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07-26-2006, 07:43 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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Who are you? Unregistered
I am wondering who you are posting but unregistered. Every once in a while we get someone who is does not register. Is it because you are not aware that you can register or is it because you don't want us to know who you are??? I think if you were registered more people would respond to your posting. It also helps the board to keep track of the number of posts and where they are coming from. Lots of this info goes into stats for the group. Sandy
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07-26-2006, 08:57 PM
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#2
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Senior Member
Join Date: Sep 2005
Posts: 312
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Sandy, I am registered, but this is a public forum. I can understand why many may not want to post personal information where everyone can read it. But it would be nice if they could sign their posts with a name--and use it consistantly when posting.
Janet
Last edited by janet/FL; 07-26-2006 at 08:59 PM..
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07-27-2006, 09:53 AM
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#3
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Senior Member
Join Date: Feb 2005
Location: Norridgewock, Maine
Posts: 778
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I didn't mean they had to use their given name. I am sure there are those here who do not use their everyday name and that is a personal matter. It would be nice to see a name to the post. Sandy
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07-27-2006, 10:11 AM
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#4
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Senior Member
Join Date: Nov 2005
Posts: 51
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What a signal !!!
Some wonderful, warm signal you are sending to a hurting and scared heart, Sandy. Shame on you/. The administator of the board is fully capible of watching what gets posted here. So it's back to the "private club" mentality.I'm sure you must be feeling great, with no problems of your own to have so much time to worry about such silliness. Aquinis
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07-27-2006, 12:02 PM
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#5
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Senior Member
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
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Strengths and weaknesses
Nothing is as gentle as real strength...
One of the strongest and most welcoming aspects to this forum is the right to state one's opinions politely, even when we disagree.
AlaskaAngel
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07-27-2006, 02:36 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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It wasn't my intention to offend anyone, if I have I am truly sorry. I think this was mentioned once before by the administrator and the benefits for the board to have everyone register. Thanks AlaskaAngel we do have the right in the U.S.A. to express our opinion in a gentle way called "freedom of speech". Aquinis I hope you are happy you have hurt at least one person's feelings and that is me. To answer your question, I am a very, very busy person and you are right I really don't have time for this-enough being said. Sandy
Last edited by Sandy H; 07-27-2006 at 02:43 PM..
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07-27-2006, 03:43 PM
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#7
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Senior Member
Join Date: Sep 2005
Location: Grand Rapids, MI
Posts: 1,516
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Whoa, Whoa, Whoa
THIS is entirely uncalled for. Sandy in NO way was offensive, she just MERELY asked a question and YES, people ARE supposed to be registered to post, but that does not in ANY way mean that they can't maintain annonymity. Joe began requiring registration to post as some "knot head" had the nerve to insult the whole group, but didn't have the guts to sign their name to it. In joining another message board today, the statement of " the people on this board are here voluntarily, so please be nice" was there...We have ALREADY lost alot of knowledgeable, supportive people due to "stupid comments"...chill out. If someone wants to politely ask a question (as Sandy did), then let them and if your having a lousy day, don't take it out on anyone else. I'm SOOOO close to leaving and not posting anymore (just lurking) due to rude comments. Sandy, I love ya (hugs). GEEZ...
Rhonda
__________________
Rhonda
Dx 2/1/05, Stage 1, 0 nodes, Grade 3, ER/PR-, HER2+ (3.16 Fish)
2/7/05, Partial Mastectomy
5/18/05 Finished 6 rounds of dose dense TEC (Taxotere, Epirubicin and Cytoxan)
8/1/05 Finished 33 rads
8/18/05 Started Herceptin, every 3 weeks for a year (last one 8/10/06)
2/1/13...8 year Cancerversary and I am "perfect" (at least where cancer is concerned;)
" And in the end, it's not the years in your life that count. It's the life in your years."- Abraham Lincoln
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07-27-2006, 03:48 PM
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#8
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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I love you too Sandy. Because I (and Maryanne) were in charge of the topic chat room conversations on Sunday nights (just taking off for the summer which is why we're not there), Joe gave me rights to delete/power of attorney. I went in to do the deed but I feel this is Joe and Christine's job, not mine. My job is the chatroom and "sticking" things related to the chats and chatroom (why I was given these rights). I will not abuse them but I WANT TO.
Kindest regards
Becky
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07-27-2006, 06:55 PM
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#9
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Senior Member
Join Date: Feb 2005
Location: Norridgewock, Maine
Posts: 778
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Thanks Rhonda and Becky, I love everyone on this board. We all have our own problems and struggles in this journey and are here to help, inspire, and support in any way we can. I don't know what it would take for me to leave this board because I have a lot of support here. I had a need once and I had phone calls, e-mails and so much support here it brings tears when I think about it. You are all special and may God Bless you all. Big hugs to you all. Sandy
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07-27-2006, 07:00 PM
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#10
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Senior Member
Join Date: Sep 2005
Location: British Columbia, Canada
Posts: 198
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((((Sandy)))) Hugs to you!! I didn't think you were being offensive..Just for the record.
Tammy
__________________
Dx'd Dec'01 while 6mos preg. with #4. child (30yrsold)Mastectomy/AC chemo/radiation/ Recur:Mar'04 liver mets: 3 taxol/herceptin /liver resection/3 taxol/herceptin. Cured?
Recur: May'05 spine & Hip. New onc
treatment in Mexico Feb'06-Mar-06
back to Mexico June/July '06
Currently on herceptin/Zometa/Femara-recently added navelbine
Switched to arimidex Nov'06
ovaries removed June '07
ca15-3 in May'06 was 102
ca15-3 summer of '07 holding steady at 23!
ca15-3 slowly rising Dec & Jan 36, 38, 41 and Feb was 36
Feb '08 Liver, lung & Brain scan NED... bones are stable with even a couple spots gone. as compared with '06 scans
May '08 ca 15-3 is 55. Treatment is zometa, vinorelbine, herceptin and aromasin.
No signifcant changes.
Feb'09 Started Xeloda with herceptin..no more hormonals
Feb'09-June'09 tumor markers coming down again from 155 to 84
May'09 blood clots in lungs vena cava filter put in..Heparin shots daily for now.
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07-27-2006, 07:13 PM
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#11
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Senior Member
Join Date: Dec 2005
Location: Walnut Creek, CA
Posts: 438
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Sandy,
I didn't find your question offensive at all. Sending hugs and love your way.
Karen
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07-27-2006, 07:37 PM
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#12
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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I can't help it....I have to agree with Sandy...its just easier to reply to a NAME...rather then to unregistered. You can use any name you want...you don't have to use a real name, nor do you have to feel like you have to put all your business out there. Just use a nickname you made up...anything. 
When your trying to follow a post or person here...its easier to do if they go by a "name". Any name...rather then unregistered. Plus if the person posts under "unregistered"....I am almost afraid to reply to that person for fear they are just dropping in and won't even come back to see the reply? You have no idea if the person just found the board that day and will be back...or if its a one time thing? I have seen it happen on too many other boards. Thats why its so much better to use a name/nickname.
That reply to Sandy was totally uncalled for. There was no excuse to be that nasty and mean spirited to her. She was just trying to be helpful.
Sandy please don't take that one post to heart...we all love ya.
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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07-27-2006, 07:37 PM
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#13
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Senior Member
Join Date: Apr 2006
Location: FLORIDA
Posts: 148
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Sandy & Rhonda, I Always Enjoy Reading Both Of Your Posts Or Questions. Don't Let Someone That Is Having A Bad Day Bother You------we Need Your Support. Sheila
__________________
SHEILA (45)
09/2005--BREAST CANCER/8 POS NODES --A/C, MASTECTOMY,TAXOTERE, RADS, TAMOXIFEN,HERCEPTIN
02/2007--B/C METS TO OVARIES--HYSTERECTOMY, FASLODEX
12/2007--ENLARGING LYMPH NODES IN ABDOMEN--IXEMPRA, THEN TYKERB
08/2008--COLON TUMOR--A/C AGAIN,
12/2008--ABDOMEN TUMOR--AVASTIN/NAVELBINE FEMARA
05/2009--MET TO SPINE (L2) RADS
CURRENT TREATMENT
07/2009- START ZOMETA MONTHLY, XELODA & ABRAXANE......SURVIVING THE BEST I CAN
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07-27-2006, 09:27 PM
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#14
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Webmaster
Join Date: Feb 2005
Location: Home of the "Flying Tomato"
Carlsbad, CA
Posts: 2,036
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On registering !!
It would be my hope if everyone registered. Many times when we are seeking grants, the first question asked is: How many members do you have?
It would help us immensley if everyone registered but I do respect the privacy of the individual. But let me give you all some facts:
1. We never validate any information that you give when registering. Although it helps us when we try to help some members who have immediate problems ie: We cannot recomend an oncologist in Los Angeles, if the member lives in New York.
2. We do not even care what member name you use as long as you are consistent when you post.
3. You do not have to make your email address public when registering, there is a box that you can check that will keep your email address private. We never check the email addresses anyway.
4. As far as negative posts go, I think our group rates among the best online groups as far as maturity and lack of infighting goes. We all have one goal:
Survival.
Don't mind the spelling or other errors. I left San Diego 5:30 this morning and it is now 9:30 PM here in Reno, NV
REgards
Joe
__________________
A Proud webmaster to the internet's most informed, educated, COMPASSIONATE and caring group of breast cancer survivors.
Illegitimi non carborundum
My Album
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07-28-2006, 02:51 AM
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#15
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Guest
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Hello Sandy H
Because of some computer failure or something my name fell out and I came unregistered. From the beginning I have registered under my full name Jóhanna Jóhannsdóttir and in Iceland. I have now tried to open my name again because I didn't even notice until few days ago and have not been reading the website for a month due to radiation because of brain mets. Anyway I understand what your meaning with loosing information that could be useful to other members.
I dont have to hide my idendity because I have been interwieved in magazines here in Iceland and Im the only Icelandic woman who has been an naked model with only one breast and published (we are only 300.000 pop). My believe is that more women know about bc they take better care and are more concious. Information, information says the journalist from Iceland.
best regards,
johanna
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07-28-2006, 05:39 AM
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#16
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Sandy
I agree we all have a right to ask questions here...and you did ask a valid question...like you, I feel more on a 1 to 1 basis replying to a name rather than to an unregistered.....keep up the good posts...you are loved and valued on this board!
__________________
"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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07-28-2006, 05:46 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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Sandy,
I too believe that it is better when someone posts with a name. If nothing else, it does make it a little more personal and easier to relate to as a person. No one need use their real name but it is nice to put a name to the posts.
__________________
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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07-28-2006, 07:36 AM
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#18
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Senior Member
Join Date: Apr 2006
Location: Wilmington, Del.
Posts: 1,126
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Jóhanna Jóhannsdóttir What a beautiful name
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07-28-2006, 10:18 AM
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#19
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Senior Member
Join Date: Sep 2005
Location: Central Florida
Posts: 503
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Johanna! Love that name!
It has been a while since you posted. I admire your bravery. I don't think I could pose naked even with 2 good boobs!
I hope you get through your treatments soon!
Maria (MTS)
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07-28-2006, 11:04 AM
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#20
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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"Private Club mentality"???
This part of Aquinas' post was disturbing to me.
A private club is the LAST thing Christine had in mind when she developed the idea of this web site.
Some of us are more active in responding to posts than others, but we do not consider ourselves clubbish, cliqueish or anything of the kind. We enjoy reaching out and encouraging newcomers is part of that - including to Aquinas.
The fact that many of us are even still alive to turn on our computers is remarkable. And for me I want to interact with others like me, as well as give hope to some poor soul who has just been blindsided with bad news that they can and will get through it.
Johanna, I think Sandy was concerned about you and was just reaching out in her own way. Glad you are so full of life and committment to educating other women in your country. We are here to support you in this effort.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.
MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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