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03-02-2010, 05:31 PM
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#1
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Going through a difficult time
Thank you to all of you have kept me in your thoughts and prayers this past month…it has been a difficult road for me.
It started with a treatment change due to serious shortness of breath, progression of disease in the chest nodes and axillary nodes, and a drop in my Muga…to 46%…last one was 63%. Now I am under the care of a cardiologist, taking Coreg to strengthen the heart, & double the B/P med Lisinopril as Avastin has been added again to the Herceptin. I truly questioned the Herceptin with my muga drop, but both the oncologist and the cardiologist feel it was the combo of herceptin and Tykerb, since I have never had a problem on Herceptin in over 7 years.
To add to the difficulties, my Father suffered a heart attack at the beginning of February, and was life flighted to a major heart center in the State Capitol for immediate angioplasty. He is soon to be 86, but has always been so healthy & youthful…truly just gave up his motorcycle riding days this past year. Saying goodbye to him when they were preparing to load him in the helicopter was overwhelming on my Mom, myself and my whole family….we were blessed that by the time we traveled via car to the hospital 3 hours away, he was in ICU and truly a new man.
As if this wasn’t enough, 1 week later, my Mother collapsed at the grocery store…vomiting blood, taken by ambulance to the local hospital. After 5 days in ICU, she was transported via ambulance to Loyola in Chicago where she was diagnosed with Stage IV Liver Cancer with mets to the lungs….at her age and health status, traditional chemo is not an option. She will start on Sorafenib this Friday. We were hoping that it was possibly breast cancer mets to the liver, as she is a 22 year survivor, but learned it was a new primary in the liver. The prognosis is 3-4 months, with the chemo, but then we all know that prognosis is not an exact science. It was so heartbreaking so see her and my Dad receive this news…I have always said they have been married almost 64 years, they are truly a team….when one starts a sentence, the other finishes. My prayers are that she does not suffer, she has been my role model for so many years on my breast cancer journey. Regardless of age, we are never prepared to lose a parent.
The rest of the month was filled with my little granddaughter Jasmine, going in for her every 6 month back surgery, and ending up in ICU with respiratory problems and she is now back on oxygen and a pulse ox alarm at night to keep her O2 level up. She had been totally off the oxygen for 4 years, so this came as a big setback. She continues to be a fighter, and has taught me so much about acceptance and unconditional love. She is truly a miracle child.
My eighth year on this journey occurred mid February, and I am living proof that there is hope for those who are battling metastatic disease….I am now a 7 year Stage IV survivor….still in treatment, probably always in treatment , but a survivor no less.
This past month has taught me to be thankful for each day, as none of us knows what tomorrow will bring. They say God doesn’t give us more than we can handle, but at times lately I have felt he is pushing the limit.
Until my life resumes some sort of normalcy, I wont be posting much, but know that you are all in my heart and in my prayers, and you are so much a part of my journey and my survivorship. I appreciate all the prayers and thoughts! Thank you ALL!
__________________
"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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03-02-2010, 05:40 PM
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#2
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Senior Member
Join Date: Jun 2009
Location: Mississippi
Posts: 253
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Re: Going through a difficult time
Dear Sheila,
My heart goes out to you. Yes, I so very much understand what you are talking about. You continue to be in my prayers!
__________________
4/09 suspicious lump in left breast
5/09 biopsi lead to diagnosis ER/PR -
Her2+.Grade 3,full masectomy left breast,sentinel nodes clear,Stage 1
6/09 Adriamycin + Cytoxan 4 treatments (every 3 weeks) followed by Taxol + Herceptin, 1 treatment weekly for 12 weeks, followed by Herceptin for 40 weeks
MRI Brain 4/10 clear
CT Body 4/10 clear
PET Body 2/11 clear
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03-02-2010, 05:49 PM
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#3
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Re: Going through a difficult time
Dear Sheila,
Please know that you and your wonderful mom and dad are in my prayers right now.
Gentle Hugs,
Lexi
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03-02-2010, 06:13 PM
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#4
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Senior Member
Join Date: Feb 2007
Location: Cordoba, Mexico
Posts: 672
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Re: Going through a difficult time
Dear Sheila,
Thanks for taking time in the middle of this roller coster to let us know how you are doing. I am so sorry to hear that you are going through so much. I would have collapsed by now with so many bad news, but the force of love for the rest of our family keeps us standing up and fighting. I cannot say much, but I wanted to let you know that I often think of you and that I was also surprised that I had not seen yours posts neither here not in fb. May God keep you out of su much pain very soon. I send a big hug to you and your family. Sending you love.
__________________
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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03-02-2010, 06:15 PM
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#5
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Re: Going through a difficult time
Oh Sheila, your basket is so full! Seems like an earthquake occurred in your family disrupting all peace and serenity. I know your mom must be amazing because you are. I send my love and prayers for each one of you. I find myself coveting the hours of each day myself now. Thank you for continuing to share so much with us and giving us hope in so many ways. 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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03-02-2010, 06:19 PM
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#6
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Re: Going through a difficult time
You know that I am always thinking about 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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03-02-2010, 06:21 PM
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#7
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Senior Member
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
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Re: Going through a difficult time
Wow, Sheila, you have really been given too much to deal with. Please take care of yourself as much as you are able. I hope that you have some friends close by who can help. I was so grateful when you were willing to help me sort out my issues for being approved for Tykerb with Herceptin. Please know that you have been and are in my thoughts everyday.
I do appreciate the time and effort that you gave to shield some light on what you have been dealing with because so many of us here care about you. Again, try to take care of yourself as much as you are able. We understand why you won't be writing much, but you will continue to be in our thoughts and prayers.
Kind regards,
Barbara H.
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03-02-2010, 06:44 PM
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#8
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Re: Going through a difficult time
I'm sorry Sheila. Definitely a full plate.
Prayers and love...
Mary Jo
__________________
"Be still and know that I am God." Psalm 46:10
Dx. 6/24/05 age 45 Right Breast IDC ER/PR. Neg., - Her2+++ RB Mast. - 7/28/05 - 4 cm. tumor Margins clear - 1 microscopic cell 1 sent. node No Vasucular Invasion 4 DD A/C - 4 DD Taxol & Herceptin 1 full year of Herceptin received every 3 weeks 28 rads prophylactic Mast. 3/2/06
17 Years NED
<>< Romans 8:28
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03-02-2010, 07:30 PM
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#9
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Senior Member
Join Date: Apr 2008
Posts: 1,477
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Re: Going through a difficult time
Sheila,
Thinking of you each and every day.
Love,
karen
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03-02-2010, 07:35 PM
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#10
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Senior Member
Join Date: Feb 2006
Posts: 437
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Re: Going through a difficult time
Sheila. My prayers are with you and you family.
You have so much on your shoulders. I pray to give you strength through thes difficult times.
__________________
Linda
Dxed Stage IIIC May 05, 12 pos nodes
er/pr -neg,Her -pos
LVI
Right partial mast & partial axillary dissection-June14,2005
Right modified mast-no clear margins- June 30, 2005
DD AC x4
Taxotere X4 with Herceptin
Rads x 35( 5 fields )
Left prophylactive mast( atypia & hyperplasia found ),
put on Tamoxifen x 1 yr; D/ced due to endometrial thickening
bilateral recon (saline implants)May 06
Nipple recon July 06
metformin 2010
removal of implants due to severe encapsulation, insertion of gummies 2013
Reclast Q yr
NED!!!
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03-02-2010, 07:42 PM
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#11
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Senior Member
Join Date: Oct 2006
Location: Southern California
Posts: 900
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Re: Going through a difficult time
Dear Shelia,
You have always amazed me with your strength and I continue to be in awe of you. Please know that I am thinking of you and sending positive thoughts your way.
Take care,
__________________
Gerri
Dx: 11/23/05, Lumpectomy 12/12/05
Tumor 2.2 cm, Stage II, Grade 3, Sentinel Node biopsy negative
ER+ (30%) /PR+ (50%), HER2+++
AC X 4 dose dense, Taxol X 4 dose dense
Herceptin started with 2nd Taxol, given weekly until chemo done
then given every 3 weeks for one year ending on March 16, 2007
Radiation 30 treatments
Tamoxifen - 2 yrs (pre-menopausal)
May 2008 - Feb 2012 Femara
Aug 2008 - Feb 2012 Zometa every 6 months
March 2012 - Stop Femara, now Evista for bone strengthening
********** Enjoy the little things, for one day you may look back and realize they were the big things. - Robert Brault
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03-02-2010, 08:01 PM
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#12
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Senior Member
Join Date: Jun 2009
Posts: 343
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Re: Going through a difficult time
Dear Shelia,
You are such an inspiration. My thoughts and prayers are with you and your family.
__________________
Vicky
Age 47, TN, Diagnosed 05/09
Her2+, ER/PR-, Stage III, 2 tumors = 1 8cm tumor
Grade 3
Sentinel Node Biopsy-speck present in 1 node
Completed 3 month clinical trial of weekly Herceptin and 1000mg Tykerb daily
Tumor no longer present
Right mastectomy and lymph node removal 09/25/09
No cancer present at time of surgery, none in lymph nodes
Start TCH 10/15, every 3 weeks for 4 months followed by radiation
Finished chemo 01/28/10-YEAH!
Herceptin every 3 wks until end of June
Radiation begins 03/01, 6 1/2 weeks
Radiation complete--Yeah!!
Developed lymphedema after radiation
In hospital for 4 days with pneumonia:(
Herceptin done! 06/24/10
Port Removed 07/08/10
Still in PT for lymphedema and mobility issues
DIEP Reconstruction 05/11
I can be changed by what happens to me, but I refuse to be reduced by it~~Maya Angelou
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03-02-2010, 08:04 PM
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#13
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Senior Member
Join Date: May 2006
Location: Mesa, Az
Posts: 219
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Re: Going through a difficult time
Prayers and love to you, as your life takes on so many different journeys at once.Wishing you Peace and good times of reminiscing with your mom, and enjoying the days one at a time.
Take care
Darita
__________________
dx 1/06 IDC 2cm 38 at dx
2/06 L mast nodes 3/9+ SNB neg ER-/Pr - her2 + Stg 4 liver/pelvis
3/06-9/06Taxol/Carbo/zometa/Herceptin
3/07 6 brain mets WBR down to c-2
4/07 osteonecrosis jaw
1/08 mri new 9mm lesion right lower side
2/08 gamma knife 1 lesion 11/08 regamma
10/09 latent rad necrosis to brain met,
1/20/10 crani: lesion necrosis w active cells continue her add tykerb
1/11 NED just Ingrown toenail! YEAH GOD
8/11 Tykerb, herceptin weekly, elevated her2 levels, negative scans
oct -march 11 new neuro deficits lower legs
3/12 2 spinal metsTykerb, Herceptin
04/12 4050cGY rads T 2-4 & T7-9
5/12 Brain,cervical lumbar clear/thoracic slight decrease
10/12 t 2-4 shrunk t-9 grew start Xeloda, 02/13 stop xeloda,5/13 on metformin, decadron, Tykerb, iv and IT herceptin 5/30/13 total #11 #2 of 80mg dose weekly.
9/13 100mg of IT her, IV hern, 750 mg tykerb, 3mg dec.
last Mri T--3 SHRUNK t7-9 shrunk no edema. Left shift in CBC bone marrow BX negative.
10/13 Ct has shown Double left ureters with stones/cysts in them, after 3 births and lots and U/S iit takes cancer to figure out you have 2 smaller ureters going into 1 kidney!
12/13 Mri brain no new lesions, cervical and lumbar arthritis.
Tspine lesion at T3 stable, T 7-9 GROWTH lots of pain
1/29/14 HIHO HIHO its off to Neuro surgery I go
Life is Good when you wake up in the morning and take a breath and know that God has given me another day.
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03-02-2010, 08:12 PM
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#14
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Senior Member
Join Date: Jan 2009
Location: Colorado Springs, CO
Posts: 430
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Re: Going through a difficult time
Sheila,
It is so good to hear from you but I just HATE all that is going on in your life. You are so strong, I know you will get through all that you are facing, but it is still . . . as Brenda would say . . . "crap on a crapstick".
Once again I find myself thanking Joe and Christine for the creation and maintenance of this terrific website. If it weren't for them, I never would have had the chance of meeting you, getting to know you & being inspired by you. I'm so grateful that we are in this journey together. I will continue to keep you and your family in my thoughts and prayers.
~Alice
__________________
9/15/08 (age 52) - Mammo: calcifications
9/22/08 - Biopsy: DCIS, grade 3. ER,PR status: Pos. in 75-90% of tumor cells.
10/01/08 - Ob/Gyn appt.: found complex, mostly cystic mass on right ovary - 11cmx12cmx 8cm
10/15/08 - Hysterectomy & Oophorectomy, Lumpectomy: Cyst on uterus, not ovary - all was benign. Breast - 5 of 6 bad margins. 2 Sentinel Lymph nodes removed, both negative. Stage 0, Tis, N0
12/11/08 - Mastectomy & DIEP reconstruction: Surprise! 2 cm Invasive DC, grade 2 found. One benign internal mammary lymph node. Stage 1, T1c, N0, all clean margins. ER+ (Proportion Score = 2/5, Intensity Score = 2/3) and PR+(Proportion Score = 3/5, Intensity Score = 2/3)
HER2 score = 3+
1/09/09 - Oncotype DX: Recurrence S/core of 60 !?!?! ER status is NEG!! PR staus is NEG! HER2 score = 12.2 (still positive, greater than 11.5 is positive).
1/20/09 - Started chemo: TCH
5/26/09 - FINISHED CHEMO!
1/05/10 - FINISHED HERCEPTIN!
1/22/10 - Port-a-catheter removed!
3/07/18 - Still NED
9/10/23 - Still NED
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03-02-2010, 08:16 PM
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#15
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: Going through a difficult time
This is just too much Sheila. Hugs to you and your entire family. You will be in my prayers tonight. I hope everyone in your family will be in better condition soon.
By the way, have you considered Co Q 10 for your heart function? Maybe your cardiologist would know about it.
I take it everyday. I think some of the other members might be taking it too.
Take good care of yourself during this difficult time.
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03-02-2010, 08:24 PM
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#16
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Re: Going through a difficult time
Sheila,
My thoughts and prayers are with you and your dear family at this time.
all the best
caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08
Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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03-02-2010, 09:24 PM
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#17
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Senior Member
Join Date: Jun 2006
Location: Bradenton,FL
Posts: 977
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Re: Going through a difficult time
Dearest Sheila,
just want to add my prayers to the others. You are an amazing warrior,daughter/mother/grandmother & friend!
Gentle hugs,
Marcia
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03-02-2010, 10:07 PM
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#18
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Senior Member
Join Date: Sep 2005
Location: South Dakota.
Posts: 621
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Re: Going through a difficult time
Hi, Sheila,
Praying for you and your family who have been through so much; one thing right after another. It is heartbreaking, as you said, to see your mom and dad so ill; knowing how much they love one another and are hurting for each other's suffering. They are so blessed for having had such love. Someday they will be together forever and their love will go on and on.
Hope the little one is getting stronger. It is so painful when children are ill. We pray she will soon be stronger again.
Bless you, Sheila. Praying for healing and strength for you and your loved ones.
__________________
Blessings and Peace,
Barbara
DX Oct 02 @ age 52 Stage 2B Grade 3 Mastectomy
"at least" 4.5 cm IDC 1+node ER+61% /PR-
Assiciated Intraductual component with Comedo Necrosis
Her2+ FISH8.6 IHC 2+
5 1/2 CEF Arimidex
Celebrex 400mg daily for 13 months
Prophylactic mastectomy
Estradiol #: 13
PTEN positive, "late" Herceptin (26 months after chemo)
Oct 05: Actonel for osteopenia from Arimidex.
May 08: Replaced Actonel with Zometa . Taking every 6
months.
Accepting the gift of life, I give thanks for it and live it in fullness.
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03-02-2010, 10:29 PM
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#19
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Senior Member
Join Date: Jul 2007
Location: Northern California
Posts: 764
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Re: Going through a difficult time
Shelia, I am so sorry you are having to deal with so much. I am adding my prayers that you are given strength to walk through this difficult time in your life.
I feel as if you are getting hit at every angle with your own health issues and now those of your parents and a grandchild. God will get you through it one day at a time.
Hugs,
Tonya
__________________
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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03-02-2010, 10:55 PM
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#20
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: Going through a difficult time
Shelia, When you say it's been a difficult road, that is an understatement. I just don't know what to say...I just feel so bad for you. You have to be on major over load at this point...this is all too much for any one person. It won't be easy but please try to take care of yourself thur all this. I will be keeping you and your family in my thoughts and prayers.
Big hug!
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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