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Old 07-09-2008, 07:06 AM   #1
madubois63
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latest update on Madubois63 for those that are worried - thanks

Hi all - It's time for an update. We took some big hits this past year, but think it it time to celebrate life and get together and EAT and laugh until our sides hurt. Some of us have had set backs and some of us are doing great. Time to stare...And I really miss Stephanie more that anyone can know!!!

Update on me: Last June/July my liver rejected my bone marrow transplant and I turned green with glowing yellow eyes. I had to have a horse serum treatment over two weeks in the hospital. And fortunately it worked (really my only option). My son graduated high school. I checked out of the hospital (all green), went to the graduation then checked right back in. No one was stopping me and they knew it!!! Things got better and I had a great some doing things I haven't done before. I walks in a field of sunflowers and walked across one of the Hudson Bridge with Steph. Went to Montauk and Eastern villages I haven't visited in ages with Liz and Carole. Come Fall, Theo (my BC onc) finds 2 new malignant lesions on my lung again. My lung is also filled up with fluid again, so the thoracic surg
eon goes in drains over 4 liters of fluid (2 more weeks in the hospital), seals me up again with talc and sends me home. That was early December. I got a great surprise, The Her2support.org site that I have been pretty active with invited me to go to San Diego, CA (Never went to Cali) on an all expense paid trip for the Scientific Cancer Research Conference. I Planned my trip for 10 days and had 2 days before and two days afterward of just me time. The conference was amazing!! I got to meet people from on line that I've been in contact with for years. I also got to meet Joe and Christine. They helped my Maryann when her tumor spread to the brain. I hooked them up to talk and I know it helped. During the HUGE conference I got to me the doctors that found/isolated the HER2 gene and the Doc that invented Herceptin! It was a huge moment for me and not only did I cry, but the doc did too - he kissed us and thanked us.They are making a Hollywood moving about the making of Herceptin. I'll keep you informed when I hear more..Anyway the last day of the trip, I realized my eyes were yellow again. I called my leukemia on and they said come straight home and go to emergency. It was a weekend and I refused. I knew if I went back in the hospital I would get sicker. I had an appointment with my bc onc that Monday so they looked at me and ordered tests, Then I went to the other onc and got more tests (liver biopsies). I had too much iron in my liver from having over 70 blood transfusions for the bone marrow transplant. So now instead of getting blood, I have to give several units (less than a pint) a week and get a shot in order to circulate the blood and help stimulate my own cells to do the right thing. So far everything is working very well. I have to take VERY high amounts of steroids. I look like a chipmunk, but I am always burning calories so I lost about 12 pounds. I eat a lot, but have to watch everything with iron in it an also all carbs. The steroids have made me temporarily diabetic again. My numbers are huge and I probably should have had to gone to the hospital but I've been able to control it somewhat. These are minor things, because the steroids also give me huge amounts of energy (and a small beard). We replaced the carpets in my, my daughter's room and the hallway. We painted Shann's room, my room and the bathroom. I am so happy and the results. I also scrubbed the living room and am now making my way to the kitchen. They are weaning me off the steroids slowly. I hope I get everything done before I feel like my lazy old self again. Oh, and the pool is clean!!!! It hasn't been opened in 3 years because of me being sick....I am going swimming................................Oh, one other thing, the steroids have completely atrophied my muscles. I have take several fall and am using a brace and a cane. I had x-rays of the knee taken the other day - no break, but a bad twist. Liz and I started phsyical therapy and I have to get ready now. Love to you all. Have annivaersay, Happy birthday, and my deapest wished to everyone going through so much life...I love you all




Love and kisses - 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 07-09-2008, 07:28 AM   #2
PinkGirl
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Thumbs up

Hi Madame DuBois,
Thanks for the update, you Warrior Woman you!!!!
You sound happy and very busy. I need someone
on steroids to come to my house.

Stay well!!!
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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

My Photo Album
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Old 07-09-2008, 07:46 AM   #3
Mary Anne in TX
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Thanks for the update and the great adventure story, Maryann. No one lives on the edge so well as you! Best wishes for an uneventful summer and fall! 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 07-09-2008, 10:07 AM   #4
Mary Jo
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I always enjoy hearing from you Maryann....Thanks for taking the time to update our group. We love and care about you deeply.

Hugs....

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 07-09-2008, 12:17 PM   #5
hutchibk
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Thanks for the update, Maryanne. Keep on keeping on steroid woman! LOL. Be careful with the falls, we don't need you in traction!

Pink - I think you might have just hit upon a brilliant business idea!
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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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Old 07-09-2008, 12:34 PM   #6
MJo
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Long Island must be wonderful in the summer. Enjoy. MJO
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IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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Old 07-09-2008, 12:47 PM   #7
Soccermom2006
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Good to hear from you Madame! Always enjoy hearing your joy filled voice!
Marcia
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Old 07-09-2008, 01:26 PM   #8
rinaina
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Wow Maryann, a dull life you sure don't lead. You remain an inspiration to so many and thank goodness nothing keeps you down for long. So glad you got to go to Calif and have some additional alone time just for yourself. Keep on truckin' for no one does it better then you.
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~Rina~
Dx:3/06 had a lumpectomy April 19, 2006
Her2+ er/pr- Stage I Grade 3 tumor size 1.4 cm, node negative
AC 4 dense doses
34 radiation treatments including booster doses
receiving herceptin every 3 weeks since late August 2006 for 12 months
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Old 07-09-2008, 04:24 PM   #9
Patb
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WOW. Thanks for the update. I was wondering
how you were. patb
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Diagnosed June, 06, Stage I, Grade3, ER+PR- Her2positive, No Nodes. A/C X 4. Radiation 33 with boost, Herceptin every two weeks until Nov.
07, Arimedex for 5 years. Mugas and Echo and chest xRay. Bone scan of whole Body, and Back of Brain and spine MRI.
CT scan of Lungs every six months
due to two small places. December
2009, bone scan due to bone pain.
Follow up test in 2010.
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Old 07-09-2008, 04:28 PM   #10
Leslie's sister
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update

Thanks for the update Mary Ann. I think it is safe to say that each and every person on this site knows you and wants to hear on a regular basis that you are well. I will continue to pray that you keep the beast in check!

Lisa
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Leslie's Sister (Lisa)
Diagnosed 5/17/06
Left breast Stage II
5 cm. Her2Neu+++, ER-, PR-
1 positive node out of six,
double mastectomy 6/9/06;
TCH started 7/12/06
last chemo 10/25/06
herceptin ended 6-11-07
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Old 07-09-2008, 04:50 PM   #11
dhealey
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Thanks for checking in, you do like to live life on the edge, but you do it so well. Best wishes to you. With all you new found energy, if your ever in North Carolina, my house needs a good cleanig.
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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 07-09-2008, 05:10 PM   #12
Bill
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Madame DuBois, it's so good to hear from you! You are such an inspiration to so many! You keep on rollin'. Thanks for taking time out from your busy schedule to keep us posted. Love ya, Bill
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Old 07-09-2008, 05:19 PM   #13
DanaRT
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Great report.
Congratulations to your son for graduating High School.
Your trip to CA sounds fabulous. I am anxious for the movie about the doctor who created Herceptin and has improved our chances of survial.

Sounds like you're very positive and not willing to be kept down for long. Having so much work done around the house would be refreshing.

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 07-09-2008, 08:51 PM   #14
Paty
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What a wonderful human being you are Maryann!! All my love to you and best wishes for a great summer!

Paty
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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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Old 07-09-2008, 09:35 PM   #15
Jackie07
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Thanks for the update. Now we know why they use "Anabolic steroids" when discussing about those athletes who use the drug to build up muscles. Because they need to distinguish the steroid that is causing the atrophy of the muscle. Take care and thanks again for sharing.
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http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

Advocacy is a passion .. not a pastime - Joe
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Old 07-09-2008, 11:29 PM   #16
harrie
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Hey SuperWoman! Thanks for taking the time to update us Maryann! You are amazing!
Love you tooo...
Maryanne
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*** 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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Old 07-10-2008, 12:27 AM   #17
Catherine
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Madame Du Bois,

Thanks for the update. Glad you are able to call so many of your own shots. So who is going to star in the Herceptin movie?

Hugs to you,
Catherine
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Catherine


Found my own lump in the shower
April 2006 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 2.3cm
Chemo first: AC/Taxol over 16 weeks
Bilateral mastectomy Sep 06
33 rads after the surgery
1 year of Herceptin completed Dec 07
15 years and no recurrence as of April 2021
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Old 07-10-2008, 10:36 AM   #18
tricia keegan
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Smile

Always good to hear from you Maryann and even better to hear you're in such good spirits. Maybe you should apply to audition for the leading lady role in that herceptin movie
Enjoy the swimming, I've been swimming every day for years although I did cut down a bit while on chemo but I love it. It not only helps you get physically fit but realease's those endorphins too so you get to feel great!!
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Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 07-11-2008, 06:13 AM   #19
Joy
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I have said it before...

and I will say it again...you never cease to amaze me Mary Ann! Wow! You are so tough and such an inspiration and I am jus praying and praying for success with treatment and fun with family and friends and just feeling good. Thank you so much for the update.
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joy

dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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Old 07-11-2008, 07:15 AM   #20
madubois63
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Thank you everyone for the warmest of wishes!!!! I had blood taken yesterday again and it went really well. My counts were really good, and we are lowering the steroids just a bit this week. I still have a few doors to sand and stain so I don't want to come off the steroids too quick - lol! My house truly looks amazing.

Dana - my son graduated last year. He finished his first year with a 3.96 (love to brag).

Bill - Thanks again! Hope your getting out and doing lots of fun stuff...

Jackie - I really don't understand the steroid thing. There are so many different types. I'm not getting muscle, I am loosing it. The falls I take are really weird. It's like I have no muscle for a quick second and I'm down on the ground???? I have the little extra hairs growing on my chin, but I am Greek too...

On a funny note, I'll tell you about one of my falls. Every morning my dog and I walk to the pool and then sit on the swing and just have quite time together. Last week, I wanted to flush the filter so I pulled out the hose and started dragging it to the pool. It got snagged so I pulled harder, stepped back and my dog was under my feet....I filled up in the air flat, like Charlie Brown would do. I landed flat on my back, with the hose running all over me and the dog in my satin pj's. I swear my dog was laughing! I was laughing and we rolled around in the water for a while. I am sure it looked as funny as I felt!
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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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