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10-09-2007, 08:38 PM
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#1
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Senior Member
Join Date: Apr 2006
Location: Boston
Posts: 66
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change of rx for brain mets
Just wanted to let everyone know that my sister has changed medications; she had been on temodar/sorafenib since Feb. '07, and while it worked well for the 7 months she was on it, the side effects for her(severe loss of appetite and diarrhea) caused a swift and steady weight loss that was difficult to reverse. The MRI in early Sept. showed slight flaring around a few treated areas, and it was hard to determine if mets were growing or if it was necrosis.
So her breast cancer oncologist and neuro-oncologist decided to switch her to Tykerb(Lapatinib)/Xeloda, which she started on 9/24 -- so far so good. Her Oct.5th MRI showed no further enhancement from Sept.MRI.
I've seen a couple of posts that said that oncologists had said not to take Folic Acid(in many multivitamins) when on Tykerb/Xeloda -- why is that?
Thanks.
Emmay
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10-09-2007, 08:42 PM
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#2
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Em - I have been on T/X since May and my 9mm brain mets have shrunk by half and my neck bone met is significantly less enhanced... so it can be very powerful against brain mets! Folic acid can significantly worsen the side effects of T/X, so steer clear of it. My nutritionist tells me not to take multivits or B complex either, because they both have enough folic acid to cause potential interaction.
__________________
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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10-10-2007, 08:39 AM
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#3
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Senior Member
Join Date: Mar 2006
Posts: 306
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Emmay,
Just yesterday I was wondering about your sister and her treatments...
I'm on the Tykerb/Xeloda now, with the addition of Temodar. Scan in two weeks. My last scan showed slight progression in several of my brain mets. thus the 'new' tx's..
the number one and two side effects of the Tykerb are DIARRHEA and rash........ fyi!
I really hope your sis has the type of positive response as a few others have had....
best to you and your sister,
pattyz xoxo
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10-11-2007, 08:40 AM
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#4
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Senior Member
Join Date: Apr 2006
Location: Boston
Posts: 66
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Thanks BHutch -- I'll tell my sister about the Folic Acid/Tykerb/Xeloda interaction.
PattyZ- I hope the Tykerb/Xeloda+Temodar works well for you too. My sister was on an early Lapatinib(Tykerb) trial for a short period, and she didn't recall a big problem with diarrhea, and only minor rash irritation.
We're all hoping the addition of the Xeloda to the Tykerb rx will make it all the more effective.
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10-11-2007, 02:39 PM
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#5
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Emmay, best wishes to your sister and you too.
<3 Lolly
__________________
Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.
Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
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10-11-2007, 07:42 PM
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#6
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Emmay,
Wishing your sister success with the new treatment plan.
__________________
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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10-12-2007, 10:30 AM
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#7
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Senior Member
Join Date: Sep 2005
Posts: 556
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Best wishes for your sister. Hope tykerb/xeloda is a wonder drug for brain mets.
Julie
__________________
Diagnosed in Sept 2004 while pregnant with the second child. Stage 3b, tumor 4.5cm, 4 auxillary and supraclav node positive. Her2+++ FISH 9.4 and er-,pr-.
Had dose dense neoadjuvant AC,Taxol then mastectomy,radiation+xeloda+Herceptin.
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