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Old 03-16-2008, 09:09 AM   #1
tousled1
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Question Tykerb/Xelolda Update

Hello to everyone,

Well, I got home from the hospital Friday at around 5:00pm, oxygen in tow. Not exactly what I wanted to bring home with me, but all the same I'm home and it feels great to be here.

My electrolytes are still a bit off so we're taking medication for that. In addition to Zofran, Phenegran and protonex for the nauseau and immedioum for the dirrehea I seem to be doing ok. I have severe heartburn but the nauseau is under control. I'm still on steroids and am being gradually weaned off the Prednisone. So many pills to take a day and certainly not enough time in the day to get them all in. Seems like I'm turning into a real pill popper!

I must admit that the worst thing is the fatigue. Do you think I should finally listen to my body and try and take it easy??? Being a Type A personality it's very difficult for me to just sit and wait for results.

I have an appointment Monday morning to see my oncologist and at that time we will sit down and discuss our long term goals. We will discuss how we are going to monitor my progress with this combo. My oncologist has mentioned that she may want to give me Ixempra the week when I don't take the Xeloda. I say -- go for it -- let's hit these vicious mets with all we've got! I know it takes longer to notice whether this combo will work since it's pill form.

I want to thank everyone for your wonderful words of encouragement and support and especially for all the prayers being sent my way. I don't think I ever realized how much I depend upon you guys for guidance and support. You are a truly amazing group of people.

I may be laying low for a few days trying to recover some of my strength but am in no way leaving this wonderful website. I know talk is cheap -- I say I'm going to take a break but somehow everytime I walk by the computer it just seems to call out my name.

Any ideas on what I can do to help overcome this extreme fatigue would be appreciated. I hold each and everyone of you close to my heart.

I want to especially thank Karla (Kavy) for keeping you posted on my progress and also calling me every night relaying all your wonderful words of encouragement.

I have found that though life you develop few friendships but develop many acquaintances. Here on this site I have met women and men who I consider very dear friends who hopfully one day I'll be able to meet in person and give them a great big hug for being here for me.
__________________
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 03-16-2008, 09:27 AM   #2
lilyecuadorian
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I' happy to read your post ...very happy ..I going today to the church and like everyweek I will ask ask and ask for all of us ...and about your post I believe you 100% because that is what I fell about our dear sisters ...and wish one day to meet everyone and give them a hug too and I sure that with your temple and strength you are going to get out from this situation ...soon very soon
__________________
Lily
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 03-16-2008, 10:03 AM   #3
Mary Jo
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Hugs

Hi Kate,

I year ya........about this site and group of "friends!" They truly are that, aren't they. A family really. We may not always agree or see eye to eye on everything - but hey, what fun would that be........we'd be like little robots if that were the way we are - BUT like family - through it all we stand together supporting and loving one another through whatever it is we need.

I am supporting and encouraging you dear friend. Yes, listen to your body (that type A personality - geez, are we all that here? Haha) Rest sweet girl....................pamper yourself...............and let others pamper you.............get well, please.

Prayers said for healing and peace today.

Love to you....

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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Old 03-16-2008, 12:27 PM   #4
Andrea Barnett Budin
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Wink

SO GREAT TO HEAR FROM YOU KATE! Sorry. I was shouting. I am just sooo glad you are home! Even if you brought a *souvenir* w/you. Let it serve as a reminder that your body is asking for you to cut it a break -- and relax! Read something inspiring. There's a great thread in KEEPING YOUR MIND OFF BC w/a super list of books that Sisters recommend. Choose your category. You know I love the spiritual ones, but there's lots there. SIT DOWN. And exercise your mind. Let your body heal, please. Looking forward to the day I get to meet you in person and get to give you a REAL hug. For now -- here's a cyberhug, Kate. Filled with love...
BTW -- what are you doing for the heartburn? Prilosec is great. Doc says if need be take 2. For me, 2 is often needed. BUT DEFINITELY -- stay away from anything that starts w/an M! (I learned this the hard way!) M means MAGNESIUM. Which is not good if you're experiencing bathroom drama...

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 03-16-2008, 01:03 PM   #5
DonnaD
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Kate,
We are a family here. When one hurts we all hurt. When one rejoices we all rejoice. Welcome home!

Many are keeping you and your doctors in our prayers.
Rest and recover, sweet friend.
Donna
__________________
Donna
Crystal Lake, IL
Diagnosed 8/4/06 at age 54
Lumpectomy 8/30/06
Stage llA, grade 3, ER/PR-, Her2++
1.7 cm tumor, 1+ lymph node out of 9
Completed 4 A/C, & 4 Taxol with Herceptin
36 rads completed 5/16/07
Mammograms, 7/07 clear
fractured ribs in radiated area 10/07
Finished Herceptin 12/27/07
Mammogram,CT,tumor markers 1/08 - small lung nodules in radiated area, repeated tests 3/08 stable
Mammogram,CT ,tumor markers 6/08 stable
NED 2 years!!
3 years !!!
4years!!!!
4 years, 10 months and 8 day NED, calling it 5 years!!!
Official 5 years 8/30/2011
8/31/ 2012 - 6 years!!!!!!
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Old 03-16-2008, 01:04 PM   #6
caya
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Welcome Home Kate !

Kate, being a fellow Type A personality, all I can tell you is just listen to your body, and rest and relax all you can. I know it's difficult, but in order for you to heal, the body needs to rest. Even if you just lie down on your couch and watch TV (something light and funny, no heavy stuff!!) you will be amazed at how peaceful this is.

I am praying for your complete and speedy recovery.

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!!
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Old 03-16-2008, 02:52 PM   #7
Mgarr
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There's no place like home.... missed you glad you are "home again with us"
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Mary


Diagnosed 11/04 @39yrs. young
Stage IIB
2.5 cm, ER/PR- Her+++, grade 3
Partial Mast., 1/3 pos. node
1/05 full node dissection
4 A/C 4 Taxol DD, Herceptin 1 yr.
30X rads.
BRCA Negative
NED

Hope is the thing with feathers
That perches in the soul,
And sings the tune without the words,
And never stops at all -Emily Dickinson

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Old 03-16-2008, 03:02 PM   #8
hermiracles
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Hey Kate! Thanks for the update Always nice to be back home eh?
Take it easy Sis.
Hope Lily is going well on her Tykerb/Xeloda too!
Lots of love my sisters
♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥
Blessings
Hermiracles
__________________
2003 L/DCIS –> LWE: High G./Comedo - 6 nodes clear 6 wks Rx
04/07 2 miracles born ~ very grateful
06/07 Susp areas L/b
09/07 Stage 2 bilat. mastectomy R/ b. clear extens DCIS/IDC Paget’s 8 nodes clear ER(<5%) HER2+++ CT clear
11/07 Portacath - FEC
15/11/07 Stage 4 Emerg op - hip replacemt #NOF bone mets H/Taxotere
12/07 Rx to 'spots' on spine/R/hip/femur 3wkly H
2008 H+T mets to rib/sternum? Aredia CT clear! Cont. H + Aredia 07/08 1 wk Palliative Care - mets to lungs + ?1 to brain
09/08 Stop H complete Epirubicin 1wk PC new brain mets
10/08 2wks WBR 1wk PC 22/10/08 Tykerb/Xeloda 12/08 6 CEREBRAL METS COMPLETELY GONE! Rib mets down to <1cm.
01/09 Tumour markers normal! Rx to L/arm
03/09 LUNGS CLEAR (ALL NODULES GONE!), brain clear, liver clear. Bones stable! ~ THANK YOU GOD
07/09 Repeat CT Scan ~ ALL organs clear apart from bones which remain stable. I walk in gratitude.
***************
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Old 03-16-2008, 03:18 PM   #9
Faith in Him
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Dearest Kate,

Glad you are back in your own home. It is good to give our bodies a rest from all the tough treatments we have to go through. I continue to pray for you everyday.

I hope that you are able to have a little fun on St. Paddy's day.

Love
Tonya
__________________
DX 02/01/07
2.5 cm, Er/Pr-, Her2+++
18/20 Nodes
03/07 CT & Bone scan - Clear
AC x 4, Taxol x 4, Added Herceptin
Radiation until 09/07
Herceptin every 3 weeks until 06/08
01/10/08 local recurrence -IBC
01/28/08 CT & Brain MRI - clear
02/08 - Navelbine & Herceptin
05/08 -MRM
05/08 - Gemzar & Herceptin - didn't work
09/08 - Hyperthermia rads
03/09 - Tykerb/Xeloda
05/10 - Tram flap to fix wound
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Old 03-16-2008, 04:02 PM   #10
Bill
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Hi Kate! Glad you're back home. I wish I could help more, but the protonix is for heartburn, I believe, and like the Duchess Andrea said, prilosec is good too. Nikki would pop a Tums or a Gas-X as needed and that seemed to help her too. I'm glad the nausea is under control. I know you already know this, but for the fatigue, drink lots of water, rest often, and eat smaller meals more often, low on fats and protein for right now. Fruits, veggies, sunflower seeds, walnuts, almonds, but remember the BRAT diet too. Hopefully the immodium will work. Love ya, Katie, Bill

Last edited by Bill; 03-16-2008 at 06:38 PM.. Reason: spelling
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Old 03-16-2008, 04:35 PM   #11
WomanofSteel
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Kate , glad you are home again. I think you should definitely listen to your body and the docs and rest. Sometimes that is the best medicine.
__________________
dx aug 03
invasive dcis 1 cm
er/pr/her2+
bcs 8/4/03
bcs 8/21/03 0/16 nodes
tx 4x ca 36 rad tam
postmenopausal 06 aromasin
sept 07 biopsy node in neck
muga/pet/cat/bone mets to lungs nodes and liver stage iv
tx hki-272
tx not working switched to taxol herceptin
Taxol not working switched to navelbine
navelbine is causing bad neuropathy
starting gemzar
gemzar quit on me now on Ixempra due to increasing number and size of liver mets
another progression starting tykerb/xeloda
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Old 03-16-2008, 04:39 PM   #12
Lolly
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Kate, welcome home! I love the picture Mary posted, the RUBY SLIPPERS say it all

Rest, rest rest!

<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 03-16-2008, 05:13 PM   #13
BethC
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Kate, I know you are glad to be home. Just take it easy and do anything that you think sounds good. I personally think that KitKat candy bars help with fatigue

Love,
Beth
__________________
DX 9-19-07 at age 40
DCIS, Inv. Duct. Car. 3 cm
Positive lymph node biopsy
Er+Pr+Her+++
Carboplatin/Taxotere/Herceptin
10-1-07 -- 1-16-08
Herceptin every 3 weeks until 9/24/08
Lump. and node dissection 2-12-08
BRCA1 and 2 negative
30 rads finished 4-23-08
oophorectomy 5-6-08
Femara started 5/25/08
Zometa for osteoporosis every 6 mo. started 9-24-08

Married 16 years!
3 kids - daughter (10), twin sons (7)
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Old 03-16-2008, 06:31 PM   #14
sassy
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Kate,

So glad you are "home sweet home". Nexium is great for heartburn, if its an option.
__________________
Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
14YEARS NED!
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Old 03-16-2008, 08:36 PM   #15
Esther
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Kate, I can just picture those pesky mets retreating! Hope you feel better soon.
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Old 03-16-2008, 09:00 PM   #16
jones7676
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Kate,

My advice....take it easy and take care of yourself...oh how I understand the fatigue. Give yourself a break. So glad to see you are home.
__________________
Barb

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 03-16-2008, 11:32 PM   #17
Paty
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Nice to know you are back. Take it easy and rest. I know things will be ok.
__________________
Dx. June 30th, 2006 at age 43
Lumpectomy rt breast
2.2 cm tumor, 13 nodes all negative
ER-PR+,her2+++
6 FAC
32 Rads
Dx. Lung fibrosis due to radiation
Ended 1 year herceptin in March, 2008
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Old 03-17-2008, 01:18 AM   #18
tousled1
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Love the Ruby Slippers! That says it all. Now all I have to do is learn to kick my heals together and away we go. I'm chasing the elusive NED and just have a funny feeling I'm going to meet up with him someday soon.
__________________
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 03-17-2008, 04:56 AM   #19
Sheila
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Kate
The new Tykerb Diva that you are...you will not only meet up with Ned, You'll be dancing with him! Wear the Ruby Slippers.
Sending much love and as always lots of prayers...heal fast dear Kate!
__________________
"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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Old 03-17-2008, 08:50 AM   #20
Jean
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Posts: 3,154
Dear Kate,
It is so wonderful to see your huge smile again....
Like everyone else - I am thrilled you are back home.
You are so funny - yes the computer is addictive isn't it?
Often I have to wonder how we managed with out the inter-net?

Glad you are back on the site - we missed you.
Your body is speaking Kate - and need extra rest, so you will
have to slow it down girl....(you type A's are tough to handle) lol

Can anyone give you a great foot massage? That is so comforting
and works like a sleeping med for me. If I were closer to you
I would be glad to offer my services...

Yes, Kate you have a great idea there about seeing each other,
until then I am sending you a huge hug...right now!

Love,
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
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