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Topic: Bottle 'o Tamoxifen

Forum: Hormonal Therapy - Before, During, and After —

Risks and benefits, side effects, and costs of anti-estrogen medications. Note: Please remember that there are good experiences and bad with ALL treatments and this is a safe place to share YOUR experience, not to be influenced or influence others.

Posted on: Nov 26, 2007 03:02PM - edited Nov 15, 2017 01:59PM by Moderators

ashaby wrote:

Dear All, (and Layne are you there?)

Got my Tamox today and will start in a week. Where are my tamoxi pals? It says weight loss for one of the side effects. Now that's a good thing. Basha

Edited by Mods to add content from the main Breastcancer.org site's section on Tamoxifen in Pill Form (Brand Name: Nolvadex): Benefits, Side Effects and More

Dx 4/4/2007, DCIS, 6cm+, Stage 0, Grade 2, 0/0 nodes, ER+/PR-, HER2-
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Dec 7, 2007 09:40PM JapanLynn wrote:

Happy Saturday, tamoxi friends--

I, too, have almost stopped with the hot flushes, and I wonder if this is good or bad.  On the other hand, I have achy hips and knees...I haven't exercised enough to cause this, so I'm thinking it might be a side effect.  The fun just never stops.

Still waiting to hear from my onc re: whether to stop the prozac, so I'm playing dr. and weaning myself, just in case.  When I was still in the states, he told me I could take remifemin...a black cohosh thing w/ no estrogen.  I'd like to be able to handle the menopause SEs w/out the prozac, if possible.  Anyone have any experience with this supplement?

I think my appetite has decreased some, too, now that I think of it.  This is a good thing, since I had a fitness assessment at the gym here last week...pretty grim, esp. my body fat content.  Oh, well--while the truth may hurt, at least now I can measure my success as I move along toward better health.

Take care...sleep well!

Lynn

Dx 7/30/2007, IDC, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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Dec 7, 2007 10:58PM catbert4209 wrote:

Barb:

I would definitely ask your radiologist/oncologist about having an MRI.  That is standard of care down here at both MD Anderson and Baylor.  I think it has saved my life.

All the best to you!

Cathy 

Catbert--A positive attitude may not solve all your problems, but it will irritate enough people to make it worth the effort! (^..^) Dx 8/20/2007, DCIS, 2cm, Stage I, Grade 1, 0/17 nodes, ER+/PR+, HER2+
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Dec 7, 2007 11:03PM catbert4209 wrote:

Cynthia:

Well, got my path results back, and the three areas they removed are DCIS.  My surgeon and oncologist and radiologist/oncologist have all recommended mastectomy of the breast, and I am seriously considering doing a bilateral.  Not the news I wanted, but at least I can now move forward!

I still have to find out whether I'm facing any chemo or rads, but that question will be answered when I see my oncologist next week.

Take care!

Cathy 

Catbert--A positive attitude may not solve all your problems, but it will irritate enough people to make it worth the effort! (^..^) Dx 8/20/2007, DCIS, 2cm, Stage I, Grade 1, 0/17 nodes, ER+/PR+, HER2+
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Dec 8, 2007 12:14PM Barbeqrn wrote:

CATHY,

I AM SOORY ABOUT YOUR PATH REPORT...BUT GLAD YOU CAN THINK ABOUT WHAT TO DO NOW.

CYNTHIA, I GOT THE CT PRIOR RADS AS WELL...HOW LONG DO MOST PEOPLE WAIT TO MAKE SURE NOTHING "FUNKY" HAS CROPPED UP?

I AM HAVING NO SIDE EFFECTS FROM TAMOXIFEN BUT MY ONC SAID SOME WOMEN TOLERATE IT WELL AND OTHERS HAVE A TOUGH TIME...I SURE HOPE IT IS WORKING!

BARB

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Dec 8, 2007 03:37PM - edited Dec 8, 2007 03:38PM by catbert4209

Thanks, Barb!  Now that I've had 24 hours to think on my doing a double mastectomy, I feel very calm and sure about the decision to go ahead with it..

I haven't had a CT scan, but I got the results from the MRI back within a week.  I'm in Houston, and the Med Center here is fabulously equipped, so we get results back fast.  When my Mom had her CT scan, it took about a week and a half to get the results.

All the best to you!

Cathy 

Catbert--A positive attitude may not solve all your problems, but it will irritate enough people to make it worth the effort! (^..^) Dx 8/20/2007, DCIS, 2cm, Stage I, Grade 1, 0/17 nodes, ER+/PR+, HER2+
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Dec 8, 2007 03:48PM - edited Dec 8, 2007 03:50PM by karol61

Barb,

If you have no side effects from Tamox, then you are one of the lucky ones.

I had night sweats + hot flashes b-4 BC, my onc put me on Clonodine b-4 I started Tamox,and I'm really glad the night sweats +hot flashes are gone. I did have leg cramps at night but don't anymore.

However, any of those S/E are not so bad that I'd stop taking Tamox. 

Dx 3/22/2007, DCIS, 1cm, Stage 0, Grade 2, 0/0 nodes, ER+/PR+, HER2+
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Dec 8, 2007 03:55PM - edited Dec 8, 2007 03:56PM by karol61

Lynn,

I did have hip and leg pain after starting Tamoxifen but the pain lessened after I started exercising,esp stretching. I also went to a physical therapist +he gave me some exercises. The exercises combined with Yoga stretches and relaxation breathing help a lot. 

Karoline 

Dx 3/22/2007, DCIS, 1cm, Stage 0, Grade 2, 0/0 nodes, ER+/PR+, HER2+
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Dec 8, 2007 04:21PM - edited Dec 9, 2007 08:42AM by ashaby

Hey Tamoxifriends,
Anyone have their first mammogram yet? I have mine on Tuesday and I'm way more scared than I expected. Maybe cuz that's how my cancer was detected?

Basha

Dx 4/4/2007, DCIS, 6cm+, Stage 0, Grade 2, 0/0 nodes, ER+/PR-, HER2-
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Dec 8, 2007 05:05PM honeygirl wrote:

Hi Basha , I had my 6 month follow up with my breast surgeon and he gave me one. But only in my good breast. It was fine. It was such a good feeling to hear that. They said after surgery(mast. with diep recon) that they won't mammo that one. But , when I saw him , he said they could do that one , but they didn't.

Dx 2/20/2007, IDC, 2cm, Stage I, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Dec 8, 2007 05:09PM JapanLynn wrote:

Good morning, ladies--

Cathy, so sorry about your diagnosis, but it seems like you're taking the beast by the horns w/ your decision to have a bilateral, and you seem at peace with it.  Let us know when your surgery will be.

Karoline, good advice re: my hip pain.  I actually had a fitness evaluation at the gym last week, and I've started w/ the elliptical trainer for 30 minutes.  Yoga class is this Wed., and maybe I'll get out my DVDs in the meantime.  Thanks!

Today I have an appt. with my Japanese acupuncturist/massage therapist, so hopefully that will help my hips, too.  Has anyone else tried any alternative therapy to deal w/ tamox. SEs?  This will only be my 2nd treatment since starting the med., so stay tuned.

Take care, all....good luck w/ your 1st mammo, Basha!  Mine is in Feb., and I know I'll be a nervous wreck.  Think good thoughts...

Lynn

Dx 7/30/2007, IDC, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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Dec 8, 2007 06:07PM prayrv wrote:

Good afternoon all!

I had my first mamo (only on my good breast) and all came back clear.  Hurray!  They said see you in one year.  My bloodwork from my med onc came back and I don't need to see her until May.  My newest se on tamox seems to be bloating and abdominal pain ( like I have to go to the bathroom or cramping like I'm going to start my period ).  Does anyone else have that problem? 

Take care

Trish

Dx 4/27/2007, IDC, <1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2-
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Dec 8, 2007 06:10PM my3girls wrote:

Trish

I have not had any of those problems.  But I wanted to say congrats on your good news!!  A clear mamo and blood work!! Something to celebrate.  I get my mamo on my good breast this month. Keeping my fingers crossed!.

How long on tamox?

xoxo

Lisa

Worry is for "shit"! Live, Laugh, Love! //unilateral mast//reconst. 2/4/08 Dx 3/6/2007, IDC, 3cm, Stage II, Grade 2, 0/22 nodes, ER+/PR+, HER2-
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Dec 8, 2007 06:17PM honeygirl wrote:

Good news Trish! I have some cramping off and on. I have been on tamox. for three months now.I also have a strange "irratation" feeling in my vagina when I urinate. But only sometimes. I go for my next pap in Jan. so I hope all is OK then.

Good luck on your mammo Lisa!xxxx Melody

Dx 2/20/2007, IDC, 2cm, Stage I, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Dec 8, 2007 06:31PM corvette wrote:

Have you ladies had the CYP2D6 test?

It shows how well you metabolize tamoxifen. A poor metabolizer receives no benefit, can suffer toxic build up - intermediate needs a dose adnjustment or suffer toxic side effects - then a high metabolizer receives no benefits either.

It's a blood test. Simple - runs around $600 if your insurance won't pay for it.

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Dec 8, 2007 06:34PM my3girls wrote:

I have not had that yet.  I have been on for 6 weeks.  I don't see my oc till February.  When do they usually administer that test?

Worry is for "shit"! Live, Laugh, Love! //unilateral mast//reconst. 2/4/08 Dx 3/6/2007, IDC, 3cm, Stage II, Grade 2, 0/22 nodes, ER+/PR+, HER2-
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Dec 8, 2007 06:35PM honeygirl wrote:

corvette , I asked my onc about it. He said they don't do it as  a routine test. That given I am having horrible hot flashes , it appears to be doing its job. I can't afford to pay it on my own. I am hoping , soon , my insurance will reconize the need for it , or I'll win the lottery. Which ever comes first!

Dx 2/20/2007, IDC, 2cm, Stage I, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Dec 9, 2007 08:50AM ashaby wrote:

Hi Layne,
I seem to have lost a post re mammograms. Did you have 1 yet post everything? I'm so dang nervous even the thought of chocolate doesn't distract.
It's on Tuesday.
xxBasha

Dx 4/4/2007, DCIS, 6cm+, Stage 0, Grade 2, 0/0 nodes, ER+/PR-, HER2-
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Dec 9, 2007 12:54PM awb wrote:

corvette---I've been on tamoxifen for over 4 years and my oncologist has never mentioned this test; I"ve only heard about it recently on this board. I'm wondering where the information is coming from about how a person metabolizes tamox? and also haven't heard of any build up of "toxic effects"? (unless you are referring to the very low risk of endometrial cancer which is less than 1%)

"I don't know what the future holds, but I know who holds the future" Dx 9/5/2003, LCIS, Stage 0, 0/0 nodes Surgery 9/16/2003 Lumpectomy: Right Hormonal Therapy 10/30/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/5/2005 Prophylactic ovary removal Hormonal Therapy 2/28/2009 Evista (raloxifene)
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Dec 9, 2007 03:30PM Harley44 wrote:

My onc said that there is no need for the test, since if you do not have hot flashes, it isn't working. 


I have had "maybe" mild hot flashes since starting Tamoxifen, but the weather was warm, too, so I am not really sure...

Harley

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Dec 9, 2007 05:54PM NativeMainer wrote:

The rads onc I saw said absolutely no way I could take tamoxifen while getting rads.  He said tamoxifen "puts the cancer cells to sleep" and rads don't affect "sleeping" bc cells.  Of course, this is the same jerk dr that told me truncal lymphedema couldn't be treated and I needed to learn to live with the pain, so who knows if he actually knows anything or not. 

"I have come to believe that caring for myself is not self indulgent. Caring for myself is an act of survival." Audre Lorde Dx 3/9/2007, IDC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 3/14/2007 Lumpectomy: Right Surgery 3/28/2007 Lumpectomy: Left Radiation Therapy 4/9/2007 Breast Hormonal Therapy 10/4/2007 Hormonal Therapy 4/24/2008 Arimidex (anastrozole) Surgery 8/14/2008 Mastectomy: Left Surgery 6/20/2010 Prophylactic mastectomy: Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Dec 10, 2007 01:26PM laphd wrote:

Hello everyone -- it feels great to finally find some people who "get" the challenge of this this life issue!   I was diax exactly one year ago with a mini-tumor, found accidentally by my ob/gyn when I showed up for another problem...vigilant for years with mammograms - but bad family history, and 20 years on Premarin (after complete hysterectomy) caught up with me.  Lumpectomy last December, Chemo (Taxotere) followed by radiation, which ended late June.  Next, Tamoxifen, begun early August.  Chosen both to ward off bone density issues and to preserve vaginal health. 
Though there were occasional moments of rather unexpected warmth last winter and spring, usually whenever there was a change in the air vent (whether it came in cold or warm, my system would react with a "flush") it really got noticeably awful after the Tamoxifen started. Only an occasional night sweat - but again, I think this is from times when the heating/ac changes.  Am keeping the house much colder and dressing in layers.  Never was a tank top person, now I am, so I can be prepared to strip with immediacy.  At a theater last night, on/off, on/off, with the outer wrap, while I noticed those around me with their woolen turtlenecks, shawls, leather jackets, quite comfortable.

At a fancy party the  night before I was running outdoors every 15 minutes to cool off, though wearing hardly anything.  I got a glass of ice, and found popping a bit into my mouth, or rubbing the back of my neck brought momentary relief.

At this rate, I worry I will just give myself pneumonia.a 

I have been told to get used to it but after reading what some of you have reported, I am going to ask my dr this week about an anti-depressant.
I know everyone's system is wired differently - my thermostat has always been very reactive, first to get  cold, first to get hot, life-long.  I read an article a few months ago that did indicate those with this kind of internal thermostat were most likely to have issues with hot flashes.

Good luck to us all!

Jaye

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Dec 10, 2007 06:05PM ashaby wrote:

Hi Honeygirl,
Thanks for the positive comment re mammograms. My DCIS got diagnosed 9 months ago via mammo and it feels like deja vu all over again.

Layne, Thanks for the((((())))). By tomorrow it will be over and I can obsess about something more fun.

XXX Basha

Dx 4/4/2007, DCIS, 6cm+, Stage 0, Grade 2, 0/0 nodes, ER+/PR-, HER2-
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Dec 10, 2007 07:07PM honeygirl wrote:

Hi everyone , I hope everyone is having a good start of the week.

Good luck tomorrow Basha! Sending lots of positive vibes your way. I'll be thinkin' about you tomorrow. I was pretty calm until it was over and they had me wait for my results. It started feeling like it was taking forever and thoughts started creeping in that maybe something was wrong. But it was all good and I hope the same for you. Your in my prayers.xxxx

You know what I am having trouble with? Self breast exam. I use to do it all the time. In the shower , in bed etc... I think I am so afraid of finding something , I rush through it like a guy getting his first feel!lol Hopefully , It will get better in time...

Hi Jaye , Welcome. Boy , you sound just like me. I sure hope this effexor kicks in soon. I hate hotflashes! I get the night sweats also. I'm so glad winter is here. I didn't think I'd ever say that!lol

 Hi Layne , aren't piggies wonderful. I would love to have an "Arnold" in my yard. That sounds sooo cute. I'm 50 too , and have joint pain in the knee and hip area. Good luck with the colesterol. I hope your liver counts come down. I plan on a strick diet and exersise program for New Years. Good luck to all of us.

Dx 2/20/2007, IDC, 2cm, Stage I, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Dec 11, 2007 09:34AM - edited Sep 6, 2010 06:01PM by yellowrose

I -

You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I have lived though this horror. I can take the next thing that comes along.' Eleanor Roosevelt
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Dec 11, 2007 10:08AM my3girls wrote:

txgirl...I think it is wise to take your time before you make that decision.  I think sometimes, things are thrown at us, and we hurry and decide, because we think it's the best.  Don't worry about ranting...that's why we are here.  Good luck with your tests next week.

Well...Melody..I am there with you with the self exams.  Difference is..I never did them..and I am still not doing them.  I am not even sure the correct way..haha.  Bad..I know..I am bad!  I have to get a grip on that!  Heck...I only have one boob to check!  That is a question..after reconstruction...do you have to check that boob as well?

Have a good day everyone!

xoxo

Lisa

Worry is for "shit"! Live, Laugh, Love! //unilateral mast//reconst. 2/4/08 Dx 3/6/2007, IDC, 3cm, Stage II, Grade 2, 0/22 nodes, ER+/PR+, HER2-
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Dec 11, 2007 10:52AM - edited Dec 11, 2007 10:58AM by karol61

Prayrv 

Congrats on your mammogram that had no BC. You're NED or No evidence of Disease. As for bloating and cramping, I get it sometimes at the end of the day. In my case, it is worse on Tamoxifen, and usually caused by not drinking enough water. 

Karoline 

Dx 3/22/2007, DCIS, 1cm, Stage 0, Grade 2, 0/0 nodes, ER+/PR+, HER2+
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Dec 11, 2007 11:27AM conniehar wrote:

Hi Tamoxifen girls - I posted on this thread in the beginning, but haven't been back.  It looks like a fun group of ladies, so I'll check back often.

I am almost done with my first bottle - 5 more pills to go.  I laughed at whoever posted 59 more bottles to go!

So, far I seem to only have the hot flashes that I started during chemo.  They seem to be a little worse at night, but not unbearable.  I have also been tired this week, but I am also going through radiation so it is probably from that.

Someone asked about getting your period back after chemo.  My onc told me about a lady he saw a few weeks ago my age (40) who got hers back 9 months later - she was also on Tamox.  But, he seems to think it's more likely for me that it won't come back.  It has been nice to not have to deal with it, but this lack of hormones does suck in many ways!

I go for my first mammogram (on my one remaining boob) since dx next week.  Our hospital just got a digital mammogram machine so I am one of the first to try it out.

Have a great day ladies!

Connie Dx 3/7/2007, ILC, 6cm+, Stage IIIA, Grade 3, 1/12 nodes, ER+/PR+, HER2-
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Dec 11, 2007 04:29PM - edited Dec 15, 2007 05:01PM by Harley44

Connie,

March 8th 2007 is when I had my diagnostic mammogram & u/s, that found the tumor.

Wow!  You have been taking Tamoxifen for ONE or THREE months?  I have been taking Tamox. for 3 weeks, almost a month.  In the evening, I usually have some very WARM moments, very uncomfortable! 

Good Luck with your mammogram!

Harley

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Dec 11, 2007 06:30PM honeygirl wrote:

Hi Connie , good luck with the mammo! I had my period like clock work during my chemo. I started tamox. in sept and my last period was Aug. So , like you I don't miss it , but dealing with the hormone problems suck! I am one of those with really bad hotflashes. Night sweats too.

taxgirl , yes , take your time deciding. I felt so rushed through out this journey , I wish now I would have taken more time to think. Good luck.

Hey lisa! Your gyn can help show you how to give yourself an exam.You can do it!

Hugs ladies.xxxx Melody

Dx 2/20/2007, IDC, 2cm, Stage I, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Dec 11, 2007 06:32PM honeygirl wrote:

Basha , thinking of you and wondering how it went. Let us know. hugs. Melody

Dx 2/20/2007, IDC, 2cm, Stage I, Grade 2, 0/3 nodes, ER+/PR+, HER2-

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