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10-23-2009, 11:02 PM
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#21
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Senior Member
Join Date: Feb 2008
Location: South East Wisconsin
Posts: 3,431
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Re: Prayers are answered ~~~
Seems like doing TDM1 now secures your options. Any chance of getting the Tykerb override in writing in case you need it down the road?
Which TDM1 trial you are aiming for?
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10-24-2009, 02:50 AM
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#22
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Senior Member
Join Date: May 2006
Location: Haarlem, the Netherlands
Posts: 835
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Re: Prayers are answered ~~~
I know very little about these trials, but as a business coach, I know something about making decisions. If there's no difference medically speaking between taking one tx first and then the other, or doing it the other way round, you should take the one that's hardest to get into. If it's more likely that you will be able to get Tykerb after the TDMI, you should choose to do the latter first.
And there's a neat trick to test your own instincts: Get a coin and flip it. Decide which side it Tykerb and which one is the TDMI trial. Now notice your first emotion when you see the outcome. Are you relieved? Than that's the way you instinctively want to go. If you are disappointed, you want to go the other way, and that's ok too. If you don't have a strong feeling either way, you can come to a decision talking to the experts. You will feel ok with whatever you decide.
Love
Jacqueline
__________________
Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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10-24-2009, 04:20 AM
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#23
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Senior Member
Join Date: Sep 2005
Location: MN
Posts: 731
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Re: Prayers are answered ~~~
So thrilled to read your news!!! Two good decisions = no bad choice. Go with your gut feeling on this.
__________________
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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10-24-2009, 05:26 AM
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#24
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Senior Member
Join Date: Sep 2006
Location: Chicago, IL
Posts: 105
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Re: Prayers are answered ~~~
I am so happy for you! Good luck!
Lisa
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10-24-2009, 07:59 AM
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#25
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Senior Member
Join Date: Jan 2008
Location: Evergreen, Colorado
Posts: 454
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Re: Prayers are answered ~~~
Sheila,
Wow..Congrats!! Happy dance, happy dance.
I vote TDM-1 the miracle drug. I fully agree with your logic that you could use the TDM-1 and then (IF) you needed to you could use the Tykerb as a fall back.
Rich...our resident attorney gave great advice to get agreements in writing regarding the Tykerb to save time. But of course...we know you won't need it.
I am thrilled for you and also wanted to let you know that you are an inspiration to us all in terms of being your own advocate and NEVER, NEVER taking NO for an answer.
AWESOME
__________________
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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10-24-2009, 08:26 AM
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#26
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Re: Prayers are answered ~~~
Shelia,
I am so happy to hear your good news. Like Lori, you have always been an inspiration to me not to give up Hope. You are truly a Warrior.
Please let us know which choice you make. Will you have to travel far to do the trial?
Amelia
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10-24-2009, 08:38 AM
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#27
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Senior Member
Join Date: Dec 2008
Location: Southern Indiana
Posts: 455
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Re: Prayers are answered ~~~
Shelia,
Great job on your diligence with your treatments. You are a hero for all of us!!!
__________________
Alice
04/08 age 50 III IBC Her2+++ ER/PR-8cm 14/14 Double M, Body and Brain CT/PET clear, ? on spine,Muga 53
06/08, 4 A/C, Neulasta
08/08, Herceptin/tax 12 every week
10/08, CT/PET clear, ? on pelvis, hips, MUGA 43, started Enalaprial for heart, Herceptin every 3 weeks
11/08 33Rads; 12/08 MUGA 48
2/09 MRI spine and bone scan, old mets to spine, Chest x-ray, blood work, IV NED,regular CPAP use,Zometa x6, first -flue like symptoms 2 days;Herceptin x3; stage 2 lymphoedema..sleeve and glove
4/09 Brain MRI - CLEAR; MUGA 54
7/09 chest ultrasound,
10/09 PET, brain and spin MRI NED Herceptin only. MUGA 59!!!
1/11 Hip replacement 7/11 Hip 2 replacement
4/12 4 years!! Herceptin
6/12 start reconstruction finish in 12/12
2/14 Herception - 6 years!!!
1 Corinthians 10:13 "No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you
can stand up under it."
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10-24-2009, 09:07 AM
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#28
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Senior Member
Join Date: Aug 2006
Posts: 79
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Re: Prayers are answered ~~~
Hi Sheila,
I am on the TDM-1 in Ohio. I haven't had the first staging yet, but so far it has been easy to take--I am hopeful--Good luck with your decision
Kathy T
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10-24-2009, 01:10 PM
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#29
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Re: Prayers are answered ~~~
Praise the Lord.
__________________
"Be still and know that I am God." Psalm 46:10
Dx. 6/24/05 age 45 Right Breast IDC ER/PR. Neg., - Her2+++ RB Mast. - 7/28/05 - 4 cm. tumor Margins clear - 1 microscopic cell 1 sent. node No Vasucular Invasion 4 DD A/C - 4 DD Taxol & Herceptin 1 full year of Herceptin received every 3 weeks 28 rads prophylactic Mast. 3/2/06
17 Years NED
<>< Romans 8:28
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10-24-2009, 03:12 PM
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#30
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Re: Prayers are answered ~~~
Sheila I am thankful that you have 2 good options. I sure don't know which to choose, but I can feel the excitment re: the TDM-1.
Meditate and pray about it. You will be taken care of.
Love,
Lexi
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10-24-2009, 03:23 PM
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#31
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Senior Member
Join Date: Jul 2006
Posts: 869
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Re: Prayers are answered ~~~
Sheila, Sounds like you have the choice between 2 good protocols. I am on xeloda/tykerb right now. Best of luck with whatever you choose. Fondly, Ceesun
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10-24-2009, 05:13 PM
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#32
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Re: Prayers are answered ~~~
Sheila,
This is wonderful news.
I would go with the TDM-1 trial, first. As you mentioned, you can always go on Tykerb/Herceptin in the future.
Sending you a lot of hugs for all your hard work.
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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10-24-2009, 06:09 PM
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#33
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Senior Member
Join Date: Oct 2006
Location: Louisville KY
Naples FL
Posts: 665
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Re: Prayers are answered ~~~
I vote TDM-l but just am so happy and either choice
you make opens the door for you. Follow your gut,
and you probably already know what that is. This
is such great news. Persistence and patience paid
off....
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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10-24-2009, 06:24 PM
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#34
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Senior Member
Join Date: Feb 2008
Location: South East Wisconsin
Posts: 3,431
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Re: Prayers are answered ~~~
By in writing, it probably doesn't have to be a document. An e-mail responding or mentioning it even in passing might do. Just thinking getting folks to go ultra formally "on the record" might shut them down. Sometimes I happen to not get to the phone in time to prevent people leaving voice mails..coincidentally when I want a record of things. It feels less formal to them yet they know they're being recorded so it's all good. Ahem.
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10-24-2009, 06:32 PM
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#35
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Re: Prayers are answered ~~~
Rich, Good point, but when the denial was overturned by my apeal, they have to send it via letter to my house, and the Dr. Just like they send a formal letter of denial...so I think I will keep it safe, just in case!
__________________
"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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10-24-2009, 08:13 PM
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#36
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Senior Member
Join Date: Nov 2006
Location: South Carolina
Posts: 183
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Re: Prayers are answered ~~~
What great news Sheila!!
I always say go with your gut feeling. If you feel comfortable with the Trial, go for it!! Like you said, if that doesn't work well for you, you still have the Tykerb!!
Congrats for two successful battles!!
__________________
Anita
er, pr-, Her2+++
Stage 2b, grade 3
negative nodes
4 rounds AC
3 months of weekly taxol
1 yr of Herceptin
Finish Herceptin May 2007
35 rounds of Radiation
Reconstruction completed Dec 2007
Implant replaced due to infection Mar 2008
4 Years NED!!!
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10-24-2009, 08:34 PM
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#37
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Senior Member
Join Date: May 2007
Location: DFW area (TX)
Posts: 431
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Re: Prayers are answered ~~~
Fantastico!!
There is some justice in the world. Well-done my friend!
Your logic on holding off on the Tykerb makes much sense.
TS
__________________
Terri, spouse of Ruth, Dallas/Ft. Worth area
Ruth dx 05/01/07 (age 50) Filipino
multifocal, several tumors .5 -2.5 cm, large area
Breast MRI showed 2 enlarged nodes, not palpable
100%ER+, 95%PR+, HER2+++
6x pre-surgery TCH chemo finished 9/15/7 Dramatic tumor shrinkage
1 year Herceptin till 6/08
MRM 10/11/07, SNB: 0/4 nodes + Path: tumors reduced to only a few "scattered cells"
now 50% ER+, PR- ???
Rads finished 1/16/08
Added Tamoxifen,
Finished Herceptin 05/08
NOW is the time to appreciate life to the fullest.
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10-24-2009, 09:32 PM
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#38
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: Prayers are answered ~~~
I am so happy to read that you have choices !! Such fabulous news !!
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10-25-2009, 02:06 PM
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#39
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Re: Prayers are answered ~~~
oh my God! Sheila! I have these things (tears) leaking uncontrollably from my eyes! Of course, normally I would think it was the chemo (yes, my dear, even T-dm!) But I know differently - they are tears of joy. I knew your prayers would be answered...but in multiples??!!!
Sheila, to me this seems and easy choice. Gold plate the letter authorizing Tykerb as single agent with Herceptin, get on the DM1 trial pronto, and then you not only have pertuzumab to back you up, but also Tykerb/Herceptin.
Sounds like a plan b hat trick!
You're right, the window for DM1 has presented itself now for a reason; climb through it, sister!
Much much love!
Chris
__________________
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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10-25-2009, 02:19 PM
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#40
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Re: Prayers are answered ~~~
Sheila,
This is really weird, and maybe a bit Santa Cruz...but in addition to all the prayers and constructive ideas you've received, on Thursday or maybe it was Friday?) I was thinking, praying, and composing email about you. The email was to a friend of mine, not a close one (she's the wife of one of my hubby's old college friends), but she works for BCBSIL.
The gist of the email was, "hey, hope you're doing well, when will we get together next, and oh by the way, I know this has nothing to do with you, but I thought you should see the view from the other side...about a good friend of mine" and attached a link to the "denial" thread.
I was very emotional while writing the email, and decided to wait a day or two before sending it...
But maybe the message "got sent" anyway...
Can't wait to hear what you decide
Chris
__________________
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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