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07-02-2007, 04:01 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
#1 - If you haven't heard, I've been off line a bit. A nurse spilt water on my laptop. Thank you so very much to Liz's son, Arthur Jr., for fixing it!! It as very corroded and he did an amazing job cleaning it up!! Thank You!!!
#2 - Yes, I am in the hospital again. Seems June is my month to spent on "vacation." The month of June started off with a a fever that of course landed me in the hospital for 2 days. A few days later, my liver enzymes started to climb and the doctor stuck me back in the same room I spent last June in. I had several tests and a liver biopsy that came back inconclusive, even though it was pretty obvious that I have Graft versus Host disease. If I had gotten it prior to the first 100 days after the transplant it would be labeled "acute." Since I got it after the 100 days, it is called "chronic." Either way it is serious. Some gvhd is good because it means my body (host) is fighting the transplant/donor (graft) and the best outcome is that the graft wins. Anyway, I left the hospital with no decisive answer in time to go to Danny's graduation. After 7 1/2 years of being told I'm going to die, there was absolutely no way I was going to miss this huge milestone for all of us.
#3 - The graduation...My sister came over on the ferry and after getting there late, somehow I finagled a chair right on the field (almost everyone else was in the bleachers). It was a beautiful day and it started really nice...then the clouds rolled in and you could hear the rumble in the distance. A Huge bolt of lighting went off just above the field and it began to drizzle, then pour. The kids didn't want to move the ceremony inside, so we stuck it out. My sister ran to my car and got out my beach umbrella; and Mom, Dydee and I huddled under it until the rain stopped (then started again). It was a day not to be forgotten. Dan got accepted to all the schools he applied to. He is going to Farmingdale State for a year (to be close to home/me) and then transferring to Rochester Institute of Technology for Computer Science. I am VERY proud!!
#4 - The day after...I had an appointment for blood work at the oncologist's office, but when I looked in the mirror the day before I was yellow. I called the office and said just admit me...So Mom took me right to the hospital and I've been here ever since. I had another liver biopsy that is being sent off to Seattle for a second opinion. I had several other tests and there are no blockages in my liver or gallbladder. Everything is good except the bilirubin number. The bilirubin has to do with my red cells accumulating in the liver. I started a treatment plan that is 6 treatments of a horse serum (neigh) given every other day. It is an immunosupressant, so I am in isolation in a germ free ward (my 19th floor luxury room with the great view of the south shore of Long Island). I've had 5 treatments so far (they doubled my dose after 3) and the bilirubin number went down then up again. I am not as yellow, but I really need that number to go down. I am on heavy, heavy steroids and now have chipmunk cheeks but I am skinny (for me) everywhere else. I've lost 60 lb since last year this time. My hair is back with a vengeance. Soft and curly and at least 3 inches long. Side note....Dan's hair is very long and he is getting it cut and donating about 14 inches to "locks of Love." They make wigs for kids with cancer.
Other news...Shannon turned 16 on May 21st. Instead a sweet 16 party she opted for seeing her favorite band (Fall Out Boy) on her birthday. I made it a Rock and Roll Road trip and we had a blast! Out trip started at Hershey Park where we spent the day and picked up her best friend Amanda. Amanda was there for a chorus competition (which they won). The next morning the school (including Amanda's mom) drove home and we headed off to our first concert. I will not disclose what state we drove to because my mother would kill me. Concert was great and we hung out afterwards and got some great pictures with the band. The next morning we started out and drove cross an undisclosed state to the next concert. This was her birthday, so I gave out cupcakes to people on line and working at the venue. Shannon got right up to the stage for this concert and it was amazing. One of the guys in the band said happy birthday during the concert and wore her burger king crown for a while on stage. She was thrilled. After the show we hung around and met some of the other bands. I got all tennie and took pictures with a real cutie pie young enough to be my child. The next day we drove allllll day home. She saw the band a few days later here at Jones Beach and then again in Connecticut. If your interested, Shannon and Amanda will probably be in the first row for the Fall Out Boy concert on the Today show this Friday morning. I am praying I can be there, but we have back up if not.
That's all for now. I hope you are all doing well, and I pray for everyone everyday. I know some of you are going through really tough times, and I wish I could be a better friend. Please know I love you.... Maryann
__________________
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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07-02-2007, 04:10 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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Wishing you lots more sneaky adventures to undisclosed states!
Maryann, you are being the best of friends by fighting such a valient fight for yourself. And reading your story of your birthday and graduation adventures blessed me so. I'm pulling for you and am proud to be your cyber friend! 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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07-02-2007, 05:55 PM
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#3
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Senior Member
Join Date: Jan 2007
Posts: 138
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Maryann,
I am so glad you posted. It sounds like you still have your fighting spirit. I will keep you in my thoughts and prayers .
Hugs,
Karen
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07-02-2007, 05:56 PM
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#4
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Way to go - keep jamming on Mary Ann. We are all routing for you here. It was GREAT to hear from you again.
Big hug to you
__________________
Kind regards
Becky
Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia
NED 18 years!
Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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07-02-2007, 06:01 PM
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#5
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Senior Member
Join Date: Sep 2005
Posts: 589
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Maryann,
I've been thinking about you and I'm really happy to see you check in. Great stuff with the kids. Welcome back!
Eric
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07-02-2007, 06:06 PM
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#6
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Senior Member
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
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Hi Maryann,
Your post just made my day. You have been in my thoughts lately and I have been wondering how you have been coming along. I'm so pleased that you were able to make it to your son's graduation. I was a mess at my son's graduation three years ago. I had just had my first brain surgery and was on that awful decadron. But I felt happy to make it there. Then a month later I had to pull myself together and host my daughter's wedding. By then I was in much better shape and on Herceptin, which was a miracle drug for me at that time. I hope that your doctors and your body are able to get the graft versus host disease under control. I know it is not an easy situation. You are a very strong woman and I wish you the best.
Again, great to hear from you again!
Best wishes,
Barbara H.
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07-02-2007, 06:43 PM
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#7
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Senior Member
Join Date: Dec 2006
Posts: 63
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Thanks for taking the time to update us on you. We are all glad to hear from you. Have fun with your kids and I hope your liver and bilirubin levels will normalize.
Hugs,
Anne
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07-02-2007, 07:17 PM
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#8
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Senior Member
Join Date: Nov 2006
Location: West Virginia
Posts: 105
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The things you've shared with us are the things that will last a lifetime and it makes my heart feel so very full to know that you've had the chance and made the effort to do these things with your kids, even though you aren't 100%....these are the things in life that keep us all fighting and wanting that extra day or month or year. These are also the things that make treatments and surgeries bearable.
Lots of love and luck to you M.A.!
Steph C.
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07-02-2007, 07:33 PM
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#9
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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It's always so nice to read your posts! Gosh, you are really living life to the fullest! My kids would be lucky to have such a fun and outgoing mom as you! I'm okay, I don't know that I have the courage to drive into another state for a rock concert! You are amazing!
I am hopeful that your liver will return to its normal functioning and the graft will take. I know it will! You are one tough cookie. I know that you will be here for many more years to share good stories with us.
Hugs and Prayers,
Lexi
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07-02-2007, 07:41 PM
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#10
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Maryanne, it's GREAT to hear from you! I'll be praying the GVHD thing works in your favor, and how could it not?! You're our hero 
<3 Lolly
__________________
Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.
Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
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07-02-2007, 09:47 PM
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#11
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Senior Member
Join Date: Aug 2006
Location: So California
Posts: 223
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Wonderful to hear from you
Maryann:
It was wonderful to see a post from you. Joe posted a couple of times looking for you. I think a lot of us were worried. Your posts, as always, continue to inspire me. I feel like I know you through your words. Please stay in touch. Most of all, please know that my thoughts and prayers are with you. You are a fighter!
__________________
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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07-02-2007, 10:10 PM
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#12
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Glad to see that you popped in to give us an update. I was going to call out the Mounties and start a search!
Was thinking of you, as I went to my high school reunion this past weekend and the hubby of one of my friends has twice been a marrow donor. He has met one of the people he dontated to and that lady was doing well - someone from Kansas!
Will keep praying that the GVHD gets under control and leaves you alone with your new self. It really can be an uphill battle. But look what you have done with the time gained by all this! You had/have a lot to look forward to and this is a big key.
__________________
"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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07-02-2007, 10:49 PM
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#13
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Senior Member
Join Date: Oct 2005
Location: San Francisco, CA
Posts: 96
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Hi Maryann,
So good to hear from you. I was worried that I had not seen anything from you for quite some time. I am sorry that you are back in the luxury suite, but I am hopeful for you that you will be back home soon.
Congratulations on the graduation, we had 2 this year ourselves and they were both very emotional.
What a great mom you are and I second what the others have said too, you really are out there living each moment. You are such a good role model to the rest of us. You go girl!!!
I am sending you wonderful healing thoughts and will keep you in my prayers.
Big Hugs!
Patricia
__________________
age 37 @ dx 7/21/05: IDC 1.5cm, grade III, Stage 1c, ER /PR+, HER2+,
7/29/05: Partial Mastectomy
dx 8/15/05: Papillary Thyroid Cancer
9/15/05: Total Thyroidectomy
A/C X 4 DD, 11 weekly Taxol + Herceptin, + 9 mos Herceptin Alone, 36x Rads, Lupron, Aromasin
7/29/07: 2 years NED :)
8/6/07 Oopherectomy (Lupron no more! :-)
Aromasin & Estring plus Synthroid and supplements
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07-03-2007, 04:29 AM
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#14
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Senior Member
Join Date: Oct 2005
Location: TAMPA, FL
Posts: 568
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What A Wonder Woman You Are...
It is soooo good hearing from you MaryAnne. I was very worried about you.
You are so amazing...in all that you are going through and everything that you still manage to do in your LIFE. LIFE is what you are living and continue to do so MaryAnne.. You are our superwoman indeed.
Good luck to you honey. I will continue to pray for you.
We all love you girl
__________________
Irene from Tampa
1996 - INFILT DUCTAL CAR.W/ LYMPH NODE INVOLVEMENT. ADRIA/CYTOXIN/5FU
1999 - RECURR. TO AUXILA AND 2 TUMORS IN LIVER
TREAT: STEM CELL REPLACEMENT/HERCEPTIN.
2002 - RECUR TO LIVER
TREAT: NAVELBINE, THEN GEMZAR, THEN XELODA.
2004 - TUMORS STILL IN LIVER
TREAT: RFA TO LIVER
STABLE UNTIL
2004 - TUMOR PROGRESSION IN LIVER.
TREAT: RESECT HALF OF LIVER.
2005 - RECURR TO LYMPH NODE OUTSIDE OF LIVER.
TREAT: TAXOL/CARPO/HERCEPTIN. FAILED ON
THIS TRIO. STARTED ON ABRAXANE.
2006 - PROGRESS WITH 2ND TUMOR GROWTH.
TREAT: AUG. BEGAN ON TYKERB/XELODA
TRIAL. CONSIDERED STABLE TO DATE.
2007 - TAKEN OFF OF TYKERB/XELODA TRIAL DUE TO
PROGRESS STARTING TYKERB/AVASTIN.
NOV 2007 - SCANS SHOW PROGRESS TUMOR GROWTH
IN ABDOM. AND TWO NEW TUMORS IN NECK AREA.
BEGAN HERCEPTIN/AVASTIN/TAXOTERE
Feb 08 - Ixempra/Xeloda
June 08 - Her/DM1 trial
"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."
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07-03-2007, 06:24 AM
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#15
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Senior Member
Join Date: Apr 2006
Location: Wilmington, Del.
Posts: 1,126
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It was good to hear from you Maryanne. Keep fighting for your health. The great thing about having kids is that you keep current. I have no kids and I'm clueless. Fall Out Boy? I watched the concert in memory of Princess Diana and recognized Tom Jones. God Bless and Good Health to you.
__________________
MJO
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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07-03-2007, 08:30 AM
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#16
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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You are such an inspiration!!! All of your milestone events with your great family sound like so much fun. Sorry that you are writing from the 'luxury suite', think of it as resting up for the next adventure!!! Thank you for your update!!!
__________________
 Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year
as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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07-03-2007, 10:17 AM
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#17
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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It's wonderful to hear from you again Maryann...you still sound so positive despite all the setbacks. hang in there girl we're all thinking of you!
__________________
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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07-03-2007, 11:51 AM
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#18
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Senior Member
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
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Hey you
Hi Maryann!
Are you connecting with any GVHD support groups? Are they as good as this HER2 group? It is so good to see you! I bet you are happy to have your computer back -- We are all addicted to our lifeline of info and friends -- That should put some more oomph into your defenses!
HUGS,
AlaskaAngel
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07-03-2007, 04:33 PM
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#19
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Hey Maryanne!!!
Great to hear from you. Glad to know that you are loving life with your kids. You are truly amazing. Hope things get better and life keeps "hapnin"!
________
Live sex
Last edited by sassy; 08-22-2011 at 09:21 AM..
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07-07-2007, 04:44 AM
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#20
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Senior Member
Join Date: Sep 2005
Location: melbourne, australia
Posts: 267
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Glad to hear you are still getting up to so much with your kids. You are a legend.
Take care
Christine
__________________
Christine
DX Sept 03 age 40 Stage 2B Grade 3 mastectomy (after 2 prior breast conserving surgeries)
"at least" 2.3 cm 3/12 nodes ER+/PR+ Her2+++
8 FEC. Tamoxifen then Arimidex. Ovaries out.
"late" Herceptin for 2 years (18months after chemo) on HERA trial. finished Herceptin Nov 2007.
Multiple bone mets May 2012 and now liver August 2012.
Abraxne, Herceptin and Zometa.
June 2013 Tykerb, Xeloda and Xgeva
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