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07-23-2009, 06:20 PM
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#1
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Webmaster
Join Date: Feb 2005
Location: Home of the "Flying Tomato"
Carlsbad, CA
Posts: 2,036
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FREE Brain MRI FREE
Early Detection of Brain Metastases from Advanced Breast Cancer through Education and Screening
Inclusion Criteria
- Subjects must have an initial primary diagnosis of high-risk and/or HER-2 positive breast cancer. For purposes of this screening study, high-risk breast cancer at initial diagnosis is defined as:
- Stage IV disease, OR
- HER-2 positive Stage III disease
B. Subjects must be ³18 years old.
C. Subjects must be within 3 to 36 months of first metastases or Stage IV diagnosis or within 12 to 36 months of initial diagnosis of HER-2 positive Stage III disease.
D. Subjects must sign a written informed consent form, approved by the Institutional Review Board (IRB).
Exclusion Criteria
- Subjects with a prior diagnosis of brain metastases.
B. Subjects who are unable to be safely exposed to magnetic resonance imaging (MRI). Most common exclusions include, but are not limited to, pacemakers, implanted defibrillators, neurostimulators, aneurysm clips, cochlear devices, or any other institution contraindications.
C. Women who are known to be pregnant.
D. Unwillingness of subject to give written informed consent.
For more information about the study, please call (773) 250-0400 and select menu option “8” between 8:00 AM & 5:00 PM CST
Michelle Catalano
Clinical Research Coordinator
Chicago Institute of Neurosurgery and Neuroresearch
4501 North Winchester, 4th Floor
Chicago, Illinois 60640
(773) 250-0422 Office
(877) 713-2694 Pager
(773) 250-0497 Fax
mcatalano@cinn.org
http://www.cinn.org
__________________
A Proud webmaster to the internet's most informed, educated, COMPASSIONATE and caring group of breast cancer survivors.
Illegitimi non carborundum
My Album
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07-24-2009, 12:33 PM
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#2
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Webmaster
Join Date: Feb 2005
Location: Home of the "Flying Tomato"
Carlsbad, CA
Posts: 2,036
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It is my understanding that you do not have to live in and near Chicago. Have your oncologist make the necessary arrangements with the CINN foundation and you may receive your MRI locally.
Regards
Joe
__________________
A Proud webmaster to the internet's most informed, educated, COMPASSIONATE and caring group of breast cancer survivors.
Illegitimi non carborundum
My Album
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07-24-2009, 04:46 PM
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#3
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Oh I read the title wrong...I thought you could get a free brain. Oh well....
__________________
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial
5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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07-24-2009, 06:01 PM
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#4
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Senior Member
Join Date: Oct 2008
Location: Detroit, MI
Posts: 205
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Lol
Chrisy-
You are so funny!!!
__________________
Maureen
My loves
IDC & DCIS, HER2+++ Diagnosis: October 1, 2008 - Tumor: 6.8 centimeters, never showed on mammograms
- ER-/PR-
- November 2008: Sentinal Lymph node surgery. 6 out of 9 lymph nodes with cancer
- Stage IIIc
- Lapatinib Clinical Trial start: November, 2008
- Surgery: May 5, 2009
- Started Herceptin: May 19, 2009
- Started Radiation (33 rounds): June 10, 2009
- September 2009: Moved to Michigan to be closer to family
- 12/09 - still on Herceptin until May 2010
- August 2010: Port out, port out, port out port out port port port out port ooooout...da da da dant! (to the music of the Pink Panther)
Blog: http://moonsfamily.blogspot.com
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07-24-2009, 07:02 PM
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#5
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Senior Member
Join Date: Sep 2008
Location: Eugene, Oregon
Posts: 347
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Great! I'm calling first thing in the morning...or maybe I'll have to wait til Monday. Thanks for the tip!
__________________
"Dancers Against Cancer" in the Eugene, OR Komen Race for the Cure 2010
Diagnosed 8/7/08 with stage 3 invasive ductal carcinoma, micropapillary pattern, Her2 3+, ER+,PR-, grade II, positive lymph nodes.
Received 6doses of Taxotere, Carboplatin with Herceptin continuing for a year...DONE.
1/28/09 Left Modified Radical Mastectomy, Right Simple Mastectomy.
Surgery pathology: No invasive carcinoma present and 17 lymph nodes removed all negative! Only small amount of carcinoma in situ in left breast.
March/April '09, Radiation to left chest wall.
Currently involved in Neratinib clinical trial.
"Well being I won
and wisdom too,
I grew and joyed in my growth;
from a word to a word
I was led to a word
from a deed to another deed." (Odin)
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07-24-2009, 08:37 PM
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#6
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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You and me Chrisy - I thought the same thing.
The Man with Two Brains is one of my fav movies.
Just call me Dr. Hufurrrrr.
__________________
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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07-25-2009, 03:22 PM
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#7
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Senior Member
Join Date: Jan 2007
Posts: 368
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I contacted them about it before and then my hubby didn't want to make the trip to Chicago. If they'll do it locally, then I'm in.
__________________
12/12/06- IDC Stage III, 4x A/C, 35 rads, Herceptin 1 year
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07-26-2009, 12:15 PM
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#8
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Senior Member
Join Date: Sep 2007
Location: Near Chicago
Posts: 196
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I think I contacted them before, gave information (I qualified) but then they never got back to me. Maybe they are more seriously pursuing the study now.
Melanie
__________________
Diagnosed: 7/13/07 (or 7/7/07)
Surgery: 8/15/07 Modified Radical One Side with Lymph Node Dissection
Pathology Report: ER/PR-, HER2+ with FISH at 8.4 copies, Grade 3, Stage IIIa, 3.2 cm tumor plus 4/19 positive lymph nodes
Portacath: 9/7/07
Chemo: 9/14/07 with AC (every three weeks) for four rounds
Physical Therapy for ROM Loss / "Cording" (but not Lymphodema)
Taxol + Herceptin weekly (started 12/2007 with 8 of 12 Taxol)
Radiation: (28 rads from 3/07 to 4/07)
Reconstruction (silicone implant)
Herceptin done (10/08)
Cognitive Remediation (11/08 - 12/08)
Lymphedema Diagnosed 5/10/10 (almost 3 years post cancer diagnosis)
Lymphedema Rehab 9/10/10 - 11/10/10
Six years NED...7/7/2013!
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07-26-2009, 01:39 PM
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#9
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Webmaster
Join Date: Feb 2005
Location: Home of the "Flying Tomato"
Carlsbad, CA
Posts: 2,036
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Melanie,
They had personnel problems. They have promised to follow up on all applicants.
Regards
Joe
__________________
A Proud webmaster to the internet's most informed, educated, COMPASSIONATE and caring group of breast cancer survivors.
Illegitimi non carborundum
My Album
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07-27-2009, 12:31 AM
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#10
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Chrisy, lmao! Too funny. 
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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07-29-2009, 05:11 PM
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#11
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Senior Member
Join Date: Sep 2007
Location: Near Chicago
Posts: 196
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Re: FREE Brain MRI FREE
It doesn't make sense to me that they would limit the study to those in the Chicago area. If so, how are they advertising? I called and, Joe's right, this time they are serious. I'm supposed to meet with them and get an MRI probably sometime next week. Maybe I can ask them then. Or, better yet, one of you who has called from outside of the Chicago area could say.
Melanie
__________________
Diagnosed: 7/13/07 (or 7/7/07)
Surgery: 8/15/07 Modified Radical One Side with Lymph Node Dissection
Pathology Report: ER/PR-, HER2+ with FISH at 8.4 copies, Grade 3, Stage IIIa, 3.2 cm tumor plus 4/19 positive lymph nodes
Portacath: 9/7/07
Chemo: 9/14/07 with AC (every three weeks) for four rounds
Physical Therapy for ROM Loss / "Cording" (but not Lymphodema)
Taxol + Herceptin weekly (started 12/2007 with 8 of 12 Taxol)
Radiation: (28 rads from 3/07 to 4/07)
Reconstruction (silicone implant)
Herceptin done (10/08)
Cognitive Remediation (11/08 - 12/08)
Lymphedema Diagnosed 5/10/10 (almost 3 years post cancer diagnosis)
Lymphedema Rehab 9/10/10 - 11/10/10
Six years NED...7/7/2013!
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07-29-2009, 07:28 PM
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#12
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Senior Member
Join Date: Sep 2008
Location: Eugene, Oregon
Posts: 347
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Re: FREE Brain MRI FREE
I called them Monday and left a message and they called me back Tuesday. They had trouble getting enough people in the Chicago area so they're trying to take others. They just have to contact my local MRI people and make sure they will do the MRI for the same price that the study's grant pays. If that's ok then I'll get it. I should be hearing back from them Monday. I'll let you know what happens.
Thanks again for the info Joe.
Celeste
__________________
"Dancers Against Cancer" in the Eugene, OR Komen Race for the Cure 2010
Diagnosed 8/7/08 with stage 3 invasive ductal carcinoma, micropapillary pattern, Her2 3+, ER+,PR-, grade II, positive lymph nodes.
Received 6doses of Taxotere, Carboplatin with Herceptin continuing for a year...DONE.
1/28/09 Left Modified Radical Mastectomy, Right Simple Mastectomy.
Surgery pathology: No invasive carcinoma present and 17 lymph nodes removed all negative! Only small amount of carcinoma in situ in left breast.
March/April '09, Radiation to left chest wall.
Currently involved in Neratinib clinical trial.
"Well being I won
and wisdom too,
I grew and joyed in my growth;
from a word to a word
I was led to a word
from a deed to another deed." (Odin)
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08-10-2009, 05:45 PM
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#13
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Senior Member
Join Date: Sep 2008
Location: Eugene, Oregon
Posts: 347
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Re: FREE Brain MRI FREE
Turned out that MRI's are much much more expensive in Oregon than Chicago! Conveniently, my husband's going to Chicago for work soon and this was a good excuse for me to go see him while he's there! I'll have my brain MRI soon. Aaaah, I feel better now. I didn't want to have to lie to my doctor to get one, and now I get to help support a study that hopefully will help prevent others from having to do that, too. This came along at the perfect time for me.
Joe and Christine, I see you taught your new dog some old tricks!
Love, Celeste
__________________
"Dancers Against Cancer" in the Eugene, OR Komen Race for the Cure 2010
Diagnosed 8/7/08 with stage 3 invasive ductal carcinoma, micropapillary pattern, Her2 3+, ER+,PR-, grade II, positive lymph nodes.
Received 6doses of Taxotere, Carboplatin with Herceptin continuing for a year...DONE.
1/28/09 Left Modified Radical Mastectomy, Right Simple Mastectomy.
Surgery pathology: No invasive carcinoma present and 17 lymph nodes removed all negative! Only small amount of carcinoma in situ in left breast.
March/April '09, Radiation to left chest wall.
Currently involved in Neratinib clinical trial.
"Well being I won
and wisdom too,
I grew and joyed in my growth;
from a word to a word
I was led to a word
from a deed to another deed." (Odin)
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08-11-2009, 01:09 PM
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#14
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Re: FREE Brain MRI FREE
Michelle Catalano returned my phone call yesterday about the Brain Metastes trial.
I am going to donate my MRI results that I had done in June to the trial. She indicated that I would need to have a follow up MRI in June 2010.
I told her that if the amount they have is not enough to pay for the MRI. I will talk to my insurance company about the remainder.
This study is going to try and convince insurance companies that it better to be proactive about checking the brain for HER2 metastes.
They need 50 participants, and I think she told me they have around 12.
Amelia
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08-12-2009, 01:01 AM
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#15
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: FREE Brain MRI FREE
I've love to have a free brain MRI...but I'm 7 months out too far darn it.  I've been having bad headaches for a while now...and I'm so tired of fighting my oncologist for everything.
I thought they would of had this study filled the minute it was posted. I'm really surprised they only have 12 of the 50 they are looking for. Maybe I could email them...do they ever make exceptions for studies like this? Probably no such luck...right?
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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08-20-2009, 08:23 AM
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#16
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Senior Member
Join Date: Sep 2008
Location: Eugene, Oregon
Posts: 347
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Re: FREE Brain MRI FREE
Got the MRI done! It wasn't easy, though. I was in it for about 5 minutes when they pulled me out and said, "just a minute". Lots and lots of minutes later they said their computer was down and they were trying to fix it. Couldn't get it fixed that evening, so I had to delay the next morning's flight so I could do it the next morning. Aaaah! So frustrating, and weird that it would happen at that moment, but it worked out. I'll get back to you when I get the results!
Celeste
__________________
"Dancers Against Cancer" in the Eugene, OR Komen Race for the Cure 2010
Diagnosed 8/7/08 with stage 3 invasive ductal carcinoma, micropapillary pattern, Her2 3+, ER+,PR-, grade II, positive lymph nodes.
Received 6doses of Taxotere, Carboplatin with Herceptin continuing for a year...DONE.
1/28/09 Left Modified Radical Mastectomy, Right Simple Mastectomy.
Surgery pathology: No invasive carcinoma present and 17 lymph nodes removed all negative! Only small amount of carcinoma in situ in left breast.
March/April '09, Radiation to left chest wall.
Currently involved in Neratinib clinical trial.
"Well being I won
and wisdom too,
I grew and joyed in my growth;
from a word to a word
I was led to a word
from a deed to another deed." (Odin)
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08-23-2009, 08:44 AM
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#17
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Senior Member
Join Date: Sep 2007
Location: Near Chicago
Posts: 196
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Re: FREE Brain MRI FREE
It seems odd to me that they would have trouble recruiting. There are probably half a dozen cancer treatment centers in/around Chicago. I'm sure there's a good reason. I just don't know what.
Melanie
__________________
Diagnosed: 7/13/07 (or 7/7/07)
Surgery: 8/15/07 Modified Radical One Side with Lymph Node Dissection
Pathology Report: ER/PR-, HER2+ with FISH at 8.4 copies, Grade 3, Stage IIIa, 3.2 cm tumor plus 4/19 positive lymph nodes
Portacath: 9/7/07
Chemo: 9/14/07 with AC (every three weeks) for four rounds
Physical Therapy for ROM Loss / "Cording" (but not Lymphodema)
Taxol + Herceptin weekly (started 12/2007 with 8 of 12 Taxol)
Radiation: (28 rads from 3/07 to 4/07)
Reconstruction (silicone implant)
Herceptin done (10/08)
Cognitive Remediation (11/08 - 12/08)
Lymphedema Diagnosed 5/10/10 (almost 3 years post cancer diagnosis)
Lymphedema Rehab 9/10/10 - 11/10/10
Six years NED...7/7/2013!
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08-23-2009, 11:44 AM
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#18
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Senior Member
Join Date: Oct 2007
Location: Portage, IN
Posts: 198
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Re: FREE Brain MRI FREE
I am scheduled for my MRI on the 29th.
Keeping fingers crossed that all is well.
__________________
10/15/07: Diagnosed at age 46 lymph node removal (2)
ER/PR - Her2 +++
11/07: Port Installed
11/07 - 1/08: AC
1/30/08: Right Mast Stage lllC
2/28/08: Start Taxol and Herceptin weekly.
5/15/08: Finished Taxol
8/12/08: Finished 33 Rads
1/29/09: Finished Herceptin
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08-30-2009, 09:05 AM
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#19
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Senior Member
Join Date: Jan 2007
Posts: 368
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Re: FREE Brain MRI FREE
I called and left a message. They never called me back.
__________________
12/12/06- IDC Stage III, 4x A/C, 35 rads, Herceptin 1 year
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09-04-2009, 04:54 PM
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#20
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Senior Member
Join Date: Sep 2008
Location: Eugene, Oregon
Posts: 347
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Re: FREE Brain MRI FREE
It's official......(drumroll)....my brain is clear! Whew. I feel sooooo much better. I asked Michelle about whether she thought they might take on patients who maybe didn't "quite" meet the criteria for one detail or another and she said they should contact them and ask and they'll figure it out. I have also experienced some long wait times for return calls, so don't give up too easily, and call and call again.
Celeste
__________________
"Dancers Against Cancer" in the Eugene, OR Komen Race for the Cure 2010
Diagnosed 8/7/08 with stage 3 invasive ductal carcinoma, micropapillary pattern, Her2 3+, ER+,PR-, grade II, positive lymph nodes.
Received 6doses of Taxotere, Carboplatin with Herceptin continuing for a year...DONE.
1/28/09 Left Modified Radical Mastectomy, Right Simple Mastectomy.
Surgery pathology: No invasive carcinoma present and 17 lymph nodes removed all negative! Only small amount of carcinoma in situ in left breast.
March/April '09, Radiation to left chest wall.
Currently involved in Neratinib clinical trial.
"Well being I won
and wisdom too,
I grew and joyed in my growth;
from a word to a word
I was led to a word
from a deed to another deed." (Odin)
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