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04-23-2008, 06:41 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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update from madubois63, Tiptoe, Tex and the chicken without a name...
Just so everyone knows, I did not disappear off the
face of the earth, but I have been recuperating from
the trip. I kind of noticed my coloring was a little off my last day in California. I called my doc's office and
left a message before I got on the plane. Delta
treated me like a queen. I got a wheel chair ride every
inch of the way. Then I slept for 2 days and saw the
bc onc Monday morning. He ordered a CT and a
sonogram of my liver and did a lot of blood work. I
don't have a definitive diagnosis as of yet, but I know
I am in the middle of another bout of graft verses host
disease of the liver. My bilirubin is very high, and I am
itchy everywhere from the inside out. I see my
leukemia oncologist tomorrow morning. I'll probably
be put back on high dose steroids and anti-rejection
medications - which means I go back on insulin again.
Tiptoe, Tex and the chicken without a name came
with me for Herceptin, but the onc didn't treat me.
Holding off until my liver is under control. They have
been having fun in my daughter's collection of
American Girl mini-rooms. She has four and each is a
different scene. Tiptoe and Tex especially liked the
shoe store. Tex liked the little boots and Tiptoe
worked behind the counter for a bit. The chicken
without a name really liked the outdoor patio with
gazebo and they all had fun in the Manhattan apartment and the horse stables. If all goes as
planned, tomorrow we'll all go down to the "Port" and
get tiny tee shirts (this is a tourist town) then take the
ferry to Connecticut to see my nephews. My sister and
her hubby went to Jamaica for my sissy's 50th
birthday. My daughter and mom are taking care of
the boys, and it's my turn to help out. I think the
"gang" will have fun visiting... Lets see if the pics
work? If not, I'll send them to Joe to post for me...
__________________
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; 04-23-2008 at 06:46 PM..
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04-23-2008, 07:17 PM
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#2
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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I'll have you in positive thoughts til you get your verdict! The trio will be your good luck and good pals for the next few days. Lots of love maryann. ma
__________________
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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04-23-2008, 08:21 PM
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#3
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Senior Member
Join Date: Jul 2007
Location: Northern California
Posts: 764
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Thanks for posting the pictures. They're fun to look at. I hope you are feeling better soon.
__________________
DX 02/01/07
2.5 cm, Er/Pr-, Her2+++
18/20 Nodes
03/07 CT & Bone scan - Clear
AC x 4, Taxol x 4, Added Herceptin
Radiation until 09/07
Herceptin every 3 weeks until 06/08
01/10/08 local recurrence -IBC
01/28/08 CT & Brain MRI - clear
02/08 - Navelbine & Herceptin
05/08 -MRM
05/08 - Gemzar & Herceptin - didn't work
09/08 - Hyperthermia rads
03/09 - Tykerb/Xeloda
05/10 - Tram flap to fix wound
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04-23-2008, 09:43 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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Madame Dubois, it's good to hear from you. The last few days, i've been thinking about you and wondering where you've been, but I kept telling myself, "aaahh, she's just resting up from her trip". I love your pictures! Please keep us posted about about the other issues. Love and prayers, Bill
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04-23-2008, 11:05 PM
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#5
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Senior Member
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
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Maryann
Welcome back!! Loved all those cute pics you posted!!
Hoping to hear some good news from you on your results.
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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04-23-2008, 11:40 PM
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#6
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Dear Maryann -
So Sorry you are having another bout. You were doing well till the last day when fatigue was catching up with us.
I saw my Physician's Asst today for some various issues, but nothing like you have.
Glad the "kids" are having fun with you and they did not get too rambunctious so you could rest.
By the way, that is me and Christine posing with the trio at the Tin Fish restaurant - not in an American Girl mini-room. We got some good and not expensive Mahi Mahi fish tacos there. The convention center is in the background (a small portion of it!).
__________________
"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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04-24-2008, 04:39 AM
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#7
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Senior Member
Join Date: Oct 2007
Location: Australia
Posts: 309
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LOL! Maryanne - those pics are so great!
Who are those 2 beautiful young women lunching with our friends!?  LOL! So glad you were all able to make it to the Convention and really hope you get some good news soon sis.
Blessings
Hermiracles
__________________
2003 L/DCIS –> LWE: High G./Comedo - 6 nodes clear 6 wks Rx
04/07 2 miracles born ~ very grateful
06/07 Susp areas L/b
09/07 Stage 2 bilat. mastectomy R/ b. clear extens DCIS/IDC Paget’s 8 nodes clear ER(<5%) HER2+++ CT clear
11/07 Portacath - FEC
15/11/07 Stage 4 Emerg op - hip replacemt #NOF bone mets H/Taxotere
12/07 Rx to 'spots' on spine/R/hip/femur 3wkly H
2008 H+T mets to rib/sternum? Aredia CT clear! Cont. H + Aredia 07/08 1 wk Palliative Care - mets to lungs + ?1 to brain
09/08 Stop H complete Epirubicin 1wk PC new brain mets
10/08 2wks WBR 1wk PC 22/10/08 Tykerb/Xeloda 12/08 6 CEREBRAL METS COMPLETELY GONE! Rib mets down to <1cm.
01/09 Tumour markers normal! Rx to L/arm
03/09 LUNGS CLEAR (ALL NODULES GONE!), brain clear, liver clear. Bones stable! ~ THANK YOU GOD
07/09 Repeat CT Scan ~ ALL organs clear apart from bones which remain stable. I walk in gratitude.
***************
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04-24-2008, 10:14 AM
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#8
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Senior Member
Join Date: Jul 2007
Location: Canada
Posts: 2,193
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Madame Dubois,
I am so sorry to hear that you've got more "stuff"
to deal with. I hope you regain your strength soon
and are well.
Thanks so much for the pictures. My favourite, of
course, is my little Tippy working at the cash in the
shoe store. Looks like she just fits behind the counter.
I have been thinking about the chicken without a name
and thought maybe it could just be named "The Chicken".
Good luck with the tests. I will keep all my fingers and toes
crossed for good news. Please keep us all posted.
__________________
PinkGirl
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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04-24-2008, 11:11 AM
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#9
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Maryann
I can imagine the fatigue after the trip, without the liver issues...take care of yourself...I am so glad you went...met Christine and Joe, and Steph....it is an honor....
About the chicken's name...why does the name Chicken Sh*t come to mind? Must be a midwest thing!!!! It seems appropriate...its where we all are , have been or will be in this disease, the tests, scans, chemos etc.....
Rest my dear!!!!
__________________
"Be kinder than necessary, for everyone you meet is fighting some kind of battle."
Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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04-24-2008, 11:41 AM
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#10
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Sheila I just love that name suggestion and hope it's taken on board lol..
Thanks for the update and pics maryann but sorry to hear you've even more to deal with.
__________________
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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04-24-2008, 03:44 PM
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#11
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Senior Member
Join Date: Sep 2006
Location: East Central Illinois
Posts: 89
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Maryann, sorry you are having problems again. Your courage helps others that are also dealing with many problems.
Thanks for the pics of the creatures. I have looked at other pics of the hamster before and actually thought the hamster was real! I feel goofy now.
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04-24-2008, 05:41 PM
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#12
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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My 2 cents worth, I like the sound of "Tiptoe, Tex, and the Chicken". I have a yellow parakeet whose name is "yellow bird".
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04-24-2008, 10:53 PM
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#13
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Senior Member
Join Date: Feb 2005
Location: LI, NY
Posts: 660
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Thanks everyone!! I am still yellow and no treatments will happen until after all the tests are in. I had the CT scan this morning and saw the leukemia onc today. I have the sonogram on Monday and see the BC onc that same day. I want to get SOMETHING started. I've been thinking about a name for the chicken without a name and thought since Tiptoe is of Asian decent Cwan (pronounced quan) might fit. Also, since the chicken is from Aves, Avery might be good too.
So, I'd like to take a vote. So far we have:
Chicken
Chickensh*t
Cwan
Avery
Yellowbird
Henrietta
Henney
Attila the Hen
Tilly
Poulet
Buttercup
cluck (clucker)
strut
birdchick
chickbird
chick chick
Diego
If you have any other suggestions, please let us know. Otherwise, pick one from the list!!
Steph - My daughter loves the chocolate!! Thanks!!! and I really loved the mahi mahi tacos. I didn't think I would at first, but I really did.
The pic with Steph and Christine just showed a piece of the convention center like Steph stated!! The first day there, someone said one of the meeting rooms was in Mexico. I thought it was a joke, but you really could see the mountains of Tijuana!!
Becca - I won't tell you when I FINALLY realized that Tiptoe wasn't real. I am the biggest goof ball!! I kept wondering how he was being sent in the mail and how cruel this was...
Just quick update on the little guys. Today, after all my appointments, we all took the ferry to Connecticut. It was a grand day!! Tiptoe had to take her sweater off after while, it got so hot. They all had a great time sitting outside in the sun and running around the deck (until the dogs came out). Got some pics. I'll try and add them tomorrow. I am tired now - it was a long day.
Love to 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; 04-25-2008 at 06:05 AM..
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04-25-2008, 04:26 AM
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#14
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Hi Maryann! I'd name the little guy (?) Diego....but then, I'm raising an 8 year old and live in a pretty goofy world at times! Whatever....the trio brings great joy every time I see the little rascals. Oh, to be so well traveled as they are! It's inspired me to buy a camera! I've given one to my kids and they take pictures for me, but I've lost 2 in the last several years and had given up on trying to hold on to one! See the great pictures of Christine, Joe, Steph, the little ones, and you have inspired me to "try again" to keep up with one!
Maryann, take care and have the best available weekend! I love your stories and adventures. Wish you would write some fiction of your "upsidedown" life! Much love, ma
__________________
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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04-25-2008, 05:20 AM
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#15
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Senior Member
Join Date: Nov 2005
Location: Lincoln, Rhode Island
Posts: 371
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Dear Maryann,
I hope and pray everything works out! You have all my thoughts and prayers and love. Take good care of yourself.
Love Karen
__________________
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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04-25-2008, 06:04 AM
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#16
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Senior Member
Join Date: Feb 2005
Location: LI, NY
Posts: 660
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Diego is a great name, but remember the chicken is a female!!! I think of the little boy cartoon Deigo. My nephews love him!! But we can certainly add it to the list!!!
__________________
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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04-25-2008, 06:28 AM
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#17
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Senior Member
Join Date: Mar 2007
Location: CHARLOTTE NC USA
Home town (ECUADOR) South America
Posts: 542
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Diego is a male name ...unles the chicken is a baby rooster ....we can use the name diego ...
I lke chick chick or
chickenchest
__________________
Lily Diag April/06 5 months after give birth my son Max stage IV mets on liver (5 tumors) 38 year old, her2+++ and ER+PR+ from32 nodes 4 positives mastectomy right breast chemo before surgery herceptin/carboplatin/taxotere ,clear and surgery have radiation 20, `& then herceptin and tamoxifen NED until Aug/07 body only then 'n June 04-06-07 .1 lesion of 1.6 cm on cerebellum ...novalis ,open sugery 5m.m brain met again novalis, 4mm.In the liver. Waiting 2 months now 3 tumors enroll on T-MCC trial start first infusion Nov 5/07 at Dec 17 scan show one tumor despair the 2nd and 3th diminish Doc said great results until March/08 ct scan show progression 03-05-08 start tykerb & xeloda
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04-25-2008, 08:00 AM
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#18
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Senior Member
Join Date: Oct 2005
Location: Boise, Idaho
Posts: 758
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Maryann,
I love the pictures. I had so much fun with TipToe & Tex and now you get to add "chicken with no name" to the experience. By the way, she could be called Diega as changing the "O" to "A" changes the sex of the noun. However, I have no preference. I am sorry to hear you have not been feeling well and will keep you in my prayers.
Love & hugs,
Marlys
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04-25-2008, 08:21 AM
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#19
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Senior Member
Join Date: Mar 2007
Location: CHARLOTTE NC USA
Home town (ECUADOR) South America
Posts: 542
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you are right Marlys ...is change from diego to diega ...and also sound nice diega !!!
__________________
Lily Diag April/06 5 months after give birth my son Max stage IV mets on liver (5 tumors) 38 year old, her2+++ and ER+PR+ from32 nodes 4 positives mastectomy right breast chemo before surgery herceptin/carboplatin/taxotere ,clear and surgery have radiation 20, `& then herceptin and tamoxifen NED until Aug/07 body only then 'n June 04-06-07 .1 lesion of 1.6 cm on cerebellum ...novalis ,open sugery 5m.m brain met again novalis, 4mm.In the liver. Waiting 2 months now 3 tumors enroll on T-MCC trial start first infusion Nov 5/07 at Dec 17 scan show one tumor despair the 2nd and 3th diminish Doc said great results until March/08 ct scan show progression 03-05-08 start tykerb & xeloda
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04-25-2008, 09:07 AM
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#20
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Senior Member
Join Date: Jul 2007
Location: Canada
Posts: 2,193
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I like Diega, it's a nice name and it would add some diversity to our group - to go along with our Chinese Hamster
and our Texan.
__________________
PinkGirl
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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