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09-04-2009, 05:11 PM
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#21
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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
Celeste, Congratulations...thats wonderful news.  I know what a good feeling that is when you get the all clear. YEAH!
I'm going to email them and see if they "might" consider letting me in this study...I meet all the criteria except that I'm a little further out then the 36 months. It certainly can't hurt to email them...so off I go. lol Thanks for letting us know they might accept people outside their criteria...I for one apperciate it. Again... big congratulations.
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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09-14-2009, 08:53 AM
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#22
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Senior Member
Join Date: Jan 2007
Posts: 368
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Re: FREE Brain MRI FREE
I called again and left another message stressing that I'm quickly coming up on the 36 month out date, so need an answer on whether they are interested in my participation. So, I'm hoping for a response soon.
__________________
12/12/06- IDC Stage III, 4x A/C, 35 rads, Herceptin 1 year
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09-17-2009, 07:53 PM
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#23
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Senior Member
Join Date: Apr 2006
Posts: 131
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Re: FREE Brain MRI FREE
Maybe I missed finding it, but was it accepted for outside of Chicago.?
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09-17-2009, 09:21 PM
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#24
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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
Hi Charlotte, Yes Joe said they are accepting people out of the Chicago area. I've emailed them twice & have heard nothing back yet? I think it's time I tried calling them & see if I can find anything out that way.
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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09-18-2009, 05:36 AM
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#25
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Senior Member
Join Date: Jan 2007
Posts: 368
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Re: FREE Brain MRI FREE
Still no answer here either Chelee, but I'm thinking maybe she's on vacation or something. I haven't give up yet.
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09-18-2009, 12:10 PM
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#26
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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
Brenda, Thanks for update. I'm not going to give up yet either...I'd really like to be accepted for this if at all possible. Keeping my fingers crossed.
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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09-18-2009, 03:03 PM
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#27
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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 did call today...at least the study still seems to be up & running since the menu option 8 did explain the study and asked if your Her2 & stage III or IV. I left my information so I will continue to keep my fingers crossed. I don't think they would still be accepting names for this study if it was full.
Brenda, it was mentioned by one member here that they are considering even some woman that might be a bit out of the criteria...so don't worry about being so close to the 36th month cut off. I'm past the 36 months but I'm still going to give it a try. Worse that can happen is they will tell me no.
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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09-19-2009, 06:00 AM
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#28
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Senior Member
Join Date: Jan 2007
Posts: 368
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Re: FREE Brain MRI FREE
Chelee, I didn't get a menu option at all?
Just voice mail, leave a message.
I used this number- (773) 250-0422 Office
__________________
12/12/06- IDC Stage III, 4x A/C, 35 rads, Herceptin 1 year
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09-19-2009, 01:23 PM
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#29
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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
Hi Brenda, When I went back over Joe's orignal post about this to read the criteria...I noticed the number that was given was different from the office number. I'll paste it below. Once you hit option 8 it asks if your Her2 & stage III or IV....then to please leave your information so they can get back to you. Good luck.
Chelee
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For more information about the study, please call (773) 250-0400 and select menu option “8” between 8:00 AM & 5:00 PM CST
__________________
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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09-21-2009, 10:32 AM
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#30
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Senior Member
Join Date: Jan 2007
Posts: 368
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Re: FREE Brain MRI FREE
Thanks Chelee, I totally overlooked that.
I called and left my info.
__________________
12/12/06- IDC Stage III, 4x A/C, 35 rads, Herceptin 1 year
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10-01-2009, 04:16 AM
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#31
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Senior Member
Join Date: Apr 2006
Posts: 131
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Re: FREE Brain MRI FREE
I also have been having problems getting to give the people my info.In all probably, I will not make the grade,,, too far out.. We will see.Charlotte
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10-01-2009, 04:21 AM
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#32
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Senior Member
Join Date: Apr 2006
Posts: 131
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Re: FREE Brain MRI
another question... would this test encompass folks like me?I have IBC( 4th stage).. also, I am only taking tykerb and xeloda. on a daily basis.
would like to participate in this study if possible.
Thanks, Charlotte
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10-01-2009, 04:33 AM
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#33
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Senior Member
Join Date: Jan 2007
Posts: 368
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Re: FREE Brain MRI FREE
Charlotte, I left my info with them on Sept 21st and haven't heard back from them yet.
__________________
12/12/06- IDC Stage III, 4x A/C, 35 rads, Herceptin 1 year
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10-01-2009, 06:02 AM
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#34
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Senior Member
Join Date: May 2006
Posts: 144
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Re: FREE Brain MRI FREE
I've also phoned & e-mail and haven't gotten a response.
Either they're swamped or they have enough people for their study.
__________________
- Anna
Stage I - DX 9/2005 ER/PR-, HER2+, grade 3, DCIS, IDC multi-focal (1.05cm)
DD 4 A/C finished Jan 31, 2006
Herceptin weekly finished Jan 31, 2007
recurrence to chest wall on last month of Herceptin
Stage 3B - 3/15/07 - 2 carcinomas in dermal lymphatic
Rads finished 6/5/07
12x TH finished 9/10/07
12/07 - Clear scan!
3/08 - 4 month Melatonin trial
1/09 - osteoperosis - start Alendronate
2/09 - 4-month Simivastin trial
3/13 - take drug holiday after 5 years of Alendronate
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10-01-2009, 04:36 PM
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#35
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Senior Member
Join Date: Sep 2007
Location: Near Chicago
Posts: 196
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Re: FREE Brain MRI FREE
I'm guessing they're just slow. Don't tell them but shortly after Joe posted this, I called, set up a time (scheduled myself to get to work late) and then didn't hear back. They were apologetic but I decided to wait to see what happened here (before scheduling anymore time off from work). It seems like not a well organized study (or maybe it's just really slow or there are other limitations and they are just doing the best they can).
__________________
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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10-01-2009, 05:19 PM
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#36
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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 called twice and left my information...& I have also emailed them. I have not heard back from them by phone or email and it's been a while since I contacted them. If there study is full you would think they would post that some where or at least have someone get back to us.
I have a brain MRI set-up for Oct. 6th at my cancer center now...so it doesn't matter to me. I thought being in the study would of been nice, but now that I've had a recurrance I'm not waiting. I do hope they eventually let people know if it's full or not. Good luck to those waiting.
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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10-24-2009, 06:45 PM
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#37
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Senior Member
Join Date: Feb 2008
Location: South East Wisconsin
Posts: 3,431
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Re: FREE Brain MRI FREE
E-mailed them with info on 10/20/09. No response.
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10-25-2009, 05:53 AM
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#38
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Senior Member
Join Date: Jan 2007
Posts: 368
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Re: FREE Brain MRI FREE
It's been more than a month for me, so I'm giving up on this trial.
__________________
12/12/06- IDC Stage III, 4x A/C, 35 rads, Herceptin 1 year
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