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12-21-2005, 02:10 PM
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#1
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Senior Member
Join Date: Dec 2005
Posts: 98
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Please talk to me!
I just came home to find that my tumor marker went up again from 13 to 17 to 25 to 36. I have a pet scan tomorrow. I'm completely freaked out and can't stop crying! My tumor was her2neu pos. er pos small one node (IIa). I had the usual dose dense chemo, matectomy, and herceptin for a year. Someone please talk to me I'm all alone here!
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12-21-2005, 05:00 PM
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#2
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Guest
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I am not the best qualifies to be replying to this, but undoubtably you are not alone.
A multitude of your sisters are going through or have been through the same fears from all I have read.
My personal cry is please spend some time to look at the posts on the importance of omega three and six to breast cancer and the cancer diet on the articles of interest page. I know it sounds like nonsense but it also helps in balancing and controling mood, if your body is nutritionally stressed I think one is more prone to be emotional.
It will turn your brain into spaggetti but should give your mind something else to worry about for a while and reseach and understanding makes you feel more empowered even if nothing else.
At the end of the day until they improve on whatever hint of telepathic ability we have and connect us up - good or bad or both - we are all alone in a sense it is part of the human condition - the alternative is probably being an ant!
Chin up
RB
If you are researched out oops sorry.
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12-21-2005, 05:40 PM
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#3
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Senior Member
Join Date: Sep 2005
Location: British Columbia, Canada
Posts: 198
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Hi...I sure wish I could say something to make all your fear go away!!! I know that fear and it is so black, cold & ugly!!!! I can say that tumor markers can be affected by several things ie. a cold,alcohol,different meds you also have ms right? I wonder if the myelin sheath gives off anything while breaking down that could affect the tumor markers.????? I know this is very scary, but a known enemy is always better than an unknown one...The pet scan will let you know if there is any "enemy" around..and even if there is that is not the end of the world there are lots of options out there!!! I hope that nothing is found...but you could still visualize grabbing fear by the throat and shaking it so hard that it just dissolves in your hands!!
Take care...let us know how things go..
Tammy
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12-21-2005, 06:26 PM
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#4
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Guest
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HavahJ
You must remember, tumor markers can fluctuate, and a slight rise does not mean anything...some Dr's find them unreliable for some patients. Wait for the PET results, and go by what it says. Take a deep breath, relax and know that we are all praying for you that good news is right around the corner...everyone here has been in your shoes at one time or another....and we too were scared...just think positive and know that you can conquer anything that comes your way...we are all here for you.
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12-21-2005, 06:26 PM
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#5
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Guest
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Sorry, I hadn't logged in, the last post was from me.
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12-21-2005, 06:28 PM
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#6
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Again....I am having no luck tonight!
__________________
"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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12-21-2005, 07:52 PM
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#7
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Senior Member
Join Date: Jul 2005
Location: Ontario, Canada
Posts: 722
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The trouble with tumor markers is that they have no statistical reliability across all markers: HER2, E, P, TOPO2, C-myc, HER1, .........
It is not until you've spent years documenting, analysing, and tabulating (like Gina) that you can say within the 90th percentile that your tumor markers mean what you think they mean.
So, until you get the results of your PET, please relax.
Take care,
Al
__________________
Primary care-giver to and advocate for Linda, who passed away April 27, 2006.
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12-21-2005, 09:05 PM
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#8
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Senior Member
Join Date: Nov 2005
Location: Philadelphia
Posts: 144
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Dear Havahj
My heart goes out to you and I wish there was something I could say or do that would take away the fear. All I can say is that taking cancer one step at a time helps. As someone else said, wait until you have your pet scan to see what is what. In the meantime, please know that you are not alone in your fear. We all have our moments and if possible, please draw strength from these wonderful people in this group who's prayers and positive energy are sent to all of is with each word they type.
God bless you and keep you.
Gina
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12-23-2005, 02:36 PM
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#9
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Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
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you're not alone, you have all of us and so many on these forums have such great knowledge, experience and strength.
take slow deep breaths, think positively and remember you will get through this.
may the new year be a better one
sarah
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