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08-05-2007, 06:16 PM
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#1
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Senior Member
Join Date: Apr 2007
Location: Shaker Heights, Ohio
Posts: 86
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Scans tomorrow; scared but want to be brave
Friends,
I'd love to hear your opinions! Who else in the world can understand how devastated I can be when I try to plan just a little bit for the future and I am facing the totally unknown.
Exactly a month ago my scans showed two, possibly three small spots on my lungs and enlarged lymph nodes in the chest.
This was while I have been ned only since March. I had my stage IV diagnosis in January after neoajuvant chemo and surgery so now I was on Tykerb and Xeloda as a preventative (per recommendation second opinion onc at Memorial Sloan Kettering) since May.
After this bad scan, a month ago my local oncologist suggested that we give Tykerb and Xeloda another month to work - so that we don't give up on them at the first sign of progression. He did not seem overly optimistic about T/X working for me but I was happy to go along with his suggestion hanging on to the hope that maybe they will still work.
Tomorrow is the moment of truth well, probably on Tuesday when I pick up my scans. I don't even dare to hope. Really: "stable" would be great! "Little progression" okay. I'm scared that it'll be a lot of progression and more new mets. I also barely can stand the idea of another harsh chemo. I finished the last one in October. (Xeloda and Tykerb were very doable for me)
I do want to be brave and at least go down fighting. I'm (re)reading For Whom the Bell Tolls. Robert Jordan gives me courage, he keeps working on what he set out to do, enjoys his days (well and nights too) he has great affection for the people he meets, even though he knows how exactly the odds are against him.
After my borderline stage IV diagnosis last May I thought it was the end of my life. This past year so much of my world has collapsed, I was really hoping just for a couple good months after my surgery, so I have time and energy to get my thoughts organized and things in order - it was not meant to be.
It gives me hope how all of you warrior sisters keep on fighting and eventually this nasty disease will go down in history together with the plague, small pox, polio and others.
With hope and love,
Odette
__________________
May 18, 2006 Age 52,
Diagnosed infiltrating ductal carcinoma
er/pr- HER2 + 3.9 by FISH
June-August 2006 AC chemo
August-October 2006 Taxotere + Herceptin
November 18, 2006 Mastectomy 16 involved lymph nodes
Jan 2, 2007 start radiation
Stage IV, Jan 12, 2007 recurrence in cervical lymph nodes while on Herceptin, stopped Herceptin
Rad oncologist extended the radiation field, good response
Started Tykerb Xeloda on beginning of May 2007
Progression to lungs and conglomerate lymphadenopathy July 2007
Undecided about next treatment
'One does not get to choose one's adventures'
I'm experimenting with my diet, using green tea, flax seed curry and olive oil
Last edited by Odette; 08-05-2007 at 06:26 PM..
Reason: clarity
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08-05-2007, 06:57 PM
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#2
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Dear Odette,
Saying a prayer for comfort during this anxious time. I am praying that the Tykerb and Xeloda have done the trick to either completely destroy all the cancerous cells or at least stabalize the activity. Stable sounds like it would be very good.
Please know that I am thinking of you and lifting you in prayer.
Hugs,
Lexi
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08-05-2007, 07:05 PM
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#3
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Senior Member
Join Date: Nov 2005
Location: Lincoln, Rhode Island
Posts: 371
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Dear Odette.
I sure know how you feel. If there is one thing this beast has taught me is that I can't plan anything. You just have to live each day to the fullest a lot easier said than done. I pray that you have a good scan and that this treatment is working. Please let us know how you make out. Keep strong and never give up that is one thing the beast can't take from us! All my best.
__________________
Love and Hope
Karen
IDC
DX 1998 STAGE I ER+/ PR+
AC CHEMO TILL FEB 1999
Tamxofin till 2001
2001 exstensive liver mets and mets to lungs
Started weekly taxol
Jan 2002 found out I was strongly HER2POS+++ started herceptin continued with taxol and herceptin till June 2002 then from June 2002 till Jan 2005 just herceptin and Arimidex
2005 Navelbine herceptin had RFA Then back on taxol with herceptin
April 2006 progression again went on clinical trial with tykrerb/herceptin progressed on the started Xeloda/ herceptin
Feb 2007 started Doxil
August 2007 Taxotere,Carboplatin and Herceptin exstensive mets to liver and pancreas
October 2007 Had to stop Carboplatin due to sever allergic reaction
Jan 2008
Stopped Taxotere due to progression now on Gemzar and Herceptin
March 2008 Starting Carboplatin, Abraxane, and Herceptin.
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08-05-2007, 07:47 PM
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#4
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Odette,
I know exactly how you feel. I was stage IIIc and finished my herceptin the end of April and in July I developed mets. This is a dreadful disease! Try not to worry - easier said than done -- about the scan. If the treatment is not working there are many other options available. Keep the faith and keep fighting. We're all in this together.
__________________
Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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08-06-2007, 05:36 AM
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#5
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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Dear Odette, You are not alone as you go for your scans! We are all in your corner, slugging it out!!! KAPOW!!! Stay strong!!! Prayers headed your way from the Pacific Northwest!
__________________
 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!!
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08-06-2007, 11:46 AM
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#6
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Dear Odette,
Sending love, hugs and a prayer for the anxious time you are going through.
I pray the treatment is doing it's job.
Mary Jo
__________________
"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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08-06-2007, 12:56 PM
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#7
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Canada is praying too!!
Dear Odette,
Just to let you know that I'm sending positive vibes your way and praying that the scans have good results.
All the best for a complete recovery,
caya in Canada
__________________
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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08-06-2007, 05:15 PM
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#8
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Senior Member
Join Date: Apr 2007
Location: Shaker Heights, Ohio
Posts: 86
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Sandy Helped me Today Too!
Thank you friends for you wonderful notes!
It helped getting through my day. I'm at the library now, this morn I dumped a full cup of coffee on my keyboard as I was positioning the cup on a sheet of paper that was sitting on a pile of books. As it turned out the paper was hanging o v e r the side of the books. Splash - oops. At least it was cold coffee not hot!
So I think I'm ordering new apple keyboard today. I was going to upload a picture of myself for all of you when this happened. I promise I'll still do that ASAP.
So I had the CT the bone and an ultrasound of the neck.
Tomorrow will be easier, I'm working till 5 then I'll stop by and hope to pick up my reports. Then I'll be here writing to you.
When last time I had a scan they had a terrible time getting to my veins for the contrast for the CT. So yesterday I went back and read a couple of discussions about IVs and there I happened upon Sandy's note: she went and got her experienced chemo nurse start her IV which the scan technician used for the contrast and the nuclear trace for the scans.
I did the same today! The lovely nurse I found did not mind it a bit and she got a good return already by the second try!
Thank you Laura (the nurse) and THANK YOU SANDY! (over space and time and dimensions) And thank you Lexi, Karen, Kate, Susan, Mary Jo, and Caya for the encuaraging words and prayers!
Please keep it up for me! Do I dare to hope?
xoxo
Odette
__________________
May 18, 2006 Age 52,
Diagnosed infiltrating ductal carcinoma
er/pr- HER2 + 3.9 by FISH
June-August 2006 AC chemo
August-October 2006 Taxotere + Herceptin
November 18, 2006 Mastectomy 16 involved lymph nodes
Jan 2, 2007 start radiation
Stage IV, Jan 12, 2007 recurrence in cervical lymph nodes while on Herceptin, stopped Herceptin
Rad oncologist extended the radiation field, good response
Started Tykerb Xeloda on beginning of May 2007
Progression to lungs and conglomerate lymphadenopathy July 2007
Undecided about next treatment
'One does not get to choose one's adventures'
I'm experimenting with my diet, using green tea, flax seed curry and olive oil
Last edited by Odette; 08-06-2007 at 05:26 PM..
Reason: clarity
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08-06-2007, 06:13 PM
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#9
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Senior Member
Join Date: Oct 2006
Location: Southern California
Posts: 900
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Odette,
HOPE is what gets us up each morning and keeps us going through the day. Never, ever give up.
HOPING for good news.
__________________
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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08-06-2007, 06:34 PM
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#10
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Always Hope. Keeping you in my prayers.
________
MARIJUANA CARD
Last edited by sassy; 08-22-2011 at 09:25 AM..
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08-06-2007, 06:39 PM
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#11
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Odette,Yes Sister, always remain hopeful. Hugs,Lexi
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08-06-2007, 07:03 PM
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#12
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Odette
I am so glad today is behind you, and saying prayers for good results from the scans...it is such a scary time for all of us.....sleep well tonight.
__________________
"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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