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03-10-2007, 01:20 PM
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#1
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Senior Member
Join Date: Feb 2005
Location: Norridgewock, Maine
Posts: 778
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Survey!
I found this on another board and they said to share it so that is what I am doing. It is cognitive changes related to cancer treatments in other words chemo brain. I thought it was worth doing. You should be able to access it through hurricanevoices.org/survey. Hugs, Sandy
__________________
Dx. 03/01, Rt. IBC
AC/Taxatere
Rt. MRM-with graft Lt. simple
5 rads-skin mets
Herceptin, taxol, carboplatin (taxol seem to be the magic drug)
Navelbine & xeloda (did not work)
topical miltex for skin mets
Tykerb/xeloda
thoracentesis x 2 left lung fluid shows cancer cells
Port removal (4 years) with power port replacement
Doxil
Updated 05-07 Scans show no bone or organ involvement we shall see!
I shall not pass this way again. Any good I can do or any kindness that I can show let me not defer or neglect it for I shall not pass this way again.
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03-10-2007, 06:34 PM
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#2
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Senior Member
Join Date: Apr 2006
Location: MS Delta in Clarksdale="Home of the Blues" (near Memphis,TN)by Misssissippi River/levee's highest pt.
Posts: 224
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kat in the delta
Sandy,
I spent a lot of time filling out information on the form this link led to, and then it would NOT even go through !!! Do you know WHY ??? LET ME KNOW asap. I just sent an e-mailed to: info@hurricancevoices.org. kat in the delta
(so frustrating!!,,DID you fill out the form, too?? if so, what was YOUR result after submitting it????????...curious,...kat)
Last edited by kat in the delta; 03-10-2007 at 06:38 PM..
Reason: left out
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03-10-2007, 07:12 PM
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#3
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Senior Member
Join Date: Feb 2005
Location: Norridgewock, Maine
Posts: 778
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Sorry!
I am sorry you had a problem. I did it and spent plenty of time filling it out and it went through fine. Maybe, you can try it again. I don't know why it should not go through. I too get frustrated when I fill something out only to find out it will not go through. I will be interested to see if others have the same problem. I think you did the right thing in sending them a letter. hugs, Sandy
__________________
Dx. 03/01, Rt. IBC
AC/Taxatere
Rt. MRM-with graft Lt. simple
5 rads-skin mets
Herceptin, taxol, carboplatin (taxol seem to be the magic drug)
Navelbine & xeloda (did not work)
topical miltex for skin mets
Tykerb/xeloda
thoracentesis x 2 left lung fluid shows cancer cells
Port removal (4 years) with power port replacement
Doxil
Updated 05-07 Scans show no bone or organ involvement we shall see!
I shall not pass this way again. Any good I can do or any kindness that I can show let me not defer or neglect it for I shall not pass this way again.
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03-11-2007, 12:36 AM
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#4
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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I was able to submit without a problem.
________
hairy Webcams
Last edited by sassy; 08-22-2011 at 09:11 AM..
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03-11-2007, 08:43 AM
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#5
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Senior Member
Join Date: Feb 2007
Posts: 108
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I had no problem submitting....but plenty of problems coming up with the words I wanted to discribe what I am dealing with!!! I guess that is the point, huh?
Thanks so much for forwarding this. Chemo-brain is the worst part of this for me!!!!!!!!!!!! And no one seems to want to address it. But who can blame them? I could not have understood what it was like before it happened...and now I can't put the words together to discribe it....
__________________
Age 50, premenopausal
Dx 1/2/07 DCIS/IDC
Lumpectomy 1/4/07 1.1cm tumor
SNB 3 nodes clear
Stage 1, Grade 2, HER2+++ (FISH 6.8)
ER + / PR +
TCH, 6 rounds, finished 6/1/07!!!
Herceptin to continue for 1 year
36 rads finished 8/22/07
Port out 8/27/07
Switched to Herceptin weekly for joint pain
Ooph 11/13/07
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03-11-2007, 12:02 PM
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#6
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Senior Member
Join Date: Feb 2005
Location: Norridgewock, Maine
Posts: 778
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I thought it was worth doing as I know for me its a big problem. I hope there will be more that will fill it out. Just another thing we have to live with. hugs, Sandy
__________________
Dx. 03/01, Rt. IBC
AC/Taxatere
Rt. MRM-with graft Lt. simple
5 rads-skin mets
Herceptin, taxol, carboplatin (taxol seem to be the magic drug)
Navelbine & xeloda (did not work)
topical miltex for skin mets
Tykerb/xeloda
thoracentesis x 2 left lung fluid shows cancer cells
Port removal (4 years) with power port replacement
Doxil
Updated 05-07 Scans show no bone or organ involvement we shall see!
I shall not pass this way again. Any good I can do or any kindness that I can show let me not defer or neglect it for I shall not pass this way again.
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03-11-2007, 03:17 PM
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#7
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Senior Member
Join Date: Apr 2006
Location: MS Delta in Clarksdale="Home of the Blues" (near Memphis,TN)by Misssissippi River/levee's highest pt.
Posts: 224
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kat in the delta
I tried to send it last night 2 times and it failed --but,HIP.HIP,HOORAY!!!-- today it just went through fine......Let me know if anyone of you hear the results....Do you know when that will be??????? Kat in the Delta
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03-11-2007, 09:14 PM
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#8
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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I had no problems in submitting the survery -- just problems in trying to put down what I wanted to say!
__________________
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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03-11-2007, 09:22 PM
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#9
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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It worked fine for me too. No problems at all. I know how frustrating that is to fill out something only to have it disappear to the twilight zone. I am so sorry that happened Kat...but glad you finally got it to work for you.
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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03-12-2007, 09:51 AM
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#10
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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thanks Sandy! sometimes my 'security' settings for my computer won't let me do certain things but I had no trouble submitting this survey!
__________________
 Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year
as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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03-12-2007, 10:57 AM
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#11
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Senior Member
Join Date: Oct 2005
Location: TN
Posts: 84
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Mine went through perfectly. I was and still am very worried, as i don't think my memory is getting better!
__________________
3/2003-Dx'd Stage 4 Her 2+++
"Life is not measured by the number of breaths we take, but by the moments that take our breath away."
Dum spiro spero (Latin: while I breathe I hope)
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