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07-05-2013, 07:06 PM
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#21
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Senior Member
Join Date: Dec 2009
Posts: 562
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Re: How can they know this?
Update: my 16 year old is spending the summer across the country in Stony Brook NY. He's studying on a college campus, doing a scientific research project. Only 50 kids were selected to do this so he's in an elite group, but like you, I am not happy with my kid so far away.
Healthwise hasn't been so good for me. They inserted the fiducials in prep for SBRT and I went downhill. Tuesday I have another prep appointment and we'll see if they still want to do this on me. I got really sick Saturday night and was barely conscious for the next 4 days but hey, here I am, bounced back, out of bed, even left the house today. Just not bouncing too high.  I'm on orders to take it easy but I have my nephew and his baby coming to visit me and nobody to clean the house but me, so easy? What's that?
__________________
 http://butdoctorihatepink.com
08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative
10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.
5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.
I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
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07-05-2013, 07:35 PM
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#22
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Senior Member
Join Date: Nov 2010
Posts: 186
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Re: How can they know this?
Oh, Ann, sorry to hear that! I was wondering why you'd been so quiet. :-(. Did the fiducials cause the trouble? Please don't overdo things! Nobody CARES what your house looks like! Your son's summer sounds incredible, like he's having the time of his life. :-). Bravo.
Did I tell you I'd watched your video interview on You-tube and LOVED it? So great to be able to have a window into your life with your wonderful family. Inspiring and so much love. That little piece alone is a great legacy. I'll try to find the link and post it here. I watched it several times and forwarded it to Kiri (who has followed your blog for years).
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07-05-2013, 08:11 PM
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#23
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Senior Member
Join Date: Mar 2010
Location: Thornhill Ontario
Canada
Posts: 266
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Re: How can they know this?
Always am so appreciative how wonderfully supportive and insightful all you women are on this site. Anne I have been thinking of you as well.You are a wonderful mother and I know you will just keep moving forward no matter what comes your way. One of these days ladies something will come out to give up more ammunition against these battles. Jacqueline you ALWAYS know what to say. You comments put things in such perspective and leave us with a lovely calm philosophy. best weekend to all Lois
__________________
August 2008
Lumpectomy left breast
1 tumour 0.9 cm
Her2 negative
lymph nodes negative
venous/lymphatic invasion absent
ER+PR-
Stage I Grade 2
Radiation and Femara
November 2008
Lumpectomy right breast
2 tumours .03 cm and .05 cm and extensive DCIS
.05 tumour Her2+
lymph node negative
venous/lymphatic invasion "indeterminate"
ER+PR low postive
Stage 1 Grade 2
January 2009
bilateral mastectomy
chemotherapy taxotere
Herceptin one year
Femara
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07-05-2013, 08:32 PM
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#24
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Senior Member
Join Date: Dec 2009
Posts: 562
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Re: How can they know this?
My oncologist thinks it might be the fiducials. I didn't go to the ER (some things never change) so it's hard to say. I will have yet another CT this week (I think it's #25 now!) and they can look and see if anything is going on.
What happened was I had severe pain in the liver starting Saturday, took a bunch of dilaudid which did no good, and then started vomiting. I vomited for a while and did the college trick where you fall asleep on the bathroom floor with a roll of TP as your pillow. LOL. I woke up, thought I was safe and went to bed, but the vomiting started again. I keep a bucket under my bed now for that. Well I finally fell asleep....and did I ever. From Saturday night to Wednesday morning I was asleep. Occasionally woke up to take a sip of water, which was so exhausting I had to sleep for another five hours. (I am glad my youngest was not home, I hate it when he sees me like this although he's less scared as time goes by)
Wednesday I got up, shaky and weak and went to to the doctor, a regularly scheduled appointment. They gave me perjeta, herceptin, and zometa, but no chemo. I asked the doctor "Should I have gone to the ER?" And he said, "Why, so you could sit in their waiting room for ten hours and then be sent home?" LOL, I love my oncologist, we are totally on the same page. He said when this happens (and it has happened before without the severe pain and to a lessor extent) it is time for symptom management.
But he also thought the pain, a new component, could be fiducial. I will see what the radiation oncologist says on Tuesday anyway.
And, one person cares what my house looks like - me! And, they have a three month old baby, I can't have them walk into a house full of dog dust and spent tissues. My house was built in 1946 so is not easy to clean in the first place. Sigh, I would just love to move and live in a new house. Oh well, not now.
__________________
http://butdoctorihatepink.com
08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative
10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.
5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.
I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
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07-07-2013, 06:50 PM
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#25
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Senior Member
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
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Re: How can they know this?
Hey Kiri's Mom (lucky girl to have you for her mama),
Do you know what the difference between God and a doctor is?
(....wait for it......!!!!)
God knows HE'S not a doctor.....
__________________
Smile On!
Laurel
Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara
15 Years NED
I think I just might hang around awhile....
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07-08-2013, 11:28 AM
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#26
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Senior Member
Join Date: Nov 2010
Posts: 186
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Re: How can they know this?
LOL, Laurel :-)
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07-08-2013, 11:41 AM
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#27
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Senior Member
Join Date: Aug 2011
Location: Philly Suburbs
Posts: 1,709
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Re: How can they know this?
So true!! Good one!
Especially true of surgeons!
Denise |
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07-08-2013, 02:20 PM
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#28
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Senior Member
Join Date: Sep 2012
Posts: 111
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Re: How can they know this?
Laurel, that is so funny! I'll be repeating that one...
Rachael
__________________
7/30/2012 Diagnosed with metastatic breast cancer
8/3/2012 CT scan mets to liver (major!!), lungs, spine, and skin
8/8/2012 Biopsy results: invasive ductal carcinoma
ER+/PR+/HER2+ amplification 4.8 (whatever that means)
8/13/2012 Brain MRI (clear); bone scan verified CT scan
8/14/12 started Taxotere/Carboplatin/Herceptin, 2 rounds (added Neulasta after 9/4 treatment)
9/4/12 CA 15-3: >3000
9/15/12 CA 15-3: 840
9/15/12 started Taxotere/Perjeta/Herceptin, 4 rounds (no Neulasta)
10/29/12 CT scan showed dramatic improvement in all areas - largest liver met 2.5 cm, largest lung met 10 cm
12/17/12 Started Perjeta/Herceptin, 2 rounds
12/17/12 CA 15-3: 17 Yay!!!
1/21/13 CT scan showed improvement - largest liver met 1.9 cm, largest lung met 2 mm
1/29/13 CA 15-3: 12 Started Herceptin only
3/12/13 CA 15-3: still 12 yay!! Back to Perjeta/Herceptin
3/29/13 CT scan more improvement - largest liver met 1.2 cm, some lung mets disappeared!
3/7/14 started Tamoxifen
6/27/13 - 1/2015 CT scan stable
Began a diet of only single ingredient foods and went nearly NED excepts for some tiny lung spots - ask me if you want to know more...
1/2015 - 1/2017 CT scan stable
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07-08-2013, 03:53 PM
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#29
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: How can they know this?
That is because She is a GODESS!
Women were given Intuition and we need to learn to use it. There are exceptions to every "average" statistic and, Mum, keep that top of mind. OK?
__________________
"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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