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Old 07-13-2007, 08:02 PM   #1
tousled1
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Angry Mets to lungs

Just got the result of my CT scan today and was told I have mets to the lungs. Have an appointment with oncologist next Friday to discuss treatment options. I would appreciate any info as to what treatments are good for lung mets. Thanks.
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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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Old 07-13-2007, 08:20 PM   #2
Chelee
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Kate, I am sorry about your CT results. I really hate to hear you have to deal with this. My heart goes out to you. But with the very knowledgable women & men on here I know you will get some great advice as how to best attack this. With the boards idea's along with your onc I am sure you will come up with a good trt plan to kick those mets into the twilight zone. I will be keeping you in my thoughts and prayers.

Chelee
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DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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Old 07-13-2007, 08:26 PM   #3
LAURIE
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Hi, Kate I just got home from work and saw your post. Excuse my language but the first thing I said was damn't. I can not give you advice on treatment but from what I remember you like your doc a lot and trust him. Was your scan routine or did you suspect something through blood work? Please keep us posted on your treatment and keep your chin up. It is so great we have each other. I am not sure if I told you that my brother lives by you. He lives in Acworth, if I remember correctly you used to live there.
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Laurie
Diagonsed 8/10/06 (found own lump)at 35
Her 2 +++, er-/pr-
4 A/C 8-29-06 to 11-06
Lumpectomy, node dissection- 11/30/06
Pathology report stage IIIC
1 tumor 3 cm
10 of 15 nodes +
12 Taxol 12/18/06-03/06/07
Herceptin 12/18/06- 12/11/2007 done!!! yeah!!!
33 rads started 3/22/07, done!! yeah!! 5/07/07
Lymphedema diagonsed 2/1/07
BRCA1/BRCA2 negative
port out 1/10/08
pregnant after 6 yeas of trying- due mid feb.
Ryder David Kessel Hunter born feb.6th 2009

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Old 07-13-2007, 09:40 PM   #4
Soccermom
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OH CR*P ,Kate! I am so sorry. Wish I had some good information for you,but I know the others with info will chime in. I can kkep you in my thoughts and prayers, which I will will definitely do!
Marcia
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Old 07-13-2007, 10:06 PM   #5
Lolly
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Kate, I'm sorry to hear this, but you sound ready to fight and beat this back, and that's good.
Knowing what I know now, my first inclination if I were in your shoes, would be to request to be put back on Herceptin and ask your onc to recommend a chemo to add for synergy. Navelbine has worked great for me in the past, and I have a friend who had lung mets go into remission on the combo of Navelbine/Herceptin. Other options would be Abraxane, a platinum such as carbo, or Xeloda. If you can, save the Tykerb for such a time as you need it if Herceptin and chemo doesn't keep things in check.
Just my opinion as to what I would do to stretch out options.

Best of luck. I know you're very disapointed right now, but you can beat these mets back into submission. Hang in there and keep us posted.

<3 Lolly
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Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.

Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
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Old 07-13-2007, 10:13 PM   #6
Belinda
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Kate - I am so sorry to hear of this. It just isn't fair. I have no advice to offer but many warm wishes to send your way. Belinda - oooxxx
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Belinda
  • Diagnosed 3 Jan 2007, Stage IIb, Mastectomy and axillary clearance 10 Jan 07, 6 of 19 nodes affected, multi-focal cancer, HER2 positive. Second mastectomy (prophylactic). Chemo - AC 3 months, Taxol 3 months - then radiation 5 weeks.
  • Aug 2011 - Diagnosed with Stage IV mets to lung, sternum and 12 or so thoracic nodes - Rads to Sternum, then weekly abraxane and herceptin for 12 weeks.
  • May 2012- good scans - all nodes still about normal size, hole in sternum repairing, lung tumour 'obliterated'.
    Ongoing herceptin every 3 weeks. Bloods still all good! Life good!
  • March 2013 - recurrence - tumours in lungs and mediastinum (coughing up blood) - immediate radiation treatment to right lung and mediastinum, still on Herceptin, and 3 months of Vinoralbine - stable for a little while!
  • Coughing and breathlessness started again September 2013, treated as radiation-induced fibrosis (which can be seen on scans - albeit stable). ie puffers, steroids
  • January 2014 - cough becomes bloody again, scans show big mediastinal tumour wrapped around and choking the life out of my right main bronchus, radiation deemed off limits as my lungs are hypersensitive to radiation (measured by existing damage from 2013) .....................- ie I am in the 5% of people likely to suffer severe radiation damage to the lungs that they warn you about before starting treatment! (so special! :) )
  • Started chemo Feb 2014 - continuing Herceptin (continuous since Aug 2011), with Carboplatin and Gemcitabine. Discontinued Gemcitabine because of se's. Starting cycle 5 Herc/Carbo 5 May 2014.
  • Meantime.....coughing and breathlessness increased to SCARY levels with racing heartbeat that won't slow down, breath that won't come back, even just walking to the bathroom or up 3 or 4 steps.
  • ICU from May 5 2014, collapsed right lung due to tumour, small pulmonary embolism (left), tumours growing in mediastinum left and right, dvt lower right leg
  • Plan seems to be bronchoscope next week to see if tumour can be lasered and stent inserted in right bronchus to reopen air access to lower parts of right lung. If that is successful might be able to have brachytherapy to worst tumour, otherwise no more options for external radiotherapy.
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Old 07-13-2007, 10:32 PM   #7
lexigirl
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No Kate, no! Doggone it!! I am sorry to read this news! Gosh it makes me mad! Were you having symptoms that made you have it checked out? I am sorry that you have to endure another tx, but I am positive that there are many options that will bring you back to NED.

Hugs and Prayers,
Lexi
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Old 07-13-2007, 10:36 PM   #8
StephN
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Thumbs up Success stories

Dear Kate -
You have been SO GREAT in giving support to others - now it is your turn to get some back! Bummer. We are here for you, lady.

But, I recall that Sherryg did very well with Taxotere, Xeloda and herceptin. Maybe she will chime in here or you can send her a message for the details and doses of her treatment. She has been in remission for many months now.

I know you have not been off Herceptin for very long - but it will do its job again.
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"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.
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Old 07-13-2007, 11:27 PM   #9
Beckie
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Kate,
I was on Taxotere and Herceptin for 6 months for mets to the lungs and liver. They shrunk drastically, and have stayed that way ever since. I know your doctor will have a good plan to beat back the mets, and you'll be in the clear again. It's a good thing you're on top of it! I'll be praying for you.

Beckie
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Diagnosed 4/06, age 55
1.1 cm tumor
Pre-op x-ray caught lung nodules
6/06 - Stage 4, Her2+++, er/pr-
Mets to lungs(largest 3 cm), liver (largest 5.5 cm), and bones
Began taxotere, herceptin, & aredia
7/06 - radiation to lower spine & left shoulder for pain
8/06 - everything smaller
12/06 - stopped taxotere (toe infections)
5/07 - bone mets advancing
6/07 - add navelbine to herceptin & aredia
6/07 - discovered brain mets (3 in cerebellum, largest 2 cm.)
7/07 - WBR, change to Tykerb/Xeloda
9/07 - targeted radiation
10/08 - started navelbine/herceptin
2/09 - brain mets - targeted radiation
5/09 - mets in liver progressing, changed to Ixempra
7/09 - mets in liver still going, to the brain again, on gemzar now
9/09 - gemzar failed, started Doxil today


I know Who holds the future, and I know He holds my hand.
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Old 07-14-2007, 01:24 AM   #10
Grace
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Hi Kate,

I can't sleep thinking about you. But I'm happy to see from all the posts that lungs mets are not a big deal to get rid of, so you should be NED in a short while. Wish I could do more than say sorry. Lots of love and good wishes.
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Old 07-14-2007, 01:42 AM   #11
Mary Anne in TX
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Hi Kate!
Rotten news! Really rotten! Your incredible fighting spirit and the chemo your doctor will add to your herceptin will Just Work! I'll surely be praying for you. You bless everyone so often with your encouragement and advice. Please keep posting what they recommend and each step of your treatment so that we can keep believing with you for powerful, quick response to smashing those new offenders! lots of love, ma
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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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Old 07-14-2007, 05:40 AM   #12
Sheila
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Kate
It seems so unfair when this disease decides to rear its ugly head...there are so many treatment options right now, it just takes finding the one that works. You are a strong woman, we are all here for you with prayers and love in this new fight....show those mets who the boss is!
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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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Old 07-14-2007, 06:26 AM   #13
tricia keegan
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Kate I'm really sorry you have to deal with this,and sorry also I don't have any experience or advice to offer you on drugs but I know the one's who do are rallying to your side to help you through this. Keep as positive as you've always been and you'll be rid of these mets before you know it.
((((hugs)))))
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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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Old 07-14-2007, 06:58 AM   #14
RhondaH
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Smile Kate...

I am SO sorry and will keep you in my prayers. Take care and God bless.

Rhonda
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Rhonda

Dx 2/1/05, Stage 1, 0 nodes, Grade 3, ER/PR-, HER2+ (3.16 Fish)
2/7/05, Partial Mastectomy
5/18/05 Finished 6 rounds of dose dense TEC (Taxotere, Epirubicin and Cytoxan)
8/1/05 Finished 33 rads
8/18/05 Started Herceptin, every 3 weeks for a year (last one 8/10/06)

2/1/13...8 year Cancerversary and I am "perfect" (at least where cancer is concerned;)


" And in the end, it's not the years in your life that count. It's the life in your years."- Abraham Lincoln
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Old 07-14-2007, 07:10 AM   #15
Barbara H.
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I am so sorry to hear your news, Kate. I would try Navelbine. It has worked for many with lung mets. I'm sure that your oncologist has good ideas about what may work for you. As you know, there are many of us here with stage 4. It is important that you keep up your hope, as you learn to live with this new development.
Best wishes,
Barbara H.
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Old 07-14-2007, 07:15 AM   #16
Becky
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Dear Kate

I am so sorry about the results of your CT scan. You should see what your onc has to say and question the pros and cons of Navelbine versus a taxane drug (both in combo with Herceptin). If your doctor is a partner, you should be able to come to a decision based on joint logic on which way to go.

You are in my thoughts and prayers.

Love,
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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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Old 07-14-2007, 07:43 AM   #17
tousled1
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I want to thank everyone for their support. This is such a bummer! I have now joined the Stage IV club -- a little sooner than I anticipated though.

I have a great oncologist and have complete trust and confidencein her. I was the one who requested the CT scan. The reason I requested it was that was HER2 serum went from 7.1 up to 9.5 -- still well below the "normal" of 15. Also my tumor marker went up from 15.3 to 30.1 -- again below the 'Normal of 35. I'm just glad that my onc ordered the scan because we caught the mets early.

I don't know all the details on the mets -- how large or how many but will have that info on Friday. I'm also asked her to send me for a brain MRI since I haven't had one since last July.

You women have been such a great support to me for the last eyar and a half and I'm happy that I have you guys to depend on while I go through my next regime. I will keep you posted.
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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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Old 07-14-2007, 07:53 AM   #18
tousled1
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I know you will fight this mommy! we'll kick this to the curb! love you...

jennifer
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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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Old 07-14-2007, 08:21 AM   #19
Joy
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I second the damn't! I was really surprised to see this post, Kate and I'm just so sad and frustrated for you. Ugh, this stupid disease! HOWEVER you have gotten great advice here and yes we are here and you CAN depend on us. I will be anxious to hear what your onc recommends and remember this will be a 'first-line metastatic treatment' that is good as the right combo can really kick thos stupid spots. Search the forums for lung mets and treatments and if you are up for it-you are a great researcher, but if you want others to do it, just ask-google first line treatments for bc lung mets and see what happens, or look at some late phase trials, but there are good treatments for this.

I'm looking forward to hearing what you decide and how you are doing and I'm sending you great success vibes!

Love to you and yours!
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with love and gratitude,
joy

dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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Old 07-14-2007, 09:31 AM   #20
rinaina
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Oh Kate, I just hated hearing your latest news. This disease is definitely unpredictable at any given time. Darn it. Keep up your positive spirit and continue to fight this with every ounce of strength you have. I wish you success in finding the right treatment and in fighting these lung mets. You and your onc were so on top of things and so wise to get that ct scan. Good lesson for all of us to make sure we keep our oncs and ourselves on our toes.
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~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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