Topic: Bottle 'o Tamoxifen

Forum: Hormonal Therapy - Before, During, and After — This is a safe place to share your experiences of others considering or on hormonal treatment.

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

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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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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