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03-28-2007, 07:57 PM
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#1
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Senior Member
Join Date: Sep 2005
Location: Riverside, CA
Posts: 484
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Not so good news for me.....
I was sitting in bed watching TV and minding my own business on Mon morning, when I got a call from my Neurosurgeon at Cedars-Sinai. And he starts off by saying the radiation oncologist is there with him....
Well, he was calling to say that after reviewing the MRI taken post surgery about 3 weeks ago, they spotted a tiny 1mm new lesion in my brain stem. They wanted me to come in and consult with the radiation onc on Tuesday.
The options they gave me were Gamma Knife, Modified Linear Accelerator Radiosurgery, WBR. MLAR is given in multiple sessions and is the treatment of choice for delicate areas while minimizing effects on healthy tissue around it. So that is option I chose.
I went in this morning and had an MRI, CAT scan, and was custom fitted for the frame for the treatments. I will have 5 treatments in total beginning next week on Wed. and Fri, then Mon/Wed/Fri of the following week. They got all excited about the Lapatinib option, and said if that wasn't in the picture, they would be recommending WBR, which for me would be my absolute last choice.
I am scheduled to have the MUGA and EKG this Fri, then see my onc on Wed morning next week. I AM getting the lapatinib. My sister and brother have said if insurance does not cover the cost, they are prepared to cover the approx. 42K per year that Lapatinib will cost. So I will be starting the Lapatinib within the next couple of weeks, one way or another.
This is one more unforeseen hurdle to get over....knocked me down for a bit, but I'm re-grouping and doing what I have to do to power through this. Now I'm sincerely hoping that the fact that I've been such a complete responder to Herceptin, may be an indication that I will respond to the Lapatinib as well....One can only hope!!!!
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03-28-2007, 08:28 PM
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#2
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Senior Member
Join Date: Sep 2005
Posts: 589
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Esther,
I'm really sorry about your surprise news. It stinks that you have to deal with this but,as you mentioned, the lapatnib might be a silver lining. My wife seemed to respond well to herceptin and the onc feels she's a perfect fit for lapatnib so I would expect you to be as well.
Eric
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03-28-2007, 08:42 PM
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#3
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Wow - such intense news to get. I am inspired by your strength and determination to power through!
I am having my brain MRI on Friday. So far all we know of is a spot on my cervical spine... around C1 or 2. The MRI will tell us the size. Hopefully nothing shows up in the brain. Have had headaches everyday for the last 3 weeks, but living in central Texas, everyone including my onc, has had the crazy allergy headaches non stop for weeks.
I learned so much from your post, thanks for sharing. I am sorry that you are facing this hurdle.
__________________
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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03-28-2007, 08:53 PM
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#4
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Senior Member
Join Date: Sep 2005
Location: Maine
Posts: 97
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Hi Esther,
I'm sorry to hear the latest news. It's good news about being able to get lapatinib though. The last time I saw my onc. she said she had two patients with brain mets who had been through different meds with no response but have responded to lapatinib.
Take care,
Pat
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03-28-2007, 09:28 PM
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#5
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Esther, I'm so sorry you were hit with this news so unexpectedly. But it seems you and your team have a pretty good handle on things. I wonder if the lapatanib will have any synergy with the MLAR? That might be a good thing. Best wishes for next Wednesday, I'll be thinking of you while I'm in Chemo 
<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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03-28-2007, 10:04 PM
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#6
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Oh BLAST it! Cancer sure CAN get into our business!
Just when you thought that the brain stuff was under control for a while.
I have a question since 1mm is SO small and most MRI machines make 2mm cuts. Is it one of the new 3 Tesla magnets?? We have one now at the U of W, but I have continued using the "old" MRI machine from last year for consistency of imaging.
These newer machines can catch the mets in a smaller size and hopefully give a better chance of knocking them into oblivion. Have at it and let us know how it goes.
Your family knows you are a good investment - they must be great people to offer to pitch in like that.
__________________
"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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03-28-2007, 11:03 PM
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#7
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Senior Member
Join Date: Jun 2006
Location: Bradenton,FL
Posts: 977
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Esther,
Wishing you calm in the face of this news. Stephs comment about "blasting it into oblivion" sounds like a great one to me. Hope your treatment does EXACTLY that!
Hugs,Marcia
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03-29-2007, 04:57 AM
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#8
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Senior Member
Join Date: Feb 2005
Location: Norridgewock, Maine
Posts: 778
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Esther am sorry to hear your not so good news! It seems this is the season for a few on this board. I will say a few prayers for you especially as I am doing my bone scan today. Sending you a big hug, Sandy
__________________
Dx. 03/01, Rt. IBC
AC/Taxatere
Rt. MRM-with graft Lt. simple
5 rads-skin mets
Herceptin, taxol, carboplatin (taxol seem to be the magic drug)
Navelbine & xeloda (did not work)
topical miltex for skin mets
Tykerb/xeloda
thoracentesis x 2 left lung fluid shows cancer cells
Port removal (4 years) with power port replacement
Doxil
Updated 05-07 Scans show no bone or organ involvement we shall see!
I shall not pass this way again. Any good I can do or any kindness that I can show let me not defer or neglect it for I shall not pass this way again.
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03-29-2007, 06:45 AM
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#9
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Senior Member
Join Date: Nov 2005
Location: New York
Posts: 90
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Ester,You will be in my prayers.
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03-29-2007, 06:55 AM
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#10
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Senior Member
Join Date: Mar 2006
Location: IOWA
Posts: 243
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Esther, my thoughts and prayers are with you. May you respond as well to the lapatinib as you did to the herceptin. Keep on fighting, you will get through this.
__________________
Andi
-- ------------------------
Stage IIIC, 17 of 20 Nodes +, E+, Her2+++
Diagnosed 6/30/05
Lumpectomy 7/13/05
Dose Dense A/C x 4
Weekly Taxol + Herceptin x 12
Remainder of year Herceptin Every 3 weeks (completes 9/13/06)
Radiation completed 2/28/06
Currently on Tamoxifen
Dec 06 - Pleural effusion treated with pleurodesis
Now er/pr-, her2++
1/07 started weekly Navelbine plus Herceptin
Discontinued Tamoxifen
4/27/07 CTshowed progression
5/01/07 Began Tykerb/Xeloda + Zometa
5/22/07 Stopped treatment due to great progression
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03-29-2007, 07:58 AM
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#11
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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So sorry to hear of this latest 'twist'..my prayers are heading your way!
__________________
 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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03-29-2007, 09:36 AM
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#12
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Senior Member
Join Date: Sep 2005
Location: Riverside, CA
Posts: 484
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Steph, I'm not sure what type of machine they have at Cedars-Sinai, but they can detect things way smaller than the machine I was using before at Loma Linda University.
Scary to think that if I had gotten the MRI at Loma Linda I'd still be ignorant and happy....their machine wouldn't have spotted a 1 mm lesion.
The second MRI I had done yesterday showed the lesion had grown in the 3 weeks time frame between MRI's. It had gone from 1 mm to still a bit under 2 mm.
I have heard from another metster who has dealt with 2 lesions in the brain stem and it has given me renewed hope and optimism.
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03-29-2007, 09:43 AM
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#13
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Esther,
Hate those surprises! You are very much in my thoughts - and I hope this new strategy will be the clean up you need to stop this in its tracks for good, backed up by the Lapatanib. You are such a strong person, and a major fighter. Get the gloves back on and slap it down! I agree with StephN, your family knows you are a good investment! But I'll bet insurance will pay for the Tykerb then you all can spend that money on a celebration instead.
Much love
Chris
__________________
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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03-29-2007, 11:20 AM
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#14
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Senior Member
Join Date: Oct 2005
Posts: 823
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Ester you will be in my thoughts and prayers.
I am so sorry to hear about this news, you will beat this as well.
__________________
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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03-29-2007, 02:29 PM
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#15
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Senior Member
Join Date: Jun 2006
Location: South Florida
Posts: 477
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Ester,
Sorry to hear the news. It sounds like you have a good and well thought out plan.
You are in my prayers.
Love, Peace, and Hope,
Carolyns
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03-29-2007, 06:04 PM
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#16
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Senior Member
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
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Hi Esther,
I'm so sorry to hear this news. I just came back from having my MRI, the first one since my surgery last December. I am already expecting it to light up because of my issues with necrosis. I hope the Tykerb works for you. I may be going on it when I return from my trip from Florida.
You are in my thoughts!
Barbara H.
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03-29-2007, 07:33 PM
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#17
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Senior Member
Join Date: Jun 2006
Location: san luis obispo, ca
Posts: 1,150
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Esther, So sorry to hear your news today. I am also starting Tykerb this next week, along with Xeloda. Mu Onc seems to believe that since Tykerb is now FDA approved, your insurance should cover it. I will keep you in my prayers and please let us know how thing s go. Cedar Sinai has the best machines, so you went to the right place. Much love, Vickie
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03-29-2007, 08:23 PM
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#18
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Senior Member
Join Date: Dec 2005
Location: Alexandria, VA
Posts: 1,055
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Vickie, my same thought. With FDA approval this should be covered. You might have to fight for awhile, but they'll roll over. Hope this all works out Steph. BB
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03-29-2007, 09:13 PM
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#19
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Senior Member
Join Date: Feb 2006
Location: South Florida
Posts: 131
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Esther,
I am thinking of you and praying for you. I know you are in Great hands there, Stay Strong Sister.
Hugs to you,
__________________
Lala
DX Fall05 Stage 4 er+ pr+ her2+ liver and bone mets
DX Fall06 Brain mets, Brain mets gone Spring 2007
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03-29-2007, 09:44 PM
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#20
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Esther, you are amazing! Crumby news and you greet it with wisdom, determination, and good spirits. I am so proud to be your cyber sister! I'll pray and believe that you will respond perfectly to all done and come through with shining colors! Thank you for being you and sharing your next adventure with us. Lots of love, 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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