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Old 01-10-2008, 11:02 AM   #21
Believe51
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Unhappy My Tousled1....

I am praying for you to continue to remain strong to keep fighting all these big bumps in the road. So here is to the blood thinners that will do the trick and then off to the next issue. Ed and I are sorry to hear this news, just one thing after another for you Kate!! Ughh!! We are both keeping you in our prayers and of course positive thoughts....today and always.

Go get 'em girl>>Believe51
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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!!
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Old 01-10-2008, 01:56 PM   #22
tricia keegan
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Kate sending all my good wishes to you, thank goodness it was found when it was. Hang in there girl!
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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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Old 01-10-2008, 02:15 PM   #23
jones7676
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Oh Kate, I'm so sorry you have another problem to deal with. I hope they can clear this up and you can move on. Thank goodness they found it and hopefully they can fix it for you! I'm sending positive thoughts your way!
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10/03 Radical Mastectomy 3 cm tumor - 1/17 Nodes Stage II B, Her 2 +++ ER-/PR- 11/03 4 AC 4 Taxol 12/05 Stage IV - Lung met , Bone mets - Carbo, Taxotere, Herceptin 9/06 - 2 cm brain tumor 10/06 - Tumor removal surgery - Herceptin Halted 12/06 gamma knife tumor base.1/07 Navelbine/Herceptin 4/07 Rads to R femur 5/07 Stereotactic - new 2 cm brain tumor 4/07 Start Xeloda 5/07 Tykerb added 7/07 Brain MRI clean 10/07 .055 cm brain met found. 12/07 Stereotactic -1 cm brain tumor Start Tykerb 11/07 Abraxane/Herceptin 5/08 Cisplatin, Gemcitabine/Herceptin 6/08 Stereotactic to 1cm 9/08 Stereotactic repeat (growth). 11/08 Pet Scan Good but new tiny met on L lung/dead Brain surgery (no cancer cells found/scar tissue) 1/09 Chemo restarted 2/09 Pet Scan Bad - R larger very active/active L active lymph nodes both sides of chest MRI- mets slight increase 2/09 Start Doxil/Tykerb Treatment
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Old 01-10-2008, 03:20 PM   #24
Andrea Barnett Budin
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Wink Whew! That Was Close... Dodged A Bullet!


Okay. Dear Kate, You keep coming up w/these things. Pulmonary embolism sounds very painful and scary. Glad they found it and you are already getting blood thinners to treat it! Thank goodness! You do have an angel on your shoulder. Just feels like a black cloud. Damn annoying though. Did you have chest pain, shortness of breath? I did not know of the drug you got, only Heparin and Warfarin. Know you are in good hands, w/docs on top of your case! Wow. I am sorry you have to deal w/this, yet grateful it was found before it did damage! My thoughts and prayers are with you, as always, my sweet special Sister... Sending more loving, healing energy -- till you are well!!! Can you feel it? I am including HUGS!
Andi
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'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 01-10-2008, 03:28 PM   #25
Donna
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You go Girl!

Keep your chin up and get that embolism blasted outta there!

Praying for you!

Donna
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Diagnosed 6/7/06 invasive ductal carcinoma/ductal carcinoma in situ
Lumpectomy 6/21/06
Pathology: Er 99% Pr 10% Her2/neu 3+
DNA Index 1.0
S-Phase 3/High
Primary Tumor 2.4 cm Sentinel Node Tumor 2.1cm
A/C/T+ Herceptin + rads + Arimidex
stopped Herceptin after 7 mos. due to low MUGA
Surgery for thickened uterine tissue May 2008 - conclusion: side effect of Arimidex
Switched from Arimidex to Femara - joint/tendon problems significantly better!
2 year mark Pet scan and Echo shows all clear!
5 year mammogram with ultrasound shows no sign of cancer - yay!
11 years, 11 months new breast cancer - found lump
Mastectomy 4/30/2018
Pathology: Er99%, PR 28%, Her2 negative! (new type)
Faslodex
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Old 01-10-2008, 03:41 PM   #26
lexigirl
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Dear Kate,

I am sorry that you are dealing with another set back. Enough already! I am happy that they found it before something more critical happened.

Hugs,
Lexi
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Old 01-10-2008, 03:53 PM   #27
Sheila
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Oh Kate
I am so sorry that you are going through even more....you do have an angel on your shoulder that this was found and is being treated quickly as they can be dangerous...it may have developed while you had pneumonia and were lying around more than usual....get the Dr to order you a pair of TED hose or compression stockings so when you aren;t as mobile, you are still protected.
Sending you love, hugs and many prayers dear friend...get well!
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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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Old 01-10-2008, 05:46 PM   #28
madubois63
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I have to agree with Sheila - you have an angel on your shoulder. I am so glad this was found and treated before it became really serious!! I do know how much it stinks to be told something else is wrong!! God bless you!!!
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Old 01-10-2008, 07:46 PM   #29
tousled1
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I went for my Herceptin treatment today and saw the nurse practioner. In my opnion she's about as much help as a fifth wheel on a wagon. Can't answer any questions you pose, etc. I got another shot of Arixtra today and will continue to do so for a week to 10 days and then it's on to coumidin. I do have another scan scheduled for tomorrow to specificially look at the embolism. I tried to get the complete results of my scan from the NP but she would not give them to me. I see my pulmonary doctor on Monday so hopefully he'll be able to give me more information. I'm soooo mad that I didn't see my oncologist today. I will see her next Thursday and I will have my list of questions.

I did have a clot way back when I had my first port inserted and that was treated with Lovenox shots and then coumidin until 10 days before my surgery. I haven't had any problems since until now.

I did fly to PA over the Christmas holiday and am wondering if that may have contributed to the embolism. But I guess it doesn't do any good to think what if, etc. I just have to accept this is what is and go on from here.

I'm just hoping that when I see the oncologist next Thursday I will get the full report of my scans - brain, chest, abdomen. I want to know if the lung mets have grown, are stable or somehow disappeared. For now we will just get our dialy shots and work on my list of questions for the oncologist next week.

Thank you all for your concern and prayers. Thisis like taking one step forward and two steps back. But, not to worry soon we'll be taking two steps forward and none back.
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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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Old 01-10-2008, 08:46 PM   #30
caya
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Kate,

Thanks for posting this update, I was thinking about you today and wondering if there was any news.

Yes it stinks that you did not get more information, but I sure your pulmonary doc will be able to give you all the info about your embolism.

I am praying for clean scans for you and doing the happy dance with NED.

all the best
caya
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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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Old 01-10-2008, 08:49 PM   #31
Bill
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Wink

Hi Kate! Sorry to hear about the embolism, but I know those blood-thinners will work! I love your positive attitude even in the face of all these obstacles. I'm praying your scans are all clear and I want you to know you're in my thoughts and prayers. Love to you, Bill
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Old 01-10-2008, 09:31 PM   #32
lilyecuadorian
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Kate I can't go to the bed with out let you know that you are in my prayers and I know you will win this one again ...one by one
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Diag April/06 5 months after give birth my son Max
stage IV mets on liver (5 tumors) 38 year old,
her2+++ and ER+PR+ from32 nodes 4 positives
mastectomy right breast chemo before surgery herceptin/carboplatin/taxotere ,clear and surgery have radiation 20, `& then herceptin and tamoxifen
NED until Aug/07 body only then 'n June 04-06-07 .1 lesion of 1.6 cm on cerebellum ...novalis ,open sugery
5m.m brain met again novalis, 4mm.In the liver. Waiting 2 months now 3 tumors enroll on T-MCC trial start first infusion Nov 5/07 at Dec 17 scan show one tumor despair the 2nd and 3th diminish Doc said great results until March/08 ct scan show progression
03-05-08 start tykerb & xeloda
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Old 01-10-2008, 10:00 PM   #33
Andrea Barnett Budin
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Wink Get What You're Legally Entitled To!

Kate, my touseled friend --- what about the Patients Bill of Rights? You are entitled to all your reports upon request.

I get Ct scans reports mailed to me and received in 2 days. Other offices will fax them right to me, in minutes. They are your reports. You have every right to them.

I have had a string of NP that are useless, a great source of misinformation, lacking compassion, and plain rude. I had 1 other such person in an outpatient surg clinic but not a one since '95. Now I'm embroiled in a string of one after another. Useless, snippy, cavalier (like we're discussin my tires...). They may be efficient, from the doc's point of view, but they lack humanity from mine.

You should be able to get your hands on the info you want tmrrw! I am alw nice, ladylike, but firm. No need to be rude, or demanding or threatening. But I want what I want (and am entitled to) when I want it, thank you very much... I'm a 12 yr professional patient. Don't mess with me little girl...

Andi
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 01-10-2008, 11:41 PM   #34
Jean
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Kate,
Sending you healing energy...
I will never accept how any dr. could make a patient wait an entire week
for scan results!!!!! How cruel...Dr. know waiting for scan results is stressful...what are they thinking?

That is why when the Dr. is not available your NP should have given you the report! I am angry for you.

Jean
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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
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Old 01-11-2008, 04:49 PM   #35
Patrice
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This stinks, Kate! You are such an inspiration to me and all of us. You're in my prayers, always.
Patrice
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