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Old 07-20-2007, 05:51 PM   #1
tousled1
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Lung Mets - visit with oncologist

First and foremost I want to thank each and everyone of you for your prayers and support during this difficult week for me.

Now, my appointment with the onc:

We had a very long discussion about treatment options and whether it really is mets to the lungs. Well, it is definitely lung mets - not on previous scan but on this latest one. Several nodes in not only one lung but in both. Not good!!!

WE have decided on Herceptin/Taxol/Carboplatin (TCH) which I'm sure many of you had. I will get the Herceptin weekly and the Taxol/Carbo will be 3 weeks on 1 week off. I did receive a loading does of Herceptin today. We did discuss other treatment options but decided we will start (and hopefully finish) with the TCH combo as it is used as a first line regime for metastic breast cancer. I'm satisfied with the decision and will save the "big guns" for if and when I need them. We also discussed Taxanes vs Navelbine -- Taxane offer a greater response than Navelbine.

I have an appointment Monday morning with my surgeon and have my port placement scheduled for Thursday morning. My echocardiogram is scheduled for Tuesday and I have a bran scan scheduled for the following Monday.

I will start my chemo "cocktail" next Friday and then switch to Thursday since my daughter will be driving me and it's more convenient to do on Thursday. I will see the oncologist in 2 weeks.

I am ready for this fight and I plan on winning!

Again, thank you everyone for your wonderful support, prayers and information. I don't know what I would do without this wonderful group of women.

On the lighter side, I had just bought some hair dye as my hair has come in with a lot of gray. Now since I'll be losing my hair I guess I can save the dye for when my hair comes back. Good thing I held onto all my hats!
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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 07-20-2007, 06:02 PM   #2
Lolly
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Kate, I'm definitely sure you'll win this one! You sound like you've got things well in hand, and I think in one respect it's easier going into this the second time because you know what to expect with the chemo cocktails, and know how to handle the side effects.
My onc is of the same opinion, we save the big guns for if/when necessary. That has really expanded my options as there are many chemo's we haven't used yet and I'm going into year seven of fighting mets and plan to have many more years ahead of me, as do you

Keeping you and all in my prayers,
<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 07-20-2007, 06:07 PM   #3
Jean
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Kate,
Been thinking of you all day....
I know you will fight this and of course win!
I will continue to keep you in my prayers.

Hugs,
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 07-20-2007, 06:44 PM   #4
Chelee
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Kate, It sound like you guys have a good plan of attack. I've done the TCH and I see you've done the A/C before. You will find the TCH much easier the A/C as you probably know from being on this board. I know of one women at my cancer center that did TCH for her lung mets with FANTASTIC results. She is still NED...11 months & going strong. This is what I expect for you and nothing less. I will keep you in my thoughts and prayers. Hang on to that hair dye...it won't be long before you need it again. Hang in there...we're here for you...but I don't have to tell you that.

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 07-20-2007, 06:46 PM   #5
KellyA
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Kate,

It sounds like you have a great plan, and I have no doubt that it will be very successful. You have such a hand up on this- you are very knowledgable and therefore prepared and know what to ask for, and have a fantastic attitude to boot. I will be keeping you in my prayers and wishing you the best.

Love, Kelly
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dx'd 05/06, 37 years old
er/pr-, Her2+, grade 3
double mastectomy, immediate reconstruction- implants
Stage 2b, 2 tumors- 2.2 cm and 0.6 cm, 3/5 + nodes
all scans clear
genetic testing- negative
06/06 began dd A/C x 4, 12 weekly Taxols w/ Herceptin
30 rads
Herceptin weekly x 1 year
Herceptin completed 08/07
Port removed 12/26/07 MERRY CHRISTMAS!!!!!!
05/17/08 Two year anniversary NED

"We gain strength, courage, and confidence by each experience in which we really stop to look fear in the face... you must do the thing that you think you cannot do."

-Eleanor Roosevelt

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Old 07-20-2007, 07:21 PM   #6
Vanessa
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You have a great spirit. TCH knocked out my liver mets. Best wishes and I will continue to keep you in my prayers.
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Old 07-20-2007, 07:27 PM   #7
Becky
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Dear Kate

You'll do great. TCH is a good combination. I will be thinking about you on Friday.

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 07-20-2007, 07:52 PM   #8
Mary Jo
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Hi Kate,

I thought of you many times today and am happy you were able to post today to let us all know how your day went. It sounds as if it went very well and it sounds as if you have a wonderful plan of attack.

You go girl!!!!!!!!!!!!!!!!!!!!!!!

Hugs,

Mary Jo
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"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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Old 07-20-2007, 08:09 PM   #9
caya
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Kate,

Thanks for posting - I thought of you many times today.
Sounds like you and your onc. have a good plan of attack, and I do mean attack.
Wishing you all the best for a complete recovery,
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 07-20-2007, 08:30 PM   #10
hutchibk
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TCH knocked out my small lung mets 2 years ago! You will kick butt on this protocol...
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Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 07-20-2007, 08:40 PM   #11
Sherryg683
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I'm praying for you, I know it's hard having to get back on chemo once you've gone through it. I have a friend who was diagnosed stage II, HER2+++ right before me, she says she would never go through chemo again. I know that she would if she had to, we do what is necessary to live. The will to live is so strong that we won't go down without a good fight. You are one heck of a fighter and will kick this beasts butt. I hope this combo will not be too hard on you...sherryg
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Sherry

Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
8 years NED now
Scans every year

Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
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Old 07-20-2007, 08:45 PM   #12
jones7676
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I hope this cocktail works wonders for you and kicks butt on those mets.
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Old 07-20-2007, 09:57 PM   #13
Belinda
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Kate - great to hear from you. I can hear your fighting spirit coming through in your post. It sounds like you have a great onc and a great plan - ready to smash those b&^$$(y cancer cells to billio!

It's a bugga to have to lose your hair again, but it's summer where you are so hopefully it will be a cooling thing to do.

Warmest wishes - Belindaxx
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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 07-21-2007, 06:06 AM   #14
Mary Anne in TX
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Hat time now....hair dye later...

Kate, I look at that fabulous face of yours on your message and just have this feeling that you will not only fight and win, but make an adventure of the thing! Those mean mets better stand and take notice that they are going down! I hate that you've the fight to make, but believe with you that the battle is won! Glad your daughter will be taking you and being at your side! She's awfully lucky to have such an incredible mom! And thanks for letting us know the plan and that you're ready to fight ! The very best wishes and prayers of success to you. mary anne
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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 07-21-2007, 11:08 AM   #15
Andrea Barnett Budin
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Wink Kate -- You Rock!

Thanks so much Kate for letting us know how yesterday went. We were all waiting to hear, hoping, praying. And, we will still hold you in our thoughts. We love that face! (With or without hair.) I remember going bald for the second time, facing the chemo tx for the second time. It took me a while to get where you already seem to be! Good for you! You have the most amazing Spirit. You glow, girl!

TCH is a dynamite combo. Sorry you have to go through it, but you will triumph! I can sense that. You have attitude, all the right stuff going for you, surrounded by much love and the most beautiful smile! Keep smiling, Kate. I will hold you in my heart. Sending loving, healing energy directly to you from Boca... ANDI AND HUGE HUGS AND SQUEEZES TOO. LOVE YOU...
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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 07-21-2007, 04:16 PM   #16
Ruth
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Kate,

I wanted to scream when you first posted about the possibility of lung mets...this life we all lead is such a roller coaster. Your treatment plan sounds good to me and lots of ladies here. You have incredible strength and knowledge about what path to take that is best for you.

I am in Athens and if you ever need anything, please let me know. I would be happy to bring your family dinner, send your family dinner (Olive Garden does GREAT carryout), take you to treatments or whatever you need. You have been so inspirational to so many women on this board and such a good person to get advice from. There are people from all over the world that you have helped and who admire you. If one of us can help you in a physical sense, please let me. I'm not that far!

Bless you and my family will be praying for you.

Ruth
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[/SIGPIC]~~~~~~~~~~~~~~~~~~~~~~~~~~~

Diagnosed 6/03 nursing daughter
Dose dense A/C 4x
Modified rad mast 8/03
IDC; 3 cm; 10+/16 nodes; ER/PR-; Her2+++
Weekly taxol w/Herceptin (off label) 12x's
40 weeks Herceptin
Radiation 33x
Reconstruction w/ implants 05 & 07
NED
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Old 07-21-2007, 07:53 PM   #17
chrisy
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Kate, TCH blasted my liver mets in 04 and herceptin continued to keep them gone for 2 more years. You'll do well on this cocktail, although I know you'd just as soon have a margarita instead!

Just curious, if TCH isn't "big guns", what is?
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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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Old 07-21-2007, 08:31 PM   #18
sassy
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Kate,

Your spirit shines thru as your approach your plan of attach. I have thought of you and kept you in my prayers. Keep strong and keep moving forward positively.
________
Marijuana bubbler

Last edited by sassy; 08-22-2011 at 09:23 AM..
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Old 07-21-2007, 09:45 PM   #19
lexigirl
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Kate,

As the other ladies have already said, your spirit shines. I do believe that you will kick this cancer to the curb! Please know I am thinking of you.

HUgs and Prayers,
Lexi
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Old 07-21-2007, 10:25 PM   #20
Alice
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Hi,
I am just wondering how the mets to the lungs was confirmed? I have had CT's that showed multiple nodules to both peripheral lung lobes and I have had multiple Dr's say that the nodules could be scar tissue. I just was curoious as to the final evaluation. Did you have a biopsy? I am forever hopeful that your treatment goes as planned. You seem to be a very enspiring person on this site and I have read many of your posts and responces. I wish you well in this and will look for updates on your progress.
Alice
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