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Old 03-22-2012, 08:50 PM   #1
Elizabethtx
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Tamoxifen trouble
I had a transvaginal ultrasound on Wednesday after my annual visit to watch for changes associated with Tamoxifen. Well, I got the dreaded phone call this morning that I have endometrial thickening and needed to schedule a biopsy! I have been on Tamoxifen for 18 months. Anyone out there have this experience? Of course I am worried and hope and pray all is ok. It is no fair that the treatment causes other serious issues. It seems according to the US that my ovaries are post menopause (chemo pause induced) Wondering if anyone has had this side effect from Tamoxifen.
Elizabeth
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Diagnosed: Feb 2010 @ 46 yrs old
Invasive Ductual Carcinoma, left
2/28/10 Bilateral Mastectomy (tissue saving for future reconstruction)
3.2 cm 2/18 +lymph nodes
Stage 2b; E+/P+/Her2 +++
Nottingham score grade 2
Ki67 30%
3/2010 A/C 4 DD/2wks
5/2010 Herceptin/Taxotere 4D/3wks
8/2010 Herceptin until May 2011
Tamoxifin 20mg
9/2010 RAD 34 treatments
Pet scan Aug 2010 clear
Port removed July 2011
Bone scan, chest MRI 12/11 clear
Vaccine trial began Oct 2011
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Old 03-22-2012, 11:49 PM   #2
Jackie07
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Re: Tamoxifen trouble
Elizabeth,

I never had the check. But I took initiative to have a genetic testing done after my recurrence, and later had a hysterectomy/oophorectomy when another related (HNPCC cluster) family cancer incident (including myself there are three cases) was found.

The surgeon told us afterwards that there were some hyperplesia (increase in number of cells/ proliferation of cells) showing on the inside of my uterus already. (By then I'd taken Tamoxifen for about 4 years altogether.)
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3 Infertility tmts 99 > 3 u. fibroids > Pills
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IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
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Last edited by Jackie07; 03-22-2012 at 11:54 PM..
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Old 03-23-2012, 03:10 PM   #3
Elizabethtx
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Re: Tamoxifen trouble
I had the biopsy today and blood work to determine FSH and estrogen levels. Will know a few answers next week. Thanks, Jackie, I'm glad you caught the hyperplasia in time.
__________________
Diagnosed: Feb 2010 @ 46 yrs old
Invasive Ductual Carcinoma, left
2/28/10 Bilateral Mastectomy (tissue saving for future reconstruction)
3.2 cm 2/18 +lymph nodes
Stage 2b; E+/P+/Her2 +++
Nottingham score grade 2
Ki67 30%
3/2010 A/C 4 DD/2wks
5/2010 Herceptin/Taxotere 4D/3wks
8/2010 Herceptin until May 2011
Tamoxifin 20mg
9/2010 RAD 34 treatments
Pet scan Aug 2010 clear
Port removed July 2011
Bone scan, chest MRI 12/11 clear
Vaccine trial began Oct 2011
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Old 03-23-2012, 07:39 PM   #4
Becky
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Re: Tamoxifen trouble
I exactly had this problem - exactly. Went for my first ultrasound to see Tamoxifen's effects and my lining was 14mm (and I had begun menstrating again after chemopause). I had a biopsy which was fine. However, I got my ovaries (and tubes) removed and switched to Arimidex. A couple of months afterwards I had a repeat ultrasound where the lining was nonexistant - it should be with no estrogen (between the oophorectomy and Arimidex). What a crap shoot this all is! I was 46 at the time - near your age now.

The biopsy is a bit uncomfortable - eh?
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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 03-25-2012, 01:11 PM   #5
CoolBreeze
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Re: Tamoxifen trouble
I did have some endometrial thickening on tamoxifen and it happened quite quickly. Unfortunately, I also progressed to Stage IV (liver mets) while on Tamoxifen so stopped it. Later scans show normal uterus.

Thickening is a very common side effect of tamoxifen. You will just have to be watched closely. Here's hoping all is well.
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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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Old 03-25-2012, 03:00 PM   #6
Elizabethtx
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Re: Tamoxifen trouble
Had the biopsy on Friday. Oh yes, Becky, I would say more than uncomfortable! Wow, don't want to do that again. I should have the results by next Friday. Hope it is simple thickening. If there is such a thing. It seems it is such a trade off once the BC diagnosis. The treatments cause all other kinds of issues. Ann, I'm going to agree with you today...tamoxifen, worst drug ever! I also did the hormone blood panels to check to see if my ovaries are working any longer.
Thanks for the well wishes!
__________________
Diagnosed: Feb 2010 @ 46 yrs old
Invasive Ductual Carcinoma, left
2/28/10 Bilateral Mastectomy (tissue saving for future reconstruction)
3.2 cm 2/18 +lymph nodes
Stage 2b; E+/P+/Her2 +++
Nottingham score grade 2
Ki67 30%
3/2010 A/C 4 DD/2wks
5/2010 Herceptin/Taxotere 4D/3wks
8/2010 Herceptin until May 2011
Tamoxifin 20mg
9/2010 RAD 34 treatments
Pet scan Aug 2010 clear
Port removed July 2011
Bone scan, chest MRI 12/11 clear
Vaccine trial began Oct 2011
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Old 03-26-2012, 08:34 AM   #7
jane2638
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Re: Tamoxifen trouble
Dear Elizabeth and others,

This is exactly the sort of thing I've been dreading from Tamoxifen. Are there any ER+/PR- ladies out there who have had *positive* experiences with Tamoxifen?

Take care,
Jane
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right mast Nov. 2011
6 rounds TCH chemo started Dec. 16, 2011
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Old 03-26-2012, 01:44 PM   #8
tricia keegan
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Re: Tamoxifen trouble
Elizabeth I did'nt have this issue as only took Tamox for six weeks and then had an ooph and take Arimidex. However a few ladies I know on the Komen boards did have this very same issue and nothing sinister was found but most decided on a hyst after that and took an A1, good luck!
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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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