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10-29-2007, 11:59 PM
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#1
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Senior Member
Join Date: Sep 2005
Location: Ontario, Canada
Posts: 752
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Anne;
Thank you so much for your concern. I am doing well (it was a small stroke thank goodness) but I think now the whole concept of having had a stroke is hitting me.....and the worry of potential future strokes. Luckily for me I have a wonderful neurologist and will be having a telephone meeting with him tomorrow to discuss this further. My Serum Her2 test has been trending upwards and is now above normal. I am one of those who suffers heart problems...my muga was 41 when I went off herceptin last time ...... and I worry if I need it again (my heart has recovered) that it will also increase my risk of stroke. I did see risk of stroke as a potential side effect of herceptin somewhere....on genetech I think.....here it is
WARNINGS Cardiomyopathy Herceptin can cause left ventricular cardiac dysfunction. Cardiac dysfunction in patients receiving Herceptin therapy can be serious with disabling cardiac failure, death, and mural thrombosis leading to stroke (see BOXED WARNINGS: Cardiomyopathy).
I don't know what mural thromobosis is. If I hear more I will post but you are right....no one else i know of has had a stroke....just your mom and I.....so perhaps it is not from bc treatment at all.
Cathy
__________________
Cathy
Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Genetic testing show BRCA1 VUS
Nice! My hair came back really curly. Hope it lasts lol. Well it didn't but I liked it so I'm now a perm lady
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
April 20, 2018 BC mets confirmed, ER/PR+ now Her2-
Questions about the possibility of ovarian spread and mets to bones so will be tested and monitored for these.
To begin new drug Palbociclib (Ibrance) along with Letrozole May, 2018.
Genetic testing of ovarian tumour and this new lung met will take months.
To see geneticist to be retested for BRCA this week....still BRCA VUS
CA125 has declined from 359 to 12 as of Aug.23/18
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10-30-2007, 04:15 AM
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#2
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Cathy
The definition of mural thrombosis is
<DD minmax_bound="true">Formation of a thrombus in contact with the endocardial lining of a cardiac chamber or, if not occlusive, with a wall of a large blood vessel. </DD>Seems this can occur frequently in the left ventricle...red wine has been thought to slow the process of mural thrombosis developing....
basically its a small clot. Have you ever taken any typr of blood thinners?
Hoping they can get to the bottom of all this for you...take each day and try to regain your health and strength...you are in my prayers Cathy.
__________________
"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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10-30-2007, 08:33 AM
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#3
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Senior Member
Join Date: Apr 2006
Location: Wilmington, Del.
Posts: 1,126
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Dear Cath- Thank you for adding to the valuable knowledge and experience base here. I had to stop Herceptin too at 9 months. Hope your your heart recovers and that you (and I) remain NED. Best of health to you in the future.
__________________
MJO
IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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10-30-2007, 07:48 PM
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#4
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Senior Member
Join Date: Sep 2005
Location: Ontario, Canada
Posts: 752
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Thank you. I spoke to my neurologist today and he told me that I have suffered a lacunar stroke and one that is not caused by a clot from the heart. From what he told me there are different types of strokes and mine is caused by tiny blood vessels deep in the brain being blocked. Although these strokes affect small areas they can cause serious effects but mine didn't .... thank goodness. He said there are three causes:
1. age (I'm 58 which seems young)
2. diabetes (don't have it)
3. family predisposition (my grandfather had many tiny strokes until he died in his 80's with a big stroke)
So, this is good news really for me as strokes caused by blood clots apparently affect larger vessels, not so deep in the brain, with more damage generally. And, this would lead me to think that herceptin had nothing to do with my stroke. Unfortunately there is not too much I can do to keep from having others in the future. I can't control my age or my grandfathers history. I can only take my aspirin, watch my blood pressure and eat well so not to get diabetes.
Thanks,
Cathy
__________________
Cathy
Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Genetic testing show BRCA1 VUS
Nice! My hair came back really curly. Hope it lasts lol. Well it didn't but I liked it so I'm now a perm lady
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
April 20, 2018 BC mets confirmed, ER/PR+ now Her2-
Questions about the possibility of ovarian spread and mets to bones so will be tested and monitored for these.
To begin new drug Palbociclib (Ibrance) along with Letrozole May, 2018.
Genetic testing of ovarian tumour and this new lung met will take months.
To see geneticist to be retested for BRCA this week....still BRCA VUS
CA125 has declined from 359 to 12 as of Aug.23/18
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