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Old 04-06-2018, 04:46 AM   #1
europa
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Posts: 362
Stroke after tamoxifen

Hi everyone.
My saga continues. In 2015 after 4 years NED, I developed a blood clot in my leg as a side effect from tamoxifen. I got off tamoxifen and have been fine since. But Monday I was rushed to the ER. It was discovered I suffered a tiny stroke caused by a 2mm infarction. I was told that having had cancer puts me at a higher risk of hypocuagulation and therefore a stroke. Has anyone heard this? I’m ok. Just really scared because I’m only 43 and wasn’t expecting to be a risk for something as scary as a stroke.
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DX 10/2011
PET Scan + MRI 10/2011
Lumpectomy 11/11/11
Stage 2B +++ ER+(10%), PR+(5%), HER2+++(1 positive node, 1 micromets to second node)
AC started 12/2011 ended 1/2012
Taxol + Herceptin weekly for 12 weeks ended 4/2012
30 zaps of radiation done 6/2012
Tamoxifen 6/2012
every 3 weeks of Herceptin for another year.
Metformin Trial 8/12
10/12 MRI- CLEAR
01/13 BRAIN MRI- CLEAR!
01/13 Neck MRI- CLEAR!
FINISHED HERCEPTIN 1/9/2013...Woot Woot
Starting Walter Reed Vaccine Trial 2/13
CT Scans + ultrasound of abdomen CLEAR-5/13
02/2015 through 11/2015 emergency D&Cs for Tamoxifen induced uterine polyps which caused uncontrollable hemorrhaging
12/2015 blood clot to left leg caused by Tamoxifen. No longer taking it. On Xarelto, a blood thinner
12/2015 Ablation to prevent hemorrhaging from potential issues with Tamoxifen residue in my system
1/2016 continuing journey without hormonal therapy. Reevaluating the option of a hysterectomy and oopherectomy.
4/1/2018 2mm stroke. Yes, stroke! No cause ever found but they believe it was a migraine that went bonkers and created a tiny clot. No deficits. I was back to normal with 24hrs. Now on baby aspirin for life.
7/27/2018 hysterectomy and oopherectomy
01/07/2019 Mastectomy and expanders put in
3/22/2019 Vtach, almost died. Cause unknown.
7/22/2019 New perky boobs put in
7/21/2020 Off of all drugs but a baby aspirin because of the stroke in 2018.


www.mychemobag.org
www.facebook.com/mychemobag

8 YEARS NED
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Old 04-06-2018, 08:21 AM   #2
Donna H
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Re: Stroke after tamoxifen

WOW! I have not been told that cancer could lead to a higher risk of stroke. That is scary. I am glad you are doing ok after it. Hopefully someone else on the board will have insight into this.
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Old 04-06-2018, 08:58 AM   #3
Lucy
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Re: Stroke after tamoxifen

Sadly this doesn't surprise me. Last year I was under a lot of stress and started having chest pains. I had mentioned it when I went to my oncologist's office and they're ordered an echocardiogram because they said that chemo can cause heart problems years after you're done with treatment. Something I wasn't told before treatment. I doubt it would've factored into my decision to have treatment if I had known but it would've been nice beforehand.

Glad you're okay. We just have to be vigilant in knowing our bodies and trying to jump out ahead of things.
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Old 04-06-2018, 12:32 PM   #4
Cathya
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Re: Stroke after tamoxifen

europa;

I had a lacuna stroke at some point during my treatments for bc. It was picked up later during an mri looking for brain mets. I was put on aspirin and following a TIA while walking through IKEA of all places, my drivers license was pulled for 6 months, tests were done and I was put on aggrenox, sandoz candesartan and ratio-atorvastatin (all of which have more common names I'm sure but one's a blood thinner, ones for the heart and ones a statin I believe). I was retested and got my drivers license back. All this was about 10 years ago and I have had no problems since. However, I also had radiation for a left side tumour and so that combined with the chemo's (Doxorubicin aka the red devil), herceptin and arimidex, it's not hard to figure that we could have longer lasting heart/stroke issues in my mind.

Having said all of this, I have had no issues with my heart or stroke since that time.

God bless,

Cathy
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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 04-09-2018, 10:20 AM   #5
jra40
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Re: Stroke after tamoxifen

Oh wow, this is very scary! So sorry Europa but thank you for posting your experience. I have noticed I have an irregular heart beat lately and it's been getting progressively worse. I will talk with my oncologist in May to see if I can get it checked.

Always something with this damn cancer journey!

Jessica
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11/17/10 - Diagnosed with 4.5cm tumor in right breast, IDC, Stage 2, Nuclear grade 2, ER+ PR+ HER2+
12/13/10 - Lymph node biopsy - negative
12/28/10 - Started neo-adjuvant treatment along with clinical trial with 4 rounds of AC chemo every 3 weeks
3/15/11 - Began weekly Taxol/Herceptin infusions along with 750mg of Tykerb taken by mouth daily
6/28/11 - Finished last cycle of Taxol
7/27/11 - Breast MRI shows tumor has dissolved, remarkable reaction to chemo
8/31/11 - Lumpectomy, Sentinel Node biopsy. Node negative, clear margins, 7mm of cancer left over from chemo.
10/05/11 - Started radiation, 5 days a week for 7 weeks.
11/8/11 - Finished radiation
3/21/12 - Last Herceptin!
3/26/12 - Port removed!
Tamoxifen for 5 years
8/4/15 - Hysterectomy & bilateral salpingo-oophorectomy. Due to large fibroids. No cancer!
8/8/15 - Started Arimidex
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Old 04-09-2018, 03:12 PM   #6
Becky
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Re: Stroke after tamoxifen

My sister had to stop tamoxifen due to a blood clot in her calf. I got the oophorectomy because I felt I was going blind while on tamoxifen. I was premenopausal so I had to get an oophorectomy to go on Armidex which agreed with me fine.

Nothing's ever easy.
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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 04-09-2018, 04:49 PM   #7
Juls
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Re: Stroke after tamoxifen

Hi Everyone,

Oh! - didn't know about stroke risk, but did know about blood clot risk with Tamoxifen.

I was given Tamoxifen 5 years ago without any discussion. I checked side effects & noticed blood clot risk so called my nurse to say I had family history of blood clots & I wasn't keen on taking it. Can't say they were very pleased with me questioning it. Eventually Doctor agreed to give me Femara instead.

Jessica-
I'm now on Kadcyla - it reduces potassium & magnesium in body & this can cause palpitations/irregular heartbeats. I'm sure AI's can do this as well? As you say always something!

Juls
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Old 04-11-2018, 12:39 PM   #8
jaykay
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Re: Stroke after tamoxifen

Oh jeez, Europa! I'm glad you're okay now but it must have been frightening for you
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March, 2000: 48, Post menopausal (5 yrs HRT) Left breast, IDC 3mm/DCIS 1.6cm, ER+/PR-/Her2+++, mod differentiated, MIB low, lumpectomy, node neg via SNB, rads=33 Stage 1a
June, 2000: Tamox 4.5 years,Femara for 5 years (end in Jan. 2010)
Sept, 2012: 61, Via mamm, ultrasound, biopsy, right breast, 2.3cm tumor, ER+/PR-/Her2+++, poorly diff, KI67 60-70%
BRCA 1 and 2 negative
October, 2012: Bi Mast with tissue expanders, port placement
Final Path: IDC 2.8cm, DCIS, 1/4 sentinal nodes positive (@#$%). Stage IIB
Nov 29, 2012: Begin TCH/6x/every 3 wks, H for 1 year/every 3 weeks.
March 14, 2013: Finished chemo
April 9, 2013: Begin radiation 28x
May 22, 2013: Finished rads
June 1st, 2013: Started Aromasin for 5 yrs.
July 15, 2013: Switched to Letrozole (Femara). Probably for the rest of my life
October 16, 2013: Exchange surgery
October 31, 2013: Finished Herceptin
December 5, 2013: Port removed
Glad this year is over!
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Old 04-11-2018, 01:28 PM   #9
tricia keegan
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Posts: 3,463
Re: Stroke after tamoxifen

Europa sorry to hear of your issue's which must have been scary. I remember being warned before chemo that it could lead to heart problems in years to come but didn't think I was at a higher risk of stroke.
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Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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