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Old 12-06-2007, 06:17 PM   #21
jones7676
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Location: I live in Christmas, MI - located on the shores of Lake Superior.
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I just sent a private email requesting that Tip Toe be sent straight to Texas. I can go on the list to have her visit again later....and that will work out fine. My friend is having a small birthday party for me tomorrow night and she wouldn't make it in time for that and I am having stereotactic next Wednesday, then chemo on Thursday...... I have a lot going on right now anyway and it may work out better this way. Have fun!
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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 12-06-2007, 09:18 PM   #22
lilyecuadorian
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I'm next if is Ok with Home-Owner PinkGirl do I need to write my address now, well is in Charlotte North Carolina anytime Tip Toe is very welcome -bienvenida just need her schedule on food and nigth time hours
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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 12-07-2007, 08:10 AM   #23
PinkGirl
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Wink Tippy

Hi Brenda
I'm glad Tiptoe is going to make it to San Antonio for the
group pictures.

I just noticed that Lily and Flori have requested a visit from
the Ham. I don't know if they have a preferred time or just
want to be penciled in. Keep an eye on her at the big
conference. I think she's from small-town China.

Attachment 185
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PinkGirl

Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++

Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09



" I yam what I yam." - Popeye

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Last edited by PinkGirl; 03-29-2008 at 07:32 AM..
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Old 12-07-2007, 09:53 PM   #24
rinaina
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TipToes Next Stop

TipToe is ready to take on his next adventure. I wasn't able to get TipToe shipped out to Barb on time due to the fact that my son ended up in the hospital and I have been consumed with that. Barb asked that I just send TipToe on to Texas to be with Brenda but I need Brenda's mailing info. Barb said when she is feeling better she will schedule another visit with TipToe. So I f someone could give me Brenda's info I will send TipToe to her. Thank you and i will be sorry to see the little princess go.
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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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Old 12-08-2007, 03:20 PM   #25
tricia keegan
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I have'nt had much free time to log on lately and see how Tip is doing but had requested she stay with me whenever its convinient to her schedule?? I'm away week comm Feb 23rd to march 2nd but home any time before or after that date..
I'm sure we can make her comfortable here, it IS wet and cold so she'll need to wrap up well and maybe bring her brolly! Christmas would be nice if she could make it. Pics may be a problem as I don't own a digital camera as yet but have dropped lots of hints as to what I'd like for a Christmas pressie
I do have an ok camera on my phone though, Pink girl I have a question...would Tip object to spending time with my six cats do you think?? They're mostly friendly and like visitor's but I've never had such a distinguished guest before so want to make sure I have a word with them beforehand to ensure they perform the correct protocol for Tip??
They have lots of toys she may enjoy for amusement and a ten foot cat tree which they insist is tremendous fun if climbed at speed..she may well enjoy the whole experience and I'll be certain to they keep their drinking and swearing under control!!!!

P.S...I think it may be good for Tip to broaden her mind and travel a little to Ireland..does she have an up to date passport does anyone know??
The Paddys day parade here in Dublin would be great if Tip can make it,I'll try to keep the Guiness to a minimum but sure she's enjoy the different culture!
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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 12-08-2007, 07:40 PM   #26
PinkGirl
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Wink

Tricia,
Tip's very easy-going. I think the cats will
be fine. She was very quiet with me but Andi
found her chatty. But, Andi could probably get
anyone talking.

I'd be careful with the beer. Remember Kathy S
from Tokyo told us about Asians missing a
certain enzyme that processes alcohol. I would
keep a close eye on her with the booze.

She has a current up-to-date passport from
the People's Republic of China (with a picture
of Chairman Mao) on the front.
__________________
PinkGirl

Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++

Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09



" I yam what I yam." - Popeye

My Photo Album
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Old 12-09-2007, 12:20 AM   #27
hutchibk
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Rinaina - I sent you a PM... I look forward to my time with Tipsy. I hope she likes Tex-Mex food. And does she like seminars/learning things? She will get her fill of new b/c info at the SABCS... that is if we can keep her out of the hotel bar!

Tricia - after January, I think she will head out of the US. Don't know if she will go east or west first. Any suggestions out there for her Asia/Euro travel itin?
__________________
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 12-11-2007, 09:19 PM   #28
LAURIE
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I would love to have tip toe visit. I am glad to hear he lots of sweaters, its cold in Ohio. I am free for lat week on Jan. or anytime in Feb. I will coordinate his visit with my "I'm done with treatment party". I think we are shooting for the last week in Jan. or first of Feb.
__________________

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 12-12-2007, 09:39 PM   #29
Leslie's sister
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following tip toe

hi everyone:
I have been following the travels of Tiptoe not thinking that I would fit into his travel plans but realized that he might want to join me next year. In Feb 2008, I plan on running the Inaugural National Marathon to Fight Breast Cancer in Jacksonville. My travel dates are Feb 15 to Feb 18, with the race being on the Feb 17. I could commit to carrying the little critter during the race-please tell me he isn't too big as it is 26.2 miles of running! Anyhow just a thought. It might be fun for him to run in a marathon esp if I am doing all the work. If he is already booked up, that is fine. I know that he is one busy critter!
Lisa
__________________
Leslie's Sister (Lisa)
Diagnosed 5/17/06
Left breast Stage II
5 cm. Her2Neu+++, ER-, PR-
1 positive node out of six,
double mastectomy 6/9/06;
TCH started 7/12/06
last chemo 10/25/06
herceptin ended 6-11-07
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Old 12-13-2007, 07:13 AM   #30
Leslie's sister
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Red face links

sorry. I meant to attach a link to the marathon website.

http://www.breastcancermarathon.com/

and a link to an article announcing Mayo Clinic's support and ultimate receipt of funds from the marathon

http://www.mayoclinic.org/news2006-jax/3517.html

Lisa
__________________
Leslie's Sister (Lisa)
Diagnosed 5/17/06
Left breast Stage II
5 cm. Her2Neu+++, ER-, PR-
1 positive node out of six,
double mastectomy 6/9/06;
TCH started 7/12/06
last chemo 10/25/06
herceptin ended 6-11-07
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Old 12-13-2007, 02:12 PM   #31
PinkGirl
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Wink hmmm

I hate to be a stickler for words, but I am .....
I have noticed that Tiptoe has been referred
to as "he" or "him".

Tip is definitely a female..... remember this all
started because of her ovaries
__________________
PinkGirl

Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++

Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09



" I yam what I yam." - Popeye

My Photo Album
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Old 12-13-2007, 09:32 PM   #32
Leslie's sister
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oops

oops. sorry. Hopefully, SHE is the forgiving type!


Somehow I missed Tiptoe's beginnings.

Lisa
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Leslie's Sister (Lisa)
Diagnosed 5/17/06
Left breast Stage II
5 cm. Her2Neu+++, ER-, PR-
1 positive node out of six,
double mastectomy 6/9/06;
TCH started 7/12/06
last chemo 10/25/06
herceptin ended 6-11-07
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Old 12-14-2007, 03:27 PM   #33
Andrea Barnett Budin
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Wink Brief Synopsis. The Birth Of Tiptoe...

WELL, we all found out that -- Herceptin is derived from Chinese hamster ovaries. So Pinkie got the bright idea to adopt a Chinese hamster and have HER travel around from HER2 Sister to Sister. This is in appreciation for the sacrifice the little critters have made to help save our lives! And, PinkGirl thought it would be great to share pics of Tiptoe in everyone's various home base and give some insight into our lives. The Pink One hails from Canada. She sent Tipsy (who has a drinking problem, but is spiritually grounded now and doing well on her world tour) to me, in Boca. (Fla.) I sent Tippy to Marie (Believe) and you can follow HER itinerary, created by her personal travel agent, Brenda (Hitchibk). Each *hostess* is supposed to update us on Tip's activities and give us a running commentary of her witticisms and post pics.

There is also a JOURNAL which each Sister has been contributing to and passing on along w/TipToe. And are acquired wardrobe, including blue stud earrings, a bc necklace w/a hope charm, a little bc blanky (for the cold weather), a sweater and I can't remember. Tiptoe also has a passport! What with coming to Pink from China and all...
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 12-15-2007, 05:58 AM   #34
Leslie's sister
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thanks

thank you for the synopsis on Tiptoe's origins. Now I understand, remembering the whole hamster thread but not connecting Tiptoe to it. A drinking problem, huh? Not to worry, my problems are strictly related to food, and the desire to overindulge desserts. If Tiptoe has no problem with cheesecake, she is fine with me. So......having said that, is she up for 26.2 miles in Jacksonville Presidents Day weekend?
__________________
Leslie's Sister (Lisa)
Diagnosed 5/17/06
Left breast Stage II
5 cm. Her2Neu+++, ER-, PR-
1 positive node out of six,
double mastectomy 6/9/06;
TCH started 7/12/06
last chemo 10/25/06
herceptin ended 6-11-07
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Old 12-15-2007, 07:26 AM   #35
jones7676
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When everyone else who has already requested a chance to have Tip, please re-add me in at the end of the list. I don't know how she will like the U.P. blizzards and driving wind off Lake Superior. Hopefully she will be happy to be snuggled in the house with me and be content with a few visits to local friends and sights around the area. I hope her favorite color is white! (LOL)
__________________
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 12-15-2007, 06:09 PM   #36
PinkGirl
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Smile I have to ask (again)

Hi Barb from Christmas,

Is there a story behind that pink flamingo in a Santa suit?
__________________
PinkGirl

Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++

Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09



" I yam what I yam." - Popeye

My Photo Album
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Old 12-16-2007, 12:06 PM   #37
rinaina
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Hoping TipToe made it to Buda Texas in time for part of San Antonio. Sorry for the delay, my mind wasn't functioning outside of my immediate concern for my son and his hospitalization. He is doing much better thank goodness but has a ways to go. Thank you for your understanding.
__________________
~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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Old 12-16-2007, 12:11 PM   #38
Andrea Barnett Budin
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Wink

Rinaina, I sure hope your son is better. Yes, you must focus on him, and making sure all the docs and nurses are doing what is needed. We each need an advocate. When Paul was in the hospital last summer, in between all that and running home to walk the dogs, go to the surgical supply store, etc., I meditated and prayed. Big time.

Is there really a Buda, Texas?

Andi
__________________
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 12-16-2007, 12:18 PM   #39
rinaina
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Thanks for understanding Andi and yes there really is a Buda Texas. Brenda first told me Austin so TipToe took a wrong turn for a while but she is or should be in Buda by now. Think I will take your advice and meditate or at a minimum try to relax when I can....not so easy when you have a sick loved one, but will give it a try. Thanks again.
__________________
~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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Old 12-16-2007, 12:39 PM   #40
caya
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Rinaina,

I am glad to hear that your son is improving. I pray for a 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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