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Old 10-09-2007, 09:33 AM   #1
Carolyns
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Advise on Tamoxifen use

Hi Ladies,

I am starting on Tamoxifen today. I have been on Femara and Faslodex, but never Tamoxifen. I found both drugs easy with the exception of getting UTIs. I need pro-active and positive suggestions on Tamoxifen use. I am most concerned about nausea and weight gain. I would like to hear suggestions on things like - when to take the meds. morning or night. Do I drink more water, eat less...

I would also like to hear from ladies that tolerated Tamoxifen well.

Wish me luck!

Thank you in advance for your words of wisdom!

Carolyn
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Old 10-09-2007, 09:54 AM   #2
PinkGirl
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Talking tamox.

Hi Carolyn - s

I only took it for 4 months but I tolerated it well. One time I accidentally took it on an empty stomach and had mild nausea. I take all my pills after I eat breakfast and didn't have any trouble with the tamox. this way. I had hot flashes from it and mild joint pain but I have worse symptoms on Arimidex.
Can't comment on the weight gain - I have gained tons of weight and don't know the cause of it other than I have a HUGE appetite. Hope this helps.
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Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++

Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09



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Old 10-09-2007, 10:19 AM   #3
Becky
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I took Tamoxifen for 3 months. I took it right before I went to bed (as I do Arimidex now) because the ladies in my local support group said I would have an easier time with hot flashes that way. At the time, I became an avid walker so I did not gain weight and actually lost 7 lbs during that time as it was when all really active treatment was over (chemo and rads as I am a late Herceptin person) and started to exercise alot then. I did have the rarer side effect of not being able to focus my eyes well. The biggest side effects to watch out for is the potential of uterine lining thickening and blood clots in the calves (or calf pain).

Good luck with it.
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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 10-09-2007, 10:40 AM   #4
madubois63
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I took tamoxifen for 4 1/2 years. I was 36 when I started, and this was my first experience with hormonal changes. I did get hot flashes, but they did diminish over time. I also became very depressed and suicidal, but again this was my first big change in my hormonal levels. Zoloft stopped all the negative feelings pretty quickly. I gained weight from all the chemo and pre-meds, not the tamoxifen: but, I could not loose any weight no matter what I did thereafter. I took my meds at night, and had no problems.
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Stage IV Inflammatory BC 1/00
Mod Rad Mastectomy 24nod/5+
Adriomycin Cytoxin Taxol
Tamoxifen 4 1/2 yrs
Radiation - 32 x
Metastatic BC lung/liver 10/04
thorocentesis 2x - pleurodesis
Herceptin Taxatiere Carbo
Femera/Lupron
BC NED 4/05
chemo induced Acute Myeloid Leukemia 5/06
Induction/consolidation chemo
bone marrow transplant - 11/3/06
Severe Host vs Graft Disease of liver
BC mets to lung 11/07
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Avascular Necrosis/morphine pump 10/10
metastatic brain tumor
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Old 10-12-2007, 08:00 PM   #5
fauxgypsy
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I started tamoxifen tonight. I spoke with my oncologist's nurse today about whether I should wait until I see the new oncologist but he was very insistent that I get started on it so I am. I am getting my records sent to UT Memphis Cancer Institute and I am nervous about the change but I think it will be for the best. Carolyn, how are you doing? Hope it works well for you.

Leslie
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Jan. 26- mammogram and ultrasound- suspicious lump
Mid-February- lumpectomy, infiltrating ductal carcinoma ~4.5 cm and a 1 cm DCIS, did not get clear margins, did not check lymph nodes
ER+/PR+, her2 +++, nuclear grade 3 of 3
February 20-PET scan showed something on liver. No biopsy.
March- Started carboplatin, herceptin, taxol on a four week cycle
May 3- Pet scan, with intent to do a biopsy, found nothing, liver or breast- no biopsy because there is nothing to biopsy
June 21- new onc, very concerned that there had been no biopsy,
June 18th-CAT scan, bone scan-negative
August 7th - Brain MRI-negative
August 9th- mastectomy, all pathology negative
January 2008 still NED! New oncologist -herceptin for full year after chemo- until July, and tamoxifen---negative scans since May '07
July 2008-Finished Herceptin!
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Old 10-12-2007, 08:36 PM   #6
StillHere
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Carolyn, I am curious as to why you are changing from an AI to Tamoxifen? You seem to have tolerated the AI's
I was on Arimidex for 2 mos. Stopped Arimidex and started Tamoxifen for 1 1/2 yrs. Just started Femera w/ Estrace cream this week. Will keep you updated on my end. Hope you will do the same. Thanks Karen
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04/05 Onset 49, DCIS, solid, Hist 2/3, Nucl 2/3, 7cm R Brst
04/05 E & P + HER2+++
05/05 Mediport
05/05 Cytoxan & Adriamycin every 3wk x4
08/05 Taxol every 2wk x 4, Herceptin every wk x1yr
10/05 Bilat Mast - my Choice
10/05 3/19 lymph nodes Pos, Stage IIIa
11/05 Rad x 37 Rx, R Brst & Axcilla
02/06 Herceptin stopped (L vent HF 40)
03/06 Started & Stoped Arimidex after 2 mos.-QOL side effects
05/06 Started Tamoxafin
06/06 Bilat Free Flap Reconstruction
12/06 Cardiomyopathy reversed-HF normal
01/07 Bilat Saline Implants
07/07 CA 27-29 steadily rising from 28 in 12/06 to 46 in 7/07
07/07 PET Scan NED, but inflamation at prev surg site.
09/07 Started Femara
10/07 CA 27-29 down to 39
06/08 CA 27-29 down to 32
09/08 Lg joint pain & QOL side effects from Femara, will live w/ to keep CA markers within normal range.
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Old 10-13-2007, 02:19 PM   #7
fauxgypsy
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I started the tamoxifen last night. This afternoon I felt like I had run into a wall and slid down it. I took a nap which is seriously unusual for me. I could barely wake up when my daughter came by. I don't know if it is thetamoxifen but I am still logy. I hope this doesn't happen often.
Leslie
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In the world of destiny, there are no statistics.
Jan. 26- mammogram and ultrasound- suspicious lump
Mid-February- lumpectomy, infiltrating ductal carcinoma ~4.5 cm and a 1 cm DCIS, did not get clear margins, did not check lymph nodes
ER+/PR+, her2 +++, nuclear grade 3 of 3
February 20-PET scan showed something on liver. No biopsy.
March- Started carboplatin, herceptin, taxol on a four week cycle
May 3- Pet scan, with intent to do a biopsy, found nothing, liver or breast- no biopsy because there is nothing to biopsy
June 21- new onc, very concerned that there had been no biopsy,
June 18th-CAT scan, bone scan-negative
August 7th - Brain MRI-negative
August 9th- mastectomy, all pathology negative
January 2008 still NED! New oncologist -herceptin for full year after chemo- until July, and tamoxifen---negative scans since May '07
July 2008-Finished Herceptin!
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Old 10-13-2007, 06:20 PM   #8
Les
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Hi Leslie, I'm a Leslie ie too. I have been on tamoxifen for 31/2 years, I have tolerated it very well.I take it at night and have never had any nausea. I have had hot flashes but they are getting better,I was on paxil and read that tamoxifen was not as effective I think that this was true for me because my estrogen # was over 200 and after stopping the paxil it dropped to 28 and I have not had a period since Feb 07 so I think that I would rather deal with hot flashes.goodluck leslie
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Old 10-13-2007, 07:47 PM   #9
Carolyns
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Thanks for the words of wisdom. I am doing fine so far. I started Tuesday night and take the Tamox at dinner time.

Karen, As far as why is switched to Tamox? I am a mets girl and have gotten the extent of my benefit from Femara and Faslodex. We are giving this a try to see how much more time we can buy before I go back to chemo.

Again, thanks to all for the tips. It really helps so much to hear from you all.

Love, Hope, Peace,

Carolyns
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Old 10-13-2007, 11:35 PM   #10
mke
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I took tamixofen for 5 years from about 52 to 57 years of age. I don't remember what time of day I took it, probably in the morning with breakfast. I did gain a bit of weight, but I don't know that I can blame it on the tamoxifen as there were other things that could have been factors. I really didn't have significant any side effects at all.
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Old 04-28-2024, 10:24 AM   #11
Gloria
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Re: Advise on Tamoxifen use

Did you have any issues with endometriosis
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Old 05-03-2024, 07:04 PM   #12
Nguyen
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Re: Advise on Tamoxifen use

"...Tamoxifen, a hormonal therapy, stimulates the growth of endometrial cells. This can cause endometriosis and also can increase the risk of endometrial cancer. Tamoxifen also can cause uneven thickening of the muscle and supportive tissues within the wall of the uterus...."

https://www.breastcancer.org/treatme.../endometriosis
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