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03-31-2010, 04:39 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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Not the news i had hoped for
Thank you all for the birthday wishes....you are all in my thoughts each day although I find it hard to post with all going on.
My Mother turned 82 the 27th, we had a surprise birthday party for her....it was bittersweet as she looked very frail and sad. Today she was admitted to the hospital again due to low blood sugar, confusion and lethargy....until all the tests come back, they dont know if its diabetic blood sugar issues, the liver cancer, another stroke...she has all but stopped eating looks overwhelmed. My Dad continues to have cardiac issues...partially stress i think from all going on.
I had my CT yesterday, the results were not what I had hoped. Only slight decrease in the mediastinal mass that is compressing the pulmonary artery and left bronchus, a few new areas of growth and a large pericardial effusion...guess that explains why i am still short of breath. I see the oncologist next Tuesday and will see what is next on the horizon for me....I would have thought that the pericardial effusion would have shown up on the echo a couple weeks ago, but nothing was said.....wish it was just the leakage from my implant! Getting it drained does not seem like a fun adventure from what I've read....
I keep hoping for my miracle...in this lifetime would be nice. I am sick and tired of the cancer fairy hanging out in my body!
Love to all of you!
__________________
"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
Last edited by Sheila; 03-31-2010 at 04:44 PM..
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03-31-2010, 05:08 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: Not the news i had hoped for
Ach Sheila, S***! My heart aches for you. Keeping you in thought and prayer.
__________________
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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03-31-2010, 06:10 PM
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#3
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: Not the news i had hoped for
Dear Sheila -
Lately life has not dealt you the hand you need to sit back and be able to heal. I believe the level of stress you have been enduring is worse on you than it normally would be.
I know it is hard to think that your Mom may be giving up, and I hope that is not the case and they will find ways to help and ease her.
Seems to be more like the Cancer Devil than the Cancer Fairy at this point. You know lots of fervent prayers are and will continue to be said on your behalf.
Polish up your sword and get ready to banish that cancer.
__________________
"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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03-31-2010, 06:41 PM
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#4
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Senior Member
Join Date: Aug 2006
Posts: 492
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Re: Not the news i had hoped for
when it rains, it pours  I hope you get some rays of light soon. Hang in there and be strong, thinking of you and yours....
__________________
Are we there yet?
Dx 10/05 IDC, multi-focal, triple +, 5 nodes+
MRM, 4 DD A/C, 12 weekly taxol + herceptin
rads concurrent with taxol/herceptin
finished herceptin 01/08
ooph, Arimidex, bilateral DIEP reconstruction
NED
Univ. of WA, Seattle vaccine trial '07
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03-31-2010, 06:44 PM
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#5
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Re: Not the news i had hoped for
Dear Sheila,
I am sorry that the pesky mets aren't letting up. I hope that having the pericardial effusion drained will give you relief right away.
I am also sorry to read that your dear mom is not doing too well. It is so hard to see our parents frail and weak. I just lost my dear daddy yesterday am. He made it to his 80th birthday and we had a nice party for him at home. He was in his hospital bed, but he was at home where he wanted to be.
You and your folks are in my thoughts and my prayers right now.
Lexi
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03-31-2010, 06:55 PM
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#6
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: Not the news i had hoped for
Dear Shelia, My heart really goes out to you right now...that's just too much for anyone person. Talk about "when it rains it pours". I am just at a loss for words...I just can't imagine how difficult this is for you. It just stinks...I'm over here cussing up a storm for you.
Steph is right...it is the cancer devil your dealing with. It gets old real fast! I just don't know how your handling all this...but I sure hope you have a few ppl to call on so you can rest when needed. I will be praying extra hard for your miracle. Keeping you in my thoughts and prayers always.
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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03-31-2010, 07:07 PM
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#7
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Senior Member
Join Date: Jun 2006
Location: South Florida
Posts: 477
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Re: Not the news i had hoped for
Hi Sheila,
I wish I had the right words. You and your family remain in my thoughts and prayers.
Love, Hope, Peace, Carolyn
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03-31-2010, 07:17 PM
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#8
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Re: Not the news i had hoped for
Sheila,
You are in my prayers, as you've been dealing with so much lately.
I also get tired of the cancer fairy. My "goal" this year is to stay out of the hospital. Don't we sometimes wish for better goals in this life ...
xoxo
Joan
__________________
Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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03-31-2010, 07:57 PM
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#9
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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Re: Not the news i had hoped for
Hi Cupcake! I'm sorry to hear about all you're going through. You are long overdue for a break and some rest. I pray that good news comes your way soon. You hang in there. Love, Bill
(Lexi, I'm sorry to hear of your loss. You and your family are in my prayers. Love, Bill)
__________________
For Nicola
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03-31-2010, 08:13 PM
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#10
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Senior Member
Join Date: Feb 2008
Location: South East Wisconsin
Posts: 3,431
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Re: Not the news i had hoped for
If you have a route to get a new biopsy, might be helpful. Either for chemosensitivity test or just the typical Her2 ER/PR stuff. Could open up hormonal avenues.
Cyclophosphamide/Cytoxan hasn't been explored. Abraxane has been shown to work after Taxol.
And there is the often overlooked Pemetrexed:
http://her2support.org/vbulletin/showthread.php?t=44488 |
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03-31-2010, 08:36 PM
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#11
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Senior Member
Join Date: Jul 2008
Location: New Boston, NH
Posts: 275
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Re: Not the news i had hoped for
Sheila, I'm sorry life isn't treating you so kindly right now. I pray that things turn around for you all soon! Hang tight and big hugs to you!
__________________
-Sarah-
Jan '07 felt lump (PCP "thought" it was a cyst)
Nov '07 "bloody nipple discharge" (OB-GYN "thought" I had fibrocystic breasts and told me to take 400 IU's of Vitamin E)
Note: Mother was dx w/BC in 2004 (ER/PR+ & HER2+) & mets to brain April 2007 (she passed away June 17, 2008)
2/1/08: Biopsy Dx: DCIS (age 34)
2/22/08: Surgery R-side Mast
2/28/08: 1st Path Rpt Dx: IDC 1.8cm tumor & DCIS 2.1cm
2nd Path Rep DFCI - IDC (0.9cm) & DCIS (2.1cm)
Stage 1b/Gr 3; ER+(5%), PR+(2%), HER-2+++
5/5 nodes NEG; Clear Margins
Chemo: AC 4 rnds (1st one 3/31/08) finished 6/2/08
TH (Taxol/Hercepin) 12 weeks (1st one 6/25/08) finished 9/8/08
Herceptin 9 mos (every 3 weeks) finished 6/8/09
BRCA 1/2 NEG
Bio: Age 39, married to James 1999, 2 boys 12 & 10 yo
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03-31-2010, 09:17 PM
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#12
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: Not the news i had hoped for
I am sorry to read your news. It is an understatement to say you and your family are having a hard time right now.
I know the cancer thing gets old after awhile, but I hope you find the strength to carry on and find out what kinds of treatment are going to help you.
I hope the promise of spring renewal brings you and your family new beginnings and hope for the future.
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03-31-2010, 09:40 PM
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#13
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Re: Not the news i had hoped for
My Dear Sheila,
I am only away a day and a half and you have a birthday and I missed it
I send you belated birthday hugs and love.
I feel your concern and saddness regarding your Mom.
It is difficult to watch our parents age. I wish your news was better also. You are a strong fighter and right now you have so much you are coping with. Try to have some moments for yourself and get that much needed rest. I hope this low period will reverse for you quickly and that pain in the #@% fairy falls on her face.
I keep you in prayers each day.
Love You,
Jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
Last edited by Jean; 03-31-2010 at 09:46 PM..
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04-01-2010, 01:33 AM
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#14
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: Not the news i had hoped for
Sheila
I don't know what else to say that hasn't already been said.I am sorry for your loss and the tough hand you have been dealt all round.
You are a true warrior and will find a way through this again. You still have T-DM1 in your arsenal and I hope it becomes your magic bullet soon.
Hugs and love
Ellie
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04-01-2010, 02:32 AM
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#15
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Senior Member
Join Date: Sep 2005
Location: MN
Posts: 731
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Re: Not the news i had hoped for
Sheila,
I'm sorry to hear of all that's continuing in your life. You are dealing with so much with your parents illnesses and your own treatment as well. I pray you can all find relief soon. You are in my thoughts daily.
I've had the thoracentesis to drain the pleural effusion done 4 times. I'm wondering if the avastin has caused this since it has caused you so many other issues. My pe enlarged a little when I was on avastin. When I was on taxotere I developed pe in both lungs. I had to have each side drained twice over the course of one summer. They also tested for cancer cells in the fluid and thank God there were none. They think it was caused by the taxotere. I still have some pe in each lung but very minimum. Each time they drained the fluid they took off about a liter and it made a huge difference in my breathing. No the procedure wasn't 'fun' but it was such a relief to have the fluid gone. One thing I remember well is I had 3 different doctors who did it. With one doctor it was horrible, with the other doctors it wasn't bad at all so I think the technique and skill of the doc can make it a very different experience. Be sure you get a good one.
You are in my thoughts and prayers... I hope you'll have a chance to check in after you seen your oncologist next week and let us know the plan. Pam
__________________
Pam
6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
9/02 stage IV bone mets femara
1/03 taxotere/herceptin/aredia
6/03 herceptin, aredia & faslodex
1/04 navelbine, herceptin, aredia
2/05 herceptin/aredia
7/05 xeloda/herceptin/aredia
3/07 xeloda/tykerb/aredia
5/08 taxol/avastin/aredia
2/09 gemzar/herceptin/zometa
7/09 Taxol/Carbo/Herceptin, zometa
10/09 navelbine/herceptin & zometa
2/10 herceptin & tykerb & zometa
4/10 add xeloda &aromasin
10/10 dx with dermatomyiositis triggered by cancer
11/10 restart herceptin, tykerb, zometa
12/10 surgery-place rod in R femur to stabilize bone
1/11 radiation to R femur - 20 tx
2/11 2nd surgery - rod in Left femur
2/11 tx eribulen -- suspended dx brain mets
3/11 brain mets wbr 20 tx
4/11 halaven; discontine 8/11 not working
8/11 radiation to left femur 20 tx'
8-9/11 rad to lower spine
9/11 abraxane/herceptin/zometa
9/12 xeloda/herceptin/zometa
12/12 ablation of liver
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04-01-2010, 04:30 AM
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#16
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Re: Not the news i had hoped for
Sheila, I want to add my love and prayers for you. May the clouds lift and the sun shine on you. 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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04-01-2010, 05:24 AM
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#17
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Re: Not the news i had hoped for
Dear Sheila,
My heart is really sad for you right now...I can only imagine how sad yours is. With all this going on with your parents, that in itself, is so tough to endure much less dealing with your health issues.
I wish there was something I could say to take it all away. I truly do. Unfortunately, there isn't. I can offer you my prayers for comfort and peace to hold you and that I will do.
Sincere love and prayers I send.
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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04-01-2010, 06:30 AM
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#18
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Senior Member
Join Date: Mar 2009
Posts: 508
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Re: Not the news i had hoped for
Good morning, Sheila. I'm sending along my prayers too. Wish with my whole heart that I could do more. Hope you can feel our love surrounding you.
Barb A.
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04-01-2010, 06:53 AM
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#19
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Senior Member
Join Date: Feb 2008
Location: Newnan, Georgia
Posts: 80
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Re: Not the news i had hoped for
Sheila, offering many prayers and support that things will improve. I am sure it is so hard dealing with your parents illnesses and your own. Sending big hugs your way!
__________________
Nancy
Diagnosed 4/06, age 45
IDC, 3.5 cm, 4/7 positive nodes
Stage IIB
Her2++, ER & PR++
Mastectomy, 4 AC, 4 Taxol & Herception for one year
Radiation
Ovaries out 4/07
Currently taking Arimidex and Zometa every 6 months
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04-01-2010, 07:48 AM
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#20
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Senior Member
Join Date: Sep 2005
Location: Grand Rapids, MI
Posts: 1,516
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Re: Not the news i had hoped for
Sweetie, I am SO sorry you are going through this...please know that you are in my thoughts and prayers. Take care.
Rhonda
__________________
Rhonda
Dx 2/1/05, Stage 1, 0 nodes, Grade 3, ER/PR-, HER2+ (3.16 Fish)
2/7/05, Partial Mastectomy
5/18/05 Finished 6 rounds of dose dense TEC (Taxotere, Epirubicin and Cytoxan)
8/1/05 Finished 33 rads
8/18/05 Started Herceptin, every 3 weeks for a year (last one 8/10/06)
2/1/13...8 year Cancerversary and I am "perfect" (at least where cancer is concerned;)
" And in the end, it's not the years in your life that count. It's the life in your years."- Abraham Lincoln
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