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Old 08-21-2009, 10:16 AM   #4
vickie h
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Join Date: Jun 2006
Location: san luis obispo, ca
Posts: 1,150
Re: Need some help and advice

Good Morning, Leslie,
I was getting ready to PM you when I saw this and wanted to respond. Hallelujia! You don't have IBC...that is the best news I've heard in a long time. I just knew that Dr. C. would be giving you some very good news. He is the IBC Dr., though there are some doctors who have become quite experienced in this field. I would assume (and that is a big word) that he would know IBC when he sees it, yet we're all infallible to some point.
My Onc is here and says she has heard of instances where they do give radiation before surgery to shrink the tumors with no adverse effects during or after surgery. She said the Mayo Clinic is doing a study with targeted radiation involving small injections or tubes that are put right into, or seeded, the tumor itself without harming the other tissue before surgery.
I know this leaves you in a quandry, wondering which way to go. Texas is far away, yet with a great Dr. and Sloan is highly recognized as one of the best, but I would go with your gut feeling. If chemo hasn't shrunk the tumor, then radiation just may be the answer. Since there seems to be some debate as to surgery after and healing issues, I would really research that. My Onc seems to think it is just fine, that shrinking the tumor at this point is important before surgery. She's just surprised by the IBC diagnosis in the first place and said she has seen that a couple of times.
I wish I had the answer for you, sweet sister. Will your Sloan Onc do the rads first?
Today I am feeling positive about Dr. C. and his diagnosis. Not having IBC is a blessing beyond belief. It is wonderful. We'll deal with the other IDC and zap it right out of here.
Please let me know what you find out or decide. I'll do some more research on it myself.
Sending you love and God's healing thoughts,
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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