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Old 10-12-2007, 09:30 AM   #1
Believe51
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~TIPTOE: From Rhode Island to:...?????

Girls help this very busy caregiver out. I know you are all making plans for Tiptoes arrival and have different activities in store for her with different schedules. My question is this (without having to write a calender out and troubleshoot):

Who will Tiptoe be visiting next?? I do not want her to miss the Kentucky Derby or the Breast Cancer Seminars, etc. If someone has no special dates for her I think she should visit there first. I want Tiptoe to grow up very cultured and not to miss a thing. Funny how I already love her so much. So if your schedule ideas have no specific dates please write to let me know you need her to visit first.

Again, our furry little friend has many dates that I cannot keep up with. Oh....and PinkGirl I have to admit I called Andi to check up on Tiptoe. It is not that I do not trust Andi, I just needed to know she is adjusting to her new family members. They have bonded and I feel secure knowing tht she is in good hands.

Only problem I have is that I KNOW ANDI IS A TOUGH ACT TO FOLLOW!! Even though I want Tiptoe to be spoiled, I am going to have to be quite creative after BB gets her hands on her!! Tehehe!!>>Believe51

PS: I cannot wait for Tiptoe's arrival!!!!!!!!
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9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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Old 10-12-2007, 10:48 AM   #2
hutchibk
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I don't need her in Texas until around Dec. 10 (for the S.A. BC Symposium)-

Projected calendar supposing she stays about a week vacationing in each locale (she could stay longer):

Oct 1ish - @ home in Canada w/ Pink
Oct 8ish - Boca Raton w/ Andi BB
Oct 16ish - Providence w/ Marie
Oct 23ish - NJ w/ Becky
Oct 30ish - ?
Nov 6ish - Mississippi w/ Leslie
Nov 13ish - Georgia w/ Kate
Nov 20ish (for Thanksgiving)- ?
Nov 27ish - ?
Dec 3ish - Michigan w/ Barb
Dec 10ish - Austin/San Antonio w/ Brenda (also visit Lance Armstrong Foundation)
Dec 17ish (stay through Christmas) - Travel to Illinois w/ Sheila for the holiday
Dec 27ish - Milwaukee w/ Still Here (who will take her to Tucson/Miravel for her R&R spa trip w/ Steph, Crisy, Sherri & Stillhere
Jan 6ish - Home from Miravel w/ Steph
Jan 16ish - Boise w/ Marlys??
Jan 23ish - Oregon w/ Catherine
Jan 30ish - ?

Spring 2008 - Tiptoe heads east to Japan/Australia?? Kathy S in Tokyo?
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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 10-12-2007, 11:21 AM   #3
Andrea Barnett Budin
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Cool Just For Tiptoe Fans

Marie and Brenda -- you girls are very efficient! Which is a good thing. We need to be organized. A calendar of itinerary is a super idea.

Wait till you lay eyes on Pinkie's Journal! (BTW, P -- what kind of glue do you suggest??) This book is a work of art!! No kidding. Most impressive. And intimidating to live up to its high standards.

Paul has copied the pic of Tipsy and -- is that the Dalai Lama(?) that Pinkie forgot to include in her package. Forgive my ignorance. I know that face. Just can't remember his name...

Just to let you know... Tiptoe is darling. She likes when you stroke her hunched back with your index finger. She gives you this look, like she's blissed out. Just took a pic (WHICH I HAVE NOT YET FIGURED OUT HOW TO GET FROM THE COMPUTER TO THIS SITE!!! **#!??* -- but The Pink One is helping from Canada -- all for the cause -- sharing). She was on the comfy chair in my bedroom w/Chase and Scamp looking out the double sliding glass doors overlooking the pool and greenery. I actually saw Chase, who was closest, lick her! Several times. He is generally very stingy in that area, whereas the Scamp is a lover, giving kisses to any one. They have both quickly grown quite fond of the tiny one... Chase put a paw on her back, trying to get her to play w/him. She didn't move. Guess she's content just to hang. And I don't mean by her prehensile tail.

Can't wait till my grandkids meet her on Sunday! Did I tell you the pink plastic bc bracelet I had for her is way too big, so I have put it around her neck as a lovely necklace. I have a HOPE charm dangling from it. That, with Pinkie's teeny blue stud earrings that seem to bring out the sparkle in Tippy's eyes make her look especally beautiful. Not to mention the pink hair extensions Pinkie has woven behind Tip's right ear! She enjoys all the pampering. I can tell. She's a real girly girl.

Oh, and I learned that Tip loves all veggies. (Tomato leaves are poisonous though, so be careful...) And as for fruits -- they contain too much sugar and cause hamsters to develop diabetes -- so even though T sniffs them, I take them away. Seeds and grains and nuts are good however (and the insides of Birds Of Paradise are a real treat!).

We are having the best time! Oh, and Karen, I told Tiptoe not to tell Paul about our meditation sessions -- just to test her ability to keep a secret... Turns out, he can't understand her little pipsqeaky voice anyway. Must be a sound only *women* can hear... Sometimes I say to Paul, What's that sound? And he says, What sound. And we're extra quiet. And he says, I don't hear any thing. And I clearly do hear this high-pitched shrillish sound (maybe coming from the radio that has the volume turned wayyy down). Women are especially sensitive, as y'all know, in many ways.

With loving energy and hugs,

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 10-12-2007, 11:59 AM   #4
PinkGirl
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Cool Tiptoe's schedule

Thanks Brenda for making the first draft of an itinerary for Tip. The BCS in San Antonio and the spa vacation are the two most important events. I think if anyone else wants her on a specific date, they will have to sort of keep track of her whereabouts and make sure the person who has her knows about it. That's just my thoughts.....I am not the hamster's keeper. She is an individual, an adult, a free spirit...........I was just the first one to meet her.

Andi, as for glue, I used an ordinary glue stick and then added a bit of tape on the stubborn ones. The pictures that are sort of "dull" were printed on sticker paper. Then I just cut them out and peeled the backing and put them in the journal. It's the easiest way, except that the pictures are not glossy.
Maybe there is glossy sticker paper in the States - I couldn't find any here, but then again, I live in the Boonies.
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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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Old 10-12-2007, 12:13 PM   #5
Believe51
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Talking As For The Tape....

If I can find the tape (should be no problem) I will include it in the return package for the next family member to use. Did I mention I am besides myself with anticipation?????>>Believe51
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9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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Old 10-12-2007, 12:19 PM   #6
Andrea Barnett Budin
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Cool Boonie Scrapbook Place

Pinkie,

I don't know the population of your Boonies -- but you should start a SCRAPBOOKING store! There is one in Boca. I ventured on a project for Paul's 65th Bday and found myself in over my head. My dghtr found this place, and it's a whole world of artsy/craftsy pp. I did the best I could, and it was the perfect gift for the man who has every thing and doesn't want any thing. I made him tear up! And that's quite a task. Even really sappy movies where I'm SOBBING, he does not shed a single tear.

You are really talented, Pinkie. And pp do enjoy this hobby.

I have a glossy pic (printed on Paul's color printer -- mine is b&w) -- with a peel off sticky thing in the back -- of ???the Dalai or whoever that guy is and Tip. I think it's the kind of paper P uses to print pics. It will appear in the Journal with proper notation, I promise.

Monday will be Journal day. Then I will prepare Tip for her next adventure to Marie's...

LOVE,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 10-12-2007, 12:37 PM   #7
jones7676
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I would love to have her Dec. 3ish so we could celebrate my 50th birthday - as long as she doesn't mind the snow in Upper Michigan!
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10/03 Radical Mastectomy 3 cm tumor - 1/17 Nodes Stage II B, Her 2 +++ ER-/PR- 11/03 4 AC 4 Taxol 12/05 Stage IV - Lung met , Bone mets - Carbo, Taxotere, Herceptin 9/06 - 2 cm brain tumor 10/06 - Tumor removal surgery - Herceptin Halted 12/06 gamma knife tumor base.1/07 Navelbine/Herceptin 4/07 Rads to R femur 5/07 Stereotactic - new 2 cm brain tumor 4/07 Start Xeloda 5/07 Tykerb added 7/07 Brain MRI clean 10/07 .055 cm brain met found. 12/07 Stereotactic -1 cm brain tumor Start Tykerb 11/07 Abraxane/Herceptin 5/08 Cisplatin, Gemcitabine/Herceptin 6/08 Stereotactic to 1cm 9/08 Stereotactic repeat (growth). 11/08 Pet Scan Good but new tiny met on L lung/dead Brain surgery (no cancer cells found/scar tissue) 1/09 Chemo restarted 2/09 Pet Scan Bad - R larger very active/active L active lymph nodes both sides of chest MRI- mets slight increase 2/09 Start Doxil/Tykerb Treatment
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Old 10-12-2007, 12:39 PM   #8
Andrea Barnett Budin
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Talking This Is The Best Thread Ever...

I cannot tell you how many times I have giggled reading each and every post. And every time I pass Tiptoe, she wiggles her whiskers and smiles at me. (Did I mention her left whiskers keep getting stuck to her face? I just give them a tickle and they fluff right up.)

She even made Paul smile. (I saw him.) Don't think he'd admit to it though...
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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 10-12-2007, 12:53 PM   #9
Believe51
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Brenda...

Could you edit your post to include Jones7676 for December 3ish?? And by the way Jones, that is my younger brothers birthday!! He is my only sibling.>>Believe51
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9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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Old 10-12-2007, 01:07 PM   #10
Sheila
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If Tip is in Michigan for the 50th, I can bring her with me to San Antonio...she can fly from Chicago Ohare....or if not, I can bring her back after San Antonio....I would like her to see Illinois....she can come to chemo with me...that will be fun! Then she can go to Arizona via Wisconsin with Karen.............
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Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 10-12-2007, 01:08 PM   #11
StephN
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Suggestions?

Hi -
O Keeper of Tip's Agenda, whoever that is.

Seems maybe a good plan that if Brenda has her then gets her to San Antonio (I can see her hanging out on a special little throne on the exhibit table!) and passes her on to someone "up north" such as Sheila.

Maybe Christine and Joe can keep her during the symposium and introduce her to all the researchers at the Genentech reception.

That way Sheila (or whoever up north) can get her to Karen to bring to the spa gathering first week of January. From the spa, those of us there can draw straws or something to see who will take her to another corner of this great land of HER2 survivors.

P.S. Looks like Sheila and I were posting at the same moment and have the same ideas - wonder what Freud would make of that??
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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.

Last edited by StephN; 10-12-2007 at 01:10 PM.. Reason: Add P.S.
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Old 10-12-2007, 01:28 PM   #12
Karen W
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I live in Northern California. Do you think Tiptoe would like to spend sometime with us? I am sure we can find many activities to keep her busy and happy.

Let me know what works.

Karen
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Old 10-12-2007, 03:23 PM   #13
Sheila
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Steph
Great minds think alike??? is that the saying...she will be treated royally in San Antonio.....might have to see what kind of little chair I can find before I go!
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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 10-12-2007, 09:32 PM   #14
hutchibk
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Hows that look so far?

Keep in mind that she will become a star in SA - she will meet Kathy LaTour (we all will actually) and maybe be interviewed for CURE magazine (all of us as well... Surprise!).

And I will email my Genetech friend in San Fran and tell him about her so that he might prep their folks who will be at the symposium.
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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 10-13-2007, 04:43 AM   #15
Kathy S in Tokyo
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We don't need a specific date for Tiptoe's Tokyo tour. We can take her to the local hot spring spa and the Tokyo Regional Fish Market as well as to the National Cancer Center. If she is here on February 2, though, there is a fun bean throwing festival held at Shinto shrines and in homes around the country where people shouting "In with the good, out with the bad" throw dried beans and peanuts at a person wearing an ogre mask. My kids take turns playing ogre and we have a little ogre mask which is just the right size for Tiptoe to join in the fun. It my be more economical for her to travel light when she comes to Japan though.
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11/2004 partial masectomy (clear margins) - ER/PR++ HER+++
12/2004 Tamoxifen
11/2005 Clavicle & neck lymph nodes mets
30 Days rads, 7 months CEF-T Chemo
6/2006 mid chemo lung mets oral toremifene
10/2006 changed hospitals
12/2006 Tamoxifen and monthly Zoladex
2/2007 Dramatic growth of mets! Stopped Tamoxifen and Zoladex
3/2007 Began weekly Herceptin
6/2007 Added weekly Taxol to regime
4/2008 More lung mets - stopped Taxol
5/2008 Xeloda - 3 weeks on 1 week off
8/2008 Got a port!
9/2008 Stopped Xeloda, started weekly Navelbine
12/2008 Tumor progression, stopped Navelbine
1/2009 Taxotere begins again, once in every three weekly Herceptin IVs
3/2009 Added Zometa pelvic bone met, lung tumors progressing, stopped Taxotere/Herceptin
4/10/2009 Whoa seizure! 6cm&3cm brain mets. craniotomy and gamma knife surgery 5/15/2009 Started
Adria/Cyto stopped 9/15 due to progession. Brain mets back 10/28 surgery more gamma soon
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Old 10-13-2007, 07:41 AM   #16
Marlys
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Boise can host her any time. We have lots of things here I am sure she will enjoy. My meeting is an open one so anyone can attend. My group is so looking forward to her visit. And I will take her to all the secret places we have around here that we don't want anyone to know about. Boise and Idaho are growing too fast and some of its secrets are becoming too well known. (I am not referring to our infamous senator's restroom dancing techniques.)
Anyway, Marie, fit me into the itinerary as you see fit.
Love & hugs,
Marlys
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Old 10-13-2007, 07:44 AM   #17
PinkGirl
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Talking traveling light

This is something to consider. Right now she is traveling with a journal, passport and a few personal items. As the journal fills, she will need a
new one. When she goes to Europe, Asia, and Australia, she could leave her
journals behind - but then her guests won't get to read about her travels.
Any ideas? Does anyone know how to do all of this on a disk? (Not you Andi)
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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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Old 10-13-2007, 07:58 AM   #18
Becky
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If she has a hand written and bound diary and you don't mind razoring the pages apart, the pages could be scanned. The scanned pages could be saved as a word document. Then the whole mess can be saved on a stick. The stick can travel with Tip. We could post how to use the stick to read it AND to add to the adventure.

I have a scanner and a stick is just a few dollars (stick is less than 2 inches long, 1/4 in wide and an 1/8 in deep - isn't technology wonderful!). With enough gigs, the pictures can be stored on the stick too. How many pages is the journal? If you don't want to razor the journal apart (and I wouldn't blame you if you didn't), someone could copy the pages one by one. Someone or I could scan and download onto the memory stick.

Someone else may have a better idea. I am only throwing the stick idea out there because obviously, everyone Tip is visiting has a computer or else they wouldn't be in our online group.
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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 10-13-2007, 07:58 AM   #19
fauxgypsy
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Posts: 600
Tiptoe is always welcome in Mississippi. The weather is great here right now. If we wait until she's been to Europe she may be too uptown for us. Maybe when she's here a few of us Mississippi girls could get together and give her a party and celebrate her geeting her portrait painted. What do you say, let me see, there's Kat in the Delta and I think Soccer mom is from near Jackson, I may have the name wrong. Let me hear from y'all!

Leslie
__________________
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Jan. 26- mammogram and ultrasound- suspicious lump
Mid-February- lumpectomy, infiltrating ductal carcinoma ~4.5 cm and a 1 cm DCIS, did not get clear margins, did not check lymph nodes
ER+/PR+, her2 +++, nuclear grade 3 of 3
February 20-PET scan showed something on liver. No biopsy.
March- Started carboplatin, herceptin, taxol on a four week cycle
May 3- Pet scan, with intent to do a biopsy, found nothing, liver or breast- no biopsy because there is nothing to biopsy
June 21- new onc, very concerned that there had been no biopsy,
June 18th-CAT scan, bone scan-negative
August 7th - Brain MRI-negative
August 9th- mastectomy, all pathology negative
January 2008 still NED! New oncologist -herceptin for full year after chemo- until July, and tamoxifen---negative scans since May '07
July 2008-Finished Herceptin!
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Old 10-13-2007, 08:58 AM   #20
PinkGirl
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Talking scanning Tip

That's what I was thinking about Becky but I don't know anything about "sticks". I don't have a problem with razoring the pages out
of her journal. I don't know the # of pages in the book, but I think
I filled maybe 10 of them with pictures and entries. It won't take long
before it is full. Maybe we can decide on that once the first journal is
complete. Maybe we could always send one journal with her and the
"stick" for the old ones ?? Hmmmm.... Tip is getting complicated. We'll
work something out.

I meant the subject to be Scanning Tiptoe, not a scanning tip.
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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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