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Old 05-08-2007, 07:56 AM   #1
Emmay
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brain mets - Temodar+Sorafenib update

My sister just yesterday had her third monthly MRI since starting the Temodar (a.k.a Temozolomide, an oral chemo that crosses the blood-brain barrier) plus oral antiangiogenesis drug Sorafenib(a.k.a Nexavar) combo treatment, and the good news is there have been no new mets since she started in February! (Prior to that, she had been receiving Cyberknife radiosurgery every 2-3 months, as 2-3 new mini-mets would appear by the 2nd monthly MRI i.e. the Cyberknife treatment worked well on detected mets, but new lesions where still showing up, and she had already received Whole Brain Radiation in Nov'04).

She is feeling well on this treatment, with the side effects being minor (controllable) occasional nausea and diarrhea, decreased appetite from the Sorafenib (she has lost 12 lbs since Feb 1), and her hair is thinning slowly, unlike the quick loss when she had AC+T chemo before in '03-'04. She works out at Curves every morning, walks her dog, gets out with friends and drives her two boys to their activities. She, her husband and the boys just had a great vacation in Florida.

Her neuro-oncologist and oncology nurse say they are starting to see more positive responses to the Temodar/Sorafenib combo treatment in people with brain mets (from breast cancer, melanoma, and others). The Herceptin my sister gets every 3 weeks is keeping the rest of her body clear, and now, at last, an effective treatment that crosses the blood-brain barrier.
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Old 05-08-2007, 10:11 AM   #2
hutchibk
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Thanks Emmay - this is more good news for those of us just tackling the brain mets issues... My doc is not ready to turn to Temodar just yet, but we have been keeping it in our back pocket for future reference.
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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 05-08-2007, 10:29 AM   #3
Emmay
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I forgot to mention that my sister participated in an early Lapatinib (aka Tykerb) trial Feb-April '05, and while it did not work for her then, it was making a difference for some other patients. I would think Tykerb would be a better early systemic treatment choice for brain mets because it is targeted at Her2+bc, and is generally better tolerated.
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Old 05-08-2007, 01:33 PM   #4
Joy
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Thanks for letting us know all of this information Emmay. It sounds like your sister is handling this with grace and vigor. I will hope for great results in the next round of scans.
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joy

dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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Old 05-08-2007, 04:32 PM   #5
pattyz
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Emmay,

this is the most wonderful news to hear about your sister!! I am just delighted for her... and all of her family, too, ofcourse ) so happy!

And thank you for posting this great news so that others can store this info away re: your sisters tx's for her brain mets.

I'll need to do a bit more looking to print out something for my own onc on the Nexavar part of her treatment... Next Mri on this Thurs, appt w/ onc next Monday....

hugs to you and your sis! xoxoxo
patty
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