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Old 08-21-2008, 05:53 AM   #1
madubois63
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Hi from beautiful stony brook hospital...

I'm not sure if I told you about my fall several weeks ago, so forgive me if this is a repeat but you need to know this part to get to why I'm in the hospital again...

I've been on heavy steroids for my liver/iron overload. The steroids (beyond making me paint/remodel/clean and eat everything in sight) atrophied my muscles to the point I was using a cane for balance and falling at least once a week. Anyway, I was mopping my kitchen like a crazy loon. I hate shoes and get yelled at all the time to wear something on my feet when I go outside. I had on my daughter's flip flops. My foot caught hold of a wet pot on the floor and next thing I know I a doing an all out split (just like a 15 year old cheerleader). My hands are in front of me holding my legs from spreading out those last 2 inches. I can't get up on my own. I screamed for my son, but he couldn't hear me. He had his door closed, the ac on and he was on the computer. I just stayed there struggling for several minutes until my hand was able to get a dry spot and I was able to drag myself forward and pull a chair over. I got up on the chair and just sat there and cried for 15 minutes thanking the good Lord that nothing was broken. I actually didn't feel any pain for 2 days after wards. I felt sore on my left side from my ankle to my arm, but it wasn't bad. Anyway about a week later I noticed a bump on my tram flap scar and thought I had herniated the muscle again. I showed my doc' and since I was getting a PET/CAT the following week, no big deal was made of it. It showed up on the scan as a thinning of the abdomen wall and possible apses. I woke up Tuesday morning with a baseball sized thing protruding from my stomach. I had my regular appointment for phlebotomy that morning and showed my nurse. I was running a low grade fever, so they sent me to the ER. ER did their tests and confirmed that I had an apses and it needed to be drained. They admitted me, drained it and have kept me here now for the third day. They have poked and prodded and given me all kinds of antibiotic, anti-bacterial and anti-fungal stuff. They now say I have to wait until the cultures come back before they can send me home. I told the doc that I am checking myself out TODAY against all recommendations and that they better figure out what medications they want me on. I had no infections until I got here. And always get sicker when I am here. I gave them the 3 days and now I am walking!!!! I live 5 minutes away and go to the cancer center (which is right next door) all the time. IV can be given outpatient at the cancer center. Of course the hospital does not want me to leave, but there really is no reason why I have to sit here, get sicker and wait for cultures to come back in 4 or 5 days. So thanks for reading my vent. If it's not one thing with me, it's another....
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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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Old 08-21-2008, 06:09 AM   #2
Vi Schorpp
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Oh MaryAnn

I don't know what to say. I hope you are discharged today and that they can figure out what's going on. I'm with you, the longer your stay in the hospital the greater your chances of catching something else.

I was complaing 4 years back about having all the holidays at my house. I enjoy this immensely, but once in a while I like to go out for the holidays. My older sister decided to celebrate one of the holidays at her home. That morning, as she, too, was mopping the floor, she fell and broke her arm. (Some people will do anything to get out gracefully from hosting these events.) To make a long story short, holidays are back at my house!

Keep in mind, I hosted Christmas Eve this past year with 45 people, and Christmas day with 63 people. These are not small, intimate gatherings --they're family. But I'm grateful to have all these people in my life, so the effort is worth it.

Keep us posted, and be well.
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3.5 cm, 0/19 positive nodes
Stage IIA
Her2++, ER & PR++
RB Mastectomy, 4 AC,
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Old 08-21-2008, 07:16 AM   #3
Jean
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Maryann,
Has anyone informed you that your off the cheer leader squad?

You are too much.....please get home (where you belong)...

I felt so bad reading your post...wished I was closer
to you...
Now put those mops down girl and get someone else to do those floors....

With Love,
jean
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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
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Old 08-21-2008, 07:53 AM   #4
PinkGirl
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Smile

Geez Madame DuBois, it's hard to keep up with you!
No more cheerleading practice on a wet floor, please.

Hope you are home soon - it sounds like you will be.
Try to take it easy (if that's possible) and keep the
updates coming. Good luck with this one.
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Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++

Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09



" I yam what I yam." - Popeye

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Old 08-21-2008, 08:13 AM   #5
AbbyDawg
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We're all sending lotsa prayers for you to get up and outta da joint and get back home where you're safe ... ah, er, well ... where you're back home! And with just the right drugs too. Get some percoset to wash down with those antibiotcs.

AbbyDawg

PS Dr. Patricia Coyle (neurologist) at Stony Brook saved my life in the 1990s and one of my oncologists here in MN did her fellowship there at Stony Brook. I love LINY and I love New Yorkers ... so you are moving to the top of my list FAST!
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Old 08-21-2008, 08:58 AM   #6
chrisy
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good lord!

i'll never mop the floor again.

You know yourself better than anyone, and know that sometimes a hospital is no place to get well. Hope they check you out but I know that if they don't, you'll take matters into your own hands.
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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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Old 08-21-2008, 12:02 PM   #7
sarah
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you are amazing!!!! how you keep your sense of humor is a good lesson to all of us!
get well, get out of hospital and let the kids clean up - it's time they learnt about the real world!
hugs and love
sarah
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Old 08-21-2008, 12:22 PM   #8
StephN
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Unhappy

My Dearest!
By all means go home, but be easier on yourself.

Next time make sure you have one of those "wheelie" things that people with broken legs/ankles use, when you want to do housework.

My friend Karla wrecked BOTH ankles slipping down her newly carpeted stairs a few years back. She learned to do a lot on that wheelie thingie. Probably kept her from breaking her NECK, like I hope you never do.

She also has to be bugged about wearing shoes, and she has now decided it is better to wear something on her feet than not. I think the new puppy (that is not well trained) may have something to do with that as well ...

Hope the absess will heal up quickly and never again show it ugly head.
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"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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Old 08-21-2008, 12:50 PM   #9
Mary Anne in TX
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Maryann, couldn't you learn to play elec. guitar or something noisy but safer???? I'm so sorry you had to "check in" again, but surely do know how you feel about getting back home! Leave the mopping to someone with better footing and put that super brain and energy into something that keeps you on your feet or seat! ma
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MA in TX.
Grateful for each and every day....

Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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Old 08-21-2008, 03:03 PM   #10
WomanofSteel
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Maryann, by all means do get out of that place. Home is where we all belong. No more dancing around with the mop. We know you are wonder woman, but take it easy girl!
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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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Old 08-21-2008, 04:33 PM   #11
Bill
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Mmm, Mmm, Mmm, I guess I gotta come up there, Madame Dubois and teach you how to mop a floor. Rule number 1-don't wear flip flops! Rule number 2- don't listen to music, because then you start twisting those little Greek hips of yours all around, and the next thing you know, the mop goes one way and you flip-flop the other two ways, right? Rule number 3- get someone else to mop. You get home and do what works best for you. You have an awesome anti-bacterial regimen and diet at home. You don't need to be in that hospital. Love ya, Bill
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Old 08-21-2008, 04:44 PM   #12
madubois63
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Thanks for the smiles everyone. I AM HOME!! I finally was released at 5:30. I am all smiles to be home...I'll write more about my adventure either tonight or tomorrow. Got to get settled and eat dinner. Lots of love...Maryann
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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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Old 08-21-2008, 05:25 PM   #13
karenann
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Maryann,

I am so happy you are home. Hope all is well with test results, etc.

Karen
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Old 08-21-2008, 05:57 PM   #14
Joan M
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Maryann, I'm glad you're finally out of the hospital, or otherwise that place with a lot of germs. You'll feel better at home anyway. Best, Joan
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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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Old 08-21-2008, 07:16 PM   #15
Mary Jo
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Geez Maryann...I'm sore after only reading your post ... I can only imagine how you must feel. Now I know why I scrub my kitchen floor on my hands and knees...I'm closer to the ground to start with.....probably safer.

Glad you're home NOW..........GET HEALTHY.

Mary Jo
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"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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Old 08-21-2008, 09:19 PM   #16
ElaineM
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Talking Hi from beautiful stony brook hospital

Wow !! I am very glad you are at home too.
Please try to stay out of trouble from now on. I know it is hard, because I am the independent type too. Please try to stay out of that nasty place called a hospital as much as possible. Take care.
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ElaineM
12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
http://her2support.org/vbulletin/showthread.php?t=52807
14 Year Survivor
http://her2support.org/vbulletin/showthread.php?t=57053
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Old 08-22-2008, 03:54 AM   #17
DanaRT
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Maryann,

Glad you're home. Let us know about the result and I hope you're healing quickly. No more mopping in flip-flops.

Dana
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-Dana-

]
Diagnosed - Nov. 2, 2007 at 45
Lumpectomy - Nov. 13, 2007
Tumor 1.2 cm
Stage 1 Grade 3
ER/PR - Her2 +++ (3.8)
Taxotere/Carboplatin/Herceptin- 6 rounds
Neulasta
Radiation 33 treatments - will be done 6/6/08
Herceptin through 12/08
12/07 MUGA 61%, 4/08 MUGA 60%, 7/08 MUGA 64%
three wonderful daughters, a terrific husband,
Life is Good
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Old 08-22-2008, 04:28 AM   #18
dhealey
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Maryanne, Glad your home. Sending good thoughts and prayers your way. I wouldn't mop the floor any more.
__________________
Debbie in North Carolina
Diag 10/2006-high grade invasive ductal carcinoma- mastectomy L breast
2.5 cm tumor ER/PR pos-Her2+++
4 rounds A/C, 4 rounds Taxol
Herceptin every 3 weeks until Jan. 2008
6/18/07 prophylatic mastectomy R breast
8/2007 started aromasin/stopped arimidex (side effects)
12/07 stopped aromasin due to side effects (now what?)
Finished herceptin 1/8/08
started tamoxifen for 2 years then will switch to femera
allergic to tamoxifen started femera 4/2008
June 20, 2008 portacath removed
Learnig to live life to the fullest!
Stopped Femera due to side effects
July 28, 2008 start trial for breast cancer vaccine
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Old 08-22-2008, 07:36 PM   #19
Marlys
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Maryann,
Something about your description of your rather excessive activities around the house reminds me of Mary's friend, Magda, (I think that is her name) in "Something About Mary", holding the couch up with one hand and vacumning with the other. Please try to modify that behavior and, as a nurse, I agree, hospitals are dangerous places. Stay away as much as possible!!

Love & hugs,
(and prayers)
Marlys
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Old 08-22-2008, 08:45 PM   #20
notamrnpsn
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Stoneybrook

Glad you are home. like MareJo said., On your hands and knees, don't have so far to fall, Jeanette
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