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04-13-2006, 10:47 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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Please say a prayer for Linda
Hello everyone. I'm back for one post anyways.
Linda has been slowly going dowwnhill the past 2 weeks. I have been at the hospital with her 4 times in 2 weeks, as well as endless phone calls; about her fatigue, tarceva rash, (which none one really believes that's what it is). her not eating, sleeping endlessly etc. The rash has been unbelievable, like 4 cases of chicken pox all in one, around her lips so bad she csn't open her mouth to eat. Blood all over the pillow sheets every morning from bleeding lips. She has also developed all these opportunistic infections like pink eye, trush in her mouth, lip infections. Everytime something comes up, back to the hospital and another medicine! Chasing your tail is one phrase that comes to mind but still understates the past 2 weeks.
Things that I knew but have re-learned: extensive steriod use comprimizes your immune system, WBR is absolutely brutal, Tarceva does cause a rash but very severe in some cases. The wonderful Dr. Devon Webster called us the other night; right out of the blue just to see how Linda was doing. That my friends, is a lady so wonderful and committed to our cause, there aren't enough words to describe her.
Linda's test results: because of the WBR treatment, therefore no chemo, her liver mets took off AGAIN. So while she was recovering from WBR she was getting sicker from the liver mets. Switched to navelbine; a great drug as tonight's liver counts were the best in 4 months. We know it's not the liver mets. She is back on decatron, as if she gets better, it will be because of brain swelling going down. If that's the case, at least we will know what we are dealing with. Her hemoglobin is way down, which would cause fatigue. she is very dehydrated, has had 2 litres of fluids so far. They have put her on anti-biotics, eyedrops, morphine, gravol, neupogen, decatron....and I know I've missed something. Oh yes, she got her herceptin 1 week ago. A blood transfusion is scheduled for tomorrow.
The real kicker is, and those on the board who know me should appreciate this; no matter how diligent, how well read, how many second and third opinions, space-age drugs, due diligence........... somehow this evil disease can stil turn around on you and bite you in the ass!
Also, to Lyn, Lisa, hope, Tom's mom and all the others....I am truly sorry that I havn't been able to contribute to finding solutions to your personal struggles and it pains me to read your posts.
Anyway, I hope my (positive) intuition is right about Linda and she will once again rally like she always has, as she is one of formidable inner strength; that which would shame the strongest of men and yet could only be matched by my survivor friends here.
I'll try to check-in tomorrow (Friday) for an update.
Al
__________________
Primary care-giver to and advocate for Linda, who passed away April 27, 2006.
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04-14-2006, 02:23 AM
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#2
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Senior Member
Join Date: Sep 2005
Location: Grand Rapids, MI
Posts: 1,516
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Al, we have TRULY missed you...
and are SO sorry to hear of Linda. YOU as with all the others have LOTS of prayers. You and Linda take care and stay strong.
Rhonda
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04-14-2006, 04:09 AM
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#3
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Senior Member
Join Date: Nov 2005
Location: Upstate New York
Posts: 50
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Linda will be in my prayers, I pray for all of us daily.
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04-14-2006, 04:41 AM
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#4
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Member
Join Date: Sep 2005
Posts: 6
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A prayer has been said and will be repeated and repeated.
Peggy
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04-14-2006, 05:58 AM
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#5
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Senior Member
Join Date: Sep 2005
Posts: 312
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Al writes:
"like 4 cases of chicken pox all in one, around her lips so bad she csn't open her mouth to eat. . She has also developed all these opportunistic infections like pink eye, trush in her mouth, lip infections--"
Janet
Writes
I wonder if Valtrex would help? Could she have shingles or other herpes infection? I had shingels in the eye and nose and the Valtez got rid of it--but now I am back on a small dose just to keep it from returning. The lesions around the mouth made me think of it.
Wishing you two the best with hugs and prayers,
Janet
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04-14-2006, 05:59 AM
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#6
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Al & Linda
Keeping you both in my prayers and thoughts that everyday will show improvement and healing.
__________________
"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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04-14-2006, 06:08 AM
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#7
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Senior Member
Join Date: Oct 2005
Posts: 823
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Al & Linda, My heart goes out to you both. Many, Many prayers are being said.
Vicki
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04-14-2006, 07:14 AM
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#8
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Senior Member
Join Date: Sep 2005
Posts: 208
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Sending prayers and hugs and wishing for a quick turn around for Linda, bless you both.
Diane
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04-14-2006, 07:46 AM
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#9
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Guest
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Linda is lucky to have you, Al. Best wishes and prayers to you and she.
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04-14-2006, 07:54 AM
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#10
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Senior Member
Join Date: Sep 2005
Location: NYC
Posts: 250
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Hi Al--
I'm very sorry to hear what Linda and you have been going through these past few weeks. I am going to trust in your intuition, but I'll keep sending you and Linda wonderful healing vibes from NYC.
Jen
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04-14-2006, 08:02 AM
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#11
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Senior Member
Join Date: Sep 2005
Location: Philadelphia
Posts: 301
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Al and Linda-
our prayers are with you and your family
shell
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04-14-2006, 08:07 AM
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#12
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Senior Member
Join Date: Sep 2005
Posts: 26
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GOD BLESS...YOU AND LINDA....
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04-14-2006, 08:30 AM
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#13
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Senior Member
Join Date: Sep 2005
Location: Simi Valley, CA
Posts: 94
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So sorry to hear this Al and Linda. I will be thinking of you all and hope things turn around quickly.
{{HUGS}}
__________________
Jen
DX 10/04 IDC Grade 3
ER/PR-, Her2+++
4/20+ Lymph nodes
Stage 3a
Age 38, CA
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04-14-2006, 08:34 AM
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#14
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Dear Al, I'm so sorry to hear this. It's must be so frustrating and disheartening to be going in circles with the meds, side effects, more meds, etc. But I know Navelbine is a potent drug, especially in combo with Herceptin, just remember the blood counts take a hit with it. The transfusion should help her start feeling better, one of my chemo buddies had to have them occasionally and they made a big difference for her.
I will be keeping you guys in my thoughts and prayers, and knowing how strong willed BOTH of you are will continue to hold positive thoughts in mind.
<3 Lolly
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04-14-2006, 08:42 AM
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#15
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Senior Member
Join Date: Sep 2005
Location: Vancouver, Canada
Posts: 329
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Dear Al and Linda,
My heart goes out to you both, I think about you all the time and I wish for a fast recovery. I send you positive energy and pray.
Love and hugs,
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04-14-2006, 08:45 AM
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#16
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Member
Join Date: Mar 2006
Posts: 15
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thinking of you
Al,
I'm beyond sorry to hear that things have been going so poorly for Linda. You must tell me if there is anything I can do-organize local help for you, whaterver...from this distance, that would be at all helpful.
Warmly,
Jeff
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04-14-2006, 09:30 AM
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#17
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Senior Member
Join Date: Mar 2006
Location: Chicago, IL
Posts: 42
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Al, I am so sorry about all of this. Please know you both are in my prayers. Keep fighting!
Lisa
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04-14-2006, 09:49 AM
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#18
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Senior Member
Join Date: Sep 2005
Location: Ontario, Canada
Posts: 752
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Al;
I am so sorry to hear about Linda's current challenges....that goodness she does have you to handle everything! I also live in Ontario and if there is anything I can do please let me know. Will be praying for you both.
Cathy
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04-14-2006, 10:25 AM
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#19
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Al,
We are saying prayers for Linda to have strength.
Love and Prayers,
Lexi
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04-14-2006, 10:35 AM
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#20
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Senior Member
Join Date: Oct 2005
Posts: 476
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I want to add my thoughts and prayer, along with others, to Al and Linda. In my short period of time in this forum, I know that you two are outstanding people. I know you will do wonders to turn the tide.
Ann
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