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07-29-2006, 10:57 AM
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#1
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Senior Member
Join Date: Feb 2005
Location: LI, NY
Posts: 660
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Okay since you all asked...update/madubois63
It's been a while since I updated because there really wasn't anything to say. It has been down time - recouping and enjoying LIFE - except for all the scans I did last week. The mammo and the bone scan were good. I have not seen the reports for the CAT and PET yet, but have a pretty good feeling about them. My BC onc faxed them to my leukemia onc. If anything was wrong, I would have heard about it by now. I will have copies in my hand Monday morning. I may be flying out to Buffalo sometime next week for a consult at the transplant hospital. As soon as I get an appointment, I have to call Angel Flight America. Corporate Angle Network could not help me (too quick and no flight going to Buffalo). Angel Flight America hooks up cancer patients with private plane owners that donate their time, gas and plane. They will fly me there and back - same day. It will be a small 4 -6 passenger plane. I'm packing my parachute as we speak, even though they assured me that pilot will land the plane for me. As soon as I get back from Buffalo, the leukemia doctor wants me back in the hospital for my next round of chemo. This time it will only be five days of continuous chemo (last time was seven), but it could take 3 to 5 weeks for my counts to come back up again. I am determined to be out of the hospital by my birthday at the end of August. My onc said, "No way. Don't count on it." Of course, I asked him if he wanted to make a bet. I got a copy of the letter from the Donor Registry. I was told I had around 200 potential bone marrow donors. Actually, I have 299 that are 6 out of 6 (marker) matches and over 4,000 5 out of 6 matches. There is also 4 units of core blood that is a perfect match. They like to use that for kids because it is only a small amount of blood, and I would need two units. That is a total backup, but I doubt very highly that I will need to look that far. I am feeling great...better than I have in a long, long time. I cook, clean, shop and have a concert to take my daughter to before I go back in the hospital. This one is close to home for a change...I usually end up in another state in an ice storm or a heat wave. It keeps me going! Love you all and I keep praying for a cure for all of us!!! Thanks for being there for me through all this.... Maryann
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07-29-2006, 11:19 AM
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#2
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Senior Member
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
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Hi Maryann,
Thank you so much for your update. Let us know about that plane trip. You are such an inspiration and you continue in our thoughts.
Best wishes,
Barbara H.
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07-29-2006, 11:25 AM
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#3
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Donor matches - YEAH!
Hey Maryanne -
Way to go on those donor matches. I feel like this is half the battle since your family was not helpful in this regard.
So, do you want to come and clean MY house?? With the hot weather, the doors and windows have been open more and that brings more DUST. (ALmost no one has air conditioning out here in the misty woods.)
I am SO HAPPY to hear how well you bounced back after that first round of killer chemo. And that the scans are good.
Another New Normal, huh?
__________________
"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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07-29-2006, 05:16 PM
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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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Maryann
Thank you for the update - all is going so well - WHY am I not surprised?
Love to you,
Jean
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07-29-2006, 05:33 PM
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#5
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Thanks for the update...
Thanks for the update. And by the way, I'm sure YOU could land the plane yourself it you wanted to, Amazon lady!
Chris
__________________
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial
5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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07-29-2006, 06:12 PM
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#6
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Senior Member
Join Date: Sep 2005
Location: Vancouver, Canada
Posts: 329
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Dear MaryAnn,
Thank you for update. We love you and are with you all the way until you get hold of our dear NED for good.
Big hug,
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07-29-2006, 07:30 PM
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#7
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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MaryAnn, I am so happy to hear things are going ok. If your shopping, cooking, cleaning and even running your daughter to a concert....you MUST be feeling pretty GOOD all things considered. Have I...or anyone else here told you lately that your are a TRUE INSPIRATION. (I know, you've never heard that before.) 
I am so happy that you had some time to just enjoy and spend time with your family and do what you wanted to do for a while. We all need to recharge our batteries.
You honestly just amaze me...you have no idea just how much! You always have such a great attitude, great sense of humor and there seems to be nothing that can stop you or even slow you down. And now we find out you have went so far as to PACK your own parachute. LOL (Sure you did.) hahaha Actually...the more I think about it...you probably did. HA!
Now that this doctor has had time to get to know you a bit...I bet he DIDN'T take you up on that bet..did he! He knew he would lose.
Thanks for updating all of us...its so nice to hear that your doing so well considering all you have been through. Sending your warm healing thoughts. Hang in there.
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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07-29-2006, 07:42 PM
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#8
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Senior Member
Join Date: Feb 2006
Posts: 1,014
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You are my hero, you are so strong and always upbeat. I didn't know about the Angel Flight service, what a wonderful thing. You're on your way. I love those mother/daughter concerts. I spent last weekend with my little gal at an outdoor concert and we got soaking wet. I wouldn't trade those memories for the world...sherryg683
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07-29-2006, 07:50 PM
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#9
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Senior Member
Join Date: Dec 2005
Location: Walnut Creek, CA
Posts: 438
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God bless you Maryann.
Karen
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07-29-2006, 08:11 PM
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#10
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Senior Member
Join Date: Dec 2005
Location: Alexandria, VA
Posts: 1,055
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Glad to know things are going as well as can be. Thanks for keeping us posted. BB
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07-29-2006, 08:30 PM
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#11
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Senior Member
Join Date: Sep 2005
Location: Madison, Connecticut
Posts: 639
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Welcome back angel girl!
It is so nice to hear the bounce in your voice...and isn't it great having a daughter pulling you back head first into the world of normal! Thank you for keeping us up to speed; we worry about you!!
Love Kim from CT
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07-29-2006, 09:17 PM
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#12
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Maryanne,
So glad to hear you are doing well and feeling good, although I'm not surprised in the least. Aren't children the best medicine?!
Sassy
________
Roll a joint
Last edited by sassy; 08-22-2011 at 08:50 AM..
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07-30-2006, 07:32 AM
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#13
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Maryann,
Glad you are doing so well. I wish you luck with your next round of "killer" chemo. My son had leukemia (AML) so I am well aware of how harsh the chemo is. You're an inspiration to all of us.
__________________
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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07-30-2006, 11:51 AM
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#14
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Founder - HER2 Support Group
Join Date: Feb 2005
Location: Carlsbad, CA
Posts: 361
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Thanks for your update
Maryann
I understand from your new update that you are on your way to get a cure for your blood disorder. It is a new challenge for you. All of us have alot to learn about this leukemia DX, and you are helping to educate us through your treatment. We are here to support and help you through it all. If you want a compassionate ear, e-mail me your tel#.
You sound great, strong and ready. I always found motivational Music helped me tolerate the treatments and heal from the inside out. hAPPY TO HEAR you'reFEELING STRONG. I'LL BE PRAYING . I AM SURE YOU ARE GOINGTO HAVE A GREAT RECOVERY, YOU SOUND VERY UPBEAT !
Warm HUGS
Christine
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07-30-2006, 01:02 PM
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#15
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Senior Member
Join Date: Feb 2005
Location: LI, NY
Posts: 660
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I do bring my "rain forest/ocean waves" music with me for treatments. I wanted to bring candles to the hospital, but they wouldn't let me - lol. I do have those nice sachet packets to make my hospital room smell nice and markers to color my window with. I'm so strange, but everyone said I had the nicest/funnest room...I want to write everyone, but my fingers are just too tired. Thanks everyone for pumping up my ego. With all the nice things written about me, I am surprised my head fits in my wig (bald humor). Since this diagnosis was a direct result of breast cancer treatment, I think it's important to let others know about it. I have searched the web and still think this is the best place for me to be....
..·´¨¨)) -:¦:-
¸.·´ .·´¨¨)) -:¦:-
((¸¸.·´ ¸.·´ -:¦:- -:¦:-
-:¦:- ((¸¸.Maryann -:¦:-´´
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07-30-2006, 03:42 PM
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#16
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Senior Member
Join Date: Jul 2006
Posts: 59
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Dear Maryann,.
Although I relatively new to the site I have followed your journey and you are a "hero" for me as well. I know you didnt intend to become one in this way!
You will be in my thoughts as you battle this new "beast". FYI , one of the ladies on another site I frequent was diagnosed w/ CML after a BC diagnosis and treament w/chemo (also BRCA mutation carrier). She is doing excellently! (word?) 3 years out! Hope this put another smile on your face...(I am sure even bald, you are quite lovely!)
Many hugs,Marcia
PS I utilized Angel Flights in June 05 to travel to MDAnderson from Mississippi . What kindhearted ,terrific folks they are! I had a blast watching the scenery and listening to the UPS pilots chatter ( I am easily entertained)
Last edited by Soccermom2006; 07-30-2006 at 03:48 PM..
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07-30-2006, 03:58 PM
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#17
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Senior Member
Join Date: Sep 2005
Location: Grand Rapids, MI
Posts: 1,516
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Maryann...
Keep the GREAT news coming. Don't you and your daughter join the "groupie" crowd!!!!
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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07-30-2006, 05:37 PM
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#18
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Senior Member
Join Date: Feb 2005
Location: LI, NY
Posts: 660
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>>Don't you and your daughter join the "groupie" crowd!!!!<<
we ARE the groupie crowd!!! we made it in to a video one night over the winter. we stayed after the show to get autographs. we waited by the buses (in 10 degree weather), and the band came out with a film crew. my daughter and her friend still talk about that night. I figure it this way...I'm with her, I know what she's doing (and what she's not doing) and she will always remember me for it...
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