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Old 02-08-2009, 08:15 AM   #1
Midwest Alice
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Join Date: Dec 2008
Location: Southern Indiana
Posts: 455
Go to the IBC clinic at M D Anderson

I went to the IBC clinic at M D Anderson. My at home onc is excellent and I now have Dr. Cristofanilli added to my team.
Dr. Cristofanilli has over 175 IBC patients from all over the world. This is where its happening!

If you have IBC call them. They will have you send all your records to Dr. Cristofanilli. He personally looks them over to see if he will take you. He said he really needs newly dx patients but he took me and I am almost a year out.

The more of us who go there the more information the researchers will have and the closer we get to new treatments and a cure.

I do my treatments at home and go to MDA and see Dr. C every 3 months.

If you have questions post or send me a private message.

Keeping the faith
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Alice
04/08 age 50 III IBC Her2+++ ER/PR-8cm 14/14 Double M, Body and Brain CT/PET clear, ? on spine,Muga 53
06/08, 4 A/C, Neulasta
08/08, Herceptin/tax 12 every week
10/08, CT/PET clear, ? on pelvis, hips, MUGA 43, started Enalaprial for heart, Herceptin every 3 weeks
11/08 33Rads; 12/08 MUGA 48
2/09 MRI spine and bone scan, old mets to spine, Chest x-ray, blood work, IV NED,regular CPAP use,Zometa x6, first -flue like symptoms 2 days;Herceptin x3; stage 2 lymphoedema..sleeve and glove
4/09 Brain MRI - CLEAR; MUGA 54
7/09 chest ultrasound,
10/09 PET, brain and spin MRI NED Herceptin only. MUGA 59!!!
1/11 Hip replacement 7/11 Hip 2 replacement
4/12 4 years!! Herceptin
6/12 start reconstruction finish in 12/12
2/14 Herception - 6 years!!!

1 Corinthians 10:13 "No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you
can stand up under it."

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Old 02-08-2009, 11:50 AM   #2
vickie h
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Join Date: Jun 2006
Location: san luis obispo, ca
Posts: 1,150
Alice,
I am so thrilled that you took that big step and went to Texas. Keep us posted as to your treatment and how you are doing. You are now in some of the best hands in the countrys'. MD Anderson is the world leader in IBC and you are blazing a trail for all those who will follow in the years to come.
Much love and hugs to you, Vickie
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Love and Hugs, Vickie

Life's not about waiting for the storm to pass,
It's about learning to dance in the rain.


Feb 04 IBC IIIC/IV er-/pr- her2+++
3/04 TCH X4
7/ 04 MRM 9/04 Taxol/herceptin wkly 1 yr 33X rads
11/04 skin mets 33x rads,10/05 Avast/Herc. 11 mos.
8/ 06 PET mets lymphs, neck
9/ 06 Navelbine/herceptin
11/ 06 PET NED
2/ 07 skin mets, 4/07 Xeloda, 5/07 add Tykerb
2/ 08 Tykerb failed. Doxil /Herceptin 6 months
8/08 PET skin mets, 8/08 Abraxane/Avastin
11/ 08 PET prog., skin mets
1/09 PET/CT progress, 1/09 Ixempra, 2/09 add Xeloda and low dose Naltrexone
2/09 off Ixempra/Xeloda
3/09 navelbine/herc/cytoxin 4/09 PET shows regress.7/09 start Topotecan. Failed.
8/09 extensive mets rgt brst, back and torso. starting Pazopanib clinical trial.
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