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Old 06-30-2007, 10:45 PM   #1
H&B
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Location: Sydney Australia
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Smile off to a good start!!!

Hi all

Just quickly thank you for your responses, My wifes headaches have started to subside and she is seeing some definate reductions in her tumors that she can feel with her fingers. She is delighted and is managing well with the diahrea, hot feet and hands, her main thing is she is so fatigued she is spending most of her day in bed & sleeping,
She has hope and that is the main thing!!we are so thankful its hard to put into words.
May you all continue to have wonderful results on a targeted therapy - the way of the future!!
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Old 06-30-2007, 11:08 PM   #2
hutchibk
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HI Harald - she should not be taking any supplements with folic acid. It can be found in multivitamins and B-complex... it can make the side effects worse, so don't take it! Also, no grapefruit! I find that eating as clean and healthy as possible really mitigates the diarrhea severity. Also, try a B.R.A.T. breakfast everyday... banana, rice, applesauce, toast and tea. It works for me. I only have about 1-2 bad diarrhea days every month so far, and usually when I get lazy dietarily. Also, as mentioned by others here, dosage can be adjusted to mitigate side effects. Hydration can be a cause of headaches and leg cramps.

The hot feet and palms of hands is Hand/Foot syndrome. Take 100 mg of B6 (50m in the AM and 50m in the PM). Don't let it get out of hand. Have her do what she can now to prevent it! Once it takes hold, it's hard to go back.

Best of luck to you and Brony! Australia? I might be there in November!
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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 07-01-2007, 06:51 AM   #3
doh2pa
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Hi Harald,

Love your picture, by the way.

I wanted to address a question in your original post about reversal of lung mets on this regimen. I am on Tykerb and Xeloda and after only 6 weeks, my scans on Friday showed 3 small lung mets are GONE!!! I greatly hope that your wife will have the same amazing results, sounds like she is well on her way.

Donna
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Donna
Diagnosed 2/04 - Invasive ductal - no clean margins
node negative - er+pr+, her2++
Mastectomy 4/04 - 4 rounds AC
9/05 - mets to liver treated with carbo/ixabipelone/herceptin
3/06 - complete remission
9/06 - new liver mets, starting Taxotere/Herceptin
1/07 -Liver mets stable, staying on Herceptin
5/07 - Liver, lung progression - starting T/X
12/07 - Liver, lung progression - starting weekly Navilbene/Herceptin
4/08 - Liver progression - started Abraxane, Carbo, Tykerb and Herceptin
7/08 - Liver Progression - started Gemzar, Avastin and Tykerb
10/08 - Liver progression - starting Doxil
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