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Old 06-01-2016, 06:32 PM   #1
europa
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Join Date: Jan 2012
Posts: 362
Re: Ovarian cramping. On tamoxifen and Herceptin. Prone to O cysts

Hi there,

I was on tamoxifen for about 3.5 years. I started having the cramping you are describing during year 1-2. I would get ultrasounds 2-3 times a year because of them and like you the result were pesky cysts. But the last year I was on tamoxifen the cysts stopped and uterine polyps developed which lead to uncontrollable hemorrhaging. I had 4 emergency surgeries in one year to stop the bleeding. The last straw was that i developed a blood clot in my leg which they concluded that it was because of the tamoxifen. So I am no longer on it. From what I was told initially cysts are very common while on tamoxifen and 85% of the time they get reabsorbed naturally. But I wanted to let you know that for me they evolved to a more serious issue. So my advise is to keep an eye out, listen to your body. If you start bleeding and you haven't had a period, get an ultrasound asap and if possible a Sonohysterography (they inject saline into your uterus to get a clearer look).

I used to put warm water bottles on my lower belly and it really helped resolve the cysts a bit quicker.

hope this helps
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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
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8 YEARS NED
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Old 06-09-2016, 03:23 PM   #2
Cathya
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Location: Ontario, Canada
Posts: 752
Re: Ovarian cramping. On tamoxifen and Herceptin. Prone to O cysts

Hi;

I also had triple positive BC. Diagnosed the end of 2004, apart from all else I began arimidex mid year following AC/Taxol and radiation. Took it for 7 years. Following a small bleed it was discovered I had a large mass only a small amount being cancerous....stage 1c ovarian cancer. I have had genetic testing to discover I have a BRCA 1 VUS. Given your age I would wonder about genetic testing. I was originally told that my kind of BC would not likely spread to my ovaries and have indeed been told that this is not a spread but rather a new cancer. It also took from 2005 to 2015 to occur. I had no symptoms of the ovarian cancer although the mass was large. I would certainly recommend that everyone have the CA125 test at least annually so that any change over time can be monitored. You might have to pay for it but it is well worth the cost. A recent report indicated that trends of this test even within the normal range can be indicative of ovarian cancer.

Best regards,

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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