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Old 07-26-2010, 12:19 AM   #1
Rendi69CA
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Location: Grand Terrace, Southern California
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Talking Pre screening for TDM-1

I am so blessed they have this program at Beaver Medical Clinic in Highland, CA. The clinic is 15 minutes away from my house.

July 20th-Talk to the coordinator and doctor, sign consent forms, and blood work.

July 21th-CT Scan from my neck to pelvis

July 22th-Doctor called to tell me that my right lung have collasped.

July 23th-At the pulmonary office getting a bronchscopy with 3 biopsies. Results next week.

July 26th-Echo

July 29th-I will find out if I am eligible for the program.
__________________
04/97- breast bx. diagnosis breast cancer.
05/97- radical mastectomy; 5cm tumor & 11 lymph nodes.
10/97- City of Hope, high dose chemotherapy.
11/97- 36 radiation therapy.
01/98- NED; tamoxifen.
02/02- breast reconstruction.
08/04- recurrence; mets to rt lung; thoracentesis; femara.
09/04- thoracentesis; ER/PR +, Her2+++.
10/04- total abdominal hysterectomy.
02/06- mets to 9th rib; monthly zometa; arimidex.
06/06- medi port insert; weekly herceptin.
10/06- 3 weeks herceptin treatment.
02/07- mets to liver; arimidex
11/07-liver clear
02/08-chemo taxol/herceptin weekly treatment
12/08-taxol not working
01/09-navelbine/herceptin weelky
03/09-navelbine not working
04/09-xeloda/tykerb
09/09-30 radation to neck; xeloda/tykerb not working
11/09-Gemzar/herceptin weekly
04/10-tykerb/herceptin weekly
06/10-cancer spread to left lung;stop treatment; tap
07/10-right lung collasps; TDM1
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Old 07-26-2010, 02:54 AM   #2
Ellie F
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Re: Pre screening for TDM-1

Hi Rendi
I am going to pray hard that you ARE eligible

Hugs
Ellie
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Old 07-26-2010, 07:34 AM   #3
jml
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Re: Pre screening for TDM-1

Rendi~
Keeping fingers crossed and praying that you get through the rest of the screening and can start the drug next week.
I'm going to Nashville (from Atlanta) to screen on August 3rd. After that I'll have to have a CT and repeat an echo, and God willing will start drug on August 10th.
Please keep us posted and know that you have family of friends here cheering you on~

Jessica
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Old 07-26-2010, 09:46 AM   #4
StephN
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Re: Pre screening for TDM-1

Thanks for letting us know, Rendi. You have been on a long road with your treatments.

All my best thoughts and wishes for both Rendi and Jessica to pass the screening and start the drug within the next 2 weeks.

The Peanut Gallery here is CHEERING for these and other sisters.
__________________
"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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Old 07-26-2010, 10:01 AM   #5
Emelie B
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Re: Pre screening for TDM-1

Best of luck ladies!!! We are all behind you and are praying that you qualify and this is the magic bullet.
Emelie
__________________
Nov. 2006-IDC with Her2 +++
A/C for 3 rounds
Dec. 2006- Herceptin and Taxotere
March 2007-MRM with 8 of 14 lymph node involvement
May 2007-36 Rads
Sept. 2007- Stopped Herceptin
Jan. 2010- CT scan shows enlarged lymph nodes in sternum and lung involvement
Feb. 2010-PET scan shows mets to liver, lung, lymph nodes and bone
Feb. 2010- Started Herceptin/Taxol and Zometa
April 2010-PET scan clear. Herceptin and Zometa
June 2010- Stopped Herceptin continue Zometa and still NED
August 2010-Back on Herceptin and Zometa every 3 weeks
August 13, 2010- Had another port placed
August 24, 2010- PET scan clear. Herceptin and Zometa every three weeks
Nov. 2010-PET scan clear
Feb. 2011-Brain MRI clear
March 2011- PET scan clear
May 2011- PET scan clear
Sept. 2011- PET, Mammo, Bone Scan all clear- Herceptin only
March 2012-Recurrence in lungs and tumor around pota hepatis artery. Added Navelbine to herceptin
April 2012- Entered palliative care
June 5, 2012-Entered hospice care
Planning my memorial
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Old 07-26-2010, 10:46 AM   #6
Mary Anne in TX
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Re: Pre screening for TDM-1

Good luck...I'm prayin' and believin'. ma
__________________
MA in TX.
Grateful for each and every day....

Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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Old 07-26-2010, 08:37 PM   #7
chrisy
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Re: Pre screening for TDM-1

Rendi,
Keeping my fingers crossed that you will be eligible for the study. You have been on quite the roller coaster...you are one tough lady!
__________________
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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Old 07-26-2010, 09:21 PM   #8
CarolynME
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Re: Pre screening for TDM-1

Rendi and Jessica,

I am hoping and praying that you both will be able to receive the TDM-1 and it works for both of you!

Love,

Carolyn
__________________
1/10 Diagnosed with IDC; 3.7 cm tumor
3/10 Left Radical Masectomy; 2 /16 nodes positive - Grade 3 ER+/PR-/HER2+++
4/10 BRCA1 and BRCA2 both negative
4/10 Pet Scan showed another node .07mm positive on the internal mammary area
4/10 ALLTO Trial - randomized for Arm 4 - Taxotere/Carboplatin and Herceptin only (no Tykerb) Began 6 cycles Taxotere/Carboplatin (every three weeks) and Herceptin weekly for eighteen weeks and then every three weeks until the end of April 2011
Radiation to begin 9/2010
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Old 07-26-2010, 10:07 PM   #9
Chelee
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Re: Pre screening for TDM-1

Rendi, I will be holding good thoughts and prayers that you get approved for the T-DM1. Your one tough cookie...so it's time for good things to come...may T-DM1 be your magic bullet.

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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Old 08-04-2010, 06:49 PM   #10
Rendi69CA
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Re: Pre screening for TDM-1

Hey ladies! I start my first treatment on July 29th. I'm in the program. Thanks everyone for the support. Jessica good luck :O)
__________________
04/97- breast bx. diagnosis breast cancer.
05/97- radical mastectomy; 5cm tumor & 11 lymph nodes.
10/97- City of Hope, high dose chemotherapy.
11/97- 36 radiation therapy.
01/98- NED; tamoxifen.
02/02- breast reconstruction.
08/04- recurrence; mets to rt lung; thoracentesis; femara.
09/04- thoracentesis; ER/PR +, Her2+++.
10/04- total abdominal hysterectomy.
02/06- mets to 9th rib; monthly zometa; arimidex.
06/06- medi port insert; weekly herceptin.
10/06- 3 weeks herceptin treatment.
02/07- mets to liver; arimidex
11/07-liver clear
02/08-chemo taxol/herceptin weekly treatment
12/08-taxol not working
01/09-navelbine/herceptin weelky
03/09-navelbine not working
04/09-xeloda/tykerb
09/09-30 radation to neck; xeloda/tykerb not working
11/09-Gemzar/herceptin weekly
04/10-tykerb/herceptin weekly
06/10-cancer spread to left lung;stop treatment; tap
07/10-right lung collasps; TDM1
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Old 08-04-2010, 06:50 PM   #11
Becky
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Re: Pre screening for TDM-1

Fantastic news! I am so happy for you.
__________________
Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 08-04-2010, 07:30 PM   #12
Sandra in GA
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Re: Pre screening for TDM-1

That is great news! Good luck with the treatments.
Sandra
__________________
Diagnosed: 7/25/08 ~ age 63, no family history
Surgery: 8/14/08 Bilateral mastectomy; tumor left breast, node dissection; right prophylactic with expanders: 1/12/10 latisimuss dorsi flap on left side: 9/22/10 implants in
Pathology Report: ER/PR-; HER2+ (3+); Grade 3, StageIII; 3cm tumor plus 21/21 lymph nodes positive; 5cm DCIS
Chemo: A/C; Taxol/Herceptin/Tykerb; phase II study at Mayo adding Tykerb for early stage
Radiation: 25 rads
Vaccine: Walter Reed GP2/AE37 vaccine study ~ last booster 9/17/2012
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Old 08-04-2010, 08:11 PM   #13
Emelie B
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Re: Pre screening for TDM-1

Congratulations!! Please do keep us posted on things. Hope all goes well.
Emelie
__________________
Nov. 2006-IDC with Her2 +++
A/C for 3 rounds
Dec. 2006- Herceptin and Taxotere
March 2007-MRM with 8 of 14 lymph node involvement
May 2007-36 Rads
Sept. 2007- Stopped Herceptin
Jan. 2010- CT scan shows enlarged lymph nodes in sternum and lung involvement
Feb. 2010-PET scan shows mets to liver, lung, lymph nodes and bone
Feb. 2010- Started Herceptin/Taxol and Zometa
April 2010-PET scan clear. Herceptin and Zometa
June 2010- Stopped Herceptin continue Zometa and still NED
August 2010-Back on Herceptin and Zometa every 3 weeks
August 13, 2010- Had another port placed
August 24, 2010- PET scan clear. Herceptin and Zometa every three weeks
Nov. 2010-PET scan clear
Feb. 2011-Brain MRI clear
March 2011- PET scan clear
May 2011- PET scan clear
Sept. 2011- PET, Mammo, Bone Scan all clear- Herceptin only
March 2012-Recurrence in lungs and tumor around pota hepatis artery. Added Navelbine to herceptin
April 2012- Entered palliative care
June 5, 2012-Entered hospice care
Planning my memorial
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Old 08-05-2010, 05:56 AM   #14
jml
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Re: Pre screening for TDM-1

Yay, Rendi! So happy for you.
I just went through my screening on Tuesday, signed the consent form but still have a CT & an echo to get through today. So holding my breath that those results fit the criteria.Until I hear for sure, I'm just holding my breath and not getting excited.

I am thrilled for you, Rendi.
May this drug knock this disease back out into oblivion.

Keeping the Faith~

Jessica
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Old 08-05-2010, 08:43 AM   #15
chrisy
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Re: Pre screening for TDM-1

YAY! Hoping that this one knocks the bejeezus out of that dumb canser!
__________________
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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Old 08-05-2010, 01:55 PM   #16
Chelee
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Re: Pre screening for TDM-1

Congratulations...that is wonderful news. I'm so happy for you. Sending positive thoughts that T-DM1 will do it's magic! Keep us updated if you feel up to it.

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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Old 08-05-2010, 04:39 PM   #17
krisvell
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Re: Pre screening for TDM-1

Rendi; YES! I am sooo happy for you and pray it will work really well. I was scrolling down your post with great emotion reflecting on how wonderful the people on this site are. I got to the end and you were approved for the Trial. What a wonderful surprise. Sending hugs, prayers and positive thoughts your way.
Kris...
__________________
06/08/09 - 55, IDC, IIIA, ER+/PR-/HER+++
Nottingham 6/9 - Grade 2 5.2cm, several nodes
06/23/09 - Neoadjuvant - TCH Herceptin til June
10/07/09 - Finished Chemo
10/27/09 - Mastectomy RB
Path Report: RB No residual tumor pCR,
2 of 15 pos - .5mm largest micromets
12/18/09 - Radiation started (28)
02/05/10 - Finished Radiation
01/11/10 - Started Femara
06/22/10 - Finished Herceptin.. My son's 22nd BD. Hope it's a sign! Hoping for the best.
11/15/10 - Started Walter Reed BC Vaccine trial at
1/04/11 - Sibley Mem. Had to withdraw due to met
01/23/11 - Stage IV - Brain Met 1.6cm 1.7cm
02/03/11 - Gamma Knife (2 fracts to minmize necrosis)
03/01/11 - Gamma Knife
6/11 - Necrosis
7/11 - Necrosis stopped & Tumor progression
8/11 = Now think it's really necrosis
9/11 - Avastin every two weeks -- It's working!! Necrosis is shrinking.
12/11 - Necrosis gone AVASTIN worked.
12/11 - Bone &CT found


Oct '10 - Ran Hartford 1/2 Marathon to Thank Dr. Slamon for Herceptin!
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Old 08-05-2010, 06:28 PM   #18
Jackie07
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Location: "Love never fails."
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Re: Pre screening for TDM-1

Thanks for the good news. T-DM1 has worked for all of our members so far. It will work for you, too.
__________________
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http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
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Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
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3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
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"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

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Old 08-07-2010, 06:31 PM   #19
Lori R
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Location: Evergreen, Colorado
Posts: 454
Re: Pre screening for TDM-1

Rendi and Jessica,
I am so thrilled for you Rendi. It sounds like TDM-1 was meant to be for you.

Jessica, we are ALL praying that you can wrap up the final details and begin treatment on 8/10.

I've been thinking of both of you frequently and wish you much success.

Please keep us posted as you are both an inspiration to us!!

Many, Many prayers coming your way.....take care....Lori
__________________
2007
Oct - Diagnosed - Stage IV
5 c.m. IDC - Left Side er/pr- Her2+++
Node + 2/14 - Single Liver Met
Double Mastectomy
Nov - Begin T+H
2008
Feb-Complete 6 cycles- T&H- NED
March - Continue - Herceptin Only
April - Rads for 6 weeks
2009
Continue Herceptin - Continue NED
April - Recurrance- 3 cm. Liver Met
May - Cryosurgery
June - November - Abraxane + Herceptin
Aug - PET/CT - CTC = 0 Back to NED
2010
January - Continue NED
July - Recurrance - 3 cm Liver Met CTC=1
August - Cryosurgery #2
August - November Navelbine
November - Back to NED - End Navelbine
2011
Feb - Recur - 4 cm Liver Met - Same Left Lobe
March Surgery it is -Couldn't get a clean margin
July - Confirmed continued liver involvement
August - Begin Herceptin + Tykerb
October - Mixed results from H+T
Add Abraxane + H + T - Nov - April
2012
January PET Scan - It's working!!
April - Back to NED
July - Recurrance
August - Begin TDM-1 Trial (Taxol + TDM-1)
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