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Old 10-23-2007, 09:35 AM   #1
Cathya
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Location: Ontario, Canada
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Could stroke be related to herceptin treatment??

Hi all;

I haven’t posted in quite a while but have enjoyed lurking. I am still NED but undergoing tests (contrast CT’s mostly now) every two months as my onc thinks I might have a hidden tumor (??). I think his concern is my rising tumor markers…..particularly the Serum Her2. It dropped slightly a couple of months ago after being on a rising trend the past two tests and so he is holding off herceptin until he gets the results of the one I just had done yesterday. Problem is that twice before my heart function has dropped on herceptin and I’ve had to stop its use so he really wants to be sure it’s absolutely necessary. I’ve had a couple of MRI’s and some time between the one in February and the one in May I had a stroke!! What a surprise. If I had symptoms I am not aware but he sent me off to see a neurologist last month who ran some tests and I will be getting his report on Friday. I haven’t had high blood pressure but am overweight…..sigh….a constant struggle. The one test looked was an ultrasound of my neck. The neurologist wondered if my radiation treatment of my supraclavicular node tumor had damaged the area but the technologist said I was very lucky and everything seemed clear….also no sign of tumors….Yes!! I wonder if this stroke is related to herceptin in any way?? I hadn't been taking it for about 6 months. I wonder if there’s any other treatment like herceptin available for me….without the heart impact? I have been feeling pretty low over the last couple of months but am feeling better now.
Best regards,
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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Old 10-23-2007, 10:30 AM   #2
Becky
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Hi Cathy

I am sorry you have been having your ups and downs. I do not think Herceptin is directly related to your stroke. However, heart problems and possibly LVEF can very much be related to strokes. Atrial Septal aneurysm (really value problems or heart murmurs) slosh up the blood and can cause clots that can cause stroke. I am not sure of the effect of the low LVEF and if that causes sloshing - however, it does cause residual blood to be left in that chamber and maybe sloshing around too that could cause a clot. I found an article below that studies this as most research is done on stroke after heart attack (with the heart attack causing LVEF) but then one wonders, is it LVEF or the fact that there were clots to begin with since the people did have heart attacks first. So, perhaps indirectly Herceptin can be involved.


http://content.karger.com/ProdukteDB...name=96489.pdf
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 10-28-2007, 08:59 AM   #3
Cathya
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Thank you Becky;

I am continuing this discussion with my neurologist and will post any info here should it suggest this is another herceptin potential side effect. I'm beginning to think that it could be just me though....lol.

kind regards,

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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Old 10-28-2007, 04:53 PM   #4
anne2
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Hi Cathya,
I am sorry to hear that you had a stroke. How bad was it? Are you back to functioning now. It is funny but my mom had a stroke in 05/06 also. I asked on the board and no one else had had this happen after Herceptin. The onc thought that it may have been the chemo. Regardless, my mom was bordeline diabetic and HTN. I hope you are doing well,
Hugs,
Anne
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Old 10-29-2007, 11:59 PM   #5
Cathya
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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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Old 10-30-2007, 04:15 AM   #6
Sheila
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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.
__________________
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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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Old 10-30-2007, 08:33 AM   #7
MJo
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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.
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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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Old 10-30-2007, 07:48 PM   #8
Cathya
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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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Old 10-30-2007, 07:55 PM   #9
lilyecuadorian
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yahoooooo herceptin good that means after the muga increase you can get more herceptin ? I think is a good news after all no?
__________________
Lily
Diag April/06 5 months after give birth my son Max
stage IV mets on liver (5 tumors) 38 year old,
her2+++ and ER+PR+ from32 nodes 4 positives
mastectomy right breast chemo before surgery herceptin/carboplatin/taxotere ,clear and surgery have radiation 20, `& then herceptin and tamoxifen
NED until Aug/07 body only then 'n June 04-06-07 .1 lesion of 1.6 cm on cerebellum ...novalis ,open sugery
5m.m brain met again novalis, 4mm.In the liver. Waiting 2 months now 3 tumors enroll on T-MCC trial start first infusion Nov 5/07 at Dec 17 scan show one tumor despair the 2nd and 3th diminish Doc said great results until March/08 ct scan show progression
03-05-08 start tykerb & xeloda
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