Tamoxifen

My prognosis in 1987 was not good.  Statistics back then were terrible for Stage 3 (large tumor, 4 nodes).  I had chemo, mastectomy and radiation, but the new kid on the block was tamoxifen. 

I took tamoxifen for 7 years (no one knew how long to prescribe it back then).  It definitely prolonged my life.  I then had a remission of 18 years.

I have been 26 years now and I am still fighting cancer, but I am so grateful for the years that tamxofen has given me.

My side effects were mild.  I felt calmer on tamoxifen, less energetic (fatigue) towards the end of therapy.  I still had periods and occasionally had a tamoxifen vaginal discharge (thin, inconsequential but weird).  I sometimes had menopausal-like night sweats, but they were manageable.

The most difficult side effect for me personally was that tamoxifen really killed my sex drive.  At 33, that was hard.  My husband and I communicated a lot during this time as I think his feeling were hurt.  We worked it out and are closer than ever.  We have been married 39 years this fall!

After tamoxifen, I definitely had more energy and lost the ~10 lbs that I had gained while on it.  Weight gain is common, but my oncologist warned me so I tried to be careful with my diet.

Of course, the scariest side effects are clots and uterine cancer. Along the way, I had many uterine biopsies (my gynecologist was nervous).  They were all normal and I never had any problem with clots.

Good luck!  I tried to include everything I could remember.

I started tamoxifen last August.  Not sure that it has had any adverse effects on me yet.  I do know that halfway through the five-year plan, my oncologist plans to switch me to something else.

I have some "warm" moments during the night; but I was having that before.  I am not any more bothered by them than I was before -- not too bad.

I had surgery, did chemo, and had radiation therapy.  This is the last part of my preventative push -- attempts to prevent a reoccurrence. 

As we all tend to say on other posted questions and such -- we are individuals who react individually to our treatments.  We can share, which I think is helpful, so we know what we COULD expect. But don't be surprised if you don't match up with any one of us 100%.

Marcia527 said:

Tamoxifen

I took Tamoxifen for about 9 months. It caused hot flashes .if taking this meds you should see your  OB/GYN regularly . When I started spotting they changed my meds to Aromasin. This drug is only prescribed if you are in menopause. I was switched because I had a sister who had uterine cancer. So because of family history my onc thought it better to switch meds.

 

I am not on tamoxifen.  I want to wish you good luck on it and to say welcome to this great group of survivors!

Hugs, JJ

The weight gain has been a little depressing:( Working on that. The most frustrating thing that I experienced was bad and frequent yeast infections...now I have them under control by eating a lot of good yogurt every single day. 

Wendy Joy said:

The weight gain has been a

The weight gain has been a little depressing:( Working on that. The most frustrating thing that I experienced was bad and frequent yeast infections...now I have them under control by eating a lot of good yogurt every single day. 

I'm one of the few who have switched from an aromatase inhibitor (arimidex) to tamoxifen.  I've been on tamoxifen since late January.  I have no noticeable side effects.  I was already postmenopausal so those type of changes had already happened to me.  I've already had uterine cancer and had a hysterectomy, so don't need to worry about getting that. 

I don't think there are any prescription medications that one takes for extended periods of time that don't have significant side effects.  In the case of the hormone therapies, I really want to do everything to prevent a recurrence, so I'll take them and hope they work!  I'm lucky that I felt fine on both arimidex and tamoxifen.

Suzanne

Whitedog52,

I have a feeling of warmth and a vaginal discharge which is terrible. My Gyno says it is normal and my Oncologist says there isn't any changes that can be made because of the family history. What a DRAG. Of course I hate it.

peanutcat

Whitedog52 said:

Tamoxifen

Thank u all very much for taking the time to comment on my question. I reaally apprieciate it. I have read alot of your stories and the strength I feel from u gives me strenth. This is the toughest thing I have ever been through and am still going through, but I hear your stories and realize there is hope and light at the end of the tunnel. I salute u all.

There is always hope and definitely light at the end of the tunnel!  It's great that the pink sisters stories have given you strength! 

Good luck!

Whitedog52 said:

Tamoxifen

Thank u all very much for taking the time to comment on my question. I reaally apprieciate it. I have read alot of your stories and the strength I feel from u gives me strenth. This is the toughest thing I have ever been through and am still going through, but I hear your stories and realize there is hope and light at the end of the tunnel. I salute u all.

Hi there ...  I was started on Arimidex after finishing radiation treatments.  Let me tell you, the side effects I had with that drug were so dibillitating that I stopped taking

it for 6 weeks!   Doc switched me to Tamoxifen in February and I couldn't be happier.  Hot flashes is about all I feel with this drug.  I've noticed a discharge too but it's nothing serious.  I was told that could happen beforehand and it's not a biggie.  

I am already in menopause.  Not sure if you are.  Of course, the biggest concern with this drug is possible ovarian cancer and blood clots.  You just have to be vigilant about getting check ups "down there" on a regular basis.

Best of luck to you.

Mary