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Terri
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Joined: Nov 12 2007
Location: FL
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Topic: Anyone newly diagnosed in FL Posted: Jun 15 2009 at 7:32am |
I just wanted to let anyone newly diagnosed in Florida to know of a helpful organization:
The Florida Breast Cancer Resource Network has a navigator program designed to help you understand your tx options and help obtain info needed to make informed choices about your tx. Services are free of charge.
You can also speak to them about nutritional subjects in regard to staying as healthy as possible through tx and beyond. They put out a newsletter which is very informative.
The # is (800) 696-8349.
email : www.bcfbcrn@aol.com
website: www.FBCRN.org
They can also give info about going through tx without insurance, so I pm`d monique9 about this before I realized I should put this out there for everyone.
Terri
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IDC DX 8/17/07 (age 41)
Stage 1 Grade 1-2, 1.35 cm
2 nodes neg, Lumpectomy 10/07
Chemo: FEC 100 x 6, 35 rads
BRCA 1/2 NEG
PET/CT & Brain CT Nov 09
Brain MRI Aug 2012 NED
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MaryinSarasota
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Joined: Nov 08 2008
Location: Sarasota
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Points: 362
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Posted: Jun 15 2009 at 9:40am |
Not newly diagnosed but would love to have their newsletter. Terri, you ARE a sweetie. Thank you!
Mary
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53 @ Dx 5/08 Stage 1, grade 3, IDC 1.6 cm, 0 nodes, TNBC, lumpectomy, chemo TAC-6, radiation-34 12/18/08
NED-10/09, PBM w/TE recon. 7/10, removal of TE/infec 8/10. CT chest. Rec fat-graft & stem cells
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cg---
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Joined: Jul 20 2007
Location: Canada
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Points: 1379
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Posted: Jun 15 2009 at 10:09am |
Kudos to you Terri for sharing this information.
We all know it is hard to find our way when we are blinded by tears and given the wrong directions or no direction at all by our doctors!
Love,
Connie
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Terri
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Joined: Nov 12 2007
Location: FL
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Points: 578
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Posted: Jun 15 2009 at 10:34am |
Mary & Connie,
I called the exec director of this org this a.m. to make sure it was ok with her if I posted her contact info and to also make sure they have experience with TNBC. We ended up talking for an hour about supplements & how many oncs in general are so uninformed or don`t want to tell their patients about nutrition, etc to complement mainstream tx. With TN we have so few ways to keep this damned disease away that it falls to us to do our research, eat healthier and exercise (when we have the energy to).
We also talked about how many women don`t even know about their pathology reports or the chemo they are taking, which , of course is a subject we`ve talked about many times on this site (OUR wonderful site) Which reminds me of a coworker who told me the other day that she`d never seen someone so "obsessed" with reading about BC and eating so well! She is a friend and she meant well, wanting me to just "be" and enjoy my life. And I HAVE been trying to balance getting on with my new life but also being aware of new studies and tx`s and that`s not easy. But I digress.............
Love to All,
Terri
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IDC DX 8/17/07 (age 41)
Stage 1 Grade 1-2, 1.35 cm
2 nodes neg, Lumpectomy 10/07
Chemo: FEC 100 x 6, 35 rads
BRCA 1/2 NEG
PET/CT & Brain CT Nov 09
Brain MRI Aug 2012 NED
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MaryinSarasota
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Joined: Nov 08 2008
Location: Sarasota
Status: Offline
Points: 362
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Posted: Jun 15 2009 at 10:40am |
Terri, did you try the website? I cannot seem to get it to work.
Edited by MaryinSarasota - Jun 15 2009 at 10:51am
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53 @ Dx 5/08 Stage 1, grade 3, IDC 1.6 cm, 0 nodes, TNBC, lumpectomy, chemo TAC-6, radiation-34 12/18/08
NED-10/09, PBM w/TE recon. 7/10, removal of TE/infec 8/10. CT chest. Rec fat-graft & stem cells
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Terri
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Joined: Nov 12 2007
Location: FL
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Points: 578
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Posted: Jun 15 2009 at 11:33am |
Mary,
I see what you mean about the website-sorry! I called them and just put the website address that was on their card up. I have several of their newsletters and other literature that my DH got for me when he ran across their booth at a health fair when he was traveling for business in south FL. I think the best thing is to call the 1-800 # and go from there. . How are you feeling??
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IDC DX 8/17/07 (age 41)
Stage 1 Grade 1-2, 1.35 cm
2 nodes neg, Lumpectomy 10/07
Chemo: FEC 100 x 6, 35 rads
BRCA 1/2 NEG
PET/CT & Brain CT Nov 09
Brain MRI Aug 2012 NED
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Nancy
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Joined: Jul 23 2007
Location: Altoona, PA
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Points: 3814
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Posted: Jun 15 2009 at 1:22pm |
Ladies,
Try this.
Nancy
The above website brings this up
ps...thank you dear Terri
Edited by Nancy - Jun 15 2009 at 1:22pm
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Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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MaryinSarasota
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Joined: Nov 08 2008
Location: Sarasota
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Posted: Jun 16 2009 at 1:42am |
Terri and Nancy,
Thanks for this link.
My health is pretty good. I am still waiting for someone to just give me $3000 to pay for the BRCA testing though, lol. My markers are being done on Tuesday but I really don't expect ... never mind.
"And I HAVE been trying to balance getting on with my new life but also being aware of new studies and tx`s and that`s not easy." This sounds like me too.
♥♥ Mary
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53 @ Dx 5/08 Stage 1, grade 3, IDC 1.6 cm, 0 nodes, TNBC, lumpectomy, chemo TAC-6, radiation-34 12/18/08
NED-10/09, PBM w/TE recon. 7/10, removal of TE/infec 8/10. CT chest. Rec fat-graft & stem cells
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Terri
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Joined: Nov 12 2007
Location: FL
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Posted: Jun 16 2009 at 7:19pm |
Mary,
Don`t "nevermind" yourself....you don`t expect what? I see you have a birthday coming up. I have always enjoyed mine and since BC we have even more to celebrate every year
Terri
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IDC DX 8/17/07 (age 41)
Stage 1 Grade 1-2, 1.35 cm
2 nodes neg, Lumpectomy 10/07
Chemo: FEC 100 x 6, 35 rads
BRCA 1/2 NEG
PET/CT & Brain CT Nov 09
Brain MRI Aug 2012 NED
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MaryinSarasota
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Posted: Jun 17 2009 at 4:47am |
I get to be 54 this week. I too enjoy mine. What's not to love? I was never-minding so as not to jinx my tumor markers Tuesday. Don't expect to find anything out of the ordinary. :) No space shuttle this morning. I was up and out waiting. . Take care, Mary
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53 @ Dx 5/08 Stage 1, grade 3, IDC 1.6 cm, 0 nodes, TNBC, lumpectomy, chemo TAC-6, radiation-34 12/18/08
NED-10/09, PBM w/TE recon. 7/10, removal of TE/infec 8/10. CT chest. Rec fat-graft & stem cells
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Terri
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Joined: Nov 12 2007
Location: FL
Status: Offline
Points: 578
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Posted: Jun 17 2009 at 6:25am |
All the women in my family are so age concious. I have always been proud of my age and have always said "it`s better than the alternative" on my birthdays.
Today I am having my newest kitty daughter spayed so I have been a nervous wreck! I work for the vet where she is having the sx so you would think I`d be OK.
Here`s to low numbers for you on Tuesday!!
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IDC DX 8/17/07 (age 41)
Stage 1 Grade 1-2, 1.35 cm
2 nodes neg, Lumpectomy 10/07
Chemo: FEC 100 x 6, 35 rads
BRCA 1/2 NEG
PET/CT & Brain CT Nov 09
Brain MRI Aug 2012 NED
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