 |
12-07-2015, 06:09 PM
|
#1
|
|
Senior Member
Join Date: Jan 2012
Posts: 362
|
Tamoxifen has become an issue
I am having a horrible time with Tamoxifen. This year alone I have had 4 emergency D&Cs for uterine polyps. I hemorrhage uncontrollably and end up in the ER. Now, today, I spent my whole day in the ER because I felt a horrible pain in my leg that turned out to be. Blood clot caused by Tamoxifen. So, I on a blood thinner for 3 months.
And now I need to figure out just how important Tamoxifen is for me. If I continue on Tamixifen I will continue to get polyps and if I hemorrhage while on the thinner, I could bleed out much faster and it could be deadly. If I stop Tamoxifen, I would need to get a full hysterectomy and oopherectomy and switch to Arimidex. Zoladex or Lupron is not an option as I tried that and had a horrible reaction to the drugs.
So I feel stuck. Advice?
__________________
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
|
|
|
|
12-07-2015, 07:21 PM
|
#2
|
|
Senior Member
Join Date: Oct 2012
Posts: 645
|
Re: Tamoxifen has become an issue
I feel terrible for you. No advice, but a second opinion is called for as to the benefit of tamoxifen for you. I had an awful time on tamox but nothing compared to what you've been going through. I'm kind of surprised that your doctor is still allowing you to use it. As you stated, the side effects can be life threatening.
Best
Janis
__________________
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!
|
|
|
|
|
12-07-2015, 09:27 PM
|
#3
|
|
Senior Member
Join Date: Mar 2014
Posts: 46
|
Re: Tamoxifen has become an issue
Your ER and PR levels seem on the lower side. I might ask for a Tamoxifen risk/benefit assessment from your doctor. Wishing you better days ahead, Cindy
__________________
Jan 2014 -mammogram, targeted mammogram, and ultrasound.
Feb 2014 -stereotactic biopsy (IDC, lobular growth pattern, grade 3, ER+ 30%, PR+ 1%, HER2+ 3+, ki67 10%), MRI - tumor up to 7cm, Lymph node biopsy - malignant.
Mar 2014 -port placement, chemo begins (TCHP)x6 every 3 weeks, Neulasta shots.
June 2014 complete chemo series, Herceptin only until Mar 15
Aug 2014 -Bilateral mastectomy with left axillary dissection (PCR in left breast, cancer cell found in lymph node).
Sept 2014 -radiation 28x
Oct 2014 complete radiation
Nov 2014 - begin Arimidex
|
|
|
|
|
12-08-2015, 08:12 AM
|
#4
|
|
Senior Member
Join Date: Mar 2011
Location: Pittsburgh, PA.
Posts: 260
|
Re: Tamoxifen has become an issue
I was in the same boat with Tamoxifen but not as severe as you. I decided to do the full hysterectomy with ovary removal and move to Arimidex. I am so happy I choose that route - feel great and no problems so far with Arimidex. The hysterectomy was about 6-9 weeks recovery but now I'm back doing yoga, have no pain, and feel an inner comfort knowing I did the right thing for myself.
Good luck with whatever you decide - feel free to PM me with any questions.
Jessica
__________________
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
|
|
|
|
|
12-08-2015, 02:00 PM
|
#5
|
|
Senior Member
Join Date: Oct 2014
Posts: 293
|
Re: Tamoxifen has become an issue
Bless your heart. It's always something, isn't it? I had the risk assessment discussion with my oncologist last month. Like you I am low ER positive (I'm PR negative though). There's not a substantial benefit for us taking hormone blockers, according to reports. Since there could be some benefit though, you have to weigh the risks to the benefits. However, something I had considered and my oncologist gave it some weight is that, at the end of the day, should you have a recurrence, the HER+ is more of a threat than the ER+. I think Janis is right and that you should get a second opinion and discuss all the possible options and then make the decision that is right for you. Good luck and keep us posted. (sending cyber hugs)
|
|
|
|
|
12-08-2015, 05:41 PM
|
#6
|
|
Senior Member
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
|
Re: Tamoxifen has become an issue
Europa,
With an ER status of 10% and PR of 5% I just do not think I would continue on the anti-hormonal therapy especially with all the associated side effects you have experienced. The benefit vs safety issues seems clear to me. Is your Onc. pushing you to continue? I'd dump that crap in the nearest crapper and go on with living. You have done nearly 3.5 years of Tamoxifen which is commendable for anyone and hugely so in light of your many complications.
__________________
Smile On!
Laurel
Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara
15 Years NED
I think I just might hang around awhile....
|
|
|
|
|
12-09-2015, 07:29 AM
|
#7
|
|
Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
|
Re: Tamoxifen has become an issue
My sister had dcis so she had lumpectomy and radiation. Then Tamoxifen. She also got a blood clot and was in the hospital for a day on Heparin to bust it up and then warifin. She can never take Tamoxifen again and nor should you. She was highly erpr positive. Her onc wanted her to get an oophorectomy but she didn't have insurance and was tapped out money wise because of the surgery and radiation. That was 4 years ago and she is ok but due to high erpr I feel she is still at risk. She is 53 now but not quite thru menopause but I keep urging her to take Arimidex as soon as she can. I just want you to know that if blood clots happen with tamoxifen, stay away from it. I did get my ovaries removed to be on Arimidex because I got eye floaters from tamoxifen and it scared me.
__________________
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"
|
|
|
|
|
12-09-2015, 09:53 AM
|
#8
|
|
Senior Member
Join Date: Mar 2014
Location: UK
Posts: 563
|
Re: Tamoxifen has become an issue
Oncologist gave me Tamoxifen about 2 years ago. When I got home I read the side effects to find blood clots an issue (Family history of blood clots) so contacted my Nurse and said I was not keen on taking. Eventually Nurse & Oncologist agreed to put me on Femara. At first they were not keen because less than year since last period. They then told me that Femara was the drug of choice!! Talk about mixed messages! I have now been on Femara for 2 years & main side effect is stiff joints.
|
|
|
|
|
12-09-2015, 04:51 PM
|
#9
|
|
Senior Member
Join Date: Jan 2012
Posts: 362
|
Re: Tamoxifen has become an issue
Well, we have a plan. First, I am no longer taking Tamoxifen. Secondly, I will be going through a hysterectomy and oopherectomy. I will then start Arimidex and see how that goes. I have to wait until I'm theraputic on this blood thinner before I can attempt surgery since I have to be off the thinners for 3 days prior to surgery. But at least we have a plan.
__________________
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
|
|
|
|
|
12-09-2015, 04:56 PM
|
#10
|
|
Senior Member
Join Date: Dec 2013
Posts: 1,045
|
Re: Tamoxifen has become an issue
It sounds like a good plan!
Carol Ann
__________________
July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.
Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".
Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.
Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.
Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.
Nov 25, 2013 Begin 6 rounds TCH.
March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!
March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.
March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)
April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm
May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)
June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia
Nov 17, 2014 FINAL Herceptin!
Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.
Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.
Dec 17, 2014 Port is OUT!
January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
|
|
|
|
| Thread Tools |
|
|
| Display Modes |
 Linear Mode
|
Posting Rules
|
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts
HTML code is Off
|
|
|
All times are GMT -7. The time now is 11:03 AM.
|
