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Old 01-14-2008, 04:31 PM   #1
hutchibk
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Sally - be sure you are limiting folic acid in your supplements (found in B-complex and multi-vitamins, neither of which I currently take while on T/X) as my nutritional doc contends that it can enhance/worsen side effects when taking Tykerb/Xeloda, and perhaps that comes into play for you. Don't worry about getting it in your normal diet, that is apparently not an issue. Also, no grapefruit products at all when on these drugs.

And for hand foot, consider vitamin B6 every morning and every evening. I take a total of about 100-150 mg a day and I have had essentially NO hand/foot symptoms after 8.5 months on T/X. I think
you have to get a jump on the B6 for symptom management for it to really work well, and not wait for side effects and try to play catch up... just my opinion. You can take up to 3-400 mg a day, I think, if the lower doses don't seem to do the job.
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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."

Last edited by hutchibk; 01-14-2008 at 04:37 PM..
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Old 01-15-2008, 02:32 PM   #2
koolmom
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Yeah! Great news! Horray to Tykerb/Xeloda!
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Old 01-18-2008, 04:56 PM   #3
Kristi
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Dosage of Tykerb

See the winter Cure issue (Vol. 6, No 6) 2007 page 65

"Still it was big new this past summer when two researchers from the Univrsity of Chicago calculated that taking a breast cancer drug with food could save patients and their insurers $1700 per month. The bioavailability of Tykerb increases more than three times when the drug is taken with a highfat meal....Their analysis was based on a pase 1 clinical trial with 27 patients...But don't start cutting your dose. Tykerb's label was written based on phase III clinical trial tests for safety and efficacy...Tyko's manufacturer (says) in early testing, taking the drug with food produced a wide range of bioavailability--some people ended up with much higher blood levels of the drug than others, probably because of different metabolisms and differences in what they eat..."

Thought you all might be interested in this. I just saw it. Kristi
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