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Old 09-11-2007, 06:32 PM   #1
Joan S.
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Headaches

I am fairly new to this site and I am amazed how much I am learning from all of you! I am so encouraged by all of your strength! I am entering my third round of taxol and herceptin. For the past week, I have been getting headaches and although I just got the results of a pet scan last week I am worried. The pet scan showed a "marked improvement". Is it possible to get brain mets while the rest of me is improving? Would the brain mets show up on a pet scan? Every new pain is a source of concern these days. I have been off chemo for two weeks because of a low blood count.
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Old 09-11-2007, 06:57 PM   #2
tousled1
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Joan,

The general rule of thumb is that if you are experiencing any symptoms for two weeks then you bring it to your oncologist's attention. Brain mets would not show up on regular PET/CT scans. You would need etiher a brain CT or brain MRI. If the headaches continue ask your oncologist for a brain MRI.
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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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Old 09-11-2007, 06:58 PM   #3
rentrac
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Dear Joan,
Herceptin can cause headaches, but the smartest thing is to call your onc first thing tomorrow and find out for sure what's going on. My motto is "When in doubt, check it out." Hope your head feels better soon!
Rentrac
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Oct. 2003: Dx age 48, Stage IIIA Ductal Ca. dense dose neoadjuvent AC. BrCa 1&2 -, ER+, PR-, Her2+. 2004: R mastectomy, 3+ nodes, dense doseTaxotere ( allergic), total hysterectomy, radiationx36 . Tamoxifen x6 mo., Arimidex x9 mo. Jan. '06: Multi left metastatic nodes left neck. Stage IV. Taxol, Carboplatin (allergic to both), Herceptin, radiationx27. Herceptin cont'd. 1 mediastinal met in old rad field. April: 2 brain mets - Rcerebellar, Ltemporal lobe. Gammaknife. Stop Herceptin, Start Tykerb. May: CyberKnife-mediastinal node, Zometa restart. July: New RLung mets. Xeloda add. Jan. 2008: CT: Lung mets shrinking. Fatty liver w/increased liver function panel. Feb '08: MRI: brain mets back, 2nd GammaKnife. June: Migraine headaches from cerebellar tumor. Team for WBR - Choose Craniotomy on Cerebellum only. Aug: Crainiotomy successful. Sept: PET -right lung apex clean; left internal mammary artery appears malignant. Herceptin in future. Left mastectomy?
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Old 09-11-2007, 10:39 PM   #4
hutchibk
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And, not to scare you, but since Taxol and Herceptin are too large molecule to cross the blood brain barrier, it is possible for you to be improving in the body and for something to show up in the brain... as the others have said, if the headaches continue and are not relieved by pain relievers, then be sure to tell your onc and ask for an MRI. I too had headaches at different times and they were caused by allergies. My very small brain mets never had any symptoms.
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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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Old 09-13-2007, 05:17 AM   #5
Lala
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Location: South Florida
Posts: 131
In answer to your question; In my experience I would say yes brain mets appeared even though other parts of my disease had improved. Even though my cat scans of the abdomen showed marked improvement of my liver mets this did not matter.

My brain mets were caught in a routine Brain MRI. My doctor insists that all of his stage 4 Her2+ patients get a Brain MRI every 6 months. I had no symptoms at all. I am a firm believer if you have any symptoms of brain mets that a Brain MRI should be ordered immediately as it has been proven time and time again early intervention is the best way to treat brain mets. I am not a fan of the wait and see club. I would rather be over cautious than be regretful. I wish you the best and hope that you do get to the bottom of this as soon as possible.
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Lala
DX Fall05 Stage 4 er+ pr+ her2+ liver and bone mets
DX Fall06 Brain mets, Brain mets gone Spring 2007
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Old 09-13-2007, 03:26 PM   #6
hutchibk
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Mine were found too on a routine brain MRI. I remember 2 years ago when I told the doc that I had been having headaches at the time that we first DXed my mets, and he raised an eyebrow and immediately scheduled an MRI. Nothing showed up at that time, but I am glad that he proceeds with an abundance of caution.
__________________
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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