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10-05-2007, 02:10 PM
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#1
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Senior Member
Join Date: Jan 2007
Posts: 368
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When should you ask for a brain MRI?
Knowing that Herceptin doesn't protect the brain from metastasis, at what point in your treatment should you request a brain MRI?
I know most onc's want to wait for symptoms, but I'd rather not, since I can't tell what may be Herceptin related side effects (headache, blurred vision at times) or not.
__________________
12/12/06- IDC Stage III, 4x A/C, 35 rads, Herceptin 1 year
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10-05-2007, 02:33 PM
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#2
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Senior Member
Join Date: Jul 2006
Posts: 869
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I aked for once last week for the first time and will have it next week. Ceesun
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10-05-2007, 02:54 PM
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#3
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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I ask for one every year...I just fake a few headaches so the insurance will cover it.
__________________
"Be kinder than necessary, for everyone you meet is fighting some kind of battle."
Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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10-05-2007, 02:56 PM
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#4
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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I got my first one 14 months after my initial treatment, when we found my first recurrence, when we decided to look at everything just to be sure, and no brain mets. I didn't get Herceptin until my first recurrance. Then I got Herceptin with and without chemo for 20 months. We MRIed once again during those 20 months (while I was still getting Carbo and Taxol with Herceptin) and no brain mets. Then we MRIed last March while I was getting Herceptin and Taxol only, and that's when we found my small brain mets. I am thinking that since Carbo crosses the BBB, that it protected me, but without it is when my mets crossed to the brain. My doc doesn't necessarily buy my theory hook line and sinker, but the chronology works for me...
I say push for a base-line when you finish your year of Herceptin, but if your headaches increase or are not relieved with pain-relievers, tell you onc and see if they will do one. I say err on the side of caution. My brain mets had NO symptoms! We did the MRI because I pushed for it, and lucky we did, because we found the mets while small and fairly easy to treat.
__________________
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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10-05-2007, 04:28 PM
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#5
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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I would ask for a yearly brain MRI. I had my first one shortly after starting Herceptin and while I was going through radiation. I started to get headaches so got the MRI - everything clear. I had my second one this year = almost a year to the date of last one - and a 5mm lesion was discovered. Now I will have brain MRIs every 3 months for a while.
__________________
Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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10-08-2007, 06:28 AM
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#6
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Senior Member
Join Date: Sep 2005
Location: Central Florida
Posts: 503
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Our HER2support founder -Christine- really has first dibs to claim brain MRI's as a necessary diagnostic.
There is nothing like peace of mind. I would feign headaches too if that was the only way to get a brain MRI. A lot of doctors wait for symptoms before ordering imaging... follow your instincts.
Maria
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10-08-2007, 06:45 AM
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#7
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Senior Member
Join Date: Feb 2005
Location: LI, NY
Posts: 660
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I asked for a brain MRI long before my doc suggested one. I have many times suggested faking sysmptoms if it's the only way to get a test covered by insurance. I think everyone dealing with breast cancer should have one - if for nothing else but peace of mind and a baseline. We have to be one step ahead of this disease, and if your at this site reading these boards, you know it CAN happen to any one of us. My friend Maryann complained to her onc about visual changes. He did not give her an MRI...she is gone now and I blame him! The minute she said anything, she should have had a prescription for the test in hand...
__________________
Maryann
Stage IV Inflammatory BC 1/00
Mod Rad Mastectomy 24nod/5+
Adriomycin Cytoxin Taxol
Tamoxifen 4 1/2 yrs
Radiation - 32 x
Metastatic BC lung/liver 10/04
thorocentesis 2x - pleurodesis
Herceptin Taxatiere Carbo
Femera/Lupron
BC NED 4/05
chemo induced Acute Myeloid Leukemia 5/06
Induction/consolidation chemo
bone marrow transplant - 11/3/06
Severe Host vs Graft Disease of liver
BC mets to lung 11/07
Fasoladex Herceptin Zometa Xeloda
GVHD/Iron overload to liver
Avascular Necrosis/morphine pump 10/10
metastatic brain tumor
steriotactic radiosurgery
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