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All TopicsForum: Hormonal Therapy - Before, During and After → Topic: tamoxifen fear

Topic: tamoxifen fear

Forum: Hormonal Therapy - Before, During and After — Risks and benefits, side effects, and costs of anti-estrogen medications.

Posted on: Jun 10, 2009 01:23AM

jules4evr39 wrote:

Hi, I am Julie! 42y.o past hysterectomy, 1 ovary...I have been on here just reading along about all the tamox side effects. What I am wondering is: Has anyone out there not had bad SE's? I had a mastectomy in Nov. 08' just got my Tamox due to my onc leaving and getting a new onc. You all really have me pretty scared to death. I lost my husband of 18 yrs in 05' (auto accident) and just remarried. I am mostly concerned that taking this med will cause me to run him off. He surely loves me, but I don't want to drive him crazy either. Just scared I will be So Irritable and cry all the time. Just so scared about taking it. I am picking up the rx tommorow. How long due you think it will take for Se's to kick in, if any besides hot flashes? Please reasure me........jules

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Jun 10, 2009 04:16AM HelenaJ wrote:

Oh Jules, you will find that most people posting here have problems with side effects - the majority of women are just fine on tamoxifen, really - hot flashes are the big side effect though.  Please try and be positive - believe me it really does help.  Side effects can take up to 6 months to rear their ugly face but then it also take that long for things to settle down - everyone is different. 

soft hugs

Helena

Such is life! Invasive Papillary Carcinoma, ITC's, Oncotype score 6

Dx 10/28/2008, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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Jun 10, 2009 05:32AM bettysgirl wrote:

jules- sometimes reading too much is not a good thing. Like Helena said above, lots of the women who post have problems. I am also on the Komen boards and have talked to many women who have NO problmes on tamox. I did have some mood swing issues for a while  ( ibegan the tamox in March) but as I have continued it has leveld off. NOW let me say that I also have two grandbabies living with us that are 2 and 1 and that has helped fuel the fire so to speak. I was a little ill before tamox...they are a HANDFUL. The biggest thing for me is the hotfalshes. They are not horrible but the are more requent ince the tamoxifen and are just irritating but nothing I can't deal with. I just wish they didn't come at night as I cannot seem to conjur one up during the day. These hot Georgia nights don't help. I find as the humidity rises I am having more of them.

I would say that the SE's for me began in about two weeks or so and the onco gave me some zanex that i take when i need it just to help with the stress. The farther i go into this the less I have to take. I hope that you are one of us that has few problems.

Take care. I may forget to come back to this, if I do send me a PM if you like.Best Wishes

Lisa/ Bettysgirl

Dx 6/20/2008, IDC, 5cm, Stage IIIa, Grade 3, 2/13 nodes, ER+/PR+, HER2-Radiation Therapy ExternalSurgery 07/16/2008 Mastectomy (Right); Lymph Node Removal: Axillary Lymph Node Dissection (Right); Prophylactic Mastectomy (Left)Chemotherapy 09/18/2008 Cytoxan, Ellence, fluorouracil, TaxotereHormonal Therapy 04/15/2009 Tamoxifen
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Jun 10, 2009 06:02AM SingaporeChris wrote:

Hi Jules,

I have been taking tamox since December and apart from the hot flashes I don't really have any problems. I did have slight pain in my feet and knee joints for a while, but I was only thinking yesteday that I actually don't notice anything now and the how flashes only come sometimes and don't really give me any trouble.  It is very important for you to make sure you take you tamoxafine everyday at the same time if you can.  Some people who have not taken them at the same time have had headaches and odd side effects as they may get too much of a dose if not spaced properly.

Just relax, enjoy your new husband and your life and all will be well.  I live each day to the full and am so happy to have survived this awful disease. Be thankful, meditate and as Helena and Lisa have said, staying postive really is the way to go.

Good luck and keep posting if you are concerned about anything else.

Singapore Chris x

Singapore Chris

Dx 3/14/2008, ILC, 2cm, Stage IIIc, Grade 2, 10/28 nodes, ER+/PR+, HER2-
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Jun 10, 2009 06:09AM everyminute wrote:

Minor side effects - hotflashes (but also could be due to ooph), some joint achyness (but could be because of ooph or the fact that I run every day!!!!)  Glucosomine helps with joint achies!  Other than that I am just thankful for it and hope it works!

find "becausemarysaysso" on facebook...Long May She Run

Dx 6/5/2008, IDC, Stage IIIa, ER+/PR+, HER2-
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Jun 10, 2009 06:49AM lene17 wrote:

I have been on tamoxifen since October, 2008, with no side effects - except that I've noticed a little weight gain - which wasn't supposed to happen.  My onc. did a test to see if the tamox. was working - and said I am an intermediate receptor and to continue it for now.  I was so worried about the side effects - but have been fine.  I take it in the morning - at the same time every day.

lene17

Dx 8/27/2008, ILC, <1cm, Stage I, Grade 1, 0/5 nodes, ER+
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Jun 10, 2009 07:17AM HelenaJ wrote:

You go everyminute - running every day!!  What a star - you are an inspiration.

 How's that Jules -  make you feel better?

Helena

Such is life! Invasive Papillary Carcinoma, ITC's, Oncotype score 6

Dx 10/28/2008, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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Jun 10, 2009 07:49AM Member_of_the_Club wrote:

I have been on tamoxifen for four years and i feel great.  i run five miles a day and am thinner than when i started.  I did have some side effects in the beginning (heavy, prolonged periods, headaches, bruising) but they pretty much disappeared by a year.  Try not to worry, most women do just fine.

Dx 9/30/2004, IDC, 3cm, Stage IIb, Grade 2, 1/17 nodes, ER+/PR+, HER2-
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Jun 10, 2009 12:58PM Celtic_Spirit wrote:

I've been on tamoxifen since October '08. I began having hot flashes during chemo (last summer), so those weren't caused by the tamoxifen. I have some achiness in the lower bones of my legs and some leg cramps. That's about it for side effects. No mood swings, no weight gain, no other problems. The side effects in no way hinder my activity level or enjoyment of life. I've had worse side effects with cold medicine and antibiotics.

Dx 2/8/2008, IDC, Stage IIIa, Grade 3, 9/30 nodes, ER+/PR+, HER2-
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Jun 10, 2009 04:10PM KEW wrote:

I've been on Tam since December, and have since had an hyster/ooph, and restarted Tam.  Since I've been on Tam I've lost weight, my cholesterol has dropped 55 points, and I feel calmer.  I did have hot flashes for two months when I started it, they stopped and now I have them again after the ooph, but they are totally manageable.  I did have some vag. discharge, but that stopped. Oh, my periods stopped when I started taking Tam.  I worked with my onc to stay on Tam after the ooph, for me, so far, it has been great, yes, sometimes I feel more tired, but can I blame that on the drug, I don't know I've been through a lot in the last 8 months.  Do I worry about SE's, well, I don't have to worry about my uterus anymore, but I do make sure I move around to avoid clots.  I even found this pedal machince to keep under my desk at work so I can keep my circulation going when I can't get up (sometimes I get so busy I don't stand up for hoursFrown).  I'm grateful for Tamoxifen.  My mom died of bc and didn't have the chance to take it. I had the cyp2D6 test and metabolize it well, so I'm happy to have the chance to take it.

Was I scared to take it? Sure,mostly because other people scared me, but I got over it because I believe that being 100%ER/PR+  Tamoxifen is important to my health.  

I hope it helps.

Karen

Age DX: 48. Dx Oct 2008, IDC, 2.6cm, Stage IIa, Grade 2, 0/10 nodes,100%ER+/Pr+, HER2-, Oncotype Score 15. BLM with reconstruction Nov 2008.

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Jun 10, 2009 04:45PM awb wrote:

Julie---I finished my 5 years of tamox in the fall and had minimal SEs, mainly hot flashes, which were annoying but manageable. Just make sure you get a yearly transvaginal ultrasound to monitor both the uterine lining and the ovaries.

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 nodesSurgery 09/16/2003 Lumpectomy (Right)Hormonal Therapy 10/30/2003 TamoxifenSurgery 04/05/2005 Prophylactic Ovary Removal (Both)Hormonal Therapy 02/28/2009 Evista
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Jun 11, 2009 01:59PM angeljoy wrote:

I've been on tamoxifen for 12 months now, and my SE's have not been bad at all. I'm 51. For a few months after starting it, the hot flashes I had been having went away.  My onc said don't worry...they'll come back. lol And they did.  But really, they are not bad.  A few a day.  And I don't seem to get them in bed at night.  I have some body aches that I attribute to tamoxifen. Those did not start until about 9 months after I started taking it. Weight gain, not really, but the tummy fat seems harder to keep at bay.  This might not even be tamoxifen, but middle age/menopause. Since starting tamoxifen, I have not been more irritable or moody at all. The thing to rmember about tamoxifen is that for most people the benefits far outweigh the SE's and risks. I'm sure your and your husband will be just fine.  Best of luck to you!

Angela

Dx 10/12/2007, ILC, 2cm, Stage IIa, Grade 1, 6/15 nodes, ER-/PR+, HER2-
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Jun 11, 2009 05:03PM jules4evr39 wrote:

Thank you all SOOOO MUUUUCHHH!!!!! I am so happy that I posted on here now!!! I will go get my tomax right now....been sitting at the drug store for a while...lol. You have all made me feel so much better. I have been so scared of turning into a horrible person on the med. I have dealt with so much loss recently...my mom most recently passed away..and just got my Dad out of the hospital today..they saved him from a heart attack. I"m just so overwhelmed in my life right now....but I have found my Saving Grace on here!!! This is even making me cry...I feel like I just read more support on here than I ever get at home. God Bless All Of You Ladies Here!!!

jules4evr39

Dx 10/1/2008, IDC, <1cm, Stage I, Grade 1, 0/4 nodes, ER+/PR+, HER2-
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Jun 11, 2009 05:18PM jules4evr39 wrote:

1 More Question Ladies..please

I did get the choice to remove my 1 last ovary, if that was the route I wanted to take.

My onc was pretty worried about the se's that could cause serious health problems for me (i have so many already..heart,,hypothyroid..etc.). He sent me to the Gyn for consult. The Gyn said it would be ok, but my choice. Only thing is....the ooph, would placed me immediately in meno...but maybe??? not as bad of se's?? I have a choice here..and already had hysterectomy at 24,,just one ovary left any way..idk ...this would equal the same effect I am looking for, right??

jules4evr39

Dx 10/1/2008, IDC, <1cm, Stage I, Grade 1, 0/4 nodes, ER+/PR+, HER2-
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Jun 11, 2009 05:21PM jules4evr39 wrote:

Oh..sorry for such late response to 1st post..told you about Dad...on my way to work now, so I will not get to read your posts til maybe tomorrow...just want you to know how important they are to me.

Love To You All.....jules

jules4evr39

Dx 10/1/2008, IDC, <1cm, Stage I, Grade 1, 0/4 nodes, ER+/PR+, HER2-
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Jun 15, 2009 02:24PM missde3 wrote:

Hi - I'm new to this site.  Was getting scared of starting the Tam, too.  One side effect that seems to be prevelant with my friend is extreme vaginal dryness. Is this true for anyone else???   I was dx on 4-13-09.  DCIS and IDC.  Three small little spots of the IDC: .15 cm, .15 cm and .30 cm.  Had bilateral mastectomy.  No need for chemo but am er+ and pr+.  Have a history of lymphoma with radiation therapy which all the docs think caused the bc.

Dx 4/13/09, DCIS (x2), IDC, Stage 1, Grade 2, 0/3 Nodes, ER+/PR+, HER2-

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Jun 15, 2009 02:41PM jules4evr39 wrote:

missde3,

It looks like we have identical dx. I had it both in one breast and had mastectomy in Nov. 08'.    No need for TX other than Tamox.Took my first pill last night after starring at it for 2 weeks and not even getting it filled for 6 months.. I was just so scared of SE's,,but knew I have to take it. I have been hating to one day put up with vaginal dryness. But, just sooner than later, right?

jules4evr39

Dx 10/1/2008, IDC, <1cm, Stage I, Grade 1, 0/4 nodes, ER+/PR+, HER2-
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Jun 15, 2009 02:48PM missde3 wrote:

I know everyone is different and nobody has all the possible symptons but I also have Polycystic Ovary Syndrome so I have to see my gynie first to see if it will increase my chances for the uterine probs.  I'm 49 (will be 50 in August), still get my periods monthly and just had a slew of hormone tests in Feb which showed I was NOT going into menopause so i'm wondering if this will hit me harder.  I had both breasts removed to alleviate the fear and the testing every 6 months and now the onc is saying I might have to GET tested every 6 months by the gynie. Where's my peace of mind? LOL!

Dx 4/13/09, DCIS (x2), IDC, Stage 1, Grade 2, 0/3 Nodes, ER+/PR+, HER2-

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Jun 15, 2009 10:30PM penguin1 wrote:

Hi missde3-

I also got my precrip for Tam and have been staring at the bottle for a week... scared of SEs too!  I'm trying to convince myself to take it tomorrow before going to bed!  I'm 40 and had DCIS removed, still have LCIS- considering bmx, but I'm going to take the Tam first and see how I do.  Let me know how you do!

Dx 4/11/2013, DCIS, Stage 0, Grade 2, 0/2 nodes, ER+Surgery 04/15/2009 Lumpectomy (Left)Surgery 05/15/2013 Mastectomy (Both); Lymph Node Removal: Sentinel Lymph Node Dissection (Left)
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Jun 15, 2009 10:40PM jules4evr39 wrote:

2nd pill tonight with no problem...I decided to make peace and be friends with it...lol If SE's hit, well, I guess I know its working to save me....jules

jules4evr39

Dx 10/1/2008, IDC, <1cm, Stage I, Grade 1, 0/4 nodes, ER+/PR+, HER2-
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Jun 16, 2009 08:04AM mimiwhite wrote:

I am so very grateful for the Tamoxifen.  It is POWER to keep us healthy.  Been on it 1 month and lost 1 pound.  I exercise daily and eat well for most of the time.  :) 

I have to work everyday on my attitude.  It is my choice to worry or my choice to make it the best day I can.

 Enjoy life!

Love,

Mimi

Dx 10/21/2008, ILC, 2cm, Stage II, Grade 1, 0/2 nodes, ER+/PR-, HER2-
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Jun 16, 2009 10:21AM jules4evr39 wrote:

so right Mimi...we can let it control us or decide to control it. I WILL try everyday to make the most of my life. It may get a little hard some times..but if too hard..I will ask God to carry me through it. Trying to stay positive!!..jules

jules4evr39

Dx 10/1/2008, IDC, <1cm, Stage I, Grade 1, 0/4 nodes, ER+/PR+, HER2-
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Jun 16, 2009 12:54PM tkone wrote:

Jules,

Just wanted to add to the other opinions here.   I started Tamox in December of 2008 and had hot flashes (which I was already having due to being put into menopause from chemo).  I was a little moody for a couple of months.  Nothing horrible, just not quite the same as I was before.  It seems to have leveled off and besides the fabulous hot flashes, don't have any other S/E.

Good luck!

Tracy http://tracy-breastcancerandme.blogspot.com/

Dx 5/7/2008, IDC, 2cm, Stage II, Grade 3, 0/4 nodes, ER+/PR+, HER2-
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Jun 16, 2009 12:59PM jules4evr39 wrote:

Tkone,

Just as I posted on another thread....It is posts like yours that gives me hope and the ability to be positive!!! Love to read em'    By the way...anyone live near me here in southwest Ga.? with it being 109 degrees today, can't wait for the hot flashes!!

jules4evr39

Dx 10/1/2008, IDC, <1cm, Stage I, Grade 1, 0/4 nodes, ER+/PR+, HER2-
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Jun 16, 2009 02:41PM jpann39 wrote:

Hi Jules, Im Jule Smile

I was on tamox for 2 1/2 yrs with very minimal side effects.....I changed recently to Femara (took my first one last night) due to aches and pains of the tamox rearing its head....

I think it all depends on the person, attitude and bodies on how one reacts to things...

You have a good attitude so I believe you will have few side effects...

You always see posts about the awful stuff but rarely see posts saying"Im ok with it, not many se's"....its like with everything else in this world....you always see the bad before the good peaks in....

Best wishes

Jule

'Gain strength by the positive and don't be sapped by the negative"

Dx 11/4/2006, IDC, 2cm, Stage II, Grade 1, 0/9 nodes, ER+/PR+, HER2-
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Jun 16, 2009 02:47PM jules4evr39 wrote:

I'm so glad that all the ladies with minimal SE's posted on here!!!! I was terrified and read the threads on here for 6 months. Just took 2nd pill last night and feel so much more positive now...really...THANK YOU for turning the table around..to the good side! ..jules

jules4evr39

Dx 10/1/2008, IDC, <1cm, Stage I, Grade 1, 0/4 nodes, ER+/PR+, HER2-
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Jun 17, 2009 02:18PM jules4evr39 wrote:

okay...The posts on other threads about their decreased libido is scaring me...of all things to get or go away..this is awful to hear. Was thinking if my estrogen fell then I would maybe have more testosterone and maybe want sex more like a man..LOL Oh well..can't have it all....jules

jules4evr39

Dx 10/1/2008, IDC, <1cm, Stage I, Grade 1, 0/4 nodes, ER+/PR+, HER2-
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Jun 17, 2009 04:53PM jules4evr39 wrote:

The Tamox. made e very very nauseated yesterday and so much worse after the 3rd pill last night. Since my compazine had no effect on this nausea, I called my Onc. he called in Zofran for me. What an excellent pill!!!! Finally some relief!! He told me that the nausea is very common due to the body adjusting to the med. initiation.Said it may last for a fewmonths then subside..At least we found something to ward off the nausea...Told him about my hands burning yesterday...holding ice in cloths, so bad..he said to expect the hot flashes anywhere on my body at any point b/c every woman has these....I dealt with the HEAT but not the NAUSEA..feel much better now..Going to work now.. will catch up with you ladies tonight...jules

jules4evr39

Dx 10/1/2008, IDC, <1cm, Stage I, Grade 1, 0/4 nodes, ER+/PR+, HER2-
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Jun 17, 2009 04:58PM mela4409 wrote:

Hey!  I had a little nausea in the beginning too, but it subsided after a week or so.  I take it at night before I go to bed just in case.  I have had no problems with libido...I think mine has increased actually!  I have a hot flash now and again, but nothing too often.  I used Zofran all through chemo...it works great!  Good luck to you.

God only gives you as much as you can handle.

Dx 9/20/2008, IDC, 3cm, Stage II, Grade 3, 1/17 nodes, ER+/PR+, HER2-
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Jun 17, 2009 06:38PM Member_of_the_Club wrote:

My libido has been just fine as well.

Dx 9/30/2004, IDC, 3cm, Stage IIb, Grade 2, 1/17 nodes, ER+/PR+, HER2-
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Jun 17, 2009 09:12PM jules4evr39 wrote:

Mela and member:::

OMG!!! So glad to hear that about your labido!!! On another thread everyone is in the dumps about it,,,I love the positive comments on here..makes me feel so much better!!! Thank you....jules

jules4evr39

Dx 10/1/2008, IDC, <1cm, Stage I, Grade 1, 0/4 nodes, ER+/PR+, HER2-

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