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10-08-2017, 01:35 PM
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#1
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Member
Join Date: Sep 2016
Posts: 10
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Anyone switch from Arimidex to tamoxifen?
I just about cant stand another minute on Arimidex!
The knee pain is horrible. I feel like I'm 100 years old. I have pain in my lower back too, but the knees are the worst.
Moving helps and hurts...I have pain just laying in bed.
After a year of trying to adjust, my onc switched me to tamoxifen. I haven't started taking it yet. I'm taking a week or two off to see how I feel without it.
Anyone have experience switching with positive (or negative) results?
Thanks
__________________
Dee
Dx 3/1/2016 on routine mammo, DCIS/IDC, Left, 1.2cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR-, HER2+ (IHC) BRCA neg
Surgery 4/5/2016 Mastectomy: Left; Reconstruction w/silicone implant
Chemotherapy 7/6/2016 TCH 4 rounds
1 year total Herceptin
Arimidex 5 year plan (stopped after 1 year due to unmanageable SEs)
Tamoxifen started 10/2017
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10-10-2017, 02:57 PM
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#2
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Senior Member
Join Date: Oct 2014
Posts: 293
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Re: Anyone switch from Arimidex to tamoxifen?
Dee,
I don't have experience with tamoxifen but someone else on the board had once noted that they take their pill at bed time and they've had no issues on it. Sorry I can't offer more input but hopefully others will jump in and give their take on the matter.
Good luck!
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10-11-2017, 06:20 AM
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#3
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Senior Member
Join Date: May 2013
Posts: 570
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Re: Anyone switch from Arimidex to tamoxifen?
Dee, I have not made that switch but I do have some experience with SEs from Arimidex. It was darn near crippling the first time I took it. I went off it for a month and restarted it and things were much better but ultimately, I discontinued it because I am not ER+ (I have a wacky HR status) and they aren't sure it will benefit my PR+ status.
__________________
Tracy Arcari
___________________________________________
11/12 BSE ignored the lump for SIX months.
5/1/13 IDC ER/PR- HER2/neu+++
5/14/13 Mastectomy and SN biopsy
5/20/13 IDC Stage IIb Grade 3 Nodes 1/4 also IDC and DCIS multi focal in remaining dissected tissue.
5/30/13 MUGA and CT thorax, abdomen & pelvis, establish baseline.
6/4/13 Installed my little purple power port.
6/14/13 Chemo started TCH
6/14/13 Informed of suspicious ares on scans scheduled PET.
7/1/13 PET Scan NED!
9/27/13 FINAL CHEMO taken! ----well, maybe not.
10/15/13 Three little tattoos.
10/24/13 Radiation begins and fourth tattoo placed.
11/27/13 Perfectly radiant! Radiation completed the day before Thanksgiving and so, so much to be thankful for this year and every day hereafter.
1/2/14 Happy New Year, you have a Goiter? Muga down to 59%.
1/17/14 Hashimoto's Dz Dx'd. Now maybe I'll feel BETTER!
5/2/14 Herceptin completed! New kitten!
8/19/14 Prophylactic mastectomy (right) and PORT OUT! I'm DONE and now I really am a SURVIVOR.
2/15 Started not feeling so swell. Memory lapses and GI issues with nausea and blurry vision.
4/30/15 U/S cystic gallbladder, cyst on right ovary and mass in my uterus. GYN consult scheduled---and cancelled. I'm not ready.
5/4/15 Brain MRI clear (big sigh of relief)
7/30/15 Back Pain
8/31/15 Radiograph: compression fracture L2
9/10/15 Bone Scan positive
9/21/15 CT scan conclusive for tumor
10/1/15 CT guided biopsy & Brain to Pelvis MRI reveal additional lesions on spine C6, T10, T11 and L2 is collapsing.
10/8/15 Abbreviated pathology: new tumor(s) poorly differentiated carcinoma consistent with known breast primary.
ER-/PR+ (40%) HER2/neu+++ Ki-67 4% Pancytokeratin AE1/3 Strong Positivity in all malignant cells.
10/13/15 Abnormal Dexa: moderate risk of fracture to both femoral head/neck R&L. Significant risk to lumbar spine.
10/14/15 Radiation consult back to the cooker.
10/20/15 MUGA 50% down from 54% after a year off Herceptin (???)
10/21/15 Kyphoplasty L2
10/22/15 Re-start Chemo: Perjeta, Herceptin & Taxotere
10/26/15 PET Scan confirms C6, T10-11, L2, new lesion noted at L4 but no visceral involvement---Happy dance!!!
10//29/15 Xgeva
10/29/15 Radiation Simulation--three new tattoos to add to my collection. Just call me Dotty.
10/30/15 CA27-29 63 U/mol (<38 U/mol)
11/3/15 First Trip to see Dr. E. Mayer at DFCI
11/4/15 Surgical consult to re-install my little purple power port.
11/9/15 Radiation treatment one of five.
11/10/15 Installed my little purple power port and not a moment too soon, took them four tries to get an IV started today.
Yes, we really are going down this road again.
12/5/15 CT for suspected pulmonary embolism demonstrates increase in T10-11 mets.
12/8/15 Bone Scan uptake at T10-11 (not seen 9/17/15) & Right 8th Rib (not evident on PET 10/26/15)
12/10/15 Consult Re: PROGRESSION. Halt THP due today. Schedule PET and order TDM1 for next week. PLAN B.
12/14/15 PET scan: NO PROGRESSION! THP is working, metabolic activity minimal. Merry Christmas to me! Sticking with PLAN A, it's working.
1/7/16 Start Taxol weekly instead of Taxotere (has been too taxing and not rebounding between txs.) Zometa instead of Xgeva.
3/28/16 CT shows new sclerotic lesions on T12, L3, L5, L6, right ilium and head of right femur. No uptake on Bone Scan (progression????)
3/31/16 Discontinue Taxol start Arimidex, still getting H&P.
6/2/16 Discontinue Arimidex and start Exemestane.
6/18/16 PET is NEAD!!
7/1/16 Discontinue Exemestane and restart Armidex (SEs)
8/29/16 CT/Bone Scan Stable (still uptake at T10-11)
10/3/16 BSO pathology negative
10/10/16 MRI: Brain clear!
10/14/16 Switched care to Harold Alfond Center for Cancer Care
11/24/16 Xgeva, New MO preference to Zometa
12/12/16 CT/Bone scan Mostly stable significant uptake at L2 plan to PET
1/12/17 PET shows NEAD celebrate with a new puppy!
3/29/17 CT & BS = NEAD
7/31/17 Aetna denies access to H&P <gearing up for a fight>
8/4/17 CT& BS= STABLE
8/9/17 No treatment, Aetna still denying H&P
8/14/17 Aetna appeal approved H&P through February 2018!
2/5/18 CT & BS = STABLE
/ /
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10-11-2017, 03:14 PM
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#4
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Senior Member
Join Date: Oct 2012
Posts: 646
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Re: Anyone switch from Arimidex to tamoxifen?
Hi Dee,
Why wouldn't your Onc put you on another AI like letrozole or aromasin? I was on tamoxifen for 4.5 years and hated every second. I was on letrozole for 5 years the first time and 4 years this time so far. Much better for me than tamoxifen, but everyone is different.
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!
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10-13-2017, 11:47 AM
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#5
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Senior Member
Join Date: Oct 2013
Posts: 474
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Re: Anyone switch from Arimidex to tamoxifen?
Dee
Trying a different Aromatase Inhibitor is an option. If the oncologist decides on Tamoxifen you have to be aware that Tamoxifen is an inactive prodrug. It becomes an active drug, Nor-Tamoxifen in your body using an enzyme called Cyp-2D6. Drugs that inhibit this enzyme prevent the formation of this active form.
There are a lot of these drugs but many of the anti-depressants ie Prozac (Fluoxetine) Paxil (Paroxetine), and Wellbutrin (Bupropion) do this. So does Quinidine but Quinidine is a heart drug and I doubt you would be taking this.
Paul
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10-13-2017, 07:41 PM
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#6
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Re: Anyone switch from Arimidex to tamoxifen?
I was on Arimidex for 8 years. Had to stop because of complicated bone issues. Onc put me on Tamoxifen and I had no discernable side effects at all.
Give it a shot!
__________________
Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
14 YEARS NED!
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10-14-2017, 06:43 AM
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#7
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Re: Anyone switch from Arimidex to tamoxifen?
I had started on Arminidex and had to make a switch. The headache pain was severe. Onc then had me try another AI which was Femara which worked find.
Wishing you best of luck with new treatment.
jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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