for your mom.

Joan
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Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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Old 11-29-2011, 01:13 PM   #5
bestfriend05
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Join Date: Nov 2011
Posts: 2
Re: WBR or wait and watch????? pls help

Hi and thanku all for your suggestions, when my mom was diagnosed with breast cancer, before she could have surgery or any other treatment a brain tumor met was discovered., so all this has been pretty recent. she is not any hormonal therpay as yet but that is what the onc plans to do after radiation. I have been speaking to some of my doc friends and getting opinions about the WBR from their onc friends and they say this is std treatment..so my brain is really frazzled..!!as online research seems to be against WBR..Dont know whom to believe...but have to make a decision soon, apt due with onc tomorrow..
Joan can I pls ask u if u were offered WBR, and did u oopt out of it? also when did u have radiation..
thanku so much girls for your input, wishing u all the best of health and happiness..xx
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