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09-05-2004, 10:37 PM
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#1
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Guest
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I went to CTCA in Zion last March for a second opinion for bone mets. They flew my husband and I there 03/15/04 at their cost. We immediately met with the staff, doctors, repeated tests, had more tests, etc. By 03/18/04 they had a treatment plan. My husband went home 03/20/04 and I stayed for 6 weeks and completed 22 rad. tx's. They provided some additional travel home for me to visit and all meals were included. All we had to pay for is my lodging and co-pays. They offer more then just traditional cancer threatment. Naturopathy, accupuncture, nutrition, mind/body, pastoral, physical therapy, etc. are included in the plan. All the staff were wonderful to us. I have never been treated with the respect and care anywhere else, like I was treated there. The radiation oncologist sat down with us and my scans and explained everything. We were never rushed to make a decision. I think you are doing the right thing to get a second opinion regardless of where you go. I'm sorry about your reoccurrence. God Bless You. Love, Lu Ann.
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09-05-2004, 11:03 PM
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#2
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Guest
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How did you work this with your insurance? I wanted to go there once and my insurance would not pay for treatments only a consultation. I had Cigna at the time. The center I dealted with was wonderful!! My insurance wasn't as nice telling me that they control where they send us cancer patients!!! Hope I am not getting too personal if so you can e-mail me off the board. Hugs, Sandy
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09-06-2004, 05:51 AM
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#3
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Guest
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I wanted to go to CTCA in Tulsa but they do not contract with Blue Cross of California. There was just no way.
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09-07-2004, 06:25 AM
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#4
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Guest
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LuAnn, thanks for sharing your experience. Sandy and Susie I am sorry that it didn't work out for you to go there. I am checking out to see what my insurance feels about it. It sounds like such a wonderful place. I'm still praying about it for me. If I am to go to the center in Tulsa the doors will continue to open. I pray for good treatment and care for you where ever you have to go to get it. God Bless each of you! Deb F
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09-17-2006, 10:27 AM
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#5
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Member
Join Date: Sep 2006
Location: Oklahoma
Posts: 9
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Newbie going to CTCA
Hi, I am new to this forum and happy to have found it. I am 46, married, and live in Tulsa but Blue Cross is not affliated with CTCA in Tulsa so I am flying out to Illinois with my husband on Tuesday for a 2nd opinion. Was diagnosed with Invasive Lobular Carcinoma on 09/08/06, with tumor 18cm in right and 2cm in left and surgeon did not perform biopsy on left like he was supposed to. Planned on doing a mastectomy all along so I am relieved to hear positive things about CTCA. They have been wonderful and are paying for mine and my husbands airfare. My housing is free along with free meals. My husband pays for housing and very low fees for meals. Can't wait to get there and get a COMPLETE and ACCURATE diagnosis. I am completely confident I made the right decision on postponing my mastectomy until I meet with CTCA. Good luck to everyone in their fight. I'm scared but both myself and my husband have a very positive attitude.
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09-17-2006, 02:14 PM
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#6
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Sher...
Or anyone else who goes to CTCA in Zion...I live about 2 hours from there, and worked in Zion at the ComEd Nuclear Plant for over a year until it closed....it is a great area and I have heard great things about them, although I have never gone there. If you have a break, take a walk along the State Beach Park on Lake Michigan...it is so refreshing! Good Luck!
__________________
"Be kinder than necessary, for everyone you meet is fighting some kind of battle."
Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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09-18-2006, 06:23 AM
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#7
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Member
Join Date: Sep 2006
Location: Oklahoma
Posts: 9
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I agree
Sheila,
I'm hoping to have many opportunities to walk the area, once again, in Zion. I was born and raised in Chicago and would love to be able to take my husband around the area and show him were I grew up. I left Chicago when I was 14 but still remember the area quite well, although I'm sure it's changed since I last visited about 1o years ago. What's your weather like there, by the way, so I know what to take clothes wise. Another good thing, my sister is only 4 1/2 hours away from CTCA so if I stay there for treatment she's just a phone call away to be there.
__________________
Sher
So Far:
Lump found 08/06 right breast.
DX 09/08 Invasive Lobular Carcinoma RB, Stage IV.
9/25 First Surgery - Complete Mascetomy w/expander and port placed.
ER/PR/HER2-, 15/20+
Major tissue damage.
METS to skin, liver, brain, sternum, lymph nodes.
10/3 Second Surgery - fat donated from lower ab and skin grafts from pubic area to chest
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09-18-2006, 08:00 AM
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#8
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Sher
It has been warm, in the 80's, but this week the high is supposed to only get to 60 with lows at night in the 40's....typical iLLINOIS WEATHER, GO FROM AIRCONDITIOING TO THE FURNACE! Yes Chicago has changed....lots and lots of traffic.....you are only a short trip from the outlet mall in Gurnee (Waukegan) and to Racine Wisconsin which is about 30 miles north...another pretty area.
__________________
"Be kinder than necessary, for everyone you meet is fighting some kind of battle."
Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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09-18-2006, 08:50 PM
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#9
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Member
Join Date: Sep 2006
Location: Bryn Mawr, PA
Posts: 22
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What is CTCA?
Skibunny
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09-18-2006, 09:46 PM
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#10
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Skibunny
CTCA is Cancer treatment Centers of America. They are known for taking a more integrative approach to treatment, incorporating "traditional" therapies (surgery/chemo/radiation) as well as nutritional and mind-body approaches. You may see their ads on TV.
__________________
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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09-19-2006, 05:27 AM
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#11
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Member
Join Date: Sep 2006
Location: Oklahoma
Posts: 9
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Brrr
Good Morning everyone! Thank You Sheila for sending us your cold weather LOL. It's 51 here so looks like we're about the same as far as weather goes. Last night my husband put on a jacket! I had a nerve racking day yesterday, the closer I get to flying out the more nervous and emotional I get. I feel like I'm going to have a nervous breakdown before I get there and actually meet with the drs. Why can't they just fly to our homes and do all the testing??? :-)
__________________
Sher
So Far:
Lump found 08/06 right breast.
DX 09/08 Invasive Lobular Carcinoma RB, Stage IV.
9/25 First Surgery - Complete Mascetomy w/expander and port placed.
ER/PR/HER2-, 15/20+
Major tissue damage.
METS to skin, liver, brain, sternum, lymph nodes.
10/3 Second Surgery - fat donated from lower ab and skin grafts from pubic area to chest
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09-19-2006, 06:28 AM
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#12
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Member
Join Date: Sep 2006
Location: Bryn Mawr, PA
Posts: 22
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Is there a list of the CTCA?
Thanks,
Skibunny
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09-19-2006, 08:03 AM
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#13
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Member
Join Date: Sep 2006
Location: Oklahoma
Posts: 9
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CTCA Url
Here's a link to their site:
http://www.cancercenter.com/
__________________
Sher
So Far:
Lump found 08/06 right breast.
DX 09/08 Invasive Lobular Carcinoma RB, Stage IV.
9/25 First Surgery - Complete Mascetomy w/expander and port placed.
ER/PR/HER2-, 15/20+
Major tissue damage.
METS to skin, liver, brain, sternum, lymph nodes.
10/3 Second Surgery - fat donated from lower ab and skin grafts from pubic area to chest
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09-19-2006, 12:07 PM
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#14
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Member
Join Date: Sep 2006
Location: Bryn Mawr, PA
Posts: 22
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Thanks so much
Skibunny
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09-19-2006, 12:34 PM
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#15
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Seattle has beautiful facility
Some of you may be looking for such a center who live on the west coast.
The head oncologist here is one I consulted with as a third opinion. I was very impressed with his ideas and ability to explain complicated treatment in detail. At that time they were not in the present facility and I chose SCCA which was going into a brand new building with all the latest, bright, shiny and new. As well as a brilliant med onc who had few openings but was interested in my case.
If I develop another cancer, I would think seriously of seeking treatment at the Seattle branch of CTCA.
P.S. Sher - I am sure they will take wonderful care of you and put you at ease as quickly as possible. The fear of the unknown is the worst.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.
MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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09-19-2006, 09:59 PM
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#16
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Senior Member
Join Date: Nov 2004
Location: Streetsboro, Ohio
Posts: 365
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I had wonderfull care while being treated at CTCA in Zion, Ill.
Sher I can't believe you have to go all the way to Zion when CTCA is right in your backyard in Tulsa.
We have anthem Blue Cross which is not in their system, but they still accepted my insurance as payment in full. I did have to pay deductable and co-insurance but it was the same as if I were in network. Maybe things have changed since I was there in 2004.
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