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03-27-2006, 03:37 AM
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#1
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Senior Member
Join Date: Sep 2005
Location: Melbourne Victoria
Australia
Posts: 330
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5 year survivor today
Hi everyone
It is 5 years today since I found my first lump...second was in August last year. I am currently in remission but lately have had a twitchy left eye lid and also a couple of heat sensations in my left heel..anyone else had these symptoms?
Regards
Jackie
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03-27-2006, 03:49 AM
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#2
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Senior Member
Join Date: Oct 2005
Location: Sydney Australia
Posts: 105
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Congratulations Jackie. i have been on Herceptin 15 months now, and found that my eye twitched a lot for the first 6-9 months, but seems to have got better now.
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03-27-2006, 07:16 AM
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#3
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Senior Member
Join Date: Sep 2005
Location: Raleigh, NC
Posts: 148
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Yay, Jackie!! Now to add many more years NED to that 5.
I have the eye twitch as well on Herceptin only. Other muscles will go on a twitching rampage at times too. I can't address the heel heat since my hot flashes burn me from one end to the other!
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03-27-2006, 10:35 AM
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#4
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Jackie,
Big Congratulations on 5 years!
God Bless!
Jean
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03-27-2006, 12:16 PM
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#5
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Jackie
WAY TO GO...AND KEEP ON GOING!!!!!!!!!!!!!
__________________
"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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03-27-2006, 12:27 PM
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#6
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Senior Member
Join Date: Sep 2005
Location: St. George, UT
Posts: 582
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That's an important milestone, Jackie! Congratulations, and keep on expecting the best! Hugs, Tricia
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03-27-2006, 01:07 PM
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#7
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Deceased
Join Date: Oct 2005
Location: Chadds Ford, Pa
Posts: 206
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Hi Jackie,
First of all, congratulations on a big milestone! I love to hear about women like you. You go girl!!
I just finished 6 months of chemo in combo with herceptin. I was getting herceptin weekly. Just got my first 3 week dose of herceptin on Tuesday and my eye is twitching like mad. (Of course, I think it's a brain met!!). I can live with it, but it's annoying. I'm just glad to hear it's not only me. I will mention it to my onc tomorrow. Never read about "eye twitches" in any of the side effect literature for herceptin.
Donna
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03-27-2006, 02:09 PM
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#8
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Senior Member
Join Date: Feb 2005
Location: LI, NY
Posts: 660
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Congratulations on your anniversary!!!!
..·´¨¨)) -:¦:-
¸.·´ .·´¨¨)) -:¦:-
((¸¸.·´ ¸.·´ -:¦:- -:¦:-
-:¦:- ((¸¸.Maryann -:¦:-´´
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03-27-2006, 02:22 PM
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#9
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Senior Member
Join Date: Dec 2005
Location: Illinois
Posts: 327
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Wow how weird is that? I get the twitchy eyes (even to the point it's hard to read) and my right heel bothered me a lot. I kept telling the onc I wanted a brain MRI, he gave me one and nothing showed up.
Then I told him about the heel, and he said it was very unlikely that a tumor would be there even though I had a tumor in my right femur. Go figure? The heel still acts up, but since I bought a cushion for my heel, it's been much better.
That's just weird how we both have those 2 complaints. I think I'm going to blame it on the Herceptin.
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03-27-2006, 04:48 PM
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#10
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Senior Member
Join Date: Sep 2005
Location: melbourne, australia
Posts: 267
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Great news Jackie.
I also get the odd eye twitch.
I sent you a reply ages ago. Did you ever get it? I have mucked up private messages before!
Christine
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03-27-2006, 05:25 PM
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#11
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Congratulations Jackie, your membership in the long-term survivors club is now official 
I have eye twitches off and on also.
<3 Lolly |
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03-27-2006, 06:58 PM
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#12
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Senior Member
Join Date: Mar 2006
Posts: 78
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Hi Jackie,
Your 5-year anniversary is very encouraging for all of us! I just started having left eye twitches for the last few days after receiving my 4th Herceptin tx. I've been off chemo for over a year, so if it's drug related, it's probably the Herceptin. It doesn't last very long peri incident so not annoying yet.
G.Ann
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03-29-2006, 07:33 AM
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#13
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Senior Member
Join Date: Jan 2006
Posts: 58
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Congratulations on this anniversary!
I hope you have many. many more! You give us all hope!
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03-29-2006, 08:11 AM
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#14
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Senior Member
Join Date: Mar 2006
Location: Northern Va
Posts: 84
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Congratulations!
Eye twitching - I will throw a wrench in this one. After my last Taxotere treatment, two weeks ago, my right eye started twitching. I figured it was the build up of the taxotere. Just had my load dose of Herceptin yesterday, I will see if the twitching continues or not.
Congratulations!! again!! Here is for a long, long, happy life!
__________________
Cheryl
Stage II, Grade III, ER+/PR-, Her2 3.0 amplified, N 0/5, dx 9/05, 39 yrs
Right Mastectomy, immediate tram flap reconstruction
4 AC, 4 Taxotere finished 3/15/06
Currently on Herceptin and Tamoxifen
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04-19-2006, 02:31 AM
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#15
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Senior Member
Join Date: Sep 2005
Location: Melbourne Victoria
Australia
Posts: 330
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Congrats Jackie.h.
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04-19-2006, 03:37 AM
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#16
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Senior Member
Join Date: Sep 2005
Posts: 202
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Congrats Jackie! Your an inspiration to us all. thank you.
__________________
Take care, k
DX: 10/29/03-Stage IIB, 3/12 nodes +, er/pr-,
Grade 3
MRM: 11/07/03
TX: TCH-BRICG Study-6 tx's; 12/15/03
Herceptin; til 12/14/04
Rads: 30 days
BRCA neg
S-Gap: 12/15/04
Oct 05: LAVH
NED
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04-19-2006, 07:58 AM
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#17
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Congratulations Jackie!! Wishing you many more NED years ro come.
__________________
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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04-19-2006, 10:39 AM
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#18
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Super news!
Keep it up, Lady! Your body is cooperating with all you are giving it.
After discussing ongoing twitches, twinges, etc with my med onc, he postulates that it is the nerves that are damaged from the chemos. Most of the time the nerves that have been damaged will repair and the synapses start firing again.
Unfortuately for me after having had SO MUCH chemo, my deep tendon reflexes are still nil. So, I may never get those back, yet I am very thankful not to have neuropathy in my hand and feet to any noticeable degree. I just don't move as fast as I used to, but no one else really is aware of that if I am rested and my energy level is OK.
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04-21-2006, 05:16 PM
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#19
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Senior Member
Join Date: Jan 2006
Location: Michigan
Posts: 98
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Now this is going to sound terribly naive on my part, but I'm hoping to come up with a simple solution to at least the heel burning problem.
I have had eyelid twitching off and on for about 5 years now and I've also had heel burning in the past year.
The eye-twitching would occur sporadically. I chalked it up to nerves. Still not sure why it happens.
The heel burning turned out to be because of the slippers I was wearing!
The seam around the edge of the slippers were right on my heel and over time, my heel(s) were getting dry & irritated too.
I solved the problem by buying 1 size bigger so the seam would not be in the area of my heel!
I know it sounds stupid, but it worked!
By the way, these things happened BEFORE I had breast cancer!
Believe me, I am not trying to make light of your symptoms; I guess I'm hoping that these are a couple of things that may not be related to your treatments and you can solve them with simple remedies.
Best wishes,
Sadie
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04-21-2006, 05:38 PM
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#20
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Senior Member
Join Date: Sep 2005
Posts: 285
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Jackie,
From a former Texan...YAHOOOOOOOOO! Wait to go, girlfriend.
Love and light,
Lisa
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