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04-15-2006, 05:07 PM
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#1
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Senior Member
Join Date: Jul 2005
Location: Ontario, Canada
Posts: 722
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More on Linda
Well,
Linda has been on decatron for 48 house and no real change although her liver profile is now better than it has been in 5 months!!
She has had her transfusions and is getting neupogen. Still, she does nod or shake her head "no"to some questions. She is very comfortable, knows who I am and still enjoys lying in bed with me even if it is a narrow hospital bed. I stayed with her last tonight and will tonight as well.
The "experts" feel either edema or tumor growth. Linda gets a CT scan tomorrow (only because we can get it faster). If tumor growth in shown, I need to get a chemo / lapatinib plan together. Would they give a non-responsive patient chemo? Still questions to be answered.
I'm listening for suggestions and contacts.
Al
__________________
Primary care-giver to and advocate for Linda, who passed away April 27, 2006.
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04-15-2006, 05:45 PM
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#2
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Senior Member
Join Date: Oct 2005
Posts: 823
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Al,
MANY, MANY prayers still being said for Linda.
Good vibes for the CT Scan.
Vicki
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04-15-2006, 06:02 PM
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#3
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Senior Member
Join Date: Sep 2005
Location: Grand Rapids, MI
Posts: 1,516
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Al, my prayers for Linda and you continue...
this may sound stupid, but this is a desperate situation...call GSK direct and find out from them how to get the Lapinatib-1 888 825 5249.
Rhonda
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04-15-2006, 07:42 PM
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#4
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Dear Al, I know this is such a difficult time for you. Give the decadron some more time, and see what the CT shows. I know Linda's very much aware of your presence, and secure knowing that you will act in her best interests based on the CT.
You are in my thoughts and prayers.
<3 Lolly
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04-15-2006, 08:45 PM
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#5
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Senior Member
Join Date: Nov 2004
Location: Olathe, KS
Posts: 107
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Al, I just checked in for the first time in a few weeks. I am so sorry about all that Linda has been through in the past few weeks. Please know you're both in my prayers. Rose
__________________
Rose
Dx'd 1/04 at 33, while 33 weeks pregnant
Dx: Stage IIIC IDC, ER-, PR+ (23%), Her2=2.7 (IDC)/7.6 (FSH), 2.5cm primary tumor, grade III, 11/18+ nodes (largest 3.8 cm)
Treatment: A/C *4, T *4, 1 year of herceptin (BCIRG 006), mastectomy, rads (7 weeks), zoladex (5 years) with tamoxifen (2 years)/aromisin (3 years), bilateral SGAP summer 05 at NOLA
Oops, retested tumor and I guess I'm er/pr- after all.
Stopped all hormonal tx 10/07. Periods resumed 6/08. Bye bye hot flashes!!!!
http://www.edrie.com/kopecky
*~VISIT OUR FAMILY!~*
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04-15-2006, 10:23 PM
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#6
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Senior Member
Join Date: Sep 2005
Location: Vancouver, Canada
Posts: 329
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Dear Al and Linda,
I think about you all the time, it's good idea she is staying in hospital. I just wish and hope she gets better soon with all my heart.
Big hugs,
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04-16-2006, 02:30 AM
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#7
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Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
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Dear Al and Linda,
All my most positive thoughts and prayers for you.
I live in France but is there any research or anything I can do for you by the internet or ?
I send my love to you for a good recovery.
sarah
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04-16-2006, 06:52 AM
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#8
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Senior Member
Join Date: Mar 2006
Posts: 306
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Al,
I'm so sorry....
All I have to offer is my own quick response on Temodar/Xeloda. I may be one in a million (or some other number) and I do feel 'lucky'. But, I DID notice improvement within the first week on my schedule. Maybe within four days. The 24/7 dizziness I had been living with decreased and stopped.
Two subsequent Mri's showed shrinkage of nearly 50%. The two following Mri's showed stable/ no new lesions. That is where I stand today...
But I do like the idea of going right to the source for Lapatinib/ Tykerb. I'd try that myself.
many hugs to you both,
patty
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04-16-2006, 07:38 AM
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#9
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Member
Join Date: Apr 2006
Posts: 13
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Al,
Prayers for you and your family. If the doctors do not find either tumor growth or significant edema, you might check into leptomeningeal cancer which can present as having neurological symptoms such as altered mental status, headache etc. My cousins wife who has HER2 breast cancer with mets to the brain has this and has progressive neurological symptoms present.
A.
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04-16-2006, 02:14 PM
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#10
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Senior Member
Join Date: Oct 2005
Location: TAMPA, FL
Posts: 568
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My Prayers For You Both Al
Al - I am keeping you both in my prayers. Hope Linda is having a better day today.
__________________
Irene from Tampa
1996 - INFILT DUCTAL CAR.W/ LYMPH NODE INVOLVEMENT. ADRIA/CYTOXIN/5FU
1999 - RECURR. TO AUXILA AND 2 TUMORS IN LIVER
TREAT: STEM CELL REPLACEMENT/HERCEPTIN.
2002 - RECUR TO LIVER
TREAT: NAVELBINE, THEN GEMZAR, THEN XELODA.
2004 - TUMORS STILL IN LIVER
TREAT: RFA TO LIVER
STABLE UNTIL
2004 - TUMOR PROGRESSION IN LIVER.
TREAT: RESECT HALF OF LIVER.
2005 - RECURR TO LYMPH NODE OUTSIDE OF LIVER.
TREAT: TAXOL/CARPO/HERCEPTIN. FAILED ON
THIS TRIO. STARTED ON ABRAXANE.
2006 - PROGRESS WITH 2ND TUMOR GROWTH.
TREAT: AUG. BEGAN ON TYKERB/XELODA
TRIAL. CONSIDERED STABLE TO DATE.
2007 - TAKEN OFF OF TYKERB/XELODA TRIAL DUE TO
PROGRESS STARTING TYKERB/AVASTIN.
NOV 2007 - SCANS SHOW PROGRESS TUMOR GROWTH
IN ABDOM. AND TWO NEW TUMORS IN NECK AREA.
BEGAN HERCEPTIN/AVASTIN/TAXOTERE
Feb 08 - Ixempra/Xeloda
June 08 - Her/DM1 trial
"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."
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04-16-2006, 06:18 PM
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#11
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Senior Member
Join Date: Nov 2005
Location: New York
Posts: 90
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Prayers being offered
I think you know by know that Linda and you are in all of our prayers and hearts. What a good soul mate you both are lying in bed together weathing the storm. You both have been blessed to have found one another.
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04-16-2006, 08:53 PM
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#12
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Senior Member
Join Date: Sep 2005
Posts: 285
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Al,
I wish I something to offer you other than my prayers and love. My heart truly aches for you. But hang in there, pal, and keep up the fight.
Love and light,
Lisa
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04-16-2006, 10:29 PM
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#13
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Ditto with the prayers
Dear Al -
I was away for a couple of days and am sorry to hear Linda was in the hospital again. But, it seems that things have a chance of looking up. Stay with her and be open to all the good and warm wishes coming your way.
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04-17-2006, 02:02 AM
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#14
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Senior Member
Join Date: Sep 2005
Location: melbourne, australia
Posts: 267
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Still thinking of you both and wishing the best.
Christine
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04-17-2006, 11:53 AM
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#15
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Senior Member
Join Date: Nov 2004
Location: .
Posts: 87
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Dear Al,
Still praying for Linda and you. Please keep up the fight.
Hugs
Anne
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04-17-2006, 01:18 PM
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#16
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Al & Linda
Hopefully today will bring good news after the CT scan....you are both in my thoughts and prayers....
__________________
"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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04-17-2006, 01:27 PM
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#17
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Senior Member
Join Date: Sep 2005
Location: Central Valley, CA
Posts: 73
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My thoughts and prayers are with you and Linda.
Helen
__________________
- Diagnosed May 2005 8 months after giving birth. Stage IV due to a single liver mets.
- Carbo/Taxotere/ Herceptin combo for 6 months
- Herceptin/ Navelbine
- Recurrence on the same liver spot in 7/07
- Liver resection 9/07
- Tykerb/xeloda 10/22/07
- NED since 9/07 and continued Tykerb/xeloda
- PET/CT in May 2009 show small spot in lungs. Continued Tykerb/xeloda
- PET/CT in Aug 2009 shows progression on lung nodules (slightly bigger)
- Onc considering Taxol/avastin
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