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05-27-2008, 10:54 AM
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#21
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Senior Member
Join Date: Jun 2007
Posts: 2,210
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I am so happy for you AND your daughter! How wonderful that you will be able to share those special events with her.
__________________
Bonnie
Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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05-27-2008, 10:56 AM
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#22
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Great news MaryAnn!! I am happy that you were heard and that a compromise was made. I really believe that you will be healthy and well again very soon!
How terrific about your daughter!! How proud you must be. I am proud for her too!!
Hugs,
Lexi
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05-27-2008, 11:00 AM
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#23
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Senior Member
Join Date: Feb 2006
Location: Watkinsville, Georgia
Posts: 356
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Yeah MaryAnn!
You know your body sister! I am so glad you can do this at home and be with your family.
How proud you must be of your daughter! Have fun!
Ruth
__________________
[/SIGPIC]~~~~~~~~~~~~~~~~~~~~~~~~~~~
Diagnosed 6/03 nursing daughter
Dose dense A/C 4x
Modified rad mast 8/03
IDC; 3 cm; 10+/16 nodes; ER/PR-; Her2+++
Weekly taxol w/Herceptin (off label) 12x's
40 weeks Herceptin
Radiation 33x
Reconstruction w/ implants 05 & 07
NED
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05-27-2008, 12:09 PM
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#24
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Senior Member
Join Date: Feb 2005
Location: LI, NY
Posts: 660
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Carla - My daughter just turned 17. Since she was 14, I've taken her to over 100 concerts (sometimes as sick as a dog). Everyone thinks I'm nuts, BUT I've always known what she was doing or not doing, who she was hanging out with, we have a common interest and make fun drives along the way leaving room to discuss serious stuff if need be and she knows the rules....if her grades fall, the concerts stop! She's been on the Principal's Honor List ever since. She gets awards in French, chemistry and art and does community service through the art club. She'll be taking Advance Placement English next year for college credits. I could not be prouder of my two wonderful kids!!! My son just finished his first year of college with a GPA of 3.96 and he started his first job working in the local supermarket deli. He pays for his gas and car insurance and is always looking to help me out anyway he can. He opted to stay close to home for two years because of the leukemia. But next year he will go off to a bigger school that has offered him a great scholarship! My kids were 9 and 11 when this all started and I never thought I'd get this far. Thanks for the opportunity to brag!!!
__________________
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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05-27-2008, 12:20 PM
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#25
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Dear Madame -
NO ONE deserves bragging rights more than you!
It is a tough go to bring up teenagers when a person is not fighting cancer on a constant basis. You have done the nearly impossible. But, your sacrifices to stay close to them and monitor them has paid off and will continue to pay off as they make their way in to the world at large.
I waited to reply to see how the liver biopsy would play out. Knew there could be changes based on that result. And I am THANKING the Good Lord that you do not have to go back into the hospital for now (or hopefully EVER!).
I used to take the wipes and go over things in my Dad's hospital or care facilty every time I visited. Was hoping to cut down on the spread of the staph germs. My sister did that for me when I had my head surgeries. Keep on wiping everything down. Glad to see that people are now using the wipes provided for the grocery carts now. I used to feel I was the only one ...
__________________
"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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05-27-2008, 12:38 PM
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#26
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Senior Member
Join Date: Feb 2005
Location: LI, NY
Posts: 660
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Hi Steph!!!! I've been wiping everything down for a long time now and everyone still thinks I'm nuts. After watching the cleaning crew scrub my toilet then clean my shower with the same pair of gloves on and one other horrible experience, I've never been the same about hospital cleanliness. I've never had any of those fungal and bacterial things until I go in to the hospital. My luck, I'll pick up MRSA. As clean as the transplant ward is, it's not my home. I am very happy to have sort of gotten my way!!!
Thanks for all the great advise!!!! I am sure I will be back to my old seld real soon. Love to you all....
__________________
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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05-27-2008, 04:53 PM
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#27
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Well, YES. I remember you practically had our hotel room in San Diego fumigated by the time I got there!
Appreciated your thoroughness.
As you may have noticed when we roomed together, I don't like to put my things down on the counters, dressers, etc. Just take them out of my own carriers then put them back after using whatever it is. My toiletries and underwear bags get "the treatment" when I get home. And most of my clothes stayed either on hangers or in my suitcase. Don't know WHO used those drawers last ...
Maybe that is overdoing it, but I am 1/4 Norwegian!
Just do what you have to do, and use plenty of bleach solution in a spray bottle.
__________________
"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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05-27-2008, 06:10 PM
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#28
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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Madame DuBois, you are an amazing woman! You have raised two wonderful children in spite of everything going on in your life. You need to brag every chance you get, you don't need an excuse. I'm so glad that things are working out better for you. Love ya! Bill
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05-27-2008, 06:18 PM
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#29
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Dear Maryann,
After reading your awesome post on your AWESOME children the first thing that came to my mind was this.............
TRULY YOU'VE BEEN BLESSED! I KNOW you know that!!
Gentle hugs.....
MJ
__________________
"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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05-27-2008, 08:53 PM
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#30
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Maryann, Keep on truckin... 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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05-27-2008, 09:12 PM
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#31
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Senior Member
Join Date: Jun 2006
Location: Bradenton,FL
Posts: 977
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Maryanne,
you are TRULY a WONDER!
Much love,Marcia
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05-28-2008, 09:44 AM
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#32
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Senior Member
Join Date: May 2008
Posts: 62
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Dear Maryann,
Wow so many concerts! My kids sing in choirs and I can remember sitting in a few performances when it was a hard effort to be there.
You must be so proud. Our kids really can step up. They bounce, even as we crash.
Each of my boys changed scools in September. The older went from the easiest MS in the district to the hardest, largest, most chi-chi High School. They put him in a couple accelerated classes and he strugled mightily. Nothing to do with what was going on with me. He eventually had to drop down to straight college prep. A real blow to his ego. Plus he still has not managed to talk to a girl.
My younger one went from his easy Elementary to the magnet school for all the over-achievers in the district. He is supposed to be a Middle Schooler in 5th grade. Responsible for keeping track of his work. Like that happened! He goes from A to F if he just does not bother to do his work.
I was O.K. keeping up with them at first, but the last couple months my husband has saved each kid from some serious Cs and Fs. Bless him.
I want more than anything to be there for graduations. You show me it is possible.
Thank you,
Carla
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05-28-2008, 02:53 PM
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#33
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Senior Member
Join Date: Feb 2005
Location: LI, NY
Posts: 660
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Aww - thanks everyone!! I am very proud!!!
Carla - You WILL be there. I don't know if you know the story of my son's graduation??? Last June, my liver decided to reject my bone marrow transplant (seems to be a yearly event). I turned an awful color of green and my eyes literally glowed yellow. I haven't been that bad this year, but close. Anyway, I was in and out of the hospital...test after test, biopsy after biopsy. I checked myself out of the hospital the day before his graduation. I got to the ceremony a little late. The principal looked at me all glowing and got a folding chair, placed it on the field where the graduates were and sat me down as close to the event as possible. We had our lobster dinner and little party afterward. I woke up and drove back to the hospital the next morning where I stayed for two weeks of treatment. The docs knew there was NO way they were going to keep me in the hospital that day!!! Where there is a will, there is a way. I have every bit of faith in you sweetie!!!!
__________________
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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05-28-2008, 03:06 PM
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#34
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Senior Member
Join Date: Feb 2005
Location: LI, NY
Posts: 660
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An update to my treatment...Today the leaches were let out on me (not literally), but I had unit of blood TAKEN from me for a change. Over 50 transfusions, and now they want blood??? I have an overload of iron and a small degree of graft versus host disease. I will be giving a unit of blood weekly for a while and get a epogen shot to help the red blood cells rejuvenate (it's a shame they can't use they blood). I am also starting steroids in the morning (I am opting to sleep tonight). Tomorrow I will be out for hire cleaning, sorting, scarpbooking...whatever!!! The steroids are amazing! For anyone keeping notes, there is a drug called Ex-Jade that helps people with iron overload from too many transfusions, but it is very toxic to the liver and takes a long time to work (6 months or so). This is not the best option for me, but it is there for others if need be...
__________________
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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