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06-05-2008, 07:32 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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Madame DuBois speaks...
There is so much I want to say. I have been sort of silent for the last few days because of the loss of the most AMAZING breast cancer warrior friend. My heart is absolutely broken, and I just am at such a loss. I met Stephanie Koslow on the aol board 4 years ago. We had an instant connection and laughed and cried day and night. First it was always e-mail, posts and then Ambien infested IM's that didn't make sense in the middle of the night. Then it was phone callls all through the long sleepless nights. Through her pain, Stephanie's artisitc talent came out. She started schetching Hudson Valley landscapes that were absolutely amazing and hid a little pink ribbon in each picture. She started to display her art in the newly revised up and coming Poughkeepsie art world - that she helped revise. She was asked to make speaches and was invited to San Antonio this past year to teach an art healing class to one of the pharmacetical companies as a patient advocate. Steph's mom lives in Flushing, NY, so that was a half way mark for us. I'd drive there when she was visiting and we'd go out and have sushi (a huge love for both of us). He step dad always paid! I got to visit Steph in Poughkeepsie a few times over the years and walked across the Hudson River and just stood in the middle of the bridge for the first time in my life. Steph came to visit me on Long Island and we drove around visiting little water ways and just having fun. When I had the bone marrow transplant so far from home, Stephanie's Artistic statements, art and poetry lined my doors as inspiration for others roaming the halls. She learned to snow shoe and hiked mountains when she could barely move. She dated even though she was so sick at times. She took laughter classes and just inspired me to be better.
My biggest problem with Stephanie was her care. She was negative everything and didn't have any chemo at all over the last 3 1/2 years. I really feel her doctors did her the biggest disservice due a person of such dignity.
Stephanie leaves behind a son, Russell, a sister, Kate, her mom and step dad and three cats that she adored. She also leaves behing a legacy of breast cancer art and a "Second Life." She worked with the American Cancer Society in Second Life and her name was Artisitic Fimicoloud.
www.stephaniekoslow.com
__________________
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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06-05-2008, 07:49 PM
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#2
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Senior Member
Join Date: Feb 2005
Location: LI, NY
Posts: 660
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As an update to me...I have an extreme iron over load in my liver because of sooooo many blood transfusions. There is also a little bit of graft versus host disease (which actually may be fighting the breast cancer in my lung). I had my second phlebotomy treatment today. They took five units of blood again and gave me a shot of epogen. My blood counts were actually better than last week so I was able to give the blood. They always check first before taking blood. My liver functions are better than last week too. I am on heavy steroids and getting a lot done, but they just lowered my night time dose, so maybe I can sleep a little. I have chipmunk cheeks already, have eaten every thing in the house but have somehow managed to not gain any weight??? I shake a lot, my eyes are blurry and my sugar is way high. I am back on the diabetes meds again. This was all expected. My bathroom will be completely finished tomorrow. I've spackled, sanded, painted trim, changed racks, changed shower curtains and plan on doing the last coat tomorrow (steroids are wonderful). My color is almost back to normal and I got a great hair cut. Everyone says I look great, but my heart is broken over my dear friend. On the other had, I am going to brag a little again. My daughter's awards were for Outstanding achievement in Art & Mural and Highest average in Regents chemistry. She was inducted in to the National Honor Society, the National French Honor Society and the National Art Society. I have been so blessed in so many ways and thank you all for all the support and love you always seems to give so lovingly and freely. I pray for everyone's achievements and my heart breaks at every relapse and set back. 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
Last edited by madubois63; 06-05-2008 at 07:53 PM..
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06-05-2008, 07:52 PM
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#3
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Mary Ann,
I am sure words cannot alleviate your pain and loss. But hopefully prayers and the support of those who care can.
Please know my thoughts and prayers are with you and with Stephanie's family.
__________________
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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06-05-2008, 08:02 PM
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#4
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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Maryann, I am so sorry to hear of yet another loss. Especially of such a close friend of yours. She sounds like such an amazing, awe-inspiring woman. I'm so glad that you were blessed to have known her. Our existence is eternal, but the time we have to touch each others lives is fleeting. I feel that God put you into her life to help her, and I feel that you have done that. I know how loss and perceived injustices can feel, but please try to take comfort in the times that you both shared, and know how much you helped her. You're in my thoughts and prayers, Madame. Love, Bill
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06-05-2008, 08:05 PM
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#5
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Maryann,
So sorry to hear of the loss of your dear friend and fellow warrior Stephanie. I can only offer my sympathy.
I hope you are feeling well, despite all your own trials. And a big congrats on the wonderful accomplishments of your daughter - There is a great Yiddish expression for this - Shep nachas from the kinder... Which basically means - Take great pride from your children...
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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06-05-2008, 08:35 PM
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#6
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Senior Member
Join Date: Feb 2007
Location: Cordoba, Mexico
Posts: 672
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Dear Mary Ann,
I am so sorry to hear about your friend, I can understand how heartbroken you are at this moment. Be sure that all of us in this site will be praying for your inner peace and prompt resignation. On the other hand, my deep congrats on your wonderful daughter. Love always,
Paty
__________________
Dx. June 30th, 2006 at age 43
Lumpectomy rt breast
2.2 cm tumor, 13 nodes all negative
ER-PR+,her2+++
6 FAC
32 Rads
Dx. Lung fibrosis due to radiation
Ended 1 year herceptin in March, 2008
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06-05-2008, 09:12 PM
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#7
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Senior Member
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
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Maryanne,
I am glad you and your friend met and shared so much together. The loss of someone so close is very hard. May the memories give you comfort as time passes.
AlaskaAngel
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06-05-2008, 09:13 PM
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#8
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Senior Member
Join Date: Sep 2006
Location: Houston, Texas
Posts: 624
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I am so sorry about the loss of your friend. I know it will take time to heal, but you and Stephanie's family will be in my prayers. Her art is beatiful.
Congratulations on your daughter's achievements. I know you are prouds.
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06-05-2008, 11:41 PM
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#9
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Senior Member
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
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Maryann,
I am so sorry to hear of the loss of your very dear friend, Stephanie. May her artwork and spirit continue to inspire you in your life.
Congratulations on the outstanding achievements of your daughter!!! I can see how you must feel so blessed and ever so proud of her!!
Warm thoughts to you,
Maryanne
__________________
*** MARYANNE *** aka HARRIECANARIE
1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen
2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy
2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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06-06-2008, 04:16 AM
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#10
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Dear Sweet Maryann..........a real "hero" of mine here at her2support........I follow your posts and progress with SINCERE interest and love because you are such a strong, "go get 'um" and most of all loving soul. You always have so much to share with us and you, going through all you have, can truly encourage us here at her2 support. I am thankful for you.
I am so sorry for the loss of your friend. It's so sad and so hard to understand the "whys" of this life. No matter how hard we try, we cannot figure out why things happen the way they do. I am thankful your friend has left behind those beautiful paintings you describe. I'll have to check those out using the link you posted. Maryann, I ask our Lord to hold you close and give you His peace today. Know that my prayers will surround you today dear friend.
Also I wanted to say how happy I was to hear of your daughter's accomplishments. Such an awesome mom you are to your children. Their accomplishments don't surprise me a bit. You've shown them great love and care where they were able to flourish with self confidence and an "I CAN DO ANYTHING" attitude like their wonderful mom.
Sending my love to you today Maryann and again....I will be holding you in prayer today.
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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06-06-2008, 07:12 AM
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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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Dear Maryann.
I am so sorry for your loss. She was an amazing woman just as you are. Your in my thoughts and prayers my friend!
All my love
__________________
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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06-06-2008, 05:48 PM
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#12
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Maryann,
I am saddened to read about the loss of your friend
Stefanie. She sounds like a very special woman (just like you) you were fortunate to come into each other life.
I wish I could you offer you more - please know that
I feel your pain and saddness and I send you warm
loving hugs.
Hmmm about your daughter....well the apple sure didn't fall from the tree!
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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06-06-2008, 09:58 PM
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#13
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Maryanne - no words can tell you how sad I am for you for your loss. Times like this really bring it home and some days I feel like I can't breathe from the inevitable reality of life and it's challenges...
You on the other hand are a super woman and I am amazed by your fortitude. Wow. However you pull your bootstraps up everyday through everything you have endured is beyond my comprehension! I don't think I could muster even 1/100th of the emotional or physical strength that you have, Lady!
__________________
Brenda
NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)
Nov'03~ dX stage 2B
Dec'03~ Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~ Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~ micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~ micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg
Apr'07~ MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~ Started Tykerb/Xeloda, no WBR for now
June'07~ MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~ MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~ PET/CT & MRI show NED
Apr'08~ scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~ MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~ dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~ Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~ new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~ new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~ 25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.
"I would rather be anecdotally alive than statistically dead."
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06-06-2008, 10:41 PM
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#14
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Very sad to hear about your dear friend who may not have gotten the treatment that might have given her more time. Her talent says a lot about her.
This seems familiar. Did you post a link to her works some time in the past??
I recall some landscapes with the very discreet pink ribbon.
And YOU, my dear one. What is there to say, except that you are bound and determined to be here for your children and see to their accomplishements. Your daughter is a wonder in herself with all those honors!
You all keep each other on your toes.
__________________
"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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06-06-2008, 10:53 PM
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#15
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Senior Member
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,607
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Wow - Maryann - I am so sorry for your loss. BUT... You are a true fighter and you inspire all. xo
Flori
__________________
1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.
3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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06-07-2008, 11:33 AM
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#16
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Senior Member
Join Date: Oct 2006
Location: I live in Christmas, MI - located on the shores of Lake Superior.
Posts: 606
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So sorry to hear of the loss of your buddy. All I can tell you is remember the good times. I'm sure your health challenges only add to the burden. Hang in there - you are a strong woman and inspire many others on this board.
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06-07-2008, 07:41 PM
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#17
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Maryanne,
I'm sorry to hear about you friend Stephanie. I too lost a good friend in January who I meet three years ago at the local breast cancer survivors group. She was also triple negative. She left behind two college-age children.
I'm glad to hear that you're doing better.
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 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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06-10-2008, 05:36 PM
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#18
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Senior Member
Join Date: Nov 2007
Location: New Jersey
Posts: 889
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Sorry to hear about your friend. I know you have been through a lot lately yourself, but from the description of your handiwork it seems like you are a mighty strong woman. God bless.
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dx aug 03 invasive dcis 1 cm
er/pr/her2+
bcs 8/4/03
bcs 8/21/03 0/16 nodes
tx 4x ca 36 rad tam
postmenopausal 06 aromasin
sept 07 biopsy node in neck
muga/pet/cat/bone mets to lungs nodes and liver stage iv
tx hki-272
tx not working switched to taxol herceptin
Taxol not working switched to navelbine
navelbine is causing bad neuropathy
starting gemzar
gemzar quit on me now on Ixempra due to increasing number and size of liver mets
another progression starting tykerb/xeloda
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06-11-2008, 04:49 AM
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#19
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Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
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you're amazing. keep up the good fight.
hugs and love
sarah
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06-11-2008, 06:08 AM
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#20
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Senior Member
Join Date: Feb 2008
Location: Newnan, Georgia
Posts: 80
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Mary Ann, I am so sorry about the loss of your friend. You are so amazing and brave. You give us all so much encouragement. Congratulations on your daughter's accomplishments.
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Nancy
Diagnosed 4/06, age 45
IDC, 3.5 cm, 4/7 positive nodes
Stage IIB
Her2++, ER & PR++
Mastectomy, 4 AC, 4 Taxol & Herception for one year
Radiation
Ovaries out 4/07
Currently taking Arimidex and Zometa every 6 months
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