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Old 07-08-2010, 08:47 AM   #1
sarah
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Do you take anti-hormonals at night?

Hello,
My onc told me to take Femara at night so as to have less side effects or be less disturbed by them, so I did. I did have many of the side effects you mention plus the most worrying for me was bone loss. I was then given Clastoban which improved my bone density.
Personally I was so scared having invasive cancer that I immediately bought several plastic bottles with the days on them so as to be sure I didn't become confused and I certainly didn't want to miss taking any.
It does seem weird that we all take the same pill regardless of what size we are.
I found the hot flashes easier to deal with at night and the hand and foot pain also. The lack of estrogen is a big thing and I know some people went on a mild anti-depressant to combat wild mood swings and some used various vaginal creams for dryness.
Cancer definitely isn't for sissies and I am in awe and inspired by so many of you in the wonderful attitude you maintain all through this struggle.
Again, I wish to express my gratitude for this wonderful site.
Health and Happiness
Sarah
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Old 07-08-2010, 09:03 AM   #2
caya
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Re: Do you take anti-hormonals at night?

Hi Sarah,

I also take my Femara at night. I have been on Effexor 75 gm. for 3 years - I started it when on Tamoxifen and the hot flashes were awful - I mean drenching the sheets at night... Hot flashes down to basically a few/week once on the Effexor, it also helped my anxiety.

As for vaginal dryness, this has been a problem. I had constant UTIs - I was taking an antibiotic daily. I recently stopped this. I say a terrific uro-gyn. who recommended a vaginal probiotic called Probiostat - you use it for 10 days, then 2/week. I am just completing the 10 day course, and so far, so good. I also religiously use 100% virgin organic coconut oil, morning and night. This has also helped. Replens did not do it for me, actually caused more burning.

As for joint/muscular pain, my GP put me on Meloxicam, 7.5 gm. 1pill/day, an anti-inflammatory. This has also helped. Taking a warm bath with Epsom salts or Dead Sea salts a couple of times per week also helps.

Also all the supplements - calcium, Omega 3, curcumin, glucosamin chondroitin,Vitamin D3, Vitamin B 12 shot monthly. Probably a couple of others I can't remember, lol...

Yes, it's always something, ah cancer, the gift that keeps on giving....

all the best
caya
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ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08

Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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Old 07-08-2010, 09:22 AM   #3
sarah
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Re: Do you take anti-hormonals at night?

Hello Caya,
Thanks for all of these suggestions. I am now part of a cancer support group for English speakers here in the south of France so these suggestions will come in handy when peole have these problems. I just finished 6 years on Herceptin and will stop Femara soon and then in 3 months, Clastoban so soon I will be drug free and hopefully they've killed the bloody buggers!
yes, have to have a black comedy type of humor to take cancer!
Stay well and keep enjoying life.
Health and Happiness
Sarah
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Old 07-08-2010, 03:53 PM   #4
hutchibk
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Re: Do you take anti-hormonals at night?

I take my Tamoxifen at night. I also used to take my Aromasin at night as well.

I am lucky that I don't have much side effect from it... power surges are about non-existent, moods don't swing but I do have just a touch of extra impatience sometimes, no joint pains, and no extreme probs w/ vaginal dryness. About every 18 mo. I do get a UTI, but it is easily fixed w/ short term anti-biotic.

I haven't tried any of these fixes yet, so I can't recommend any of them, but here is a blog on the subject by a different Brenda, another b/c survivor who I know. It looks to have a lot of good info in it.

http://www.breastcancersisterhood.co...Breast_Cancer/
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NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 07-08-2010, 04:39 PM   #5
Rich66
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Re: Do you take anti-hormonals at night?

Mom started Boswellia (6 GNC tabs /day) in November and immediately felt joint relief...wasn't the purpose, but a welcomed side effect.
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Old 07-08-2010, 05:47 PM   #6
tricia keegan
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Re: Do you take anti-hormonals at night?

I've always taken my arimidex at lunchtime, I began so I'd remember to take it and the habit stuck!
Thankfully other than some joint stiffness I don't have any unmangable side effects and hope to continue on it after my five years are completed.
However, I do find it's become easier to tolerate the longer I've been on it, either that or I've just become used to it and don't remember normal anymore!
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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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Old 07-08-2010, 08:46 PM   #7
flynny
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Re: Do you take anti-hormonals at night?

I take my tamoxifen at night. I haven't had many SE's since November/December (when my period returned). It concerns me a bit, but I am meeting with my onc this Monday, July 12th to bring up my concerns. My right knee is a bit bothersome, but nothing I can't handle. Sex drive... in the gutter!
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Jan '07 felt lump (PCP "thought" it was a cyst)
Nov '07 "bloody nipple discharge" (OB-GYN "thought" I had fibrocystic breasts and told me to take 400 IU's of Vitamin E)
Note: Mother was dx w/BC in 2004 (ER/PR+ & HER2+) & mets to brain April 2007 (she passed away June 17, 2008)
2/1/08: Biopsy Dx: DCIS (age 34)
2/22/08: Surgery R-side Mast
2/28/08: 1st Path Rpt Dx: IDC 1.8cm tumor & DCIS 2.1cm
2nd Path Rep DFCI - IDC (0.9cm) & DCIS (2.1cm)
Stage 1b/Gr 3; ER+(5%), PR+(2%), HER-2+++
5/5 nodes NEG; Clear Margins
Chemo: AC 4 rnds (1st one 3/31/08) finished 6/2/08
TH (Taxol/Hercepin) 12 weeks (1st one 6/25/08) finished 9/8/08
Herceptin 9 mos (every 3 weeks) finished 6/8/09
BRCA 1/2 NEG
Bio: Age 39, married to James 1999, 2 boys 12 & 10 yo
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Old 07-09-2010, 10:31 AM   #8
Rich66
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Re: Do you take anti-hormonals at night?

From a vitamin D thread:

Cancer Nurs. 2009 Mar-Apr;32(2):143-50.
Vitamin D insufficiency and musculoskeletal symptoms in breast cancer survivors on aromatase inhibitor therapy.

Waltman NL, Ott CD, Twiss JJ, Gross GJ, Lindsey AM.
College of Nursing, University of Nebraska Medical Center, Lincoln, NE, USA.
Breast cancer survivors (BCSs) on aromatase inhibitor (AI) therapy often experience musculoskeletal symptoms (joint pain and stiffness, bone and muscle pain, and muscle weakness), and these musculoskeletal symptoms may be related to low serum levels of vitamin D. The primary purpose of this pilot exploratory study was to determine whether serum levels of 25-hydroxyvitamin D (25[OH]D) concentration were below normal (<30 ng/mL) in 29 BCSs on AI therapy and if musculoskeletal symptoms were related to these low vitamin D levels. The mean (SD) serum 25(OH)D level was 25.62 (4.93) ng/mL; 86% (n = 25) had levels below 30 ng/mL. Patients reported muscle pain in the neck and back, and there was a significant inverse correlation between pain intensity and serum 25(OH)D levels (r = -0.422; P < .05 [2 tailed]). This sample of BCSs taking AIs had below normal levels of serum 25(OH)D despite vitamin D supplements. This is one of the few studies to document a significant relationship between vitamin D levels and muscle pain in BCSs on AI therapy. Findings from this pilot study can be used to inform future studies examining musculoskeletal symptoms in BCSs on AI therapy and relationships with low serum levels of vitamin D.

PMID: 19125120 [PubMed - indexed for MEDLINE]
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Old 07-09-2010, 10:46 AM   #9
karen z
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Re: Do you take anti-hormonals at night?

Hi. I take my Femara at night.
I, too, worry about missing pills of various types so have developed a system of moving each bottle of pills "forward" (whether on the counter or now in a nice large space in a kitchen cabinet) once I have taken. By the end of the day all of my pill bottles have been moved forward. The next day I push them all back and start over. Maybe a bit strange but it works well for me.
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Old 07-09-2010, 08:13 PM   #10
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Re: Do you take anti-hormonals at night?

I have a different question concerning anti-hormonals. I have been taking Arimidex for about 4 1/2 yrs now (following lumpectomy, chemo and rads). I am scheduled for surgery in about a week (hysterectomy) and am wondering if I should stop taking the Arimidex until after the surgery. My gyn said she isn't too familiar with Arimidex but thinks I should continue to take it. I think I'll ask my onc about it Monday but since it's on my mind right now I thought I'd see if anyone here has had any experience with this.

thank you,
Debbie
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Old 07-11-2010, 12:57 PM   #11
Rich66
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Re: Do you take anti-hormonals at night?

My mom was on Arimidex during parathyroid surgery without incident. But might want to look into potential thrombo/clotting issues.
Will you be having general anesthesia?
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Old 07-11-2010, 05:41 PM   #12
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Re: Do you take anti-hormonals at night?

Yes. It will be general anesthesia. Good to know your mom did okay while on it. I will ask my onc for his opinion tomorrow. I'm not too sure anyone knows a whole lot about Arimidex yet...don't think it's been around long enough. For example, I've had higher than normal liver enzymes for the last year or so. CT scans and bloodwork were neg. I've noticed one or two others on this forum have had high liver enzymes and don't know why either. I wonder if the aromotase inhibitors could be the culprit.
Thank you for responding.
Debbie
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Old 07-11-2010, 06:00 PM   #13
Rich66
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Re: Do you take anti-hormonals at night?

Please have your doc or anesthesiologist consider this:
http://her2support.org/vbulletin/showthread.php?t=42074

If they won't do a spinal, ask if you can have some Relistor before and after the surgery.
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