Tamoxofin - Anyone not having side effects?

Urbie

Hi - I am two weeks out from my bilateral mastectomy and my surgeon says that I will have to take Tamoxofin because I am pre-menopausal (40). He says that it has gotten a "bad rap" and that it is a life saving drug. I think that he is a terrific doctor and I don't mean to second guess him, but I am interested to know if there are women out there that are fine taking this drug. I am having the Oncotype DX test done and we are waiting for those results to determine if I need to have Chemo, then the Tamoxofin will follow. Any comments? Thanks!

KimRI

Hi,
I was 33 when I first took Tamoxifen. I took it for 3yrs. with no problem. I had some hot flashes the first few months, but not enough to do anything about. I didn't have any weight gain like some say they get.

I had a hysterectomy in Nov. and my Dr. said I had alot of endometreosis. I was completely shocked because I never had bad cramps or excessive bleeding along with it. I have wondered if that was one of the side affects to Tamoxifen......I never did look it up to see.

Kim

Urbie

Thanks for your response Kim. I wasn't aware that weight gain was one of the side effects. That, I will not accept. It is hard enough at 40 not to gain weight and cancer plus weight gain will really put me over the top. Imagine... no boobs, no hair and get fat - pretty bad state of affairs I'd say. And I did look it up and abnormal growth of uterine tissue (endometriosis)is a possible side effect of Tamoxifen. I am sooooo not wanting to take this stuff.

CaliforniaKate

I've been on tamoxifen for almost 4 years. I only have occasional mild hot flashes, and not enough to complain about. I've taken the 2D6 test a week ago to make sure I'm metabolizing the tamoxifen, just for my own piece of mind. I'm waiting for the results. The tamoxifen didn't cause me to have weight gain. Kate

IowaCindy

I've only been taking it since the first of May but I've had no real problems. And no weight gain either.

I'm going to have to ask about that test though. This is the first I've heard of it!

Cindy

1Cathi

Hi - well I guess I am one of the unfortunate few you read about with Tamoxifen side effects, I had them all. Well actually no weight gain, but by the time I had taken it for 3 weeks 10mg daily I was unable to tie my own shoes, headsaches, nausea, excessive mood swings, happy to crying, hot flashes out of this world etc. My onco stopped it for 1 month, re started same thing in 2-3wks times. Stopped again, started taking 5mg x2 a day (AM-PM) just no good, it was awful, I am no longer taking it, my onco said I had to choose between life and quality of life, I had to choose quality. I do not want to discourage you from trying it, because I wish I could take it, and I believe I gave it a good shot, but for me and I am 47 it was awful, I believe from what I have learned side effects can be a little harder on premenapausal woman, BUT AGAIN I WISH I COULD DO IT, it would just be one more thing to hopefully keep this dam disease away, it is your choice , but know you can always stop taking it if the side effects are to much.

chemo072

Urbie - I wasn't going to take tamoxifen, but it increases my chances (of survival etc.) by 9% - and that I can not walk away from. 9% is a lot - it's just as much as the chemo bought me chance wise, for a lot less hassle (I hope) Did your doc go through your adjuvantonline survival/relapse rate #s? That's what convinced me.

All my best,

Urbie

AmyaM - This is the firest that I have heard about adjuvantonline survival/relapse rate #s. I looked at their website and it says that you need to be a medical professional to use the site. I will ask my doctor when I see him on Sept. 11. Are you having side effects?

Anonymous

I took Tamoxifen from Feb to April with no side effects...in April I had a complete hystorectomy and they changed me to Arimidex....I took that for 2 months and the side effects were awful...Im 46, NOT 90, so I choose to go back to the tamox last month...I take 10 mg in the morning and 10 mg at night...I will be seeing my oncologist in Sept and am planning to request the test to be sure that I am metaboloizing it...I do have a couple of mild hot flashes but nothing bad, so far no aches and pains like I had with Arimidex....

Urbie, the adjuvantonline thing you just need to fake it an say you are a medicial and create an account....

Hugs
Jule

thomcat

I have been on Tamoxifen for 4 mos and side effects have been minimal. I have hot flashes but they started during chemo. I have not experienced any weight gain but the most noticeable side effect is bone/joint pain. I have it in my elbow and ankles. It's tolerable and I don't take anything for it because it is not constant.

Cathy

JNelle

Hi Thomcat:

I am postmenopausal and have been unable to take Femara and Arimidex, but Onocologist wants me to start Tamoxifen as soon as I am totally healed from the surgery I had on 8/22.  I had the test and I will only moderately metabolize it.  I am so afraid of this, as the pain I am still experiencing from the two Aromotase drugs, is still so painful.  Went to a neurosurgeon who says the severe problems I am having is from the residual of the meds.  I pray I will be able to tolerate it as well as you are.  I just found this site, and I really appreciate it, as I feel so alone.

God bless you,

Janelle

sam408

I've been on tamox for 6 months and during the first 3 months I was also taking lexapro. Everything was great and I had basically no side effects. Then I started reading that the lexapro can interfere with the tamox and since I didn't care for the complete lack of emotions it left me with, I went off it.

The tamox SEs hit with a vengance. Unbelievable hot flashes/night sweats and joint pain. Over the past couple of months the hot flashes have diminished and become very bearable, but the joint pain is no better. I'm taking glucosamine chondroitin and Aleve daily but am still in quite a bit of pain (mostly in my feet/ankles, right hip and right hand). I've also gained 10 pounds that I can't seem to budge!

I'm trying to continue on with the tamox because I want to do everything I can to keep this beast from coming back, but when I have trouble getting up in the morning because I'm so stiff, I wonder if it's all worth it. I'm only 50.

Everyone is affected differently by the tamox, so I would always suggest you try it to see how it works for you. I'm still hopeful the joint pain will diminish over time or I'll find something that helps it so I can stay on the tamox.

Good luck.

Diana_B

Hi Urbie,



I'm on tamoxifen and have been since February.



At first the tamoxifen worsened my hot flashes, which I'd had since I started chemo. However, my hotflashes have now gone and my period has returned!



Other than that I had no other side effects. The first time the pharmacist gave me the tamoxifen he told me that most women tolerate it well and he's had few complaints. I was skeptical and thought "He's a man...what does he know?", but he was absolutely right in my case.



I started a similar thread to this in the hormone therapy section because I was afraid of being switched to an AI. We were remarking in that thread that the women who tolerate a drug well don't tend to write in and say so, since they have nothing to complain about, while the women who are suffering do tend to write in.



Darya

Urbie

Thanks for your responses!  It seems that my starting Tamoxifen will be delayed as I will start a 12 week Chemo treatment of Taxotere and Cytoxan on Monday - Oct. 1.  I was hoping to not have to do Chemo but my Onc didn't think it was a wise decision.  So, now my dread of the Tamox side effects has been displaced with my fear of the Chemo side effects.  If it is not one thing it is another.  But I have decided that I will do just fine with the Chemo and just get through it.   I have to as I have two kids (5&8) that are pretty dependent on me. I am looking forward to 2008...  Prayers to you all.

Bernadine

Urbie, I to had the same as you and I went through chemo and it went fine I had 3 FEC and 3 Taxotere side affect are tolerent you will do fine. They gave you something for nausea, and some people don't need them. But take what they gave you that's important. Taxotere there's no nausea just leg pain and joints. I've been post chemo since aug14 and I've fought it and went walking after my 4th week started slowly and now I don't have that much pain just my nail are getting funky. You'll do fine.  We all been there......

-------------------------------------------------------------- 

Dx 9/3/2007,IDC,stage1,grade2,0/19nodes,ER+/PR+,HER-, margin clear

JudyWI

Just a note on the adjuvantonline.com web site. Yes it has you have to be healthcare person but you don't just sign up.  They ask a few question that are easy for anyone to answer.  It is the web site my doctor used to see what would help me.  He was surprised when I pulled out my copies of the same report and already knew what he was going to tell me.  He didn't tell me he used that site until I showed him my report copies.  But again you may not want to know what it shows for your cancer.  The doctors like to be more positive, way way more positive, than sites like these list. 

I had a awful time with chemo had to stop or die but am now on  tamoxifin and so far have not had side effects.  Makes me wonder if it is working. 

Marlee

Hi - I've been taking Tamoxifen for about 6 weeks.  I don't have any hot flashes (yippee) thus far.  I have bone pain in my hips and some cramping/bloating feeling in my abdomen.  No weight gain but I am exercising (walk 5 miles a day).  I'm 49 and have not gone thru menapause as of yet.  I opted for tamoxifen because it does increase your chance of not getting bc in the other breast.  I had a mascetomy w/ a tissue expander and am waiting for Dec for the actual implant.  I consider all of this the 'lesser of the two evils'.  I am grateful I had great surgeons and that my IDC had not spread to the lymph nodes.

d313

I am having hot flashes, but I believe my weight gain is not totally due to Tamoxifen.  This December will be 2 years for me being on Tamoxifen.  However, I do get annually breast, pap test, and testing for HPV.  I was getting tested for HPV testing prior to being diagnosis with dcis and id of the left breast.  I was told the cancer was caught earlier.  I not had menstrual cycle since taking neo-adjavant chemo from June 2005 to August 2005.  However, I did have a cycle on April 8, 2007 for one day prior taking the HPV test which the result was no hyperplasia and no carincoma.  Then I was told if this happen again to come back because of the side of effects of Tamoxifen.  And it happen again on June 2007 for a week.  This happen has if it was a normal cycle.  When I called my gyn physician after discussing it with my primary physician, I was told by my gyn physician not to worry because the HPV test was just done the results was great.  Since June 2007 I have not had a menstrual cycle.  I am 51 years old.  I suggest that all female should have a HPV test regardless.  I was not informed of having HPV testing until I received a copy of my file that this test was performed prior of being diagnosis with breast cancer.  I know the testing was performed after being diagnosis with breast cancer, but not prior of being diagnosis.  That is a good thing, I believe.  However, I just had breast reconstruction on the left breast (mammoplasty) and the right breast reduction.  I was never diagnosis cancer for the right breast.  However, allow me to tell how Tamoxifen is helping.  When I had the right breast reduction before on June 14, 2007 with the left breast (mammoplasty), the pathology report stated for the right breast the tissue removed was a focal atypical lobular hyperplasia (ALH), margins uninvolved by ALH, fibrocystic change with blunt duct adenosis, microcalification, adenosis, and mild usual intraductal hyperplasia, diffuse fatty stromal infiltration and skin segments showing midl superficial dermal perivascular chronic inflammation.  Now because of the Tamoxifen, I am told by my oncologist this would have been the treatment needed if I did not have that hyperplasia removed.  The hyperplasia is sign of pre-cancer, therefore, since it was removed and I am already taking Tamoxifen it was a blessing.  If I did not have the hyperplasia remove the Tamoxifen would or could have prevented it becoming more serious.  The diagnosis of the left breast reconstruction in the same pathology was atrophy, diffuse fatty stromal infiltration, patchy fibrosis, focal foreign body giant cell reaction, sking segments displaying dermal fibrosis, pigmentary incontinence, and focal foreign body granuloma.  Do not know what all this mean no more than since the first pathology after having lumpectomy and re-excision I am suppose to be cancer-free while taking Tamoxifen.  My first and second mammy since the neo-adjavant, lumpectomy, re-excision, radiation and thereafter has been benign.  I might have side effects (hot flash and possible weight gain) taking Tamoxifen, however, it appear that this treatment helped prevent cancer in the right breast base on the diagnosis which is on the pathology report after performing breast reconstruction. Sometime the benefits are greater than the risk in certain situation while taking Tamoxifen.  After December 2007, I will have 3 more years to take Tamoxifen. I have not inquire about what happens next after taking Tamoxifen for 5 years, but you best believe I will.

MisK

Hi, everyone!! I started taking Tamoxifen in Aug. I  haven't had my period since April. Had a mastectomy in Feb. Do you still get your period while on Tamoxifen? And, if so, what do they mean by irregular bleeding. I am confused by this all. Thank you for your help.

jumpin

Hi  I am  40 and have just had bilateral mastectomies.  I have not seen an oncologist yet but the surgeon thought I should be on Tamoxifen, how is it treating everyone ?is it worth it. Did you have reconstruction (tissue expanders) If so when does the pain stop? 

ICanDoThis

To answer the question in the post - me!

Not a single tamox side effect, except possibly leg cramps (and those have only gotten worse, not a new development).

Is it worth it - well, it cuts your risk of a recurrence a lot. Different for everybody.

80% of us will be fine - but which 80%?

I have a saying - I'm just not that lucky in casinos - so I don't want to take the chance to do without.

annie06

Hi

I too am one with NO side effects from the tamox! I had the test to see how I am metabolizing it...thought for sure it would be 'poor metabolizer', but turned out I am a HIGH metabolizer! All good!!! I too was your age Urbie...with young children...and chemo too. Side effects from chemo were minimal also for me. I have not had weight gain or anything from the tamox. I think I am in better shape AND health than before my BC dx, and I always thought I was pretty healthy! I also have adopted better dietary habits as well as regular exercise. Hope you are doing well and encouraged to know there are others out there doing well with no side effects...though I also know there are those with all the side effects.........we are all different!

Anonymous

I have taken  tamox for 5 years--actually just took my last one this am!-----fortunately with mostly mild SEs.  While it does have some serious SEs (blood clots and endometrial cancer), they are reportedly very rare with an incidence of less than 1%. It is a very good preventative medication with the most common SE being hot flashes. I would just recommend to anyone taking tamox, to have a yearly transvaginal ultrasound to monitor both the uterine lining and the ovaries.

Anne

hpisles

I started taking tamox a week ago.  So far no problem.  Since I'm already having hot flashes, it just increase the intensity of the flashes but balancing it out with taking flaxseed (which I was taking before the cancer) and exercise - it really helps decrease the frequency of the hot flashes.  The exercise should also help balance out any weight gain side effects.  Good luck with your chemo and don't worry about tamox that will be a walk in the park after everything you've gone through so far.

vhqh

Tamoxifen is not very costly, I recommend everyone at least give it a chance before refusing it due to the fear of side effects.

I have been on it since February of this year, had some hot flashes for a couple of months but they faded away.  No weight gain, actually weight loss is a listed side effect and my weight has been creeping down.  No other problems at all with it.