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12-24-2005, 08:21 AM
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#21
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Senior Member
Join Date: Jul 2005
Location: Ontario, Canada
Posts: 722
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Linda and I would like to thank everyone for their kind words, thoughts, concerns and words of encouragement. Linda is doing much better today and seems to be regaining strength almost hourly as the xeloda kicks in. This new generation of medications are truly miracle drugs and coming back from SABCS; we have very many reasons to be optimistic and positive.
Linda stopped chemo to findout if she had active disease and as most of you know, stable disease is a requirement for entry into the U. of W. HER2 Vaccine Trial. Well, we knew the risks and we got our answer! We also thought of this as a calculated risk that was worthwhile taking because we have faith in the researchers that formulate and test these vaccines and targetted therapies. The truth be known; I don't think they are doing this for the money! Having said that, let's support our explorers, ladies like Ginger and most recently Nicola, because truly, none of this is without risk.
Love to all,
Al and Linda
__________________
Primary care-giver to and advocate for Linda, who passed away April 27, 2006.
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12-24-2005, 09:28 AM
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#22
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Al and Linda, I'd like to add my support to the virtual CHORUS of positive words from this wonderful group of people.
I'm so glad to hear Linda's feeling better on Xeloda...it seems to be a very potent drug for this particular flavor of BC; I have two chemo friends who's HER2 positive cancers are either stable or in remission since being on Xeloda/Herceptin. So stay positive and hopeful, enjoy the Christmas season with your loved ones, and in the New Year we'll KICK SOME BUTT!
<3 Lolly
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12-24-2005, 10:32 AM
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#23
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Senior Member
Join Date: Sep 2005
Posts: 60
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Anyone ever got xeloda from canada. I might have to go back to in office chemo if I don't get help
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12-24-2005, 11:28 AM
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#24
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Dear Al
I just logged on for the first time in a long while as I have been out of the country and then the holiday preparation.
I am so sorry that Linda's liver mets are not stable. Avastin is a great idea. Are there any other recommended chemo combos to try out? A trial?
My heart is with you and Linda. I feel you are a good friend in such a short time. I just can't say enough.
God bless you.
Becky
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12-24-2005, 11:44 AM
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#25
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Senior Member
Join Date: Nov 2004
Location: Olathe, KS
Posts: 107
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Al, I am truly bummed to hear this news. I know how long you had been hoping to participate in the UW trial. Keeping you in my prayers that this new round will reduce the tumors.
__________________
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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12-24-2005, 11:48 AM
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#26
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Senior Member
Join Date: Sep 2005
Posts: 556
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Hi Al,
Sorry to hear the news and hoping to see her reach NED status with the next chemo combo. Are you considering lapatinib trial also?
Julie
__________________
Diagnosed in Sept 2004 while pregnant with the second child. Stage 3b, tumor 4.5cm, 4 auxillary and supraclav node positive. Her2+++ FISH 9.4 and er-,pr-.
Had dose dense neoadjuvant AC,Taxol then mastectomy,radiation+xeloda+Herceptin.
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12-24-2005, 02:22 PM
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#27
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Senior Member
Join Date: Jul 2005
Location: Ft. Collins, Colorado
Posts: 546
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have to add my wishes
Al and Linda, it sounds like you are already bouncing back from crummy results. Knowing the tenacity and intellect you both have, i just don't feel worried in my gut. You have helped so many with your research and efforts it is only natural that you two will get this figured out. I'm envisioning a fabulous 2006 for you that is full of new, exciting opportunities.
__________________
with love and gratitude,
joy
dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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12-25-2005, 12:38 AM
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#28
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Senior Member
Join Date: Sep 2005
Posts: 290
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Hang in there
Dear Al and Linda,
I know the test results come as a sucker punch to you, but I always say the enemy that you know is one you can defeat. You know where you stand now with the cancer, and you will formulate a plan. I have always enjoyed reading your informative posts, and have seen that you are light on your feet when it comes to looking for new answers.
I feel very strongly that the vast realm of information that came out of the San Antonio event will be of help to us all very shortly. I always tell Mom's onc that I want to limp along until the next treatment breakthrough becomes available. Perhaps by the time you are done with the Xeloda, or even Avastin, Lapatinib will have proven so successful that it will receive fast-track approval and be widely used.
I have added your names to our prayer list at church, and will keep you both in my thoughts. I feel certain that you will overcome this twist in your journey as well, and may even find that God has directed you down this path for some as yet unknown reason. Keep your faith strong and your mind sharp as you wisely advised me to do when things get crazy. I hope you were still able to have a peaceful Christmas. Take good care.
Sincerely,
Tom
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12-25-2005, 12:38 PM
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#29
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Senior Member
Join Date: Nov 2004
Location: Streetsboro, Ohio
Posts: 365
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Linda has been my main glimmer of hope since I came on this sight that this disease won't kill me. I'm praying for you Linda, that you find the right treatment to put you in remission. God Bless You, Al, and everyone. Lu Ann.
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12-25-2005, 03:41 PM
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#30
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Senior Member
Join Date: Sep 2005
Posts: 161
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Merry Christmas and a really happy New Year to you both. I will be thinking good thoughts.
Sue
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12-27-2005, 10:03 PM
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#31
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Senior Member
Join Date: Sep 2005
Posts: 38
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Sorry to hear about Linda. I will keep you in my prayers and hope everthing turns out good. God is Great! Hope
__________________
Dx in Oct. 2002 Her3+++(at dx) ER/PR neg. stage 4 with mets to lung, bones, and brain
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12-28-2005, 12:31 AM
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#32
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Senior Member
Join Date: Oct 2005
Location: Carlsbad, CA
Posts: 73
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Ditto on the prayer patrol - your both on the top of mine. Sounds as though you are already rallying, regrouping and venturing on. We are all holding you in prayer and hoping for the next step to present itself clearly and easily.
All the best
Tami
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12-28-2005, 04:11 AM
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#33
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A Living Legend
Join Date: Oct 2005
Posts: 235
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Hi there, it is such a bummer getting news you don't want, but Linda is a tough Gal, and will roll with the punches. I am waiting to have tests to see if my Herceptin/Xeldoa /Cyclophosamide combo worked, I had to stop Aromasin so it would give my cancer a chance to grow, bigger that is, I had good news last Xmas NED, to be shot down 2 weeks into the new year, so this year I decided I could care less one way or another what the result was because a new year of battles seems to be our vocation in life and it maybe that the Xeloda is our insulin we just have to work out what to mix it with. I was told yesterday that I am in a win win situation, if it is gone I will stay on the Xeloda combo and if it isn't I will trial the new drug that stops blood supply to the cancer, also being trialed for Leukemia, the weird thing is I feel as if I do not have any big C, but that could be me hallucinating from the pain killers I am on for my sore shoulders and neck, every 4 hours comes around like pulling teeth, I am not addicted just in agony all the time, so I am lucky in one way as far as I know it isn't from the big C, unless the MRI shows something, this is the wrong time of year to try and get tests done, even my GP is on Holiday in IReldand until 9 January. Linda and all of my Pals on here are always in my prayers. I find I can type if I hold my elbows into my sides for support, but I must apologise for not being on here as often as I should.
Love & Hugs Lyn
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12-28-2005, 07:32 AM
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#34
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Senior Member
Join Date: Sep 2005
Location: Huntington, N.Y.
Posts: 162
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Al,
You once told me there is a reason for everything and most times for the best...well I throw this back in your court knowing once again things will work to your advantage.
May "Miracles' abound for you both in 2006.
Maryanne
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12-28-2005, 02:19 PM
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#35
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Senior Member
Join Date: Nov 2005
Posts: 943
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Sorry Al, I will be praying for you and your family. Keep you chins up.
__________________
Robin
2002- dx her2 positive DCIS/bc TX Mast, herceptin chemo
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12-28-2005, 03:49 PM
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#36
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Senior Member
Join Date: Sep 2005
Location: Utah
Posts: 52
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Al and Linda,
Your news is so disheartening...I've been off Xeloda for 5 weeks now because my tumors showed "significant growth" while taking it, along with herceptin. I'm now on Navelbine plus herceptin. My Onc doesn't think herceptin is working but I pleaded with her to keep me on it....I've read where these two drugs have a positive synergistic effect.....along with lots of Prayer.
Stay positive and stay strong.....Linda, you will endure and overcome this!!!
Much love, Amy
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12-28-2005, 06:54 PM
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#37
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Guest
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Al, this michele u
Have you looked into the SPOC program? I know it helps pay for Herceptin if insurancae does not. I will try to find the exact website for you
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01-05-2006, 09:06 AM
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#38
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Senior Member
Join Date: Oct 2005
Posts: 50
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Al,
Sorry to hear about Linda's progresssion. We all HATE that situation! I am sure that you have been very busy investigating you alternatives, perhaps it was even mentioned in the above responses, but what about the new trial "
A Phase II Study to Evaluate the Efficacy and Safety Using Combined Monoclonal Antibodies, Trastuzumab and Pertuzumab in Subjects with HER-2 Overexpressed Locally Advanced and Metastatic Breast Cancer" ?
Since Linda had progression while on Herceptin alone, maybe this would be a good trial for you.
I realize you live in Canada, but just wanted to pass this along.
God Bless,
Cindi
P.S. Sorry it took me so long to read your post, just getting back from the Xmas holidays and a bout of the flu. Holidays GREAT, Flu BAAAAD!!!
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