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08-25-2009, 07:54 AM
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#1
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Senior Member
Join Date: Jun 2006
Location: South Florida
Posts: 477
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Update - T-DM1 Trial for Carolyn
Hi All,
I am back home after my trip to Detroit. CT scans, Blood draws, Echo, Cardio, and Physical exam. I know that they must do another blood draw prior to starting treatment but I have every reason to believe that I am in the study. That said, I will be confident once the IV starts running.
I will need to go there at least 7 times in the next 9 weeks and then I should be able to transfer closer to home. My treatment starts at 7AM in the Phase I chemo room. I am staying at a hotel close to the hospital with a free shuttle. I will keep you posted.
Thanks for you well wishes, thoughts and prayers!
Love, Hope, Peace,
Carolyn
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08-25-2009, 08:08 AM
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#2
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Senior Member
Join Date: Sep 2005
Location: MN
Posts: 731
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Re: Update - T-DM1 Trial for Carolyn
Yeah! So glad you are going to get in.
__________________
Pam
6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
9/02 stage IV bone mets femara
1/03 taxotere/herceptin/aredia
6/03 herceptin, aredia & faslodex
1/04 navelbine, herceptin, aredia
2/05 herceptin/aredia
7/05 xeloda/herceptin/aredia
3/07 xeloda/tykerb/aredia
5/08 taxol/avastin/aredia
2/09 gemzar/herceptin/zometa
7/09 Taxol/Carbo/Herceptin, zometa
10/09 navelbine/herceptin & zometa
2/10 herceptin & tykerb & zometa
4/10 add xeloda &aromasin
10/10 dx with dermatomyiositis triggered by cancer
11/10 restart herceptin, tykerb, zometa
12/10 surgery-place rod in R femur to stabilize bone
1/11 radiation to R femur - 20 tx
2/11 2nd surgery - rod in Left femur
2/11 tx eribulen -- suspended dx brain mets
3/11 brain mets wbr 20 tx
4/11 halaven; discontine 8/11 not working
8/11 radiation to left femur 20 tx'
8-9/11 rad to lower spine
9/11 abraxane/herceptin/zometa
9/12 xeloda/herceptin/zometa
12/12 ablation of liver
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08-25-2009, 08:36 AM
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#3
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: Update - T-DM1 Trial for Carolyn
So pleased for you. I pray that this will be the drug to get you and keep you in remission
Love Ellie
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08-25-2009, 08:38 AM
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#4
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Re: Update - T-DM1 Trial for Carolyn
Carolyn,
I am glad you got in the trial. Please keep us posted on how things are going.
Amelia
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08-25-2009, 08:42 AM
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#5
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Re: Update - T-DM1 Trial for Carolyn
Carolyn,
Good for you! Let us know how it goes, and if you have any questions, just ask.
Chris
Great news.
__________________
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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08-25-2009, 10:08 AM
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#6
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Re: Update - T-DM1 Trial for Carolyn
Carolyn,
Great news that you're in the trial. Praying that you'll have good results.
Joan
__________________
Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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08-25-2009, 06:12 PM
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#7
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Senior Member
Join Date: Oct 2006
Location: Louisville KY
Naples FL
Posts: 665
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Re: Update - T-DM1 Trial for Carolyn
So glad you got in and have started the process.
That is always a relief and I hope everything goes
smoothly with all the trips and treatments. My
thoughts and prayers are with you as you are
winging your way to a remission. Take care and
keep us posted as we care.
patb
__________________
patb
Diagnosed June, 06, Stage I, Grade3, ER+PR- Her2positive, No Nodes. A/C X 4. Radiation 33 with boost, Herceptin every two weeks until Nov.
07, Arimedex for 5 years. Mugas and Echo and chest xRay. Bone scan of whole Body, and Back of Brain and spine MRI.
CT scan of Lungs every six months
due to two small places. December
2009, bone scan due to bone pain.
Follow up test in 2010.
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08-25-2009, 09:39 PM
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#8
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: Update - T-DM1 Trial for Carolyn
Good luck with your treatment. Take care.
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08-25-2009, 09:44 PM
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#9
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Re: Update - T-DM1 Trial for Carolyn
Carolyn,
I am very excited for you! I think you must be in and I can only imagine your first infusion will be quite exciting. I do pray that this will bring you to NED.Praying that your txs go smoothly with NO complications.
Lexi
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08-26-2009, 06:08 AM
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#10
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Senior Member
Join Date: Feb 2007
Location: Paris, France
Posts: 858
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Re: Update - T-DM1 Trial for Carolyn
Well done Carolyn! You were right to fight to find a way to get in. I hope, with all my heart, it will be the right treatment for you. Keep us informed. Michka.
__________________
08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex
12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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08-26-2009, 12:26 PM
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#11
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Senior Member
Join Date: Jul 2008
Posts: 186
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Re: Update - T-DM1 Trial for Carolyn
The combination T-DM1, Pertuzumab , Paclitaxel trial conducted at Dana Farber, Boston is now is now actively recruiting participants.
http://www.clinicaltrials.gov/ct2/sh...m=t-dm1&rank=5
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08-27-2009, 04:39 AM
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#12
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Senior Member
Join Date: Jan 2008
Location: Evergreen, Colorado
Posts: 454
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Re: Update - T-DM1 Trial for Carolyn
Carolyn,
I am so happy that you've made it this far and so quickly!!! Here is to continuing to move forward and success on this trial.
Thank you for keeping us informed.
Expecting great things.....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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