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09-23-2008, 07:55 AM
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#1
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Senior Member
Join Date: Oct 2007
Location: Australia
Posts: 309
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Palliative Care... this time 'multiple' brain metastases...
Hello my Sisters and Brothers.... I'm home again from another stay in Palliative Care... which again has been good for me. It's just unfortunate that the first time I was there they found 'numerous' lung metastases and this time 'multiple' cerebral metastases! Not much 'good' news but the care is very good!
I'm still getting around with my wheely walker and enjoying spending time with hubby and our beautifull bub-bubs.
On the 3rd October I am booked to go to Brisbane for raditation therapy to my (whole) brain. We may be there about 2 weeks and then home hopefully to commence on Tykerb/Xeloda -- thats the plan actually - we'll see what else the Higher Power has planned for us! ;-)
I've looked a little bit into the difference between whole brain vs (is it?) cyberknife... the Docs reckon there is some reason why whole brain would be better for me and besides the wait for cyberknife is a lot longer and I dont know if I have that much longer??? One day at a time :-)
I read here everyday when I can - dont get much chance to post - but I really appreciate everyone's courage and knowledge and humour!
Have had an interesting time processing some (extended) family dramas - coming out the other side - it helps spending time with old friends and listening to my bubbas laugh as the wind blows on their faces.
Blessings all
Hermiracles
PS Im still trying to figure out how to set up a photo album here, for myself - if anyone has any quicktips that would be great! LUVYAS!
__________________
2003 L/DCIS –> LWE: High G./Comedo - 6 nodes clear 6 wks Rx
04/07 2 miracles born ~ very grateful
06/07 Susp areas L/b
09/07 Stage 2 bilat. mastectomy R/ b. clear extens DCIS/IDC Paget’s 8 nodes clear ER(<5%) HER2+++ CT clear
11/07 Portacath - FEC
15/11/07 Stage 4 Emerg op - hip replacemt #NOF bone mets H/Taxotere
12/07 Rx to 'spots' on spine/R/hip/femur 3wkly H
2008 H+T mets to rib/sternum? Aredia CT clear! Cont. H + Aredia 07/08 1 wk Palliative Care - mets to lungs + ?1 to brain
09/08 Stop H complete Epirubicin 1wk PC new brain mets
10/08 2wks WBR 1wk PC 22/10/08 Tykerb/Xeloda 12/08 6 CEREBRAL METS COMPLETELY GONE! Rib mets down to <1cm.
01/09 Tumour markers normal! Rx to L/arm
03/09 LUNGS CLEAR (ALL NODULES GONE!), brain clear, liver clear. Bones stable! ~ THANK YOU GOD
07/09 Repeat CT Scan ~ ALL organs clear apart from bones which remain stable. I walk in gratitude.
***************
Last edited by hermiracles; 09-23-2008 at 09:44 AM..
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09-23-2008, 08:00 AM
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#2
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Sending you my love and care. Thank you for taking the time to post. You are so special.
Hugs 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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09-23-2008, 08:19 AM
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#3
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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What a precious blessing you are, mother to miracle bubbas! I miss your frequent notes and questions and comments because you are such a terrific YOU! Sometimes I think of you with those little guys and wonder at how lucky they are to have you for their mom. I can invision the twinkle in your eyes as you watch their antics throughout the day. I keep you in my prayers and thoughts as you continue to be a brave, determined warrior. Much love and wishes for smooth sailing. 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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09-23-2008, 08:32 AM
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#4
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Senior Member
Join Date: Oct 2007
Location: Australia
Posts: 309
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Well thank you sisters for taking the time to reply! ~ life sure can get hectic sometimes eh? 'specially when you are trying to relax!
I think I made myself an album - i'm not too sure?? - but Im going to try and post an image from it about our breast cancer awareness day - see what happens:
Oh - my - it looks like it actually worked!! LOL! Just to share Sisters - thanks so much for being here.
Blessings always
Hermiracles
__________________
2003 L/DCIS –> LWE: High G./Comedo - 6 nodes clear 6 wks Rx
04/07 2 miracles born ~ very grateful
06/07 Susp areas L/b
09/07 Stage 2 bilat. mastectomy R/ b. clear extens DCIS/IDC Paget’s 8 nodes clear ER(<5%) HER2+++ CT clear
11/07 Portacath - FEC
15/11/07 Stage 4 Emerg op - hip replacemt #NOF bone mets H/Taxotere
12/07 Rx to 'spots' on spine/R/hip/femur 3wkly H
2008 H+T mets to rib/sternum? Aredia CT clear! Cont. H + Aredia 07/08 1 wk Palliative Care - mets to lungs + ?1 to brain
09/08 Stop H complete Epirubicin 1wk PC new brain mets
10/08 2wks WBR 1wk PC 22/10/08 Tykerb/Xeloda 12/08 6 CEREBRAL METS COMPLETELY GONE! Rib mets down to <1cm.
01/09 Tumour markers normal! Rx to L/arm
03/09 LUNGS CLEAR (ALL NODULES GONE!), brain clear, liver clear. Bones stable! ~ THANK YOU GOD
07/09 Repeat CT Scan ~ ALL organs clear apart from bones which remain stable. I walk in gratitude.
***************
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09-23-2008, 09:22 AM
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#5
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Hermiracles
And your little bubbas are just that...sending you much love, hope and strength for this next part of your journey...hoping you recover quickly and have more time to enjoy your little miracles! Sending prayers and love.
__________________
"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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09-23-2008, 09:41 AM
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#6
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Senior Member
Join Date: Nov 2007
Location: New Jersey
Posts: 889
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Sending you prayers for a successful treatment and a quick recovery. Your bubbas are beautiful enjoy each precious moment with them.
__________________
dx aug 03 invasive dcis 1 cm
er/pr/her2+
bcs 8/4/03
bcs 8/21/03 0/16 nodes
tx 4x ca 36 rad tam
postmenopausal 06 aromasin
sept 07 biopsy node in neck
muga/pet/cat/bone mets to lungs nodes and liver stage iv
tx hki-272
tx not working switched to taxol herceptin
Taxol not working switched to navelbine
navelbine is causing bad neuropathy
starting gemzar
gemzar quit on me now on Ixempra due to increasing number and size of liver mets
another progression starting tykerb/xeloda
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09-23-2008, 11:47 AM
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#7
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Senior Member
Join Date: Oct 2005
Posts: 823
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Sending lot's of prayers your way, and praying for successful treatment for you.
__________________
Vicki
Texas
Biopsy Dx'd 3-23-05 Age 48
MRM 4-5-05 w/ 2 tumor's 5cm, and 6 cm (right side)
IDC (poorly differentiated infiltrating ductual carcinoma)
5+/16 nodes
Stage III A
Grade 3
ER/PR-, Her2/neu ++
Ki67 78%
Begin Chemo 5-2-05 4XAC Dose Dense , 4X Abraxane Dose Dense (ended August 05)
28 Rad's ended October 13 2005
Started Herceptin Weekly August 2005 for one year
Had a Simple mastectomy left side after Mamo showed incresed micro-calcifications. Jan. 17 2006.
Brain MRI Feb.2006--All Clear
August 28, 2006 Last Weekly Herceptin.
October 2006--Colonoscopy, 6 Polyp's removed--all B9
PET Scan July 2007
Abdominal MRI Oct. 2007---2 Right Kidney Cysts
Core Biopsy-- Lump on Scar Line 1-10-08---B9
Brain MRI 6-2008--All Clear
PET/CT Scan 6-2008
Sept. 8 2008, 4CM area removed from mastectomy scar line. Proved to be B9.
PET/CT Scan-- July 2009 --All clear
August 17,2009 ---Had Port Removed
6 Years NED -- April 5,2011
DX'd with Melanoma left arm 10-10-2011
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09-23-2008, 12:18 PM
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#8
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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I really hope this new tx zaps those brain mets asap, we'll all be thinking of you and hoping for positive results.
__________________
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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09-23-2008, 12:33 PM
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#9
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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I would agree with what your doc has planned... the sooner the better! Lots of love and best wishes!
__________________
Brenda
NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)
Nov'03~ dX stage 2B
Dec'03~ Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~ Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~ micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~ micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg
Apr'07~ MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~ Started Tykerb/Xeloda, no WBR for now
June'07~ MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~ MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~ PET/CT & MRI show NED
Apr'08~ scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~ MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~ dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~ Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~ new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~ new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~ 25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.
"I would rather be anecdotally alive than statistically dead."
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09-23-2008, 12:54 PM
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#10
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Senior Member
Join Date: Oct 2007
Location: Australia
Posts: 309
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Thanks Brenda and everyone! Yes I wish I was starting the Tykerb/Xeloda tomorrow - well last week actually! but apparently it can react with the R/T so I have to have that 1st.
Definitely the sooner the better! So grateful you folks are around!
Blessings all
Hermiracles
__________________
2003 L/DCIS –> LWE: High G./Comedo - 6 nodes clear 6 wks Rx
04/07 2 miracles born ~ very grateful
06/07 Susp areas L/b
09/07 Stage 2 bilat. mastectomy R/ b. clear extens DCIS/IDC Paget’s 8 nodes clear ER(<5%) HER2+++ CT clear
11/07 Portacath - FEC
15/11/07 Stage 4 Emerg op - hip replacemt #NOF bone mets H/Taxotere
12/07 Rx to 'spots' on spine/R/hip/femur 3wkly H
2008 H+T mets to rib/sternum? Aredia CT clear! Cont. H + Aredia 07/08 1 wk Palliative Care - mets to lungs + ?1 to brain
09/08 Stop H complete Epirubicin 1wk PC new brain mets
10/08 2wks WBR 1wk PC 22/10/08 Tykerb/Xeloda 12/08 6 CEREBRAL METS COMPLETELY GONE! Rib mets down to <1cm.
01/09 Tumour markers normal! Rx to L/arm
03/09 LUNGS CLEAR (ALL NODULES GONE!), brain clear, liver clear. Bones stable! ~ THANK YOU GOD
07/09 Repeat CT Scan ~ ALL organs clear apart from bones which remain stable. I walk in gratitude.
***************
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09-23-2008, 12:59 PM
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#11
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Senior Member
Join Date: Sep 2006
Location: East Central Illinois
Posts: 89
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Thinking of you dear sister with my prayers and love. Thanks for keeping us posted, your life with the babies is interesting to so many of us, and we are supporting you with lots of hope and concern. Becca
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09-23-2008, 04:59 PM
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#12
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Wishing you much joy and happiness with your little miracles and much success on your next treatment journey.
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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09-23-2008, 06:34 PM
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#13
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Senior Member
Join Date: Oct 2006
Location: Louisville KY
Naples FL
Posts: 665
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Sending healing thoughts down to you. I hope the
treatment comes sooner than later and much success
with it. Your babies are beautiful. Take care.
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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09-23-2008, 06:49 PM
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#14
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Good to hear from you and see those photos of your beautiful babies...sending you huge hugs and much love with prayers....
Regards,
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
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09-23-2008, 07:57 PM
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#15
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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Hermiracles, we've been thinking about you and praying for you! It's always a bright spot in my day to see a picture of your bubba's. You are truly blessed.
__________________
For Nicola
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09-24-2008, 03:49 AM
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#16
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Senior Member
Join Date: Sep 2005
Posts: 589
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Hermiracles, my thoughts are with you for a successful and easy kill of those nasty little cancer cells. I agree, your bubba's are adorable! Eric
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09-24-2008, 06:05 AM
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#17
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Senior Member
Join Date: Oct 2006
Location: Southern California
Posts: 900
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Hermiracles,
Those beautiful babies must bring you such joy. I hope this new combo is the answer to your prayers.
Take good 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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09-24-2008, 06:38 AM
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#18
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Senior Member
Join Date: Sep 2005
Posts: 290
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Time to Go for the Juglar
Dear Hermiracles,
It sure sounds like you've got your hands full right now. It's time for all out war (a "surge" of sorts) on your pesky HER2. I would suggest you go after it on a systemic level, since you seem to have multiple mets sites. I truly believe that the the most helpful nutritional/alternative therapies I have read about and used are the supplement curcumin to promote apoptosis of abnormal cells, and the powerful ability of EGCG in green tea to downregulate HER2 overexpression.
The absolutely best available curcumin supplement is Life Extension's Super Curcumin. It contains the highest concentration of the active ingredient. Take three capsules daily with food. Life Extension's Mega Green Tea Extract (decaffeinated) also has more EGCG than any other I have seen. Take three capsules daily. These are both available online at www. LEF.org.
Again, drinking as much fresh-brewed green tea is important along with the supplements. You should brew it using decaffeinated tea bags, with the addition of one regular (non-decaffeinated) bag in each batch. The EGCG is reported to work more effectively in the presence of some caffeine. Do not add lemon.
Please note that there is scientific evidence to suggest that curcumin may radio-sensitize malignant cells, making them more susceptible to destruction by radiation therapy. Many physicians dispute this point, and suggest that you not use it during R/T as it is a powerful anti-oxidant. This is between you and your radiation oncologist, but perhaps you can ask them to do the research before they make a recommendation. The green tea and green tea extracts are also anti-oxidants, but I say drink it now, and drink it often.
My only other advice is that you follow the diets offered on this site by R.B. and others that focus on foods. Olive oil and other foods that contain Omega-9 fatty acid are very effective in downregulation of HER2.
Keep up your great spirit. We are all praying for you.
Sincerely,
Tom
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09-25-2008, 10:22 PM
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#19
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Senior Member
Join Date: Dec 2006
Location: Oregon
Posts: 715
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Hermiracles,
Thinking of you and your cute little bubs. Hoping that your treatments will help kick the you know what out of the bad bugs. Power to you and your family. Lots of love and hugs sailing on the winds south to you.
Catherine
__________________
Catherine
Found my own lump in the shower
April 2006 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 2.3cm
Chemo first: AC/Taxol over 16 weeks
Bilateral mastectomy Sep 06
33 rads after the surgery
1 year of Herceptin completed Dec 07
15 years and no recurrence as of April 2021
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09-27-2008, 04:43 PM
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#20
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Senior Member
Join Date: Dec 2005
Location: indianapolis, indiana
Posts: 1,544
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lots of hugs and prayers coming your way!
__________________
dxd 9-04, lumpectomy,
st 1, gr 3, er,pr-, her2 +,
2 tac,33 rads,6 cmf
1 yr herceptin,
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