HonCode

Go Back   HER2 Support Group Forums > her2group
Register Gallery FAQ Members List Calendar Search Today's Posts Mark Forums Read

Reply
 
Thread Tools Display Modes
Old 09-06-2007, 04:12 PM   #61
StillHere
Senior Member
 
StillHere's Avatar
 
Join Date: Mar 2007
Location: Greendale, WI just outside Milwaukee
Posts: 211
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.
StillHere is offline   Reply With Quote
Old 09-06-2007, 04:42 PM   #62
Donna
Senior Member
 
Donna's Avatar
 
Join Date: Jul 2006
Location: Shingle Springs, CA - near Sacramento
Posts: 295
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
Donna is offline   Reply With Quote
Old 09-06-2007, 11:04 PM   #63
Donna
Senior Member
 
Donna's Avatar
 
Join Date: Jul 2006
Location: Shingle Springs, CA - near Sacramento
Posts: 295
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
Donna is offline   Reply With Quote
Old 09-07-2007, 03:19 AM   #64
madubois63
Senior Member
 
madubois63's Avatar
 
Join Date: Feb 2005
Location: LI, NY
Posts: 660
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
madubois63 is offline   Reply With Quote
Old 09-07-2007, 05:25 AM   #65
StillHere
Senior Member
 
StillHere's Avatar
 
Join Date: Mar 2007
Location: Greendale, WI just outside Milwaukee
Posts: 211
Smile What dates would you be available

OK Gals,
Who could make it Jan 2,3,4
Who could make it Jan 16, 17, 18
Who could make it Jan 23,24, 25

Who could make it on any of these dates?
Let's hear from you so we can get some firm dates and numbers. WE ARE GOING TO DO THIS! !
Can't Wait. Feel like a little kid going to Disneyland
__________________
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.
StillHere is offline   Reply With Quote
Old 09-07-2007, 07:46 AM   #66
sherri
Senior Member
 
Join Date: Sep 2005
Location: Vancouver, Canada
Posts: 329
I'm OK with all these 3 dates. And I'll be there. Can I come with my sister?
sherri is offline   Reply With Quote
Old 09-07-2007, 09:52 AM   #67
Donna
Senior Member
 
Donna's Avatar
 
Join Date: Jul 2006
Location: Shingle Springs, CA - near Sacramento
Posts: 295
The more attending the bigger the discount!

Hi Sherri,

Bring your whole family!

Donna
Donna is offline   Reply With Quote
Old 09-07-2007, 06:40 PM   #68
StillHere
Senior Member
 
StillHere's Avatar
 
Join Date: Mar 2007
Location: Greendale, WI just outside Milwaukee
Posts: 211
Where ever we go, I'm leaving hubby home for this outing. See separate thread named Miravel rates and info for details on this resort. I can make it on any of the listed dates.
__________________
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.
StillHere is offline   Reply With Quote
Old 09-07-2007, 10:27 PM   #69
Donna
Senior Member
 
Donna's Avatar
 
Join Date: Jul 2006
Location: Shingle Springs, CA - near Sacramento
Posts: 295
Las Vegas

Hi Karen and all,

this is the package at the Orleans ( a hotel we stay at frequently) without negotiating price breaks for the group - and we could see shows at night.

Off Peak Season (January, June, July, August, September):
$275 Single
$430 Double

Each Package Includes:
3 Days/2 Nights accommodations, including taxes
50 Minute Traditional Massage at Spa Orleans
25 Minute Custom Facial at Spa Orleans
Complimentary use of Fitness Center, Jacuzzi, Steamroom
$250 Value Added Fun Book (50% Off show discounts, drinks, food and more)

Still working on it - Donna
Donna is offline   Reply With Quote
Old 09-08-2007, 08:47 AM   #70
sherri
Senior Member
 
Join Date: Sep 2005
Location: Vancouver, Canada
Posts: 329
Maryann (Madubois) must be with us

I think we must setup a fund for Maryann as well, we can't go there without her.
sherri is offline   Reply With Quote
Old 09-08-2007, 10:13 AM   #71
hutchibk
Senior Member
 
hutchibk's Avatar
 
Join Date: Oct 2005
Posts: 3,519
I am open Jan 10-16 (and possibly until Jan 21). But as of Jan 16th or 21st, I will be heading to Phoenix anyway to work on a project for 2 weeks... hmmmmm. I will check and see what my actual start date is, I may be able to make something work out if it is Jan 16, 17, 18 timeframe... since I will already be heading to the neighborhood.
__________________
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."
hutchibk is offline   Reply With Quote
Old 09-09-2007, 08:09 AM   #72
StillHere
Senior Member
 
StillHere's Avatar
 
Join Date: Mar 2007
Location: Greendale, WI just outside Milwaukee
Posts: 211
Sherri, could you set up the fund for MaryAnn. I don't seem to elicit a very possitive response in the philanthropy dept. Thank you. Karen
__________________
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.
StillHere is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 06:11 AM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2024, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021
free webpage hit counter