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Trusted Contributor
Posts: 1,395
Registered: ‎01-13-2012
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In a few weeks I will be starting to take Tamoxifen for 5 years.  I am 62 , healhy (aside from stage 1 BC), and quite active.  I have 11 more radiation treatments to go and have had NO  problems thus far.  Anyone else taking this med as a follow up?  I hope to have no problems and several people I know who have taken it have been ok.  Any thoughts or experiences with this medication?
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Honored Contributor
Posts: 17,892
Registered: ‎07-03-2013

Go to the wellness forum and post on the cancer survivors thread.  There are a number of breast cancer survivors there.  I know they've talked about that drug.  I finished treatments in November for endometrial cancer.  Good luck on your treatments.

Respected Contributor
Posts: 4,354
Registered: ‎03-09-2010

I began to take this in Nov.'15 and  have experienced excema, tiredness, some hair loss.

 

I stopped taking this last week on my own volition (AMA) and will be meeting w/my oncologist very soon.

 

For me to stop is a quality of life issue, esp. since this is a 5 year commitment. I cannot tolerate the excema for 5 years; I felt like I was just drying up into a prune.

 

I dont know what my doctor will say, but to have to be on this for 5 years he needs to be able to offer me some other options.

Respected Contributor
Posts: 3,018
Registered: ‎03-09-2010

I was on tamoxifen for 5 years after radiation and have been off of it for a year now. During the time I was taking it I had fatigue, hair thinning, a slower metabolism and thickened endometrium (known as tamoxifen uterus). The side effects are almost all gone now. You also need to be aware that there are medications you cannot take with tamoxifen. A lot of them are over the counter like Benadryl, Claritin and many others. Docs sometimes aren't aware of the interaction and you have to be careful about what you take as thes meds interference with the effectiveness of tamoxifen. You can check drug interaction for yourself at drugs.com or other websites.  

I decided to complete the course of medication after serious discussion with my oncologist. Please do the same before you make any decision. I wish you all the best in your battle to defeat the beast and know that you can reach out at any time to your sister survivors.


'I refuse to engage in a battle of wits with an unarmed man'.......Unknown
Regular Contributor
Posts: 244
Registered: ‎05-28-2015

Everyone reacts differently to any medications but I understand wanting to know about the experience that others have had. I also had to stop tamoxifen due to side effects. The option that I took after stopping was to have my ovaries removed and switch to arimidex. I tolerated that much better. Good luck to you!

Valued Contributor
Posts: 799
Registered: ‎01-03-2011

I will finish 5 years on Tamoxifen in August and have had no problems.  Same with several friends.  I hope the same is true for you!

Respected Contributor
Posts: 3,371
Registered: ‎06-19-2010

I chose not to take Tamoxifen after chemo and rad. I did not like the side effects that I read about. So after my 5 year visit my onc said to me you were probably better off not taking it. So why in the world did she recommend it??? I have been BC free for 18 years now. It's a personal choice. I was Stage 1 and no lymph nodes involved. Several women in my support group started it then stopped. You must do some research and base your decision on your situation.

Honored Contributor
Posts: 9,987
Registered: ‎03-09-2010

I'm on tamox right now and have been since 2013. I am post menopausal but this drug was a better option for me. I have some side effects too, and will switch over to an aromatase drug like fermera ,  in a few months, to finish  the last couple years. Everyone is different and I have yet to talk to another person that has my same side effects. I would, however NEVER just stop taking it UNTIL I talk to my onc dr first. My breast cancer was stage 3a. My quality of life is different now; but I think of not doing all I can to try to prevent recurrence could land me in a hole in the ground. And yes we all need to decide what is best for us. Thanks for the info on some of the OTC drugs that can interfer with tamox; I will certainly check that out from now on.

Honored Contributor
Posts: 9,987
Registered: ‎03-09-2010

@midnightgirl wrote:
Spoiler
In a few weeks I will be starting to take Tamoxifen for 5 years.  I am 62 , healhy (aside from stage 1 BC), and quite active.  I have 11 more radiation treatments to go and have had NO  problems thus far.  Anyone else taking this med as a follow up?  I hope to have no problems and several people I know who have taken it have been ok.  Any thoughts or experiences with this medication?
Spoiler
 

Do your homework--there are many good sites that will tell you about tamox. Your personal history comes into play too, as does the type/stage of BC. I was 59 when I was dx with BC; had the surgery, chemo and rads. I've noticed that my hair is thinner---but not see thru thin and I've packed on about 20 pounds too, which I HATE . I am more tired at night and my stamina is not  great  and have joint and muscle aches and pain.  But those things are being managed. Haven't heard about getting exzema before tho.

So happy you are doing well with your rads and that you didn't have to get chemo!! That is awesome. There is a cancer survivors board that is  great that you should visit. Lots of good info from all types of cancer Thrivers and some laughs too, and tons of rah-rah from our cheerleaders.