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09-29-2009, 11:46 AM
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#1
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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NAVELBINE NOT WORKING, New Game Plan
Just returned from my every 2 week jaunt to Chicago, and I am no longer on Navelbine. The nodes in my neck have almost doubled in the past month. I dont qualify for any clinical trials where I am going, and the T-DM1 in Decatur, IL has yet to open. The new game plan is to add Tykerb to the Herceptin, and hopefully gain some time while I await the T-DM1 or something better. Hoping this new combo will control things for a little while....at least my brain will be better protected!
__________________
"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
Last edited by Sheila; 10-06-2009 at 05:23 PM..
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09-29-2009, 12:02 PM
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#2
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Re: NAVELBINE NOT WORKING, New Game Plan
Oh, Sheila, drat, drat, drat! I guess missing out on Tykerb was just too much!
Girl, I'm sorry you have to shift gears, but I trust that it will do the trick til TDM1 comes to town.
You tell that rascal body of yours to behave....you'll not be missing another trip to San Antonio!
Adding you to my prayers.
Luv to ya, 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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09-29-2009, 01:19 PM
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#3
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: NAVELBINE NOT WORKING, New Game Plan
Hi Sheila
So sorry to hear your news.I hope the trial comes soon and will be praying that the tykerb is effective.
By the way, don't want to sound trivial but your hair looks great!
Ellie
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09-29-2009, 01:20 PM
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#4
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Senior Member
Join Date: Oct 2006
Location: Southern California
Posts: 900
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Re: NAVELBINE NOT WORKING, New Game Plan
Shelia,
I sure wish I had some words of advice for you but all I can offer is my support as you continue on this never ending journey. You are one strong woman and I know you will bounce back from this set-back.
Sure hope that trial opens for you soon!
__________________
Gerri
Dx: 11/23/05, Lumpectomy 12/12/05
Tumor 2.2 cm, Stage II, Grade 3, Sentinel Node biopsy negative
ER+ (30%) /PR+ (50%), HER2+++
AC X 4 dose dense, Taxol X 4 dose dense
Herceptin started with 2nd Taxol, given weekly until chemo done
then given every 3 weeks for one year ending on March 16, 2007
Radiation 30 treatments
Tamoxifen - 2 yrs (pre-menopausal)
May 2008 - Feb 2012 Femara
Aug 2008 - Feb 2012 Zometa every 6 months
March 2012 - Stop Femara, now Evista for bone strengthening
********** Enjoy the little things, for one day you may look back and realize they were the big things. - Robert Brault
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09-29-2009, 04:02 PM
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#5
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Senior Member
Join Date: Oct 2006
Location: Louisville KY
Naples FL
Posts: 665
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Re: NAVELBINE NOT WORKING, New Game Plan
So sorry Sheila, I am thinking of you and hope the
tykerb works with your other treatments.
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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09-29-2009, 04:48 PM
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#6
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Re: NAVELBINE NOT WORKING, New Game Plan
Sheila,
Since you haven't had Tykerb before it could do the trick in shrinking the neck nodes.
I'm praying for good results, and I hope the T-DM1 trial opens soon. Is there a list? Are you on it?
Sending you a lot of hugs,
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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09-29-2009, 05:19 PM
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#7
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Senior Member
Join Date: Jul 2007
Location: Northern California
Posts: 764
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Re: NAVELBINE NOT WORKING, New Game Plan
Tykerb is a powerful drug. I'm praying that it does the trick on the neck nodes. Keeping in my thoughts and prayers.
Tonya
__________________
DX 02/01/07
2.5 cm, Er/Pr-, Her2+++
18/20 Nodes
03/07 CT & Bone scan - Clear
AC x 4, Taxol x 4, Added Herceptin
Radiation until 09/07
Herceptin every 3 weeks until 06/08
01/10/08 local recurrence -IBC
01/28/08 CT & Brain MRI - clear
02/08 - Navelbine & Herceptin
05/08 -MRM
05/08 - Gemzar & Herceptin - didn't work
09/08 - Hyperthermia rads
03/09 - Tykerb/Xeloda
05/10 - Tram flap to fix wound
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09-29-2009, 05:30 PM
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#8
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Senior Member
Join Date: Sep 2005
Location: MN
Posts: 731
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Re: NAVELBINE NOT WORKING, New Game Plan
I was hoping you'd get a lot longer run with the navelbine. I hope the herceptin & tykerb will be very successful. Will be keeping you in my thoughts. How is the situation with the vocal chords ---- did that improve or is it the same as a couple months ago?
__________________
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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09-29-2009, 05:48 PM
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#9
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Senior Member
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
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Re: NAVELBINE NOT WORKING, New Game Plan
Sheila,
I am sorry you are not responding well to the Navelbine, but sure am hoping the Tykerb does the trick. I must say, I admire your positive spin on the situation, by saying your brain will be covered. Way to stay upbeat!
__________________
Smile On!
Laurel
Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara
15 Years NED
I think I just might hang around awhile....
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09-29-2009, 05:55 PM
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#10
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Senior Member
Join Date: Dec 2007
Location: Avilla, Indiana
Posts: 261
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Re: NAVELBINE NOT WORKING, New Game Plan
Dear Sheila,
Well crap, this is not good news.... but it's not the worst, either. Tykerb will be just the drug you'll need. Praying for you and sending positive vibes too~~~~.
Love,
Dana
__________________
-Dana-
]
Diagnosed - Nov. 2, 2007 at 45
Lumpectomy - Nov. 13, 2007
Tumor 1.2 cm
Stage 1 Grade 3
ER/PR - Her2 +++ (3.8)
Taxotere/Carboplatin/Herceptin- 6 rounds
Neulasta
Radiation 33 treatments - will be done 6/6/08
Herceptin through 12/08
12/07 MUGA 61%, 4/08 MUGA 60%, 7/08 MUGA 64%
three wonderful daughters, a terrific husband,
Life is Good
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09-29-2009, 07:57 PM
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#11
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Re: NAVELBINE NOT WORKING, New Game Plan
Sheila,
Good luck with theTykerb. Hope it does the trick for those nasty nodes.
all the best
caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08
Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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09-29-2009, 08:49 PM
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#12
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: NAVELBINE NOT WORKING, New Game Plan
I am so sorry to read your news. I hope the Tykerb helps. Hang in there and keep putting one foot in front of the other.
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09-30-2009, 06:31 AM
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#13
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Re: NAVELBINE NOT WORKING, New Game Plan
Sheila
I am sorry about this latest development. Is there any way that a node can be biopsied to see if it has changed to being hormone positive? Just thinking out loud here.
Going on Tykerb with Herceptin is a good move. Don't go off the Herceptin no matter what. It just needs more help. Maybe even without biopsy your onc will let you go on an antihormonal anyway. It might do something - who knows.
I am holding you close to my heart with good thoughts and prayers.
__________________
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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09-30-2009, 01:46 PM
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#14
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Senior Member
Join Date: Jul 2006
Posts: 869
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Re: NAVELBINE NOT WORKING, New Game Plan
Sheila, I join many in wishing you the very best in this new phase of treatment. Keep up the good fight. xo Ceesun
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09-30-2009, 03:27 PM
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#15
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: NAVELBINE NOT WORKING, New Game Plan
Sheila, I'm hoping the tykerb added will give you the result you need.
My best wishes to you 
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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09-30-2009, 04:36 PM
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#16
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Senior Member
Join Date: Sep 2007
Location: Near Chicago
Posts: 196
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Re: NAVELBINE NOT WORKING, New Game Plan
Sheila,
Dang. Just when I was going to email you to see how you were doing...hoping/assuming things were cool. Glad though that you some options. Physically do you feel ok?
(Say when for planning lunch again...!)
Big hug,
Melanie
__________________
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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09-30-2009, 04:48 PM
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#17
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: NAVELBINE NOT WORKING, New Game Plan
Sheila,
I've read that Tykerb is a much smaller molecule and can go where Herceptin and other chemo drugs not able to reach. I'm sending good vibe your way.
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
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.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"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
Advocacy is a passion .. not a pastime - Joe
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10-01-2009, 11:45 AM
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#18
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Re: NAVELBINE NOT WORKING, New Game Plan
I agree with Becky on the don't drop herceptin, and you might be surprised with the herceptin/tykerb combination. I saw a presentation at SABCS last year looking at the factors that they think make one work vs the other. There was clear evidence that they work on different things.
And interesting thought on checking the ER status again - there is evidence that blocking one pathway can sometimes activate another...so it sounds logical to check it out.
Hang in there, my dear!
__________________
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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10-01-2009, 02:38 PM
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#19
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Senior Member
Join Date: May 2006
Location: northshore suburb of chicago
Posts: 1,093
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Re: NAVELBINE NOT WORKING, New Game Plan
Sheila, you hang in there girlfriend and let's hope the tykerb helps and hopefully soon you can qualify for the other drugs. If anyone can do it, it is you. If you are up for it, would you like me to meet up with you the next time you come to Chicago? We don't have to do anything other then visit while you are at your next appointment.
Keep fighting.
__________________
~Rina~
Dx:3/06 had a lumpectomy April 19, 2006
Her2+ er/pr- Stage I Grade 3 tumor size 1.4 cm, node negative
AC 4 dense doses
34 radiation treatments including booster doses
receiving herceptin every 3 weeks since late August 2006 for 12 months
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10-01-2009, 03:20 PM
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#20
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Senior Member
Join Date: Apr 2009
Location: La Quinta, Ca
Posts: 253
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Re: NAVELBINE NOT WORKING, New Game Plan
Sheila,
Since you and I are in the same rare camp with our breast cancer returning to neck nodes and no place else, I want to give you some hope by telling you that Herceptin/Tykerb, as prescribed for me by Dr. Slamon, is working so far. After three months, the Pet/CT Scan shows the SUV which was 6.3 had decreased to approximately 3. The CAT scan dimension which was 2.5X2.2cm was less than 1 cm. My second PET/CT Scan showed nothing had changed. I will continue getting scans every three months because my tumor markers never have changed during all of this. My oncologist said they do not work as an indicator for everyone.
I had difficulty tolerating 1000mg of Tykerb daily so Dr. Slamon reduced my dosage to 750mg every evening. My primary side effects are fatigue, chronic diarrhea and a rash that comes and goes.
Good luck and please don't hesitate to contact me if you have any questions at all. Just as an FYI, I am having an implant placed in my paralyzed vocal cord at the end of October. I am hopeful this will help with material aspirating into my lungs causing inflammation and a cough. It should also make my voice stronger---I will let you know.
Hugs, Nancy
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