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08-20-2007, 02:23 PM
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#1
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Senior Member
Join Date: Jun 2007
Location: RHODE ISLAND
(Ed getting me a latte on 2nd Cancerversary Cruise 2008)
'BELIEVE': To accept as true or real, To have faith in, To presume
ALWAYS BELIEVE
Posts: 2,999
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Getting excited!!
Let me know when, my boss is great. Haven't missed a chemo or appointment yet!! Keep us updated girls, I am getting excited!!>>Believe51
__________________
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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08-23-2007, 10:37 PM
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#2
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Senior Member
Join Date: Feb 2006
Posts: 1,014
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Let me know when and where and how much, I need a trip away somewhere far away..hhe...sherryg
__________________
Sherry
Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
8 years NED now
Scans every year
Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
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08-24-2007, 12:48 AM
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#3
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Senior Member
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
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Mauna Lani Resort, Big Island
My favorite spa (actually the only one I have been to) is on the Big Island where I live. It is at the Mauna Lani Resort and it is a fabulous spa.
If you go to: maunalani.com
you read about the resort and spa.
When I was last there I had a massage and pedicure. There are quite a selection of treatments available there.
Maryanne
__________________
*** MARYANNE *** aka HARRIECANARIE
1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen
2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy
2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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08-24-2007, 10:03 AM
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#4
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Senior Member
Join Date: Jan 2007
Location: Media (Wawa to be exact), PA
Posts: 104
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HARRIE
I see your picture on your posts, I was wondering the same thing.... I do not see my picture on my posts. How does the computer know when to use the picture?  Is it that we do not see our own picture?
Melinda
__________________
DX BC 12/06
tumor .9
Lumpectomy 1/8
Mammosite radiation completed 2/10
Stage1/Grade 1
clear Margins /Nodes Neg
ER+
IHC +2 Fish +
ONCO 23
Started TCH on 3/2 for 6 rounds of TC once every three weels and a year of Herceptin every 3 weeks -
Finished everything and now on Aromasin
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08-24-2007, 11:23 AM
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#5
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Melinda,
For your picture to show up on all your posts you have to put it on your avatar in addition to your profile picture. Go to UserCP and click edit avatar it will prompt to you add your picture.
__________________
Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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08-23-2007, 10:37 PM
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#6
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Senior Member
Join Date: Feb 2006
Posts: 1,014
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Ohhhh yea..Hawaii..sounds wonderful on this end..sherry
__________________
Sherry
Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
8 years NED now
Scans every year
Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
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08-23-2007, 11:06 PM
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#7
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Senior Member
Join Date: Feb 2006
Posts: 1,014
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Checked out the rates at Miravel and they are pretty prices, most rooms over a thousand a night., some are 1,600 to 1,700 a night...that's a little over my budget considering I'd also need airfare. Unless they were to give a big group rate discount. Heck we could fly to hawaii and stay in some beachside bungalow for less than that...Or maybe we should think about booking a cruise, those can be pretty cheap and we should be able to get special reates with numbers....sherry
__________________
Sherry
Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
8 years NED now
Scans every year
Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
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08-23-2007, 11:51 PM
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#8
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Don't know how I missed this...but count me in..and Jan/Feb sounds great...but coming from Illinois I hope its somewhere warm!
__________________
"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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08-26-2007, 10:47 AM
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#9
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Senior Member
Join Date: Jul 2006
Location: Shingle Springs, CA - near Sacramento
Posts: 295
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No word Yet
HI Amazing Group,
No word yet from the amazing spa in San Francisco. You would think that a promise of 20+ people would get a response!
I am all for a cruise - I will cruise anywhere anytime!
I will keep you posted on more spas - I am so busy right now that I don't have the time to devote to this search that I wish I did.
Love to you all!
Donna
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08-26-2007, 04:33 PM
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#10
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Deceased
Join Date: Mar 2006
Location: Virginia
Posts: 113
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Cruise
I hate to be the first one to object to a cruise but I am not comfortable at all about the thought of going on one. I worry to much about the illnesses that can be caught, especially for some of us with low blood counts and the crime. Call me a woosie if you want but I can't help it, lol. I would much prefer a spa resort. If I turn out to be the only one in objection of a cruise I would want all of you to go anyway and enjoy.
Thanks ladies,
Nicola
__________________
March 18, 2004, Age 36
Diagnosed: High Grade DCIS, Microcalcifications, Solid and Comedo type, Nuclear grade 3 with 1mm margins, ER+, PR+, Stage "0"
3-8-04 Left breast lumpectomy.
4-1-04 thru 6-24-04 Adjuvant XRT.
11-29-05 Gallbladder attack.
12-01-05 Surgery to have gallbladder removed, discovered cancer spread throughout liver in both lobes, HER2+ amplified by FISH and interestingly enough negative for ER and PR.
12-9-05 Clinical trial consisting of Tykerb, Taxol and Herceptin along with Zometa once a month. On clinical trial for 15 months before liver mets started progressing. Started on Navelbine 3-9-07. Navelbine failed, switched to Gemzar July 07. MRI of the brain on July 7, 07. Results revealed multiple brain tumors. Taken off of Gemzar immediately and began 15 rounds of WBR which I completed on July 26, 07. CT scan on 7-26-07 significant progression in the liver mets. I am now getting ready to start on Xeloda along with Herceptin and Zometa once a month.
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08-28-2007, 05:20 PM
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#11
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Senior Member
Join Date: Sep 2005
Location: Vancouver, Canada
Posts: 329
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I can't for Cruise like Nicola. I went once and after the first day I knew that would be the last. I took medication but I was sick the whole time, lost 12lbs in 7 days, it was good for WL!
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08-30-2007, 02:51 PM
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#12
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Senior Member
Join Date: Mar 2007
Location: Greendale, WI
just outside Milwaukee
Posts: 211
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Miraval update- Mr. Sim called me and said that he would talk to his Vice-Pres and try to get us the best rates possible for Wed/Thurs/Fri, Jan 2/3/4. Jan and Feb are of course High Season, but he felt he could give deeper discounts on the dates listed above. He will email me quotes for both single and double occupancy by Wed. 9/5. He will also let me know how many rooms would be available for those dates. He knows we have approximately 20 women who are interested if we can afford the trip.
__________________
04/05 Onset 49, DCIS, solid, Hist 2/3, Nucl 2/3, 7cm R Brst
04/05 E & P + HER2+++
05/05 Mediport
05/05 Cytoxan & Adriamycin every 3wk x4
08/05 Taxol every 2wk x 4, Herceptin every wk x1yr
10/05 Bilat Mast - my Choice
10/05 3/19 lymph nodes Pos, Stage IIIa
11/05 Rad x 37 Rx, R Brst & Axcilla
02/06 Herceptin stopped (L vent HF 40)
03/06 Started & Stoped Arimidex after 2 mos.-QOL side effects
05/06 Started Tamoxafin
06/06 Bilat Free Flap Reconstruction
12/06 Cardiomyopathy reversed-HF normal
01/07 Bilat Saline Implants
07/07 CA 27-29 steadily rising from 28 in 12/06 to 46 in 7/07
07/07 PET Scan NED, but inflamation at prev surg site.
09/07 Started Femara
10/07 CA 27-29 down to 39
06/08 CA 27-29 down to 32
09/08 Lg joint pain & QOL side effects from Femara, will live w/ to keep CA markers within normal range.
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08-30-2007, 03:35 PM
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#13
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Thanks for working to make this happen for us! 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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08-30-2007, 07:43 PM
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#14
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Member
Join Date: Mar 2007
Posts: 19
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Yes, thank you for working on this. I hope that I can go if it all works out.
Cheryl
__________________
Cheryl Hamilton
DX 2/6/07
LB Mastectomy 2/12/07
3 out of 9 Lymph nodes +
4 AC DD completed
12 Weekly Taxol/Herceptin completed 7/07
Herceptin completed 5/08
33 radiations completed 9/07
Tissue expander placed 7/08
Tram Flap scheduled 12/15/08
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08-30-2007, 08:53 PM
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#15
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Senior Member
Join Date: Jan 2007
Location: Media (Wawa to be exact), PA
Posts: 104
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Thank you for spearheading this. I too am anxious to hear what Miraval can do for us.... I look forward to a hot stone massage or even a yoga class.... and lets not forget the many toasts we can make, celebrating our get together. I look forward to meeting some sisters from this board!
Melinda
__________________
DX BC 12/06
tumor .9
Lumpectomy 1/8
Mammosite radiation completed 2/10
Stage1/Grade 1
clear Margins /Nodes Neg
ER+
IHC +2 Fish +
ONCO 23
Started TCH on 3/2 for 6 rounds of TC once every three weels and a year of Herceptin every 3 weeks -
Finished everything and now on Aromasin
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08-30-2007, 10:51 PM
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#16
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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No news yet from here, but I will put out more feelers tomorrow....
I won't be available until after Jan 10... Oh well. Don't hold anything up because of me. And I don't know how I feel about a cruise. Hmmmm.
__________________
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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09-06-2007, 04:12 PM
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#17
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Senior Member
Join Date: Mar 2007
Location: Greendale, WI
just outside Milwaukee
Posts: 211
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No news from Miraval yet
Mr. Sim has not emailed me. Roadrunner was down for a period yesterday, but seems fine today and I have not received an email w/ rates yet. I will leave a voice mail on his phone tonight and will try to call him from work tomorrow if it does not get too crazy there.
I think we should rule out the cruise due to a few this would exclude.
I never thought it would take this long just to get rates for the SPA's. I'll keep at it on my end. Donna and Brenda please keep trying your contacts also. Thanks Everyone!
__________________
04/05 Onset 49, DCIS, solid, Hist 2/3, Nucl 2/3, 7cm R Brst
04/05 E & P + HER2+++
05/05 Mediport
05/05 Cytoxan & Adriamycin every 3wk x4
08/05 Taxol every 2wk x 4, Herceptin every wk x1yr
10/05 Bilat Mast - my Choice
10/05 3/19 lymph nodes Pos, Stage IIIa
11/05 Rad x 37 Rx, R Brst & Axcilla
02/06 Herceptin stopped (L vent HF 40)
03/06 Started & Stoped Arimidex after 2 mos.-QOL side effects
05/06 Started Tamoxafin
06/06 Bilat Free Flap Reconstruction
12/06 Cardiomyopathy reversed-HF normal
01/07 Bilat Saline Implants
07/07 CA 27-29 steadily rising from 28 in 12/06 to 46 in 7/07
07/07 PET Scan NED, but inflamation at prev surg site.
09/07 Started Femara
10/07 CA 27-29 down to 39
06/08 CA 27-29 down to 32
09/08 Lg joint pain & QOL side effects from Femara, will live w/ to keep CA markers within normal range.
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09-06-2007, 04:42 PM
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#18
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Senior Member
Join Date: Jul 2006
Location: Shingle Springs, CA - near Sacramento
Posts: 295
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don't give up on this!
Hi Amazing Group,
I just emailed every spa in Las Vegas - let's see if any of them come up with something for us!
I'll start hitting spas in California this weekend.
Love to you all,
Donna
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09-06-2007, 11:04 PM
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#19
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Senior Member
Join Date: Jul 2006
Location: Shingle Springs, CA - near Sacramento
Posts: 295
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we need more information
Hi Amazing Group,
I received replies from 3 spas already - but what they are asking for are what dates we want and how many are we. They are all saying they will give us discounts on spa rates and rooms. We need to take a head count with a calendar so we can have more clout in negotiating rates.
Can you email me with when you CAN'T GO in Jan-Mar of 2008 - probably easier to list when you cannot attend, then we can pick the optimum time.
Thanks!
Donna
email is milliron@innercite.com |
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09-07-2007, 03:19 AM
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#20
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Senior Member
Join Date: Feb 2005
Location: LI, NY
Posts: 660
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I'd love to join in, but finances are just not available. If it were East coast, I could drive...
Just a suggestion for those in desperate need of a massage: Many schools offer free or very low cost massages and services to cancer patients. I have a spa that closes it's doors once a month and only opens up for cancer patients. Last month I got a hair cut (yup!) and a facial. This month I am sheduled for a massage and pedicure. The 2 sister's that own the place lost thier mom to lung cancer. Before my friend Maryann died this past spring, they even went to her house to massage and groom her. I found the place by word of mouth, but some places put flyers out at cancer centers or run adds in those little holistic newspapers. I found art, yoga, ti chi, reiki and other classes all free to cancer patients. Oh, I also found a local group that paid to have my house cleaned 10 times during treatments. You can contact CancerCare or The American Cancer Society too. They may be able to help find things, but I mostly read the little local papers and search on line.
__________________
Maryann
Stage IV Inflammatory BC 1/00
Mod Rad Mastectomy 24nod/5+
Adriomycin Cytoxin Taxol
Tamoxifen 4 1/2 yrs
Radiation - 32 x
Metastatic BC lung/liver 10/04
thorocentesis 2x - pleurodesis
Herceptin Taxatiere Carbo
Femera/Lupron
BC NED 4/05
chemo induced Acute Myeloid Leukemia 5/06
Induction/consolidation chemo
bone marrow transplant - 11/3/06
Severe Host vs Graft Disease of liver
BC mets to lung 11/07
Fasoladex Herceptin Zometa Xeloda
GVHD/Iron overload to liver
Avascular Necrosis/morphine pump 10/10
metastatic brain tumor
steriotactic radiosurgery
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