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08-24-2008, 11:47 AM
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#1
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Senior Member
Join Date: Jun 2007
Location: moved to Lancaster, Pa in June, 2010
Posts: 576
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Anyone not taking the AI's
Anyone out there ER/PR positive and not taking an AI to block the estrogen? I have taken all four at one time or another and have such debilitaing side effects. Now I am not on anything and feel so unprotected. My onc wanted me to give the aromasin another try which I tried for 3 weeks. I had such pain and cramping in my feet and hands and was retaining alot of fluid in my legs, feet and hands my pc put me on lasix and celebrex for the pain. Got so bad I could not work, so I have stopped it. I feel like such a failure at taking these meds, but they make me feel so bad. Worse than the chemo. Just wondering how others fair with these drugs.
__________________
Debbie in North Carolina
Diag 10/2006-high grade invasive ductal carcinoma- mastectomy L breast
2.5 cm tumor ER/PR pos-Her2+++
4 rounds A/C, 4 rounds Taxol
Herceptin every 3 weeks until Jan. 2008
6/18/07 prophylatic mastectomy R breast
8/2007 started aromasin/stopped arimidex (side effects)
12/07 stopped aromasin due to side effects (now what?)
Finished herceptin 1/8/08
started tamoxifen for 2 years then will switch to femera
allergic to tamoxifen started femera 4/2008
June 20, 2008 portacath removed
Learnig to live life to the fullest!
Stopped Femera due to side effects
July 28, 2008 start trial for breast cancer vaccine
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08-24-2008, 11:54 AM
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#2
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Senior Member
Join Date: Jan 2008
Location: Madison Wisconsin
Posts: 38
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I am on the herceptin every 3 weeks and the Tamoxifin daily. Sorry you are having so many problems! I have really had no issues up to this point with the Tamoxifin. I have only been on it since early July. Hope you find some magic!
Cheryl
__________________
10/23/07 first ever mammo turned 40
11/9 biopsy
11/12 dx ILC 1.5cm er/pr+, her2/neu+
11/20 MRI
11/30 biopsy
12/3 another ILC area 8mm
12/21 lft mastectomy with expander placement
12/26 NODES NEGATIVE! However not 2 small tumors.1 bigger one4x3x3.Also DCIS and LCIS noted.grade II,stage IIa.
1/29/08 port placed
1/31 BRCA negative
A/C Done.Taxol DONE
Herceptin every 3 weeks for 1 year
Tamoxifin for 5 years
New left Boob-7/29/08
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08-24-2008, 11:56 AM
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#3
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Debbie,
I have been taking Arimidex for almost three years. Had a lot of joint pain and stiffness until my GP put me on Lasix. It eliminated most of the problem. Which drug were you taking when you were on Lasix and how long did you take the Lasix?
__________________
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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08-24-2008, 12:04 PM
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#4
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Senior Member
Join Date: Jun 2007
Location: moved to Lancaster, Pa in June, 2010
Posts: 576
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Sassy,
I was on the aromasin, just stopped it 3 days ago and was put on the lasix 1 week ago. Thanks .
__________________
Debbie in North Carolina
Diag 10/2006-high grade invasive ductal carcinoma- mastectomy L breast
2.5 cm tumor ER/PR pos-Her2+++
4 rounds A/C, 4 rounds Taxol
Herceptin every 3 weeks until Jan. 2008
6/18/07 prophylatic mastectomy R breast
8/2007 started aromasin/stopped arimidex (side effects)
12/07 stopped aromasin due to side effects (now what?)
Finished herceptin 1/8/08
started tamoxifen for 2 years then will switch to femera
allergic to tamoxifen started femera 4/2008
June 20, 2008 portacath removed
Learnig to live life to the fullest!
Stopped Femera due to side effects
July 28, 2008 start trial for breast cancer vaccine
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08-24-2008, 12:12 PM
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#5
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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I had to give the Lasix a week or two, but it really did the trick with the stiffness.
__________________
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.......
14YEARS NED!
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08-24-2008, 12:15 PM
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#6
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Senior Member
Join Date: Jan 2006
Location: New Jersey
Posts: 46
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Hi Debbie,
I am highly ER positive, and am not taking any sort of anti-estrogen drugs. I found that tamoxifen made my neurological problems much worse and on top of that I felt miserable (worse than chemo). I tried three times. However, I must admit I am quite glad not to be on it any more. Estrogen does a lot of good stuff for your body. My onc was originally extremely concerned, but I am now reaching my five year anniversary, and all is well!
I don't see you as a failure at all. You tried, and did what was best for you.
Best,
Monica
__________________
Monica
Dx Nov 2003 HER2+++, ER+, PR+
1.7 cm. left breast, Grade 3, Two nodes out of six, stage IIA
Mastectomy right side
Lumpectomy left side
4 A/C, 4 Taxol plus 49 weeks herceptin
Radiation on left side
No tamoxifen or other hormonal drugs
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08-24-2008, 12:34 PM
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#7
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Senior Member
Join Date: Jun 2007
Location: moved to Lancaster, Pa in June, 2010
Posts: 576
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Monica, Thank you, you have made me feel so much better. I see you are almost 5 years out from diagnosis. That speaks volumes to me.
__________________
Debbie in North Carolina
Diag 10/2006-high grade invasive ductal carcinoma- mastectomy L breast
2.5 cm tumor ER/PR pos-Her2+++
4 rounds A/C, 4 rounds Taxol
Herceptin every 3 weeks until Jan. 2008
6/18/07 prophylatic mastectomy R breast
8/2007 started aromasin/stopped arimidex (side effects)
12/07 stopped aromasin due to side effects (now what?)
Finished herceptin 1/8/08
started tamoxifen for 2 years then will switch to femera
allergic to tamoxifen started femera 4/2008
June 20, 2008 portacath removed
Learnig to live life to the fullest!
Stopped Femera due to side effects
July 28, 2008 start trial for breast cancer vaccine
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08-25-2008, 10:10 PM
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#8
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Debbie, I am er & pr positive and I've had an on-going problem with my FSH & estradiol levels. I had an ooph so I could go on Femara but for some reason I'm still not menopausal by my labs.
It's a long story so I won't get into it but I just went back up to City of Hope over this same issue and it seems there is nothing anyone can do about this? I had my ooph over a year ago and I'm still producing estrogen. We even tried zoladex on top of my ooph and that didn't even do it.
I am worried about not being on one but I've done everything I can about this issue. I'm at my wits end. Being stage IIIA with positive nodes and no radiation I want to do everything I can to prevent recurrance but for now I'm not on any AI's. I am 2 yrs & 7 months out and NED. (Knock on wood.) Not sure if this helps.
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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08-26-2008, 04:32 AM
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#9
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Senior Member
Join Date: Jun 2007
Location: moved to Lancaster, Pa in June, 2010
Posts: 576
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Thanks Chelle, it does help knowing there are other out there not taking the AI's and still doing well. Hope you condtinue to be NED.
__________________
Debbie in North Carolina
Diag 10/2006-high grade invasive ductal carcinoma- mastectomy L breast
2.5 cm tumor ER/PR pos-Her2+++
4 rounds A/C, 4 rounds Taxol
Herceptin every 3 weeks until Jan. 2008
6/18/07 prophylatic mastectomy R breast
8/2007 started aromasin/stopped arimidex (side effects)
12/07 stopped aromasin due to side effects (now what?)
Finished herceptin 1/8/08
started tamoxifen for 2 years then will switch to femera
allergic to tamoxifen started femera 4/2008
June 20, 2008 portacath removed
Learnig to live life to the fullest!
Stopped Femera due to side effects
July 28, 2008 start trial for breast cancer vaccine
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08-26-2008, 05:11 AM
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#10
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Senior Member
Join Date: Sep 2005
Location: Central Florida
Posts: 503
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DHealy,
I got off the Tamoxifen becasue of horrid side effects... My body has been wanting to go into menopause for a year or so and just last month I got my period again.
My ER+ is really low (15% positive) and I am PR- as well. I feel unprotected at such a low ER level...
What % are you ?
Maria
__________________
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Dx'd 8/04 at 41
Stage 1 for some onc's; Stage II for others (if you add up the sizes of all tumors).
Infiltrating DCIS
HER2+, ER+10% & PR-
.9cm tumor not visible on mammo, but palpable; visible on ultrasound
Lumpectomy/ clear margins, no nodes
Had Breast MRI after lumpectomy that revealed two more tumors in same quadrant(.4cm and 1.6cm) that were not visible on either mammo or ultrasound.
Re-excision
DD AC+T; Herceptin one year
Rads
NED/Taking Tamoxifen reluctantly
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08-26-2008, 06:13 AM
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#11
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Senior Member
Join Date: Oct 2006
Location: Southern California
Posts: 900
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Food for thought?
There is an interesting clinical trial being done at City of Hope regarding mushrooms as aromatase inhibitors. A co-worker of mine is a friend of one of the investigators (Dr. Chen). He spoke with him over the weekend about this and found that the capsules being given are the equivalent of 80 grams (approx 3 oz) of mushrooms. Below are links to the article in COH newsletter and to the clinical trial info.
http://www.cityofhope.org/about/publ...-benefits.aspx
http://www.clinicaltrials.gov/ct2/show/NCT00709020
__________________
Gerri
Dx: 11/23/05, Lumpectomy 12/12/05
Tumor 2.2 cm, Stage II, Grade 3, Sentinel Node biopsy negative
ER+ (30%) /PR+ (50%), HER2+++
AC X 4 dose dense, Taxol X 4 dose dense
Herceptin started with 2nd Taxol, given weekly until chemo done
then given every 3 weeks for one year ending on March 16, 2007
Radiation 30 treatments
Tamoxifen - 2 yrs (pre-menopausal)
May 2008 - Feb 2012 Femara
Aug 2008 - Feb 2012 Zometa every 6 months
March 2012 - Stop Femara, now Evista for bone strengthening
********** Enjoy the little things, for one day you may look back and realize they were the big things. - Robert Brault
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08-26-2008, 10:52 AM
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#12
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Senior Member
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
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YES food for thought
Thanks Gerri.
I don't advise anyone to do what I am doing, but will answer dhealey's question. I am Stage I, T1c (1.6 cm IDC with some DCIS), diagnosis in 2002, NED. I am not taking the extract of WBM but am eating fresh WBM daily. (I also take freshly ground flaxseed daily.)
I was HER2+++ by HercepTest, ER+ and PR+. I did CAF x 6, rads, and 1 3/4 years of tamoxifen. I have had no Herceptin. I did 2 days of Arimidex and then stopped.
AlaskaAngel
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08-26-2008, 03:09 PM
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#13
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Senior Member
Join Date: Jun 2007
Location: moved to Lancaster, Pa in June, 2010
Posts: 576
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To answer your question Maria, I am ER 80% pos and PR 60% pos. Quite high. I have stopped the aromasin and am still taking the lasix and celebrex, problems are slowly disapating. I truly am looking for some natural way to stop the estrogen. Alaska and Gerri I will be looking into your suggestions. The only down side of the flaxseed, my onc had discurraged this early on because it was thought to encourage estrogen production. You hear so much for and against different things it makes you dizzy trying to decide what's best. Thanks again for all those who have replied.
__________________
Debbie in North Carolina
Diag 10/2006-high grade invasive ductal carcinoma- mastectomy L breast
2.5 cm tumor ER/PR pos-Her2+++
4 rounds A/C, 4 rounds Taxol
Herceptin every 3 weeks until Jan. 2008
6/18/07 prophylatic mastectomy R breast
8/2007 started aromasin/stopped arimidex (side effects)
12/07 stopped aromasin due to side effects (now what?)
Finished herceptin 1/8/08
started tamoxifen for 2 years then will switch to femera
allergic to tamoxifen started femera 4/2008
June 20, 2008 portacath removed
Learnig to live life to the fullest!
Stopped Femera due to side effects
July 28, 2008 start trial for breast cancer vaccine
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08-26-2008, 04:26 PM
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#14
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Senior Member
Join Date: Sep 2005
Posts: 161
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I've been off Arimidex now almost a year after taking it for 2 1/2 years. (Tried the other AIs, too). The side effects of joint and bone pain were horrible and nothing really helped.
__________________
Diag. Oct. 2004 age 54 left breast
Stage 1 grade 3; 6mm IDC; unknown amount of DCIS
with comedo necrosis; node neg.
Nottingham Grade 7/9
ER 91% PR 62%; Her2 3.6 by ICH; KI-67 35%
Nov 2004 Lumpectomy; SNB failed so had
full axillary clearance;
Dec 2004 2nd lumpy for clean DCIS margins.
Jan/Feb 2005 4 A/C dose dense;
33 rads finished 6/2005;
Began 5 years Arimidex in 6/2005
No Herceptin
9/2007 Quit Arimidex due to severe side effects.
NED
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