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08-09-2006, 04:26 PM
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#1
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Senior Member
Join Date: Jul 2006
Location: Pasadena, CA
Posts: 32
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I think it's working!
Although I am afraid to get too excited, I think the Gemzar/Carbolatin is working. The area feels softer, not as tight. She has me doing day one of the combo, day eight Gemzar only, one week off and then starting again. So I have completed one full cycle and I know I see a difference and so did she. Yeah! I just know that one morning I am going to wake up and not have any pain. She wants to do three or four cycles of this and then we'll see. She is thinking about the trial of tykerb and xeloda.
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08-09-2006, 05:37 PM
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#2
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Wonderful!
You did not say what it is that feels different, but when you can feel a difference and have less pain, that is normally a GOOD thing. Do you also get tumor markers checked?
I just spoke with a long-time BC fighter friend who feels that since the addition of Avastin to the Abraxane that she also feels her nodes smaller and much less pain in her rib. It was exciting to hear this as she has had a difficult time finding something that works for her.
Keep us posted and we will continue to share in your successful healing.
__________________
"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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08-09-2006, 06:41 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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Thata girl Dace...
Keep it up  Take care and God bless.
Rhonda
__________________
Rhonda
Dx 2/1/05, Stage 1, 0 nodes, Grade 3, ER/PR-, HER2+ (3.16 Fish)
2/7/05, Partial Mastectomy
5/18/05 Finished 6 rounds of dose dense TEC (Taxotere, Epirubicin and Cytoxan)
8/1/05 Finished 33 rads
8/18/05 Started Herceptin, every 3 weeks for a year (last one 8/10/06)
2/1/13...8 year Cancerversary and I am "perfect" (at least where cancer is concerned;)
" And in the end, it's not the years in your life that count. It's the life in your years."- Abraham Lincoln
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08-09-2006, 06:43 PM
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#4
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Senior Member
Join Date: Sep 2005
Location: Madison, Connecticut
Posts: 638
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Dear Dace;
I am so pleased to hear that your new chemo combo seems to be working...I have been thinking about you and your two children...were you able to switch oncologists? Have you thought any more about a 2nd opinion perhaps with Dennis Slamon? Have you kept your job or are you taking some time off? It is good to read the relief in your post. Thank you for keeping us updated.
Love Kim from CT
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08-09-2006, 06:54 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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Dace, it's wonderful that you're feeling better and more hopeful; try to take one day at a time for now and let the drugs "do their thing". Keep us posted!
<3 Lolly
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08-09-2006, 07:38 PM
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#6
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Senior Member
Join Date: May 2006
Posts: 52
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FANTASTIC, Dace! Do you know if your current onc will be sharing your progress with your previous onc/facility? It would be helpful for them to learn about this treatment and success it seems to be having. Wishing you all the best!!!
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08-10-2006, 10:08 AM
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#7
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Senior Member
Join Date: Jul 2006
Location: Pasadena, CA
Posts: 32
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ok, I am going to try to answer all of your questions...
with Inflammatory Breast Cancer, since it grows in sheets, it gloggs the glands of the skin and they hurt! and turn red and bruised. And the skin thickens which is why it felt to tight. The first week after the infusion with the como, the pain got worse and it seemed like my skin was in overdrive! It literally felt like it was crawling with something! That started to get better in the second week. By day 8, when I got the infusion of just gemzar, it felt softer and not as red and one little spot that had looked like a zit (though I knew it wasn't) is gone. My red blood count dropped and my potassium was low so last week I had major fatigue, but they gave me a shot and this week I am fine!
I was able to switch oncologists and am currently being seen at the City of Hope in Duarte and feel like I am in great hands! She did want to send me to UCLA for the tykerb/xeloda trial because she said it would be 2 months before they got it, but I opted to stay at COH. It was too hard to get this referral from Kaiser. Kaiser will get be informed of everything that happens in my case, plus I have to meet with him once a month just to touch base.
I am still working, although my job has been absoloutly wonderful, in that the days I do not feel good, I am allowed to work from home. My girls are gone on vacation for 3 weeks so I am getting a much needed break finally. Although I haven't figured out what to do with myself yet, but I'll figure it out by this weekend!
Still losing weight, lost another 3 pounds last week, although I hate the way I am losing it, I don't mind reaping the benefit!
Oh yes, and I said I was waiting for the day when I would wake up in no pain? Guess what? Today was the day! Although I still have pain, it wasn't there when I woke up! God is good! Next step a day with no pain!
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08-10-2006, 10:29 AM
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#8
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Senior Member
Join Date: Apr 2006
Location: Wilmington, Del.
Posts: 1,126
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Dear Dace.
I was reading about inflammatory breast cancer yesterday. I learned that in the general BC population, 25-30% are Her2+. In the IBC population, more than 50% are Her2+. That statistic amazed me. I am so glad we have Tykerb and the other drugs to help you. Maybe you are one of the IBC pioneers, just as five years ago there was a group of Her2 Herceptin pioneers. All the very best to you. XXXOOO MJO
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