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06-16-2006, 03:51 PM
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#1
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Senior Member
Join Date: Feb 2005
Location: LI, NY
Posts: 660
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Friday June 16 - madubois63
Hi everyone!! I had such a great day today. Actually it started last night...the nurse unhooked me and let me sleep without the IV hook up - first time in 11 days!!! Felt so good not to have to fight with the pump in the middle of the night. The doctor came and did his rounds this morning and all is good. At one point during this past week, he wanted to put a chest tube in me, and that is not even a question now. My lungs are clearing up and I am not using the oxygen at all. The Hickman Catheter site was pretty angry looking and he kicked around the idea of moving it. Ugh - NO. If it had gotten taken out and moved, it would have to go on my left side which is where my port is and my reconstructed breast. I had a tram flap done, which means the breast is a live muscle, and I would loose it. There is no way I would consent to moving the Hickman unless it was totally infected. This doctor doesn't know me and doesn't realize I plan on having a life after this!! Anyway, today the site looks much better and he is not even considering moving it (like I would have let him???). I just needed a few antibiotics, but for the most part I have been off the IV all day. The best part of the day...the doctor gave me "roaming rights" today!!! I have to wear a mask, but my Mom and kids came and took me outside. we ate ice cream and sat by a flower garden. I saw dragon flies and bumble bees (I may not have ever noticed them before, but today I saw everything). My mom brought along a present I received from someone (from cyberspace) and it is AMAZING. It is a beach bag FILLED with bubbles, silly putty, a slinky, coloring books, crayons, puzzle books, a tiny bowling set, the coolest pink flamingo with sun glasses and holding an umbrella drink, a breast cancer bear, a hall pass to give to the nurses, a silly straw, a puzzle and so much more. My son and I played cards while my daughter drew all over my huge window with "window markers." It was so much fun (I'm playing with the slinky now), and the bubbles smell like cotton candy - how cool is that?? Anyway, your replies are keeping me sane. The support and love I get from you guys is just AMAZING. I knew I found a special place when I found this site, but I just can't put in to words how much you all mean to me!! Thank you so very much... ..·´¨¨)) -:¦:-
¸.·´ .·´¨¨)) -:¦:-
((¸¸.·´ ¸.·´ -:¦:- -:¦:-
-:¦:- ((¸¸.Maryann -:¦:-´´
__________________
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
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06-16-2006, 04:12 PM
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#2
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Senior Member
Join Date: Sep 2005
Location: .
Posts: 211
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Dear Mayann
It is so wonderful to hear from you and you sound so well. You must realize we also found something very special when you joined the list. Keep well and post when you can.
love
Lindaw
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06-16-2006, 04:30 PM
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#3
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Senior Member
Join Date: Sep 2005
Location: Grand Rapids, MI
Posts: 1,516
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Your smile is coming through LOUD AND CLEAR!!!!
I hope you continue to have fun filled days. Take care and God bless.
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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06-16-2006, 05:43 PM
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#4
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Senior Member
Join Date: Sep 2005
Location: NYC
Posts: 250
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Maryann,
You are such a wonder-- your post sounds like you're having such fun, and we're all missing out! I am very happy to hear that you're not letting your medical adventures get the best of you.
Happy roaming,
Jen
__________________
dx 4/05 @ 34 y.o.
Stage IIIC, ER+ (90%)/PR+ (95%)/HER2+ (IHC 3+)
lumpectomy-- 2.5 cm 15+/37 nodes
(IVF in between surgery and chemo)
tx dd A/C, followed by dd Taxol & Herceptin
30 rads (or was it 35?)
Finished Herceptin on 7/24/06
Tamox
livingcured.blogspot.com
"Keep your face to the sunshine and you cannot see the shadow." -- Helen Keller
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06-16-2006, 05:50 PM
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#5
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Senior Member
Join Date: Sep 2005
Location: Simi Valley, CA
Posts: 94
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Hi Maryann! It really does sound like you are enjoying yourself, although I bet there's a million other things you'd rather be doing! I too come here every day to check on you (stalk you really!) and your spirit uplifts ME and makes ME appreciate those bumble bees too! See the effect you have on people?  I'm so happy to hear you are doing so well, you truly are an inspiration to all of us.
Hang in there, soon enough you'll be shopping at the mall with your daughter all over again - now aren't you looking forward to THAT? (I can say that as I have a teenage daughter too!)
Take care and update us all often, we love to hear of your adventures.
__________________
Jen
DX 10/04 IDC Grade 3
ER/PR-, Her2+++
4/20+ Lymph nodes
Stage 3a
Age 38, CA
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06-16-2006, 06:25 PM
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#6
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Senior Member
Join Date: Jan 2006
Location: Birmingham, AL
Posts: 43
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Maryann:
You are an inspiration. Your post made me cry. Noticing the fireflies-- how beautiful. I am praying for you and your complete recovery.
Keep smiling and fighting.
Your cyberspace friend,
Monique
__________________
Monique M
Birmingham, AL
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06-16-2006, 06:27 PM
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#7
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Senior Member
Join Date: Sep 2005
Location: British Columbia, Canada
Posts: 198
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Maryann!! Things sound like they are going so well!!!! It just warms my heart to hear how well!! Thank you for keeping us updated it really means alot to us too!
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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06-16-2006, 08:25 PM
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#8
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Senior Member
Join Date: Apr 2006
Location: FLORIDA
Posts: 148
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I AM SO HAPPY FOR YOU & YOUR FAMILY. YOUR SPUNK & SPIRIT ARE AN INSPIRATION TO ALL OF US ON THIS SITE. STAY STRONG SHEILA
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06-16-2006, 11:01 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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MaryAnn, I have said it before and will say it again...your truly AMAZING! I just smiled and laughed when I read the part about your doctor thinking about moving your Hickman port...and how he DOESN'T know you very well. lol
No he doesn't...but I bet he is getting a good idea by now. I am so glad to hear it cleared up and doesn't have to be moved. Its also fantastic that you didn't have to deal with that darn chest tube either. Yeah! Sounds like your well on your way girl.
I am so glad to hear you got a reprieve from your IV...that must of been a REALLY nice change!
Your just unbelieveable. I swear...I can almost hear you laughing and see you smiling through your words. Keep that aweseome sense of humor you have...and continue to blow your doctor away. lol
Keep us posted...and behave yourself. hahaha
Sending you warm & healing thoughts.
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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06-17-2006, 03:12 AM
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#10
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Senior Member
Join Date: Sep 2005
Location: Ontario, Canada
Posts: 752
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Maryann;
I am so happy you are up and about and able to be with your family!!! Not knowing what lay ahead it is wonderful that you have had all good news. Thank you so much for posting and keeping us involved in your treatments....have you got a camera?
Cathy
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06-17-2006, 05:42 AM
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#11
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Maryann,
So glad you're doing so well! When reading your description about your gift from a cyberspace friend, I could just imagine everything so well. You are truly an inspiration. Keep fighting!
__________________
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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06-17-2006, 07:29 AM
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#12
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Senior Member
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
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Maryann,
You are an amazing woman and a true gift to this site. It was so uplifting for me to read your post this morning. It must have made your children's day to have the opportunity to be with you yesterday and actually take a walk outside. As I said before, I always look for your posts and think about you everyday. Best wishes and I hope that you continue to have a positive outcome.
Barbara H.
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06-17-2006, 07:51 AM
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#13
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Senior Member
Join Date: Nov 2005
Posts: 943
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Maryann,
I love your positive attitude and the way you appreciate every little small thing that comes your way. You certainly are an inspiration! Keep up that spirit and healing health girl!
__________________
Robin
2002- dx her2 positive DCIS/bc TX Mast, herceptin chemo
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06-17-2006, 01:16 PM
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#14
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Senior Member
Join Date: Sep 2005
Posts: 49
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Mary Ann,
You are such an amazing lady and an incredible inspiration to us all. I continue to pray for you and your family and may you continue to get stronger every day. Love and hugs.
Petesmom
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06-17-2006, 07:17 PM
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#15
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Senior Member
Join Date: Feb 2006
Posts: 1,014
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You have the most wonderful spirit. This attitude is going to get you through without a doubt. It sounds like you had a wonderful day. My little girls birthday party was today and we had some of those scented bubble too...they are too neat...sherryg683
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06-18-2006, 03:01 PM
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#16
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Senior Member
Join Date: Sep 2005
Location: Vancouver, Canada
Posts: 329
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Livestrong Maryann, you are amazing!
Daer Maryann,
When I was dx and later found this site, reading your posts gave me so much hope and power. Everyday when I logged in I was looking for your post first. Your courage, your achievements, your beautiful face gave me hope to stay strong and fight this terrible disease. I'm with you every second for this new battle and I know you will add to your success story with another victory soon for others who need hope and courage during difficult time.
LiveStrong for all of us.
Big hug,
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06-18-2006, 03:40 PM
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#17
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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You helped me ...
... this week as I have been in the U of W hospital with a lumbar drain to attempt to take care of excess cerebral/spinal fluid. The worst side effect of this was the headaches that I still have to fight through.
So, I am VERY happy that you have had some good news this week, as you were in my thoughts a lot as I lay in my own hospital bed with the drain and IV lines to deal with. At least I amback in my own bed and I wish the same for you as soon as possible.
I can imagine how short on sleep you are after my stay. They wake you up SO often for monitoring - more than I was given to understand when I went in, but that also depends on how things are going.
REST WELL, sweetie! And have fun with the "toys."
__________________
"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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