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Old 09-22-2007, 05:50 PM   #21
anne2
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Dear HavahJ,
I am sorry to hear your news. If it makes you feel better, I always read all the posts and I remember yours. I am sorry for the course your BC has taken. I hope that you will have good results in LA. Remember that we all pray for you even if we don't have the answers to your questions.
Hugs,
Anne
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Old 09-22-2007, 10:04 PM   #22
Lolly
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Havah, you are in my thoughts and prayers, and I hope your trip to California gives you some answers. It's very hard when you feel options have run out, but you don't have to stop posting, we will still be here if you need us.

<3 Lolly
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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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Old 09-23-2007, 12:17 AM   #23
Jean
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Havah,
I am glad you have decided to go out Calif. for a further consultation.
You are very wise and brave. I am keeping you in my prayers.
I hope we will be hearing from you with good news.

God Bless,
jean
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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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Old 09-23-2007, 07:55 AM   #24
Emelie
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Please don't give up yet

Havah,
I hope you read Joe's post and go to California with hope. I know that is truely what we all share. Hope is a wonderful thing that is never to be underestimated. I will look for your post upon your return.
Prayers going your way,
Emelie
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Old 09-23-2007, 09:02 AM   #25
Margerie
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Safe journey Havah. Hope you get some encouraging news in California. Will be thinking of you!
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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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Old 09-23-2007, 09:22 AM   #26
sarah
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We all care about everyone on this site and as stated before, if we don't answer it's because we don't have an answer NOT because we don't care - we do. I wish you all the best in California. You are feeling really down right now but remember you are not alone in this struggle and things might just get better ....so prepare for the good things in life and cherish the time and friends you have. We all care about you and wish we had that magic wand ---- but perhaps YOU have it. Believe and stay positive.
hugs and love
sarah
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Old 09-23-2007, 01:19 PM   #27
SusanC
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Havah,
Please don't give up! Your post broke my heart. I want to reach out and hug you. I read all the time and don't respond very often because I don't know what to say. I learn from others on here. I do know one thing, you have to believe and have hope. I believe in the power of prayer. I am praying for you. Keep your head up.
Susan
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Old 09-23-2007, 02:47 PM   #28
madubois63
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If I listened to the doctors every time they told me I was dying, I'd be dead 4 or 5 times over some 7 or so years ago. Thank God I don't listen, and you shouldn't either!! As to not having anything in common with us, that's just not true. You and all of us are fighting for our lives everyday, and that's just too common. My circumstances are not the same as anyone else either, but I still come here for the support and love that has always been available. For over a year now, none of the information pertaining to inflammatory bc, being stage IV, metastasic disease, her2, er+/pr+ etc...has been my priority. For a long time, I did not feel like I belonged on the BC boards or the Leukemia boards. Very few people get leukemia from chemo like I did. I tell my story just in case one person needs to know. I am sorry you feel lost right now, but I'm happy that you are becoming proactive in your care and going to CA. I had to leave my 2 teens (and my dog) for nearly 2 months and travel 8 hours away. It was the hardest thing I've ever done, but I do believe it was my CURE!! I pray you find your cure too!!! Good luck and God bless...
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Maryann
Stage IV Inflammatory BC 1/00
Mod Rad Mastectomy 24nod/5+
Adriomycin Cytoxin Taxol
Tamoxifen 4 1/2 yrs
Radiation - 32 x
Metastatic BC lung/liver 10/04
thorocentesis 2x - pleurodesis
Herceptin Taxatiere Carbo
Femera/Lupron
BC NED 4/05
chemo induced Acute Myeloid Leukemia 5/06
Induction/consolidation chemo
bone marrow transplant - 11/3/06
Severe Host vs Graft Disease of liver
BC mets to lung 11/07
Fasoladex Herceptin Zometa Xeloda
GVHD/Iron overload to liver
Avascular Necrosis/morphine pump 10/10
metastatic brain tumor
steriotactic radiosurgery
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Old 09-23-2007, 03:10 PM   #29
PinkGirl
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Post Madame Dubois

Madame Dubois, you are a very wise woman. I hope Havah is reading all of these posts and knows that the people here really do care about her.
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PinkGirl

Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++

Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09



" I yam what I yam." - Popeye

My Photo Album
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Old 09-23-2007, 03:19 PM   #30
Ceesun
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God Speed to you Hava. Ceesun
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Old 09-23-2007, 04:49 PM   #31
rinaina
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Sending prayers your way HavahJ. Sorry you are leaving us and hope you will reconsider and give this board the chance they all deserve. Everyone here means well and cares. Hope you receive the help needed in California and are given the chance to come back here.
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~Rina~
Dx:3/06 had a lumpectomy April 19, 2006
Her2+ er/pr- Stage I Grade 3 tumor size 1.4 cm, node negative
AC 4 dense doses
34 radiation treatments including booster doses
receiving herceptin every 3 weeks since late August 2006 for 12 months
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Old 09-23-2007, 05:09 PM   #32
madubois63
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Madame Pinkgirl....I don't know where the madame came from, but I like it! Has anyone e-mailed Havah?? There really is a lot of good here for her.
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Maryann
Stage IV Inflammatory BC 1/00
Mod Rad Mastectomy 24nod/5+
Adriomycin Cytoxin Taxol
Tamoxifen 4 1/2 yrs
Radiation - 32 x
Metastatic BC lung/liver 10/04
thorocentesis 2x - pleurodesis
Herceptin Taxatiere Carbo
Femera/Lupron
BC NED 4/05
chemo induced Acute Myeloid Leukemia 5/06
Induction/consolidation chemo
bone marrow transplant - 11/3/06
Severe Host vs Graft Disease of liver
BC mets to lung 11/07
Fasoladex Herceptin Zometa Xeloda
GVHD/Iron overload to liver
Avascular Necrosis/morphine pump 10/10
metastatic brain tumor
steriotactic radiosurgery
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Old 09-23-2007, 08:43 PM   #33
chrisy
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HavahJ,
I'm sorry you are feeling alone. You do indeed have many friends here who care about you and would wrap you in loving arms if we could. Although your Mayo docs have given up, it seems you have not. Do not lose heart while there is still the possibility of getting different answers in California. You just don't know what still may be possible.

God bless,
Chris
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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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Old 09-23-2007, 08:56 PM   #34
Bev
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Havah, I hope they can find something that works. Let us know, we care. Bev
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Old 09-23-2007, 09:31 PM   #35
Joanne S
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Location: Detroit Metropolitan Area, Michigan
Posts: 592
You have many people praying for you! I read alot about Dr. Keith Black #1 brain tumor surgeon, he takes on patients no one else will touch. As mentioned by Joe above, I certainly hope you will make a point and have the opportunity to see Dr Black, in CA. He is world known for his miracle surgical skills.

For an appointment, a second opinion or more information, please call 1-800-CEDARS-1 (1-800-233-2771) or e-mail us. mdnsi@cshs.org <mdnsi@cshs.org>


Hrayr K. Shahinian, M.D. Medical Director is regarded as a pioneer in the field of medicine for his revolutionary use of minimally invasive endoscopy in performing skull base surgery. Dr Shahinian leads a world-class team of specialists at the Skull Base Institute in Los Angeles, is breaking new ground by treating his patients using micro-instruments to access the problem areas. By utilizing this revolutionary technology, along with fiber optic, high-definition video that enables him to have a panoramic view of the interior anatomy of the skull, he skillfully removes tumors and repairs vascular problems while, at the same time, dramatically reducing operating and recovery times.



It's definitely not time to say Good bye. It's hello from me. I have not communicated to you before, but I am confident God will hold you in his loving arms and take care of you.
__________________
Aug06...Dx Age 50, IDC Left Breast, 6+/16 lymph nodes, Stg 3, ER+/PR+/HER2+
Sep06-Jan07...Mediport. Chemo: AC x 4, T x 4
Dec06-Nov07...Herceptin
Feb12,2007...Surg MRM Left & SM Right, reconstruct w/expanders
Mar07-Jun07...Saline Exp
Jun07...Start Tamoxifen
Jun07-Aug07...Rad x 25
Jun07-Oct07...Persistent fevers-unknown origin
Jun07-Nov07...PT for Severe PMPS & Capsular Contracture
Nov07...Surg Capsulectomy, Gel Implants, PMPS pain gone instantly.
Feb08...NED 1st CANCERVERSARY!!!!!
Feb08...2 months post surgery Caps Cont again :(
Mar08...Stop Tamoxifen. Start Arimidex.
Apr08...Sudden high fever, Hosp ICU 10 days, staph infect, emerg surg, implants removed. Outpt IVantibiotics Daily x 6 weeks
Feb11...NED 5th CANCERVERSARY!!!!!
Feb12...NED 6th CANCERVERSARY!!!!!
Aug12...Spotting. Surg=D&C
Sep12...STAGE IV = RARE BC METS TO UTERUS ILC ER+/PR+/HER2-Negative) (Different BC than originally diagnosed = IDC ER+/PR+/HER2+).
Sep12...Stop Arimidex. Start Afinitor & Aromasin.
Jan13...MRI = no progression no reduction
Apr13...Progression. Stop Afinitor & Aromasin.
Apr13...Start Chemo: Taxol & Carboplatin.
Nov13...Scans & Pelvic 95+% Reduction. Nueropathy>Stop chemo start Fareston.
Jan14...PET scan = no progression stable.
May14...Pelvic > Bleeding & cramps. TMs up.
May14...PET scan = uterine progression :(
May14...Stop Fareston. Start Chemo: Xeloda.



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Old 09-24-2007, 10:32 AM   #36
R.B.
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Havah J

Please stay positive and please have a look at the omega three and six posts as part of a risk reduction strategy.

I hope things go well.

RB
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