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03-13-2008, 12:52 PM
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#21
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Senior Member
Join Date: Feb 2006
Location: Watkinsville, Georgia
Posts: 356
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Lolly ~ I echo so many others. I hope that the rads do the trick on those pesky little devils. Will it be dangerous for your skin since you have had rads before? Will they do something different?
You have always been so positive and supportive of many, many people who visit this site. I remember when I first visited how you, Christine, Lisa and Sandy inspired me that so much is possible with this disease. Take care and bless you.
Ruth
__________________
[/SIGPIC]~~~~~~~~~~~~~~~~~~~~~~~~~~~
Diagnosed 6/03 nursing daughter
Dose dense A/C 4x
Modified rad mast 8/03
IDC; 3 cm; 10+/16 nodes; ER/PR-; Her2+++
Weekly taxol w/Herceptin (off label) 12x's
40 weeks Herceptin
Radiation 33x
Reconstruction w/ implants 05 & 07
NED
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03-13-2008, 01:46 PM
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#22
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Senior Member
Join Date: Oct 2006
Location: Louisville KY
Naples FL
Posts: 665
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Lolly
My prayers are with you and I will be sending healing thoughts your way.
Take care and keep us posted.
patb
__________________
patb
Diagnosed June, 06, Stage I, Grade3, ER+PR- Her2positive, No Nodes. A/C X 4. Radiation 33 with boost, Herceptin every two weeks until Nov.
07, Arimedex for 5 years. Mugas and Echo and chest xRay. Bone scan of whole Body, and Back of Brain and spine MRI.
CT scan of Lungs every six months
due to two small places. December
2009, bone scan due to bone pain.
Follow up test in 2010.
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03-13-2008, 02:47 PM
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#23
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Lolly I hope the rads do the trick and chemo won't be necessary. I'll be keeping you in my thoughts and prayer's.
__________________
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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03-13-2008, 05:25 PM
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#24
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Senior Member
Join Date: Dec 2005
Location: Michigan
Posts: 230
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Lolly,
Ditto, ditto, ditto.
I am sorry to hear this and will keep my prayers a coming.
Mary
__________________
Mary
Diagnosed 11/04 @39yrs. young
Stage IIB
2.5 cm, ER/PR- Her+++, grade 3
Partial Mast., 1/3 pos. node
1/05 full node dissection
4 A/C 4 Taxol DD, Herceptin 1 yr.
30X rads.
BRCA Negative
NED
Hope is the thing with feathers
That perches in the soul,
And sings the tune without the words,
And never stops at all -Emily Dickinson
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03-13-2008, 05:27 PM
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#25
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Oh Lolly, I am sorry that you are having some progression of those nasty skin mets. I am hopeful that the rads will do the trick.
Praying for you now.
Hugs,
Lexi
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03-13-2008, 05:48 PM
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#26
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Senior Member
Join Date: Dec 2005
Posts: 274
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Dear Lolly,
Know that you are in my prayers and will continue to be. I will be thinking of you and please stay as strong as you are.
With Love,
Liz J.
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03-13-2008, 06:05 PM
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#27
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Thank you all for your loving words, they mean so much to me 
Yes, I hope that I won't need more chemo, at least for awhile, and will definitely keep you all posted as I go along.
Ruth, to answer your question:
The rad onc and team are being very precise in mapping out the field so no previously radiated areas get a dangerously cumulative dose. Also, the field will be shallower so the ribs, heart and lungs won't be hit. At least that's the plan. As we all know, nothing is guaranteed in this journey we're all on, and this is a dangerous game but we feel we must fight fire with fire!
I'm keeping positive thoughts 
<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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03-13-2008, 07:53 PM
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#28
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Lolly, praying that Zapping those mets will do the trick! Keeping you in my thoughts and prayers.
__________________
Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
14 YEARS NED!
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03-13-2008, 08:49 PM
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#29
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Senior Member
Join Date: Jun 2006
Location: Bradenton,FL
Posts: 977
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Dear friend Lolly,
Sending you powerful met zapping hugs from Mississippi,
Marcia
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03-13-2008, 09:38 PM
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#30
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Senior Member
Join Date: Sep 2005
Location: Ontario, Canada
Posts: 752
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Lolly;
I'm so sorry to hear this news. Do make sure they shield areas from the radiation spread.....ie. head, jaw, etc. I have a lot of faith in radiation and will be anxious to hear how all is going with you. You will be in my thoughts and prayers.
Cathy
__________________
Cathy
Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Genetic testing show BRCA1 VUS
Nice! My hair came back really curly. Hope it lasts lol. Well it didn't but I liked it so I'm now a perm lady
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
April 20, 2018 BC mets confirmed, ER/PR+ now Her2-
Questions about the possibility of ovarian spread and mets to bones so will be tested and monitored for these.
To begin new drug Palbociclib (Ibrance) along with Letrozole May, 2018.
Genetic testing of ovarian tumour and this new lung met will take months.
To see geneticist to be retested for BRCA this week....still BRCA VUS
CA125 has declined from 359 to 12 as of Aug.23/18
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03-14-2008, 09:47 AM
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#31
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Senior Member
Join Date: Sep 2005
Posts: 556
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Lolly,
I am thinking of you and wishing you all the best.
Julie
__________________
Diagnosed in Sept 2004 while pregnant with the second child. Stage 3b, tumor 4.5cm, 4 auxillary and supraclav node positive. Her2+++ FISH 9.4 and er-,pr-.
Had dose dense neoadjuvant AC,Taxol then mastectomy,radiation+xeloda+Herceptin.
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03-14-2008, 09:58 AM
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#32
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Dear Lolly -
Unhappy to hear ... Those skin mets are sure stubborn! Those chemos are BAD boys. Did not do their job.
So - Death Rays to Darth Mets. Get those Light Swords out and go for broke.
I have a friend who had some Death Rays to skin mets and it seems to have worked.
Healing energy and love coming your way.
__________________
"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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03-14-2008, 05:34 PM
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#33
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Ahh rats Lolly. Let's hope this new plan gives you some breathing room and knocks those nasties back.
__________________
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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03-14-2008, 05:46 PM
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#34
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Lolly,
You have always been such an inspiration to me and I just want you to to know that you arein my thoughts and prayers. I hope that the rads will take care of the skin mets and that you won't require any additional chemo. You are in my prayers.
__________________
Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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03-14-2008, 05:59 PM
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#35
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Senior Member
Join Date: Sep 2005
Posts: 77
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Lolly, you are most certainly in my thoughts.
Hoping those rads blast away those nasty buggers.
Stay strong and take care.
Carol
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03-14-2008, 06:22 PM
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#36
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Senior Member
Join Date: May 2007
Location: DFW area (TX)
Posts: 431
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I mentioned this to Lolly in a private message, but has anyone read "The Making of Herceptin"? In that book someone treated skin mets with an unusual treatment not usually used for bc...that worked for that individual. An injection into the mets. It was not Herceptin, but something else. Can anyone help out?
TRS
__________________
Terri, spouse of Ruth, Dallas/Ft. Worth area
Ruth dx 05/01/07 (age 50) Filipino
multifocal, several tumors .5 -2.5 cm, large area
Breast MRI showed 2 enlarged nodes, not palpable
100%ER+, 95%PR+, HER2+++
6x pre-surgery TCH chemo finished 9/15/7 Dramatic tumor shrinkage
1 year Herceptin till 6/08
MRM 10/11/07, SNB: 0/4 nodes + Path: tumors reduced to only a few "scattered cells"
now 50% ER+, PR- ???
Rads finished 1/16/08
Added Tamoxifen,
Finished Herceptin 05/08
NOW is the time to appreciate life to the fullest.
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03-14-2008, 09:25 PM
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#37
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Senior Member
Join Date: Dec 2005
Location: Alexandria, VA
Posts: 1,055
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Crud. This disease makes me angry. Hope the rads take. Best wishes, Bev
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03-15-2008, 06:22 AM
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#38
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Senior Member
Join Date: Oct 2005
Location: Saratoga Springs New York
Posts: 136
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Lolly, You have always been one of my original "rocks" to lean on for the past 4 years and Thank You. It's so hard to tavel this long, bumpy, twisted road that we are all on. But like you told me just a couple of weeks ago, we are in it for the long haul. That really hit home for me and I keep those words with me all the time. You are so strong and positive you will continue the journey no matter how rough the road. We all will. Take care and keep us posted. Sally
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03-15-2008, 05:15 PM
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#39
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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I am sending my prayers from Central Texas.
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement （600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
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03-15-2008, 07:25 PM
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#40
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Senior Member
Join Date: Jan 2007
Location: Adelaide, South Australia, Australia
Posts: 144
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Lolly - my thoughts and best wishes are with you. Lets hope those big guns do the job for you. Belindaxxx
__________________
Belinda
- Diagnosed 3 Jan 2007, Stage IIb, Mastectomy and axillary clearance 10 Jan 07, 6 of 19 nodes affected, multi-focal cancer, HER2 positive. Second mastectomy (prophylactic). Chemo - AC 3 months, Taxol 3 months - then radiation 5 weeks.
- Aug 2011 - Diagnosed with Stage IV mets to lung, sternum and 12 or so thoracic nodes - Rads to Sternum, then weekly abraxane and herceptin for 12 weeks.
- May 2012- good scans - all nodes still about normal size, hole in sternum repairing, lung tumour 'obliterated'.
Ongoing herceptin every 3 weeks. Bloods still all good! Life good!
- March 2013 - recurrence - tumours in lungs and mediastinum (coughing up blood) - immediate radiation treatment to right lung and mediastinum, still on Herceptin, and 3 months of Vinoralbine - stable for a little while!
- Coughing and breathlessness started again September 2013, treated as radiation-induced fibrosis (which can be seen on scans - albeit stable). ie puffers, steroids
- January 2014 - cough becomes bloody again, scans show big mediastinal tumour wrapped around and choking the life out of my right main bronchus, radiation deemed off limits as my lungs are hypersensitive to radiation (measured by existing damage from 2013) .....................- ie I am in the 5% of people likely to suffer severe radiation damage to the lungs that they warn you about before starting treatment! (so special! :) )
- Started chemo Feb 2014 - continuing Herceptin (continuous since Aug 2011), with Carboplatin and Gemcitabine. Discontinued Gemcitabine because of se's. Starting cycle 5 Herc/Carbo 5 May 2014.
- Meantime.....coughing and breathlessness increased to SCARY levels with racing heartbeat that won't slow down, breath that won't come back, even just walking to the bathroom or up 3 or 4 steps.
- ICU from May 5 2014, collapsed right lung due to tumour, small pulmonary embolism (left), tumours growing in mediastinum left and right, dvt lower right leg
- Plan seems to be bronchoscope next week to see if tumour can be lasered and stent inserted in right bronchus to reopen air access to lower parts of right lung. If that is successful might be able to have brachytherapy to worst tumour, otherwise no more options for external radiotherapy.
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