 |
|
06-15-2009, 06:34 PM
|
#1
|
|
Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
|
Scans tomorrow --
-- could use some of your HER2support positive vibes.
It has been 6 months exactly since I left the comfort of my vitamin H (Herceptin) to dangle in the wind and hope to stay healthy on my own.
Had the labs drawn the day after I got back, but the HER2 serum result will not yet be back when I see med onc on Wed. Somehow, I feel this is an important marker as I have never made it this long without treatment since the year 2000.
__________________
"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.
|
|
|
|
06-15-2009, 07:44 PM
|
#2
|
|
Senior Member
Join Date: Dec 2005
Location: Walnut Creek, CA
Posts: 438
|
Thought and prayers are with you Steph.
Karen
|
|
|
|
|
06-15-2009, 07:47 PM
|
#3
|
|
Senior Member
Join Date: Aug 2006
Posts: 492
|
will be thinking of you, positive vibes for your scans and hoping you can stay on the Herceptin wagon 
__________________
Are we there yet?
Dx 10/05 IDC, multi-focal, triple +, 5 nodes+
MRM, 4 DD A/C, 12 weekly taxol + herceptin
rads concurrent with taxol/herceptin
finished herceptin 01/08
ooph, Arimidex, bilateral DIEP reconstruction
NED
Univ. of WA, Seattle vaccine trial '07
|
|
|
|
|
06-15-2009, 09:09 PM
|
#4
|
|
Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
|
Steph, sending good vibes for scans and labs that are both accurate and validate you are successfully walking that tightrope!
You are my hero!
__________________
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
|
|
|
|
|
06-15-2009, 09:16 PM
|
#5
|
|
Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
|
Dear Steph,
sending you strong positive energy, prayers and huge hugs....
Jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
|
|
|
|
|
06-15-2009, 09:34 PM
|
#6
|
|
Senior Member
Join Date: May 2006
Posts: 3,142
|
Scans tomorrow --
Positive vibes and hugs going your way from the middle of the Pacific Ocean.
|
|
|
|
|
06-16-2009, 03:02 AM
|
#7
|
|
Senior Member
Join Date: Sep 2005
Location: MN
Posts: 731
|
Steph - All good thoughts for excellent test results and continued health and NED status.
__________________
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
|
|
|
|
|
06-16-2009, 03:46 AM
|
#8
|
|
Senior Member
Join Date: Mar 2009
Posts: 126
|
Steph keep dancing with Ned ... I hope your scans continue to be NED...
__________________
Diag. 12/24/08-
IDC 1.3 er-/pr- HER2+
Grade 3 0/2 lymph nodes
no angiolympathic invasion
Bi-Lat. Mast. 1/8/09
Exchange scheduled for 6/17/09
Lost implants due to unknown reason :(
Hip Flap 1/26/2010 in NOLA :) LOVE EM'
TCH x6 (6 done and I am hoping to never do it again )
Well so much for never...
Local recurrence May 25,2014 is left over breast tissue.
April 2 , 2014 lumpectomy
April 28, 2014- June 9, 2014 start AC x 4
Taxol x12
Perjeta x 6
Herceptin x 18
And 33 rads just for fun. NOT!!!
|
|
|
|
|
06-16-2009, 04:13 AM
|
#9
|
|
Senior Member
Join Date: Jan 2007
Posts: 368
|
Sending you good thoughts Steph.
__________________
12/12/06- IDC Stage III, 4x A/C, 35 rads, Herceptin 1 year
|
|
|
|
|
06-16-2009, 04:56 AM
|
#10
|
|
Senior Member
Join Date: Jan 2006
Posts: 42
|
Dear Steph,Positive thoughts and prayers !
|
|
|
|
|
06-16-2009, 06:15 AM
|
#11
|
|
Senior Member
Join Date: Jun 2007
Location: RHODE ISLAND
(Ed getting me a latte on 2nd Cancerversary Cruise 2008)
'BELIEVE': To accept as true or real, To have faith in, To presume
ALWAYS BELIEVE
Posts: 2,999
|
Steph, of course I will say special prayers for you tomorrow that include all the glorious ones I say each day for the same reasons, only more. As I say prayers for you every day to remain NED I envision that picture of you that is burned into my mind. Yes, this is my friend and I pray for only her at this moment. It is my daily tribute and my honor to say these special thoughts and while I am saying them I so feel like that person sits besides me.
As we are sitting side by side tomorrow and I revise this prayer for you, I will smile. Smile knowing you are one special lady that has taken me far away from all the trials Ed and I have ever faced. I shall smile with the pride and honor I have to see you in my world each day, to know you support and love me. But I will especially smile because I know the true spirit and can see the Angelic aura you ooze for all of us. God hears our cries and I am counting on him to hear mine. Please keep this special woman free of this beast so she may continue her work here......
....just helping Ed and I constantly is a full time job for you, Steph (smiling). Continue to live free and keep those thoughts in the back of your mind. We all will keep in the front of 'ours' that you remain NED so you may continue your dance! Dance Our Sweet Lovey and leave the rest of the praying to us. Copious amounts of love and respect and my complete honor.>>Believe51
__________________
9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
|
|
|
|
|
06-16-2009, 06:22 AM
|
#12
|
|
Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
|
Stephanie,
I am glad to hear you are back. I will be sending positive vibes your way. Let us know the results of your tests. I had my scans, CT-PET and brain MRI, at the first of June, and there was no sign of cancer. Yeah!
I had my ELISA test and Vitamin D test last week, and I am waiting on those results. I told Dr. McCune, I hope my vitamin D is in the 70 range.
I fly to Seattle on the 25th and have the vaccine of the 26th. If you are not busy, I would like for you to come to the hospital and us go have lunch afterwards.
I can't wait to hear about your trip.
Amelia
|
|
|
|
|
06-16-2009, 06:33 AM
|
#13
|
|
Senior Member
Join Date: Sep 2005
Location: Melbourne Victoria
Australia
Posts: 330
|
From one old timer to another
Dear Steph
I await your scan results with interest as we have a lot in common. In Oct I will have been 4 years NED on herceptin. I am having a brain MRI on the 2 July; having had a clear brain CT last week. Hopefully this will be clear and will act as a baseline for any thing down the road. I have had several visual disturbances which may be due to head injuries I received many years ago but since I have never had a brain MRI it will be good to have one done. Best of luck with your scan.
Jackie (down under)
|
|
|
|
|
06-16-2009, 09:56 AM
|
#14
|
|
Senior Member
Join Date: Feb 2008
Location: Bayarea,CA
Posts: 679
|
Dear Steph,
I am sending lots of prayers for you to be NED in the body and brain. Praying your Her2 serum test will be good and you can carry on without Herceptin!
You are such an inspiration to me and your journey has always filled me with hope.
Love,
shobha
__________________
DX: 06-30-2007 - left breast -stage IIIB, Her2/Neu 3+++, ER weakly positive, PR-
Taxol+herceptin weekly for 3 months
FEC+herceptin every 3 weeks for 3 months
BRCA 1 and 2 - Negative
Jan 2008 - Bilateral mastectomy, prophylactic Rt. side.
Radiation for 5 weeks
Completed my yr of herceptin on 07-14-2008
Brain MRI - 3/2/09 Clean
|
|
|
|
|
06-16-2009, 10:01 AM
|
#15
|
|
Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
|
Sending our warm thoughts and prayers your way, Steph!
__________________
For Nicola
|
|
|
|
|
06-16-2009, 10:05 AM
|
#16
|
|
Member
Join Date: Sep 2007
Location: Birmingham, Alabama
Posts: 21
|
Steph- I am sending positive thoughts your way and praying that NED is here to stay.
I am heading out your way on Sunday and have my final testing done at UW for the vaccine trial on Tuesday.
Warmest Regards-
Suzanne
__________________
Dx 8-24-2007
Stage IV with mets to liver
ER +/PR- HER2 +++
10 months TCH completed 5-08
Ooph 1-08
Bilateral Mastectomy 07-08
Currently on Herceptin and Aromasin
NED since 1-08
UW Vaccine Trial completed 5-09
|
|
|
|
|
06-16-2009, 10:21 AM
|
#17
|
|
Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
|
We are back in Poulsbo for the summer...sending good luck across the water today for good results!!
__________________
 Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year
as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
|
|
|
|
|
06-16-2009, 11:44 AM
|
#18
|
|
Senior Member
Join Date: Oct 2007
Posts: 1,851
|
Steph,
I'm praying for good results. Still NED.
Best,
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!!
|
|
|
|
|
06-16-2009, 05:53 PM
|
#19
|
|
Senior Member
Join Date: Oct 2006
Location: Louisville KY
Naples FL
Posts: 665
|
Wishing you the best and will be praying everything
is good.
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.
|
|
|
|
|
06-16-2009, 06:06 PM
|
#20
|
|
Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
|
Sending positive vibes from Canada to you Steph.
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!!
|
|
|
|
Posting Rules
|
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts
HTML code is Off
|
|
|
All times are GMT -7. The time now is 12:26 AM.
|
Linear Mode
