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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 26, 2007 03:03PM by ashaby

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

Dx 4/4/2007, DCIS, 6cm+, Stage 0, Grade 2, 0/0 nodes, ER+/PR-, HER2-
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Nov 26, 2007 03:24PM conniehar wrote:

Hi Basha -

I just started last week.  So far, so good.  I can't say I have experienced any side effects.  My onc told me that many women swear it causes weight GAIN so now is the time to be vigilant about diet and exercise.  I just keep staring at the pharmacy sheet where it says "hair thinning".   I had chemo and seriously want my hair back.  Now I'm worried that this will slow or stop that growth.

Connie Dx 3/7/2007, ILC, 6cm+, Stage IIIA, Grade 3, 1/12 nodes, ER+/PR+, HER2-
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Nov 26, 2007 03:41PM annm wrote:

I've been on Tamox since April.  I haven't seen any weight loss....a bit of weight gain.  I'm not sure I can blame the weight gain on Tamox. though. I have been on a very "unrestricted " food plan lately. No hair loss....full head of chemo curls. I have had  a few SE like mild vag dryness and leg\feet pain. But nothing that would stop me from taking it.

  

Dx 9/22/2006, IDC, 4cm, Stage II, Grade 2, 0/15 nodes, ER+, HER2-
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Nov 26, 2007 04:18PM - edited Nov 26, 2007 04:19PM by karol61

Hi Tamox sisters,

Before BC,I had bad hot flashes daily +night sweats. I was already in menopause due to a complete hysterectomy + oomphectomies. My onc wanted me to take Tamox because it does not reduce bone density. He also started me on a Catapres patch before I started Tamoxifen. Catapres really reduced the hot flashes/night sweats. I started Tamox in July after I finished rads. So far as annm said "it's nothing that would stop me from taking it."

Dx 3/22/2007, DCIS, 1cm, Stage 0, Grade 2, 0/0 nodes, ER+/PR+, HER2+
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Nov 26, 2007 04:23PM my3girls wrote:

Hi..

I started my Tamox 5 weeks ago.  So far..very lucky..no real side effects. I had heard weight gain as well.  I have not gained any weight...but I am having a very hard time losing it!  I am running, eating healthy and less, but not much has shed.

As for the hot flashes, my chemo put me into menapause, so I have been experiencing hot flashes for about 6 or more months now.  I haven't really noticed any increase in frequency.  I saw my oc today..and I told her, so far so good....nothing to report.

Hopefully you will have an uneventful journey on this drug as well.  About the hair...no loss here...it is growing and filling in rather well!

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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Nov 26, 2007 05:33PM Harley44 wrote:

Hi there,


I have been taking Tamoxifen for ONE week so far...  I guess things are going ok so far, but it has only been ONE week! 

It was kind of warm here, and I have been feeling kind of warmish, so I hope they weren't hot flashes.  I am sure they will start soon though.  

I was taking HRT for premature menopause, because I was dx'd at age 35 with Premature Ovarian Failure, due to Auto immune issues.

So it looks like you, Layne, Connie and I are starting all at the same time!!  We'll have to keep each other posted on how well we are doing.

Good Luck to all of us!

Hugs

Harley

PS  I am really nervous about the risks of uterine cancer/endometrial cancer/ovarian cancer...  I am so scared about this, that I am thinking of having a hysterectomy, so I won't have to worry about these risks.  What do ya'll think?

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Nov 26, 2007 06:30PM my3girls wrote:

Harley,

My oc said the chance of getting ovarian or uterine cancer from being on Tamox is only 1%.  Those are very low odds.  I personally would not get a hysterectomy just for that reason.  Talk it over with your oc and your gyno.

Best to you and all of the Tamox ladies!

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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Nov 26, 2007 06:55PM - edited Mar 19, 2008 01:19PM by TenderIsOurMight


Just wanted to wish you all well as you start your Tamoxifen journey!

Looking back to my year on Tamoxifen I feel I tolerated it pretty well. I had some hot flashes, some weight adjustment actively fought off by exercise, and some mild swelling. I think if I had to choose between Tamoxifen and my AI, I would choose Tamoxifen on the side effect profile. Hopefully if you need additional hormonal therapy years from now, they will have ironed out some of the AI joint pain issues. Hopefully. Lastly, the risk of uterine cancer is low with Tamoxifen, and about 20 % of it's users in a large study had any bleeding disorders.

Good luck to you all, it's nice to see you joining up together.

Tender

It cannot be emphasized too strongly that treatment of each patient is a highly individualized matter. (FDA-approved labeling for warfarin (Coumadin) NDA 9-218/5-105)
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Nov 26, 2007 07:09PM bomber410 wrote:

Hello All,  I am writing to make a reservation for one on the Tamoxifen train.  I'd like to travel first class.  :-)  I'm reading the side effects - weight gain - no Thank you!  Hair thinning - I already was gifted with naturally fine, straight, and thin hair - so No Thank You.  I'll take some weight loss.  I see my onc on Friday so will likely get the script then.  A December 1 start sounds good. 

Debbie 

You can visit my CaringBridge site at www.caringbridge.org/visit/deb... Dx 3/29/2007, IDC, 2cm, Stage II, Grade 2, 1/10 nodes, ER+/PR+, HER2-
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Nov 26, 2007 07:50PM Member_of_the_Club wrote:

I've been on tamoxifen for two and a half years. At one point I gained a bit of weight, went on a diet and lost it and more and now weigh less than when i was diagnosed with cancer.

I think it is neutral for weight, but its nice to have something to blame it on. If it pushes you into menopause, that will cahnge your metabolism.

Best of all, it kills cancer cells. So take it with gusto.

Dx 9/30/2004, IDC, 3cm, Stage IIB, Grade 2, 1/17 nodes, ER+/PR+, HER2-
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Nov 26, 2007 08:23PM roseg wrote:

I usually say that if you gain weight easily then you need to watch what you eat when you take tamoxifen. It isn't hard at all to be eating more than you think, particulary with holiday goodies all over the place.

Rose
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Nov 26, 2007 10:26PM - edited Nov 26, 2007 10:37PM by Harley44

Debbie,

What do you say we start a new thread... starting Tamoxifen in December?  Since November is almost over.... Where DID this year go??? 

Harley

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Nov 27, 2007 12:38AM Cynthia1962 wrote:

I'm so glad there are quite a few of us who recently started or will be starting Tamoxifen.  It'll be helpful to compare notes.  I've been on it two weeks and I believe the hot flashes have begun.  I had them with the chemo pause, but they were almost completely gone before I started the Tamoxifen and now I'm having a few a day.  So far, they aren't bad but I read that they usually peak at 6 weeks. 

I'm experiencing restless leg syndrome again, and I don't know if it's from the Tamoxifen or the Toprol I'm on to slow my heart down.   I wonder if I'm going to be on Ativan for the rest of my life.  Frown

Cynthia 

Mets to bones Dx 1/3/2007, IDC, 2cm, Stage IIIA, Grade 2, 4/18 nodes, ER+/PR+, HER2- Surgery 2/16/2007 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Chemotherapy 3/19/2007 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 9/6/2007 Breast, Lymph nodes Hormonal Therapy 11/9/2007 Hormonal Therapy 11/1/2010 Arimidex (anastrozole) Dx 11/11/2010, IDC, Stage IV, ER+/PR+, HER2- Chemotherapy 6/1/2012 Xeloda (capecitabine) Chemotherapy 11/14/2012 Navelbine (vinorelbine)
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Nov 27, 2007 01:38AM Cynthia1962 wrote:

Is anyone getting a baseline endometrial biopsy or ultrasound?  It was suggested to me, but I'm curious if it's really necessary.  In fact, I'm hoping my cycles start back up, so it won't be an issue.  

Cynthia 

Mets to bones Dx 1/3/2007, IDC, 2cm, Stage IIIA, Grade 2, 4/18 nodes, ER+/PR+, HER2- Surgery 2/16/2007 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Chemotherapy 3/19/2007 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 9/6/2007 Breast, Lymph nodes Hormonal Therapy 11/9/2007 Hormonal Therapy 11/1/2010 Arimidex (anastrozole) Dx 11/11/2010, IDC, Stage IV, ER+/PR+, HER2- Chemotherapy 6/1/2012 Xeloda (capecitabine) Chemotherapy 11/14/2012 Navelbine (vinorelbine)
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Nov 27, 2007 09:24AM Member_of_the_Club wrote:

I had heavy and prolonged bleeding after my period came back, a few months after starting tamox, so i had an endometrial biopsy and transvaginal ultrasound then. All was well. Thursday I am having another transvaginal ultrasound because it has been two years. I don't know that you need a baseline but if you have any issues at all, you should have the tests and definitely a periodic ultrasound.

Dx 9/30/2004, IDC, 3cm, Stage IIB, Grade 2, 1/17 nodes, ER+/PR+, HER2-
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Nov 27, 2007 09:31AM my3girls wrote:

Cynthia...I had the hot flashes before tamox...they have increased just a little...I have to say, I think I am getting used to them now.  I had my last period back in April, one month after starting my chemo, no signs of it coming back. My oc said I was probably in early menapause..and I may not get them back at all.  So I guess we have to get used to the hot flashes!  The only good thing about them...in Ohio..it's cold right now..so they keep me warm! haha

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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Nov 27, 2007 09:52AM my3girls wrote:

Haha...thanks for sharing the laughter laynel!! I know that is not something I would want to hear either!  Thanks for the reminder too...I need to make an apt with the gyno for January!!

Funny how you said..you have a terrible obsession with ovarian cancer..for no reason at all...that has been me with bc..for no reason.  And because of that, I had never had a mamm or did self exams..because of my fear...until I HAD to, last Feb!! Funny how our minds work.

Congrats to all that are finishing their tx's..and to all who are completed!! Moving on........such a great thing to say!!

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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Nov 27, 2007 10:32AM ashaby wrote:

Hi Everybody, current and future Tamoxibuddies,

It really does say on the flyer that weight loss is a possible side effect. Says not a thing about gain. So cool. I start on Dec 2 because on Dec. 1, I'm having a party to celebrate friends and health. We will be serving chocolate cupcakes with pink icing and raspberry nipples. Join me virtually.
Layne, big kudos for finishing your radiatio, you ferocious warrior.

XXX Basha

Dx 4/4/2007, DCIS, 6cm+, Stage 0, Grade 2, 0/0 nodes, ER+/PR-, HER2-
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Nov 27, 2007 10:51AM my3girls wrote:

Ashaby...what a great idea!!  So far no weight loss for me Cry. I have actually lost 3 lbs...but I started running again...and really, really cutting back on my intake!

maybe the weight loss will come later??  Hope so!!

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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Nov 27, 2007 12:35PM my3girls wrote:

Layne...I am between Akron and Cleveland...city called Wadsworth.  Been here my whole life.  I have a nephew in Dayton...he and his sister went to UofD.

I understand the whole weight gain, working out problems!! I used to go to a gym and run, etc.  I can't afford the gym any longer..and I do miss it!  I ran until this cancer hit last winter.  I have tried to walk 3 miles at least 3 or 4 times a week through all my tx, except for after my surgery.  I am just anxious to get somewhat of my old body back...haha...if that is at all possible??!!

Good luck to you and your new training program!  Start on the new you healthy eating now...I had too..cause like you...I was eating too much...because I had cancer...easy to do!

Best of luck to 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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Nov 27, 2007 03:39PM Harley44 wrote:

Cynthia,

I, too, am having additional issues with the RLS problem...  Strangely, it is only on days when I also take my new higher dose of Effexor XR... 150 mg... I was taking 75, but since I anticipated having terrible hot flashes and night sweats, I got my dose increased.  I just started the new higher dose, but I gotta tell ya, it ain't working too well...  On days when I take it, I have terrible insomnia and restless leg syndrome at night and can't sleep at all!  Now, I am only taking it every other day, so I can still be on the lower dose until I know for sure if the hot flashes and night sweats are back and if so, if I need the extra help with a higher dose of Effexor. 

I am seriously thinking of just staying on the 75 dose, since I had less trouble with it.

Harley

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Nov 27, 2007 03:56PM lisettemac wrote:

I am also taking my seat on the Tamoxifen train!  Actually, I've been taking Tamoxifen for several months now -- maybe 5 months?  I would definitely not say I've suffered any weight loss.  If anything, I'd say it has slowed my efforts at weight loss, though it's hard to figure out which side effects are due to the Tamox and which are due to my chemopause.  I also had hot flashes and insomnia, though that's better now.  I had very mild nausea for the first month or two of Tamox.  Onc said it is common -- same principle as morning sickness, actually.  It also seems like my hair is growing incredibly slowly, but at least it's coming in.  I'd say I have about 1 1/2 - 2" and that's since May or so!!

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Nov 27, 2007 08:34PM michmom wrote:

Save me a seat on this tamoxifen train !!  Glad to be sharing with all of you.  I've been on it for 8 months.  I take it at nite and haven't been too bothered by hot flashes.  I too read the pamphlet that said weight loss (I think it's a misprint LOL)  Can side effects start at any time??because recently I know I've gained some weight without eating differently and it's frustrating!!  My other question is about muscle aches because also only recently have I been getting some leg and back pains.  I always thought if you got side effects they happened right away now I think I attribute everything to the meds.

 How do you know when it's a true side effeect?

Sometimes it's a good excuse to my family for bad moods and crankiness too.  Must be the meds !!

Michele

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Nov 27, 2007 08:52PM Cynthia1962 wrote:

What an awesome group we have on our T train.  I'm so glad we'll have each other to lean on and learn from.

Harley - sorry to hear about the RLS and insomnia with the higher Effexor dose.  I'm glad you can handle the lower dose.  I don't know what I would do if the Ativan didn't help me sleep at night.  My children are not very sympathetic when I don't want to get out of bed in the morning.  lol  

Layne - loved your ovulating story. Congrats on finishing rads!  How is your skin doing? 

MOTC - how long did the bleeding last?   I really don't want to have a period that lasts forever, not that I have any choice in the matter.  I guess anything is possible with Tamoxifen.

Lisa - I spent my childhood in Youngstown, Ohio.  My dad was born and raised there.  I'm glad your hot flashes come in handy with the weather. It would be nice if we could at least control when we have a hot flash, then we'd never be cold again.  You're running???!!!  Wow, I feel tired just thinking about running.  I guess I should push myself more.  

Basha - your cupcakes sound so good!  I told a friend about them and she said she'd have to put a peanut butter cup on top.  lol  Sorry, probably tmi. 

lisettemac - welcome to our group.  That's awful about the nausea, but I'm glad it eventually went away.  I so did not want to have that particular side effect - it was one of the worst parts of being pregnant for me.  And, I don't eat when I'm nauseous, so not eating for a couple of months would be bad. lol  

Is anyone's white count still low?  Mine was 2.3 a couple of weeks ago and I still have a mouth sore.  I wonder how long before my body starts to recover from chemo/rads.  It's funny, but my rad onc said my low wt count is from chemo, and my med onc says it's from rads.   I say it's from both of them, thank you very much. 

Have a good evening, all!

Cynthia 

Mets to bones Dx 1/3/2007, IDC, 2cm, Stage IIIA, Grade 2, 4/18 nodes, ER+/PR+, HER2- Surgery 2/16/2007 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Chemotherapy 3/19/2007 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 9/6/2007 Breast, Lymph nodes Hormonal Therapy 11/9/2007 Hormonal Therapy 11/1/2010 Arimidex (anastrozole) Dx 11/11/2010, IDC, Stage IV, ER+/PR+, HER2- Chemotherapy 6/1/2012 Xeloda (capecitabine) Chemotherapy 11/14/2012 Navelbine (vinorelbine)
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Nov 28, 2007 04:59AM JapanLynn wrote:

Hi, ladies--

Is there room in the club car for me?  I took my first dose of T on Nov. 3.  So far, I've had more "power surges" than true hot flashes...and almost no night sweats (knock wood).  My arthritic hip has been bothering me the last couple of days after a long period of little to no pain...could it be an SE?  It's tempting to blame every ache, pain, mood swing, headache, hunger pang, hangnail, etc., etc. on tamoxifen, but... 

I have a hankering for a cupcake with a raspberry nipple on top...another SE?! 

Lynn

Dx 7/30/2007, IDC, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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Nov 28, 2007 09:08AM my3girls wrote:

Welcome Lynn!  Always room!  I too wonder about arthritic pain with the Tamox.  I have had knee problems for awhile, but they seem to be worse with the tamox.  I spoke to my oc about my knee..she didnt seem to think it was related.  I would have to say my hunger is much less since on this...of course it's not causing me to lose weight! Darn!

Cynthia...funny you mention Youngstown...my mother was born and raised there!  I too visited my Baba (Grandmother) there all the time. In fact, I still go there often, my mother has passed, but all of ther siblings still live in that area.  Small world!  Yes..I am running...I had been walking 3 miles, 3-4 times a week during all this..well..not on my tx weeks!! So now that I feel better..I got back into running.  It feels good!

I am one of 7 children...I have a sister in California and Arizona..my sisters were smart..the left the cold!! haha.  Well...I have nice places to go for vacation!

Harley...I hope you get some help with the rls. and your dosage.

Michelle...I too get allot of muscle pains.  I am not sure that it is the meds...because I seem to have it allot...and did before starting this 5 wks ago.  Hard to say??

Well ladies..enjoy your day...I am at work...so I will be checking back to see how you all are doing!

Are we getting our halls decked for Christmas??

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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Nov 28, 2007 10:41AM awb wrote:


Harley---the risk of endometrial cancer from tamoxifen is very low--reportedly less than 1%-- and it does NOT cause ovarian cancer.  I've been taking tamox for over 4 years--initially with very mild hot flashes. I did have a total hysterectomy 2.5 years ago (not by choice--had large ovarian cysts which ruputred), so now I have increased SEs but they are now due to the loss of my ovaries rather than the tamox itself. But from personal experience, I would recommend a yearly transvaginal US to monitor both the uterine lining and the ovaries for any changes.  I haven't gained any significant weight, but have noticed increased "belly fat" and can't seem to lose an ounce despite diet and exercise. Weight loss on tamox?--what's that????
"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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Nov 28, 2007 10:49AM my3girls wrote:

awb..haha...no kidding on the weight loss.  I will lose my belly fat when I have my surgery (tram flap) this winter.  Bad way to have to lose it.  I don't have much...but more than I ever did!  I started sit ups..Ill see if that helps!

Good luck to all!

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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Nov 28, 2007 10:50AM awb wrote:

my girls---I have a lot of achiness/stiffness too--particularly my left hip recently--my oncologist doesn't feel it is tamoxifen related, but my gyn and pcp feels it is.  With me, I think it is a combination of no estrogen from lack of ovaries (estrogen lubricates your joints), tamox, and just getting older/menopausal (50).

Anne 

"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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Nov 28, 2007 12:10PM Harley44 wrote:

awb,

Thanks for the encouraging info. about Tamoxifen and these other types of cancers...  Even if I know in my head that the risk is very low, I still fear this se SO VERY MUCH! 

Just like with the chemo... I had a tremendous fear of developing leukemia from the chemo txs... 

I will probably get the u/s yearly, since I also have fibroid tumors, and I worry that they will grow, and I may have trouble with bleeding from that...  scary to me! 

So sorry to hear about your hyst. for ovarian cysts!

I am postmenopausal due to a condition called Premature Ovarian Failure, and the drs think it is auto immune related.  So, I really don't want to think about having bleeding again.

Sounds as if you are just about finished with the Tamoxifen!  I am glad that you didn't have too many se's from it.  Will you be taking an AI afterwards?

Best Wishes,

Harley

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Nov 28, 2007 04:42PM awb wrote:

Harley--I have one more year to go on the tamox.   My oncologist originally said maybe arimidex afterwards, but now he's not sure he will be putting me on anything.  I have LCIS and the AIs haven't been studied much with that yet enough to give definitive results. He says we will keep revisiting that subject over time.  At one point he said no to Evista as well, but my pcp thinks it's likely he may put me on that because of all the new studies coming out.  I don't really like the idea of taking another medication for another 5 years, but I don't like the idea of taking nothing preventatively either.  A least I would get some protection from osteoporosis from Evista.

"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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