Did you finish your 5 years on Tamoxifen?

cathmg

Hello,

I will have taken Tamoxifen for 2 years this fall, and am already looking forward to the end of my 5 years. I have my suspicions that Tamoxifen is somewhat responsible for my SE's including low libido, memory issues, and fatigue. I don't dare NOT take it, however. I would love feedback from anyone who has completed their 5 years-how did you feel after you were done? Did you feel better?

Best wishes,

Catherine

Anonymous

I am heading into year 2 on tamoxifen.  I agree it has messed up my memory, also low libido and oh, another thing is weight gain.  I also suspect it has weakened my bones as the last bone scan shows I've lost significant bone mass.  No wonder people quit taking it or never start. 

Have you had any bone scans done? 

1Athena1

I am having trouble getting to my 18 month mark.

SEs - Hmmm.... I don't think there's enough space in cyberspace for the list: total inability to focus, unusually sensitive and argumentative, fatigued, feeling sorry for myself, feelings of physical weakness, mild hot flashes and hysteria, generally. Can't take some of my other meds while on it; body temperature completely dysregulated.

If this is what menopause feels like, I don't want to hit the 10-year survival mark, thank you very much. In cancer, it seems, you have two choices: die, or take treatment that makes you wish you were dead.  

kathleenm

I was premenopausal when diagnosed with Stage 2B of the left breast, followed by chemo, radiation and reconstruction. I took Tamoxifen for two years. The side effects I noticed were nausea, increased appetite, and difficulty losing weight. When I became postmenopausal I was switched to Aromasin which didn't work for me. My hair began excessively falling out so I'm being switched to Femara.

cathmg

Hello all,

Thanks for your replies! I am reminded that I need to pick up my T at the pharmacy.

Shelly56, I haven't had any scans done to check on bone health. I thought Arimidex was the one to watch for that, and not so much Tamoxifen?? My onc hasn't ordered anything.

I am 45 and premen, so my onc says he will switch me to Arimidex after my 5 years on Tamoxifen are done. While I am thankful for the protection, I am not the same person mentally that I used to be. Word recall is SO bad, it's embarrassing at work. I am hoping that some of that will turn around after my course is finished. 3 more years.

All the best,

Catherine

whitbyjet

I'm just a little over a year taking Tamoxifen. I took a 45 day break per my oncologist starting en of August. The side effects were getting so bad that my quality of life was miserable. I was moody, depressed, hysterical, retaining water, blurry vision, hot flashes, leg cramps, etc. He took me off of it and started me on Celexa, an antidepressant that you can take while on T. After about a week, my vision cleared up and after about a month most of the side effects were gone, and my mood totally improved (probably due to the antidepressant, along with being off of Tamoxifen).

I just restarted taking it at 10 mg and go back to 20 mg on Sunday. I'm hoping this time around it will be much easier, but if not, we'll see how it goes. He said the longer I can be on it, obviously the more the benefit. I'm hoping for 5 years. At that point, if I'm still premenopausal, I asked him what my options are. He said what we know right now, not much, unless I shut down my ovaries with Lupron and take an AI, or have a hysterectomy and take an AI. You can't take AI unless you're in menopause. I'm hoping we'll have something else to take or more options in 4 years.

Good luck everyone!

Deborah

Anonymous

Cathmg:  I have had bone scans done because I was peri-menopausal at time of diagnosis and treatment, and now am full menopause mode. Even without this ugly disease, women get their bones checked at menopause as we lose so much density. But the drugs have done their damage too.  I stopped taking Celexa, Gabapentin & Effexor due to it weakens bones, and I don't need that especially now.  I wish my onc would have told me that was a SE of those anti-depressant drugs and I don't think I read anything about that either.  Good luck ! 

1Athena1

I am one of the ones who can respond "yes" to the question in the heading of the topic. I threw my Tamoxifen down the toilet yesterday. I can't treat more than one illness at a time and I refuse to treat a maybe illness (cancer, which surgery MAY have cured - no one knows) by making one I definitely have much worse. So if I get mets it won't be hormonals for me. I might just go with Smith & Wesson - better than those chemo combinations, fewers SEs, and only slightly quicker at hastening death.

I think nonadherence rates for Tamoxifen over the five years are astonishingly high - but I do not have that data on hand. I tried it for 18 months and I declare myself through. Two hospitalizations due in part to the SEs of hormonal therapy (I was also on Lupron for a while), countless hours of productivity lost, dreams at best imperiled and much, much heartache are enough, thank you very much. I prefer early death to this.

1Athena1

cathmg - and everybody else on this thread - I looked around for data of what they call "Tamoxifen persistence" (or Tamoxifen "adherence") - or the percentage of women who finish their five years with minimal interruptions. I couldn't find much because many studies involve a small number of people. I wish there were one good mega study.

The most often cited one has about half of the women NOT making it to 5 years; this is from a study published in British Journal of Cancer in 2008 that I am having trouble downloading. Just over 2000 people were followed. A study in the March 2007 issue of Cancer, which followed about 2,800 women in Dublin measured rates up to 3.5 years - 31 percent of those followed had discontinued Tamoxifen by then.  

Anonymous

cathy------I took tamox for 5 years with minimal SEs (very similar to SEs I would've had with natural menopause anyway). You hear a lot about those who didn't complete the full 5 years, but there are a lot of us who have. My SEs are mainly hot flashes, some insomnia and achiness; but hard to tell as I did have immediate surgical menopause during the time I was on tamox, so a lot of my SEs may  be more from that than from the tamox. Personally, I'd rather put up with the SEs than the alternative (invasive bc) Feel free to PM me if you'd like

Anne

Moore40

  I have been on and off of tamoxifen for 2 1/2 years. I am not consistent with taking pills everyday, and the se's can be annoying. I have joint pain continuously and hot flashes and low libido every now and then. I think my main concern is that I have endometriosis and that pain is severe since tamoxifen can cause uterine cancer. I had heard about a metabolizing test for tamoxifen to see if it is actually helping, but i haven't mentioned it to my doctor as of yet. I would like to know if anyone has ever switched from tamoxifen to chemo, because I am so bad at not taking my pills even though they are right in front of me, but the need is just not there to take them, and my onc wants me to take a calcium pill along with an anti depressant because of se's of tamoxifen. I have never been a pill popper and I will not start now. Is there anyone in the same boat as me?