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01-12-2006, 09:23 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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another inductee into the exclusive brain met club
It has taken 24 hours for me to pull it together enough to post this but....Last night I got a call from our onc telling me that Linda's MRI didn't look too good. I haven't seen the report but a verbal report indicates that she has multiple mets to the brain, the largest being in her cerebellum, which is also causing swelling, thus her vomitting, unsteady gait and possible vision changes.
Moving rapidly forward, Linda is going to McMaster teaching hospital for enrollment in the phase 3 ALLOS radio-sentizing WBR trial on Monday (I think). The only catch is that it is a phase 3 randomized trial which means she has a 50:50 chance of getting the sentisizing drug. http://www.allos.com/
Thank you again to Joe and Christine for posting this.
As you can well imagine, this is a shock to our system but plan B is already in motion: we have moved Linda's Seattle consultation to the middle of Feb. Our regular onc has also to post-rads small molecule supplementation with avastin and in concert with Seattle recommendations. As well, he is offering off-label access to Iressa or tarceva as small molecule alternatives, post rads. I guess I'll be spending some time reading-up on these.
One thing I didn't know (according to our onc) was that WBR pokes holes in the blood-brain barrier which allows some intra-cranial flow of herceptin .
Being in Canada does impose many restrictions on drug availability but we'll work through it. One success we can't lose track of is that for almost 2 years, there has been no spread of mets beyond the liver except for this. With a MUGA of 60; I am considering linda's supplementation regime a success as brain mets are virtually unstoppable, if they decide to go there.
This news really sucks but....I'm hoping that very shortly, this will all be a distant memory of a very bad dream. I wish to thank all who post here, and esp. Joe and Christine for their continued support and committement to irradicate this evil disease.
As always,
Al
__________________
Primary care-giver to and advocate for Linda, who passed away April 27, 2006.
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01-12-2006, 09:53 PM
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#2
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Senior Member
Join Date: Sep 2005
Location: British Columbia, Canada
Posts: 198
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Oh AL I am so sorry..This seems to be the one big thing we are all scared of right?? But you have to remind yourself and Linda of all the successes around here in the brain mets dept. Once again I am so very sorry about this new ugly crap!!! Here's to kicking ass on this thing!!!
Tammy
__________________
Dx'd Dec'01 while 6mos preg. with #4. child (30yrsold)Mastectomy/AC chemo/radiation/ Recur:Mar'04 liver mets: 3 taxol/herceptin /liver resection/3 taxol/herceptin. Cured?
Recur: May'05 spine & Hip. New onc
treatment in Mexico Feb'06-Mar-06
back to Mexico June/July '06
Currently on herceptin/Zometa/Femara-recently added navelbine
Switched to arimidex Nov'06
ovaries removed June '07
ca15-3 in May'06 was 102
ca15-3 summer of '07 holding steady at 23!
ca15-3 slowly rising Dec & Jan 36, 38, 41 and Feb was 36
Feb '08 Liver, lung & Brain scan NED... bones are stable with even a couple spots gone. as compared with '06 scans
May '08 ca 15-3 is 55. Treatment is zometa, vinorelbine, herceptin and aromasin.
No signifcant changes.
Feb'09 Started Xeloda with herceptin..no more hormonals
Feb'09-June'09 tumor markers coming down again from 155 to 84
May'09 blood clots in lungs vena cava filter put in..Heparin shots daily for now.
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01-12-2006, 09:54 PM
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#3
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Senior Member
Join Date: Sep 2005
Posts: 202
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Dear Al and Linda,
I am so sorry to hear the news. But I am not surprised to see that you have plan A and B in the works. You are soooo good. Linda is very lucky. I know this will be a memory in the not too near future. My best to you both and my continued support.
__________________
Take care, k
DX: 10/29/03-Stage IIB, 3/12 nodes +, er/pr-,
Grade 3
MRM: 11/07/03
TX: TCH-BRICG Study-6 tx's; 12/15/03
Herceptin; til 12/14/04
Rads: 30 days
BRCA neg
S-Gap: 12/15/04
Oct 05: LAVH
NED
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01-12-2006, 10:27 PM
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#4
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Senior Member
Join Date: Sep 2005
Posts: 290
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Hang in there
Dear Al and Linda,
I have to hand it to you. You guys have really been through the carwash with this crap. We on the site are all praying for you, not to mention our church prayer chain folks who have no idea who Linda is, but will go to our God on bended knee for intervention on her behalf. I have all the faith in the world that you will find your answers to this obstacle as well. I admire both of you more than I can explain, and you have given me personal strength for Mom's battle as well.
Even in your update post, you provide precious tidbits of information for all of us. I never knew that WBR provided openings in the blood/brain barrier. What a fabulously useful piece of knowledge that is for anyone dealing with brain mets. I too am worried about brain mets, as Mom had a seizure last night that may be related to her vascular dementia, or something more ominous.
I can only say hang in there and remember all of us are thinking of you both. I sincerely hope that some day I might get the opportunity to meet the both of you in person and shake your hands. You guys are awesome, and a shining light of hope and determination to me and others. God Bless you both.
Sincerely,
Tom
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01-12-2006, 11:09 PM
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#5
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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News and plans
So that explains a lot about some of dear Linda's balance and stomach troubles lately. Sorry to hear that, but the stats are not much in our favor to escape this complication as time goes on.
You will take this bull by its horns and do the old rodeo thing!
One thing this board is really good for is giving us information and knowledge which prepares us to some better extent for the time when things progress with ourselves, a loved one or friend. We may not always pay close attention to everything that come to this board, but something may jog our memory or we know to search the site. Something useful will turn up.
Glad the Allos trial is so available now. It was not just one year ago when I looked into it in case I needed WBR.
Keep us posted on how the treatment is going and give ouir love and best wishes to Linda.
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01-12-2006, 11:13 PM
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#6
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Al and Linda, I'm just going to be sending much love and prayer your way. I know that in our heart of hearts we're all somewhat prepared for this news to come our way, but still it's a shock. You must remember we're all thinking of you, and give Linda a BIG HUG for me.
<3 Lolly
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01-12-2006, 11:20 PM
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#7
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Senior Member
Join Date: Sep 2005
Location: melbourne, australia
Posts: 267
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Al, all the best to you and Linda working through this
Christine
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01-13-2006, 06:43 AM
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#8
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Member
Join Date: Sep 2005
Location: Canada
Posts: 24
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Inductee
Al, I am so sorry that Linda landed in this club. You are right it sucks!
Please pass along my best wishes to Linda and also best wishes to you as you both recover from this disappointment and continue to battle on.
I will be watching for your posts.
Regards,
Joan
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01-13-2006, 07:40 AM
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#9
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Senior Member
Join Date: Sep 2005
Location: Huntington, N.Y.
Posts: 162
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Please know how very much we are all pulling for you both.
You will be in may thoughts and prayers.
Maryanne
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01-13-2006, 08:20 AM
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#10
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Senior Member
Join Date: Sep 2005
Location: Philadelphia
Posts: 301
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Al and Linda-
My thoughts and prayers are with you and your family. I agree with the comment that one always learns something from your posts -- thank you for that.
Shell
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01-13-2006, 09:02 AM
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#11
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Senior Member
Join Date: Sep 2001
Location: California's Gold Country
Posts: 404
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Dear Al,
I sure hate to hear this news and I will certainly pray that Linda gets on the drug arm of the trial. You are a superhusband when it comes to your effort and diligence in researching the options for Linda's care, and we have all benefitted from your informative posts. I feel strongly that she can overcome this too.
Hugs to you both, Kim in CA
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01-13-2006, 09:37 AM
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#12
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Dear Al and Linda,
I am so very sorry to read this news. I am praying for Linda to have strength and courage throughout this battle.
She is so very blessed to have a wonderful and supportive husband and best friend to fight along side with her.
God Bless You,
Lexi
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01-13-2006, 11:31 AM
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#13
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Senior Member
Join Date: Sep 2005
Posts: 285
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Al,
All I could think was "damn, damn, damn."
When my mets started, I was so scared of brain mets. Don't know why now, except that it sounds so life-ending. Of course, it's not. Assuming they've looked at her spine via MRI and no tumors have "slipped down", Linda will at the very least have WBR, which many of us have been through.
I have a feeling that you will be involved in changing the course of medical treatment in Canada. You're resilient and brilliant. How you do all of this, run a business and care for all your kids is beyond me.
My God, how fortunate Linda is to have you.
Love and light,
Lisa
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01-13-2006, 03:29 PM
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#14
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Member
Join Date: Sep 2005
Location: Quebec, Canada
Posts: 20
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Al, just remember ALL the people faced with brain mets who are doing fine today...
Have you decided to embark on the trial for certain? I suppose you'll need the final path report.
I feel in my heart that Linda can overcome this. Stay strong.
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01-13-2006, 05:22 PM
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#15
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Senior Member
Join Date: Nov 2004
Location: Henderson, NE
Posts: 413
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Cancer SUCKS
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01-13-2006, 07:22 PM
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#16
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Senior Member
Join Date: Feb 2005
Location: Norridgewock, Maine
Posts: 778
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Al I am sorry to hear this. Last year I was in San Antonio and came home only to get an e-mail from Steph she had brain mets. Now, this year its Linda!! Steph went NED and so will Linda! You keep up the good work, I know its not easy but you are doing a great job. Sending you both lots of prayers and a big hug, Sandy
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01-13-2006, 07:44 PM
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#17
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Senior Member
Join Date: Sep 2005
Posts: 589
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Al,
I'm so sorry that you and Linda have another tough fight ahead but I'm confident that it'll turn out well for you. Besides, all the positive vibes being sent your way from 3+pages worth of people that care HAVE TO help!!
My thoughts are with you both,
Eric
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01-13-2006, 09:44 PM
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#18
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Keeping your whole family in my thoughts and prayers.
Sassy
________
Park Royal 1 Pattaya
Last edited by sassy; 08-22-2011 at 08:37 AM..
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01-13-2006, 10:20 PM
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#19
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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I officially joined this group as a member in May, 2005 (when the new website started up I had to re-register) but I lurked (and posted) for MONTHS before joining. One of the first lengthy correspondences I had was with you Al. You always post such relevent information or studies. You posted a paper you really weren't sure of and since I had my MS in biochemistry, I answered you. I knew then I had to join this group and I did and I fought to get herceptin and scans and brain mri's because of one conversation with you.
I think about Linda and you every day and always hope and pray and that will never end. I am thinking of you now and I know you will get through yet another obstacle as you have helped us get through obstacles without even knowing you have helped.
Becky
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01-13-2006, 10:45 PM
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#20
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Senior Member
Join Date: Nov 2005
Location: New York
Posts: 90
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Brain mets
I am sorry you got this news. There is an upside and that is it is manageable. You will be in my prayers.
Annemarie
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