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07-30-2009, 12:05 PM
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#21
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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Re: ~Mighty Oak Update~7-29-09! Uggh!
I am so glad to read this updte before we leave (in about 10 min!) for 10 days vacation where internet will be spotty. Sounds like things are going as well as they can and I am praying with all my heart and soul for you both. Two stronger people are hard to find...MIGHTY OAK and his mightier watering can!!! I love you both!!! XO Suzan
__________________
 Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year
as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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07-30-2009, 12:09 PM
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#22
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Senior Member
Join Date: Sep 2005
Location: St. George, UT
Posts: 582
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Re: ~Mighty Oak Update~7-29-09! Uggh!
Marie, you and Ed are such tremendous warriors! You inspire so many of us, and you are definitely in many daily thoughts and prayers, mine included. Please let us know how all the tests turn out. We are praying for more good news. Markers down is definitely good! Love and prayers, Tricia
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07-30-2009, 12:14 PM
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#23
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Senior Member
Join Date: Jan 2009
Location: Colorado Springs, CO
Posts: 430
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Re: ~Mighty Oak Update~7-29-09! Uggh!
Ed and Marie - You are in my thoughts daily. I'm sending lots of positive thoughts and energy your way (I'll be happy to send a heat wave along with it if you want!)
__________________
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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07-30-2009, 12:22 PM
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#24
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Senior Member
Join Date: Jun 2007
Posts: 216
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Re: ~Mighty Oak Update~7-29-09! Uggh!
Thinking of you both.
Janie
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07-30-2009, 04:34 PM
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#25
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: ~Mighty Oak Update~7-29-09! Uggh!
Cheers to Mighty Oak on the reduced tumor markers. Hopefully that will give him hope to keep putting one foot in front of the other and keep going.
Admitting him and doing tests sounds like a good plan.
I hope it works out. Maybe a change in chemo will help.
I will keep my fingers (and toes) crossed for that.
Sometimes men need a little push when it comes to health care. Smile. Keep pushing !!
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07-30-2009, 06:13 PM
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#26
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Senior Member
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
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Re: ~Mighty Oak Update~7-29-09! Uggh!
Marie,
I am so happy to hear Oak's markers have fallen in response to the treatment. He's one tough acorn, that boy of yours!
As always I remain inspired by you both. Good luck tomorrow. I will have your backs in prayer. Please keep us posted!
__________________
Smile On!
Laurel
Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara
15 Years NED
I think I just might hang around awhile....
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07-30-2009, 08:01 PM
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#27
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Senior Member
Join Date: Apr 2008
Location: WA State
Posts: 199
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Re: ~Mighty Oak Update~7-29-09! Uggh!
Marie,
I continue my prayers for Ed and your family. Praying for a comfortable next treatment and that you won't have to lasso him. Hehe. Take care and sending you lots of love and blessings.
__________________
Cindy
L/IDC, 1.2 cm, Stage 1, Her2+, ER+/PR+ at age 48
4/15/2008 Lumpectomy + sentinel node biopsy
Margins neg and Nodes neg (2 tested)
MUGA score 55 on 5/6/2008
Treatment starting 05/08/2008:
Chemo 4 cycles, 3 weeks apart with Taxotere & Cytoxan - Chemo - Done 7/24/2008!
Herceptin for 1 year
Radiation starting in 9/2008
MUGA score 61.9 on 9/04/2008
33 Rads with boost - Done 10/13/2008
MUGA score 58 on 12/01/2008
MUGA score 59 on 3/16/2009
Herceptin for 1 year - Done 4/27/2009
MUGA score 64 on 6/22/2009
All scans - NED 6/24/2009
MRI - NED 11/10/2009
All scans - Still NED 8/25/2011
Still NED 2017!
I am calling this my pink journey
Follow my journey into the pink at my blog here
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07-30-2009, 08:28 PM
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#28
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Senior Member
Join Date: Oct 2006
Location: Southern California
Posts: 900
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Re: ~Mighty Oak Update~7-29-09! Uggh!
Marie,
Great news on the tumor markers since they seem to be a good indication for what's going on with Ed. Sounds like he still has some spunk left in him - channel it, channel it. Best of luck to you both with the next bend in the road.
__________________
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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07-30-2009, 10:38 PM
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#29
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Re: ~Mighty Oak Update~7-29-09! Uggh!
Marie,
hang in there my friend. A little bit of good news is good medicine.
__________________
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial
5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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07-31-2009, 04:32 AM
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#30
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Senior Member
Join Date: Sep 2005
Location: MN
Posts: 731
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Re: ~Mighty Oak Update~7-29-09! Uggh!
Marie - Joan has stated my thoughts - Ed is so luckly to have you and your constant love care and fight. I know you are fighting for both of you. You are amazing. I'm praying you will get ED to the hospital for the tests so with those results the best treatment plan can be started. Wish we could all come there and walk with you two to that appointment - picture us all there with you surrounding you.
__________________
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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07-31-2009, 04:43 AM
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#31
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Senior Member
Join Date: Jun 2007
Location: Bergenfield, NJ
Posts: 121
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Re: ~Mighty Oak Update~7-29-09! Uggh!
Dear Ed and Marie,
I'm sending you lots of love and prayers! flying kisses,too.
Hugs,
Gemma
__________________
My love to you all
Gemma
____________________________________
Dx July03 at 35
Rt,breast lump.,1 node+
ER+(98%)ER-, grade3
A/C 4rounds,Rad for 38 days
Tamoxifen 2004-05
Recurrence Feb.2006, radi double mastectomy canceled bec. of mets, StageIV lungs mets
Her2+++, BRCA negative
Taxol/Herceptin six rounds of Taxol from April06.then Herceptin alone til May07. Started Tykerb/Xeloda in Jun07-Sept.07 bec of progression of the lympnodes. Navalbine/Herceptin Sept.07 to April 08 due to progression . Gemzar/Hercptin Apr08.June08 Brain MRI showed Brain Mets.CraniectomyAug.1,08, tumor removed completely
completed 20 wbrt!
Started Doxil 10/31/08 (monthly) and weekly Herceptin
Ixempra on 2/13/09
due to multiple hepatic mets
will have Herceptin as well.
Radical rt.breast Mastectomy June2009.
Ixempra/Herceptin 11/06/09--increasing right axillary lymphanenopathy and enlarging left upper lobe nodule :-(
Taxotere/Herceptin 3/5/10,more liver mets, lungs, lymphnodes. 2 weeks on, one week off...
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07-31-2009, 07:43 AM
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#32
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: ~Mighty Oak Update~7-29-09! Uggh!
Marie, just wanted you to know you're both in my thoughts..hang in there 
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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07-31-2009, 09:55 AM
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#33
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Senior Member
Join Date: Feb 2008
Location: Bayarea,CA
Posts: 679
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Re: ~Mighty Oak Update~7-29-09! Uggh!
Dear Marie,
Sending lots of prayers and positive thoughts your way. Ed is indeed fortunate to have such a loving wife and friend!
I am so happy to hear about his tumor markers going down! Keep the good news coming!
Love,
shobha
__________________
DX: 06-30-2007 - left breast -stage IIIB, Her2/Neu 3+++, ER weakly positive, PR-
Taxol+herceptin weekly for 3 months
FEC+herceptin every 3 weeks for 3 months
BRCA 1 and 2 - Negative
Jan 2008 - Bilateral mastectomy, prophylactic Rt. side.
Radiation for 5 weeks
Completed my yr of herceptin on 07-14-2008
Brain MRI - 3/2/09 Clean
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07-31-2009, 11:33 AM
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#34
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Senior Member
Join Date: Sep 2005
Posts: 208
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Re: ~Mighty Oak Update~7-29-09! Uggh!
You and Ed are in my prayers, those prayers are for strength for you both, and healing.
Hugs,
Diane
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07-31-2009, 11:40 AM
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#35
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Senior Member
Join Date: Apr 2006
Location: Wilmington, Del.
Posts: 1,126
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Re: ~Mighty Oak Update~7-29-09! Uggh!
There's a lot to be said for getting all the test over at once. Good news about the markers. Take care of yourself, Marie.
__________________
MJO
IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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07-31-2009, 01:02 PM
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#36
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Senior Member
Join Date: Oct 2006
Location: Louisville KY
Naples FL
Posts: 665
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Re: ~Mighty Oak Update~7-29-09! Uggh!
Just adding my thoughts and prayers to you. You
just have to keep on keeping on and you are doing
a great job. Love and Light
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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07-31-2009, 03:39 PM
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#37
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Senior Member
Join Date: Mar 2006
Posts: 306
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Re: ~Mighty Oak Update~7-29-09! Uggh!
Marie,
Glad to hear about the Temodar. That's what I 'picked' to stay with, since it is the only brain specific chemo. My onc went and chose Avastin for me for now... to see how that works. In a month and two we'll do more MRi and TM test. It was at my all time high of 357 or some such. First out of the norm these past near 7 yrs of brain mets only.
I was just thinking again today about needing my OLD cane. Went in a garage sale I think...
I'm also on 12mg decadron, 4mg 3x'x per day, since Wed. and hit and miss since last Fri. Plan to change to Irinotecan/Temodar (new dose or schedule) should the Avistin not do the number...or maybe even add it to tx.
Still not doing well. My brain stem pons tumor is 11mm - another in cerrebellum @ 12mmx16mm. Others of 1cm in size. Nothing over 6 in number tho'. Yet, these are causing the vomiting, headaches, confusion, bumbles, shakieness all over, inside and out...
Wish Lyle could sit with you and visit... so glad to hear that laughter coming down the pipe, too  )
Sending the love and bits of hope,
XOXOXOXpatty |
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07-31-2009, 07:27 PM
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#38
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Senior Member
Join Date: Apr 2008
Location: Sunny San Diego
Posts: 2,214
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Re: ~Mighty Oak Update~7-29-09! Uggh!
Marie and Mighty Oak,
I am thinking about you again today. I'm still asking God for that miracle for Ed. I like that his markers are lower. Keep us posted please.
__________________
Diagnosed 2007
Stage IIb Invasive Ductal Carcinoma, Pagets, 3 of 15 positive nodes
Traditional Treatment: Mastectomy and Axillary Node Dissection followed by Taxotere, 6 treatments and 1 year of Herceptin, no radiation
Former Chemo Ninja "Takizi Zukuchiri"
Additional treatments:
GP2 vaccine, San Antonio Med Ctr
Prescriptive Exercise for Cancer Patients
ENERGY Study, UCSD La Jolla
Reconstruction: TRAM flap, partial loss, Revision
The content of my posts are meant for informational purposes only. The medical information is intended for general information only and should not be used in any way to diagnose, treat, cure, or prevent disease
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08-01-2009, 12:48 PM
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#39
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: ~Mighty Oak Update~7-29-09! Uggh!
Just wondering. Has Ed every tried Tykerb with Herceptin? Tykerb (Lapatinib)passes the blood brain barrier and circulates in the brain. I am still cheering for you guys. Take care.
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08-01-2009, 02:24 PM
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#40
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Senior Member
Join Date: Mar 2007
Location: Norco, Southern California
Posts: 53
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Re: ~Mighty Oak Update~7-29-09! Uggh!
Marie,
I am glad to hear about the tumor markers but disappointed about so many in the brain. Tykerb works for me; my headaches have gone since I got back on it, but I seem to remember it didn't work for Ed. I hope they find something that works as well as it seems Ixempra did. Know that I am praying for you both.
God bless you,
Beckie
__________________
Diagnosed 4/06, age 55
1.1 cm tumor
Pre-op x-ray caught lung nodules
6/06 - Stage 4, Her2+++, er/pr-
Mets to lungs(largest 3 cm), liver (largest 5.5 cm), and bones
Began taxotere, herceptin, & aredia
7/06 - radiation to lower spine & left shoulder for pain
8/06 - everything smaller
12/06 - stopped taxotere (toe infections)
5/07 - bone mets advancing
6/07 - add navelbine to herceptin & aredia
6/07 - discovered brain mets (3 in cerebellum, largest 2 cm.)
7/07 - WBR, change to Tykerb/Xeloda
9/07 - targeted radiation
10/08 - started navelbine/herceptin
2/09 - brain mets - targeted radiation
5/09 - mets in liver progressing, changed to Ixempra
7/09 - mets in liver still going, to the brain again, on gemzar now
9/09 - gemzar failed, started Doxil today
I know Who holds the future, and I know He holds my hand.
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