| Keeping Your Mind Off of BC Fun things and posts that do not apply to BC |
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01-22-2008, 05:24 PM
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#1
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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TIPTOE's 2008 Visit Schedule
Sorry, everyone, I have been knocked off the planet with a terrific gastro-intestinal flu that is going around. Not the way I wanted to lose 5 pounds in 4 days!!
From the responses to my last post on this subject we have the beginnings of a continued itinerary. Chrisy PMed me that both Marlys and Catherine has send their addresses, so I guess we can stay close to old schedule with Marlys being next.
Up to now:
Pink Girl - 9/24/07 - 9/29/07
Andi 10/9/07 - ???
Believe Marie & Ed ??? - ???
Becky 10/30/07 - 11/5/07
FauxGypsy 11/7/07 - ???
Kate 11/17/07 - ???
Riniana ??? - 12/14/07
Brenda 12/16/07 - 01/02/08
Sheila 01/03/08 -
Chrisy
We need a couple of ground rules on length of stay and transit time. No one should have to FedEx overnight to stay on schedule. Let me know if you agree with these:
1. 10-day maximum stay with a 4-day transit time = 2 weeks. They get 2 visits a month that way and not so rushed and there is a bit of wiggle room.
2. Exception to #1 is special need or special event to stay over for - but only a couple of days.
3. List below is flexible but we should try to stay "regional" for 2 or 3 visits.
4. Anyone I have missed from all the previous posts just chime in here and the list will update.
NEW LIST:
1. Jan 23-24 - from Chrisy to MARLYS (Idaho)
(Marlys can have for Valentine's so they won't be in transit - but off they go!)
2. Feb 15 - from Marlys to LAURIE(Ohio - for her end of treatment party)
3. End Feb to 10 March - Laurie to JONES (Mich.)
4. Mid March to 25 Mar - Jones to ??
5. Early to Mid April - ?? to STEPHN (Washington)
6. Mid April - Steph to ???
Mid April - early May - someone back east or midwest?
7. Early to mid May - HAZELJOYCE (Mass. - for her end of treatment shindig)
From here we have interest from:
JONES/Barb in Christmas, Mich.
StillHere in Wisconsin (she wanted Tiptoe for the spa trip)
Flori in Cal
Kathy in Tokyo
MaryAnne in Texas?
harrie from Hilo, AbbyDawg, Karen W from N. Calif., Lilyecuardorian, and MJo in Delaware
Tricia in Ireland (willl require MORE transit time and tracking)
I know there are more of you, hands up.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.
MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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01-22-2008, 07:48 PM
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#2
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Senior Member
Join Date: Jan 2007
Location: Massachusetts
Posts: 82
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I'd love to have them accompany me to my last Herceptin infusion (mid-May) if they can be here at that time!
__________________
IDC Stage IIIA
Diagnosed Nov 2006 (routine mammogram), age 51
Lumpectomy, lymph node dissection Dec 2006
3 cm tumor, 8 cancerous lymph nodes
Grade 3, ER/PR -, HER-2/neu +++ (by FISH, average 20 copies per cell)
A/C x 4, Taxol x 12, Herceptin x 47 weeks
35 radiation treatments
Completed treatment on April 3, 2008
Chest port removed October 2009
11 years since diagnosis NED
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01-23-2008, 11:01 AM
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#3
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Hi Hazel -
I think your timing for finishing Herceptin will work.
Just need to find someone else in between who will then get them to you.
Do you have your treatment day yet? I am sure all the infusion staff will make a big deal for you and it will be a great day to start the rest of your life.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.
MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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01-23-2008, 11:33 AM
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#4
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Senior Member
Join Date: Jul 2007
Location: Canada
Posts: 2,193
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Hi StephN
I'm glad you are feeling better - I am jealous
of the 5 pounds even if it was flu-related!
Thanks for working on the kids' schedule.
We all appreciate you taking the time to
do this.
__________________
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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01-23-2008, 02:40 PM
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#5
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Senior Member
Join Date: Jan 2007
Location: Massachusetts
Posts: 82
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My last treatment should be on May 15.
__________________
IDC Stage IIIA
Diagnosed Nov 2006 (routine mammogram), age 51
Lumpectomy, lymph node dissection Dec 2006
3 cm tumor, 8 cancerous lymph nodes
Grade 3, ER/PR -, HER-2/neu +++ (by FISH, average 20 copies per cell)
A/C x 4, Taxol x 12, Herceptin x 47 weeks
35 radiation treatments
Completed treatment on April 3, 2008
Chest port removed October 2009
11 years since diagnosis NED
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01-23-2008, 03:54 PM
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#6
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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They are packing their little bags as we speak! Although if they continue accumulating souvenirs at the current rate, they soon will be spending the whole 10 days packing and unpacking! Marlys, they will be on their way tommorrow. It's been chilly here (there was even a dusting of snow!) so they should be prepared for winter there.
I would suggest that whoever is next on the list be good enough to send your address info like Marlys (and Catherine) did. That way we won't lose time trying to get their transit info!
__________________
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
Last edited by chrisy; 01-23-2008 at 03:56 PM..
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01-23-2008, 09:15 PM
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#7
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Senior Member
Join Date: Oct 2006
Location: I live in Christmas, MI - located on the shores of Lake Superior.
Posts: 606
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Please add me to the schedule wherever I would fit in well. Thanks for working on the schedule.
__________________
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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01-23-2008, 09:56 PM
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#8
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Steph, I'm glad to see you back, was wondering about the "sabbatical"; does not sound like it was any fun. We've had Norovirus in the Willamette Valley, but so far I've managed to avoid it.
About the Tip and Tex schedule, I'm sorry to put a wrench in the works, but Catherine and I think we'll take ourselves off the itinerary. I posted on an earlier thread but you must not have seen it.
So they can go from Laurie to you 
Glad you're feeling better!
<3 Lolly
__________________
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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01-23-2008, 10:55 PM
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#9
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Tip and Tex are STILL packing!!!! I'm sure they'll be done soon, and also that they will post some info about their visit here. They are not very organized, which means they fit right in around my house!
They seem to have too much stuff - I guess I can relate to them on more levels than I thought!!!! I took a picture of them trying to get started on the packing...
__________________
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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01-24-2008, 12:43 AM
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#10
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Senior Member
Join Date: Oct 2005
Location: Boise, Idaho
Posts: 758
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Chrisy,
I am so excited I could pop but I will try to contain myself. Generally speaking Boise has a banana belt climate but that is not holding true this year. We have had a fair amount of snow (more than in the past few years) however it has been as cold "as a well digger's a$$ in Idaho" the past few days. Hopefully it will warm up some for the twosome's visit. I have arranged for some Sober Riders to take them for a tour and my oncology crew is eager to meet them. I will be sure that Tiptoe gets to a meeting, however I am beginning to feel like she is probably not an alcoholic since her last few hostesses have not indicated that she over imbibed while with them. Maybe Tex has been a good influence in her life.
Love & hugs,
Marlys
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01-25-2008, 07:46 AM
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#11
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Senior Member
Join Date: Jul 2007
Location: Canada
Posts: 2,193
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Chrisy
What is all that stuff on your bed?
When Tiptoe arrived from China, all she had was her journal
and passport.
When she left my place she was wearing her new blue studs
and her pink hair extension. All I put into her box was a small
tube of sunscreen, small dental floss, some peanuts and a pink
pen that got left behind in Boca.
What is all that stuff??????????
__________________
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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01-25-2008, 08:45 AM
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#12
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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OH PINK GIRL
You just wait till Tip and Tex return...you will need to build on an addition to give them and their stuff some space...they have outfits, cotton, outfits, Her2Support Pins, bracelets, too much to mention!!!!!!
And their log book is filling fast! Oh boy, just wait till they return Home....
__________________
"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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01-25-2008, 10:41 AM
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#13
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Senior Member
Join Date: Dec 2006
Location: Oregon
Posts: 715
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Souveniers
Pinkie,
Of course after all this traveling, Tiptoe has picked up a lot of souveniers. Tex probably travels light....just his razor. If Tiptoe is like me, she also has jars of lotions and lots of makeup. Thank goodness she is not flying, because then she would have to deal with that TSA 3oz thing. Good luck with the packing, Chrissy.
Catherine
__________________
Catherine
Found my own lump in the shower
April 2006 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 2.3cm
Chemo first: AC/Taxol over 16 weeks
Bilateral mastectomy Sep 06
33 rads after the surgery
1 year of Herceptin completed Dec 07
15 years and no recurrence as of April 2021
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01-30-2008, 12:28 PM
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#14
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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All 50 states
Would be wonderful if we can get visits in ALL 50 states! So far they are scheduled to visit their 13th - so we ARE making progress. They may need an addendum for their passports.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.
MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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02-12-2008, 06:57 PM
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#15
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Anyone Else?
Bringing this up for anyone else who would like a visit from our "itinerant healers."
We have three spaces till May when they go to Massachusetts.
I need to add in Lily as she expressed interest - she gets her choice.
2. Feb 15 - from Marlys to LAURIE(Ohio - for her end of treatment party)
3. End Feb to 10 March - Laurie to JONES (Mich.)
4. Mid March to 25 Mar - Jones to ??
5. Early to Mid April - ?? to STEPHN (Washington)
6. Mid April - early May - someone back east or midwest?
7. Early to mid May - HAZELJOYCE (Mass. - for her end of treatment shindig on May 15th)
8. End of May to June 1st - ??
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.
MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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02-13-2008, 12:54 PM
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#16
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Senior Member
Join Date: Mar 2007
Location: CHARLOTTE NC USA
Home town (ECUADOR) South America
Posts: 542
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Yes I want TIP .........to who I send my address ? and what I need to do????
__________________
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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02-13-2008, 04:26 PM
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#17
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Senior Member
Join Date: Oct 2005
Location: LAND OF YES!
w/home in Boca Raton, Florida
Orig from L.I., N.Y.
Ever hovering IN THE NOW...
Posts: 1,904
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FOR THE RECORD -- Tiptoe was here in Boca from 10/9 - 10/16, at which time I sent her to Marie. I sent Tip PRIORITY MAIL, of course, w/a tracking # -- I was so worried about her traveling midst all the mail from Fla to R. I. She was received by Believe in East Warwick 10/18.
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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02-13-2008, 06:29 PM
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#18
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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I think spring would be a great time for Tip and Tex to visit the beaches of South Texas! I could take them to the aquarium and the Lexington and introduce them to some dolphin friends! I wonder if they'd like a day of sailing? We could do that too! Slip me into the schedule where it works best! ma
__________________
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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02-14-2008, 11:52 AM
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#19
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Revised through mid-May
Here is a revised schedule including Lily and MaryAnne.
Marlys should have them off to Laurie now.
Lily, all you have to do is to send your address to Jones (Barb) and she will get them to you. At the end of your 10 or so days, you send them to me (I will get you my address).
2. Feb 15 - from Marlys to LAURIE(Ohio - for her end of treatment party)
3. End Feb to 10 March - Laurie to JONES (Mich.)
4. Mid March to 25 Mar - Jones to LILY (N. Carolina)
5. Early to Mid April - Lily to STEPHN (Washington)
6. Mid April - early May - StephN to MARY ANNE in TX
7. Early to mid May - Mary Anne to HAZELJOYCE (Mass. - for her end of treatment shindig on May 15th)
8. End of May to June 1st - ??
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.
MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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02-16-2008, 05:04 PM
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#20
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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I'd love to have them visit any time, just let me know when they have an opening. Lots of things to do in southwest Virginia!
__________________
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.......
14 YEARS NED!
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