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03-19-2008, 05:37 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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My yearly check up for bone marrow tranplant...
My first yearly follow-up check up for my bone marrow transplant finally happened. I was supposed to go in December, but had to have the biopsy of my lung. Now, you must understand, getting to this appointment is no easy feat. I live on Long Island and had the transplant 8 hours away in Buffalo, NY. I once again flew to Buffalo with Angel Flights American. If anyone ever needs their services, please let me know. This is a GREAT organization. Private plane owners donate their own planes, gas and time to fly patients to appointments/treatments for free. The planes are small (4 passenger), but it is a lot of fun. I even got to fly one of the planes for a bit!!  Once I got to Buffalo, I stayed at the American Cancer Society's Hope Lodge (also for free).
I saw the hospital's dentist and had to have another tooth pulled (they pulled 3 for the transplant) - ouch!! To save the tooth, I would have to have surgery on the bone. It would be a huge procedure and my counts and pocketbook just aren't up to it right now. After that fun morning, I saw almost everyone that took care of me including my physical therapist. The therapist said she wasn't billing me because there wasn't anything for her to do. All the doctors were happy with my progress. My counts are a little low, but I am on chemo for the bc. It took everyone a little while to recognize me. Last time they saw me, I was bald and about 40 lb heavier.
I filled out an application to contact/meet my donor. I just have to wait for her to answer...I did learn that she is from Germany. I was told that a lot of donors are from there. I would have never guessed...
After a full day of appointments, I met my dearest friend Ursula for dinner. Ursula and I met on the AOL bc support site. When she heard I was going to be in Buffalo for the transplant, she adopted me. She came to visit and called all the time. It was very nice to have a local friend.
On Saturday, I crossed the border and visited Niagara. I love America, but must admit the Falls are much nicer on the Canadian side. I flew home on Sunday. It was snowing and I was a little worried I would get snowed in. We flew through the snow and rain, but all in all it was a great flight. I slept through Monday....glad to be home!!!
__________________
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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03-19-2008, 05:47 PM
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#2
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Hi Maryann,
Sounds like you had a wonderful day and all went well. I'm happy for you. I really am I've never told you this before but I love your avatar. You look like such a fun, loving girl who is very pretty.
God is good..............
Mary Jo
__________________
"Be still and know that I am God." Psalm 46:10
Dx. 6/24/05 age 45 Right Breast IDC ER/PR. Neg., - Her2+++ RB Mast. - 7/28/05 - 4 cm. tumor Margins clear - 1 microscopic cell 1 sent. node No Vasucular Invasion 4 DD A/C - 4 DD Taxol & Herceptin 1 full year of Herceptin received every 3 weeks 28 rads prophylactic Mast. 3/2/06
17 Years NED
<>< Romans 8:28
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03-19-2008, 06:12 PM
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#3
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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, can't believe it is a year already - yes you have come such a long way. You are truly our hero. I hope you are
still holding my green lady....please do.
So happy for you and Congratulations on your first year bonetransplantversary....whew that is a long one.
Love and Hugs,
jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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03-19-2008, 06:23 PM
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#4
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Maryann
Time has flown...it doesn't seem like a year already...what a great milestone and one of many you will celebrate.....you always make sweet lemonade out of whatever life hands you.....you amaze me! What a role model you are for all of us....congratulations and many many more to you~~~~~~~
__________________
"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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03-19-2008, 06:41 PM
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#5
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Senior Member
Join Date: Jul 2007
Location: Northern California
Posts: 764
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Hi Maryann,
I am glad things went well for you and that you even got to do a little site seeing. Good for you. You are amazing.
Tonya
__________________
DX 02/01/07
2.5 cm, Er/Pr-, Her2+++
18/20 Nodes
03/07 CT & Bone scan - Clear
AC x 4, Taxol x 4, Added Herceptin
Radiation until 09/07
Herceptin every 3 weeks until 06/08
01/10/08 local recurrence -IBC
01/28/08 CT & Brain MRI - clear
02/08 - Navelbine & Herceptin
05/08 -MRM
05/08 - Gemzar & Herceptin - didn't work
09/08 - Hyperthermia rads
03/09 - Tykerb/Xeloda
05/10 - Tram flap to fix wound
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03-19-2008, 06:48 PM
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#6
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Maryanne,
Glad it was a good day for you and so many are there for you. Happy days!
__________________
Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
14 YEARS NED!
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03-19-2008, 07:13 PM
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#7
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Maryanne,
Time sure does fly by - it doesn't seem like it's been a year already! I'm sure if I were in your shoes I'd be saying yes it's been a year, a very long year. Glad that everything went so well for you. You are a true warrior and an inspiration to us all.
__________________
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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03-19-2008, 07:50 PM
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#8
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Wow Maryann, you had a really busy two days!! I can't believe that it has been a year since your transplant. I am happy that although your counts are a little low that all and all they are happy w/ how well you are doing. I hope that the bc tx is kicking cancer bootie to the curb.
That would be terrific if you are able to meet your donor. I know that the donor will feel so blessed to make your aquaintance. You are an incredible lady who has lifted so many of us up with your strength. I am thankful for her, too.
Hugs,
Lexi
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03-19-2008, 07:58 PM
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#9
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Maryann, It's seems like you had the royal treatment. Good for you! I'm glad the day went well and you are doing well also. Joan
__________________
Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2023 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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03-24-2008, 08:33 PM
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#10
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Hi MaryAnn,
Thanks for posting this update. I grew up in a town 20 minutes from Niagara Falls on the Canadian side - St. Catharines. We would go to Buffalo all the time. Glad you made it over to "our" side - because as you say the view is really prettier from the Canadian side.
Glad your check-up was good. I hope you are doing well.
all the best
caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08
Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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03-24-2008, 11:28 PM
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#11
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Senior Member
Join Date: Nov 2005
Location: Lincoln, Rhode Island
Posts: 371
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Oh Maryann,
What wonderful news! And it sounds like you had a blast and you so deserve it. I am so glad for you! All my best my friend.
__________________
Love and Hope
Karen
IDC
DX 1998 STAGE I ER+/ PR+
AC CHEMO TILL FEB 1999
Tamxofin till 2001
2001 exstensive liver mets and mets to lungs
Started weekly taxol
Jan 2002 found out I was strongly HER2POS+++ started herceptin continued with taxol and herceptin till June 2002 then from June 2002 till Jan 2005 just herceptin and Arimidex
2005 Navelbine herceptin had RFA Then back on taxol with herceptin
April 2006 progression again went on clinical trial with tykrerb/herceptin progressed on the started Xeloda/ herceptin
Feb 2007 started Doxil
August 2007 Taxotere,Carboplatin and Herceptin exstensive mets to liver and pancreas
October 2007 Had to stop Carboplatin due to sever allergic reaction
Jan 2008
Stopped Taxotere due to progression now on Gemzar and Herceptin
March 2008 Starting Carboplatin, Abraxane, and Herceptin.
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03-26-2008, 10:16 AM
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#12
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Senior Member
Join Date: Jun 2007
Location: RHODE ISLAND
(Ed getting me a latte on 2nd Cancerversary Cruise 2008)
'BELIEVE': To accept as true or real, To have faith in, To presume
ALWAYS BELIEVE
Posts: 3,000
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Whewww!!
MadameD, you made me tired just hearing of your adventures. Ed's best friend does these flights and gets so much joy doing so. He has saved so many people grief by donating himself to this good cause. I am so happy that you received help from these 'special Angels'. Have not been to the Falls in a while but my favorite is the Canadian side too! I also want to mention my thanks to that donor for unselfishly giving of herself to you. To help someone she has never met that is not just purely beautiful, it is priceless. I did not get the chance to PM you with what you need from me but I will do so soon. Did I mention how I thank you also for unselfishly giving to us here. Thanks for your personal help MaryAnne, I love you. >>Believe51
PS: Your friend is lucky to have you so close 'cause I had plans to adopt you!! LOL
.....and I do so hope you will be able to do the New England get together!!
__________________
9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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