Tamoxifen, fatigue and emotional side effects

momdent, first of all welcome!  Congratulations to your country on doing so well in the Olympics.

I have experienced all of the symptoms you describe...especially the irritability/anger and horrible fatigue which eventually became the reason I became so fed up and stopped my tamoxifen altogether....it was great....I finally started feeling like my "normal" self again.  But, then I developed a pain in my shoulder blade and long story short...I was diagnosed with extensive bone metastases.  So, I'm not sure if coming off of the tamoxifen (only about 6mos) had anything to do with it or not.  My oncologist wasn't sure and so she put me back on it.  I can honestly say that for whatever reason the SE this time aren't near as bad.  I do have bone pain/aches but not sure if from the tamoxifen or from my mets.  I did take off of work and so not sure if that is why I am not so fatigued and cranky anymore like I was.  I have lost weight and actually been maintaining it even with my Lupron injections and so that is different.  I don't know what to tell you...either it isn't working altogether or perhaps who knows. 

As for medicine to alleviate the side effects...I understand a lot of women take Effexor.  My oncologists keep trying to push me to try it at low doses but I'm scared because I've heard that the SE from it can be worse.  I take gabapentin at night to help me sleep along with Advil PM and tramadol...the gabapentin does also help with hot flashes...although not as effective as the Effexor.

I hope this helps a bit.  Send me a message if you'd like more details.  Good luck to you on your journey!!

Cat

I was on it for four months pre-surgery, then they said to stop for operation because of the clotting risk. Until I stopped I hadnt realised how horrible it had been making me feel. I felt like my brain was covered in fluff (haha worse than usual!) couldnt do simple tasks, kept forgetting stupid things, felt low all the time. Goodness knows how I worked through those four months. Mind you I had just been told I have cancer, how do you sort out how much is due to the tablets. But believe me within 24 hours the last tablet, I was a new woman, back to my real self again.

It's not imagination. Hormones are powerful chemicals and they affect every bit of your body, brain included. And it's not just you.

And Louey I'm so sorry, a guy that walks out just when you need him....Keep up with the exercise, one day you will have courage to feel attractive again, and when you exercise, your body makes its own natural feel-good chemicals that do you a power of good with no side effects.

Now I've had my op, I really dont want to go back on them.... but my onc does

Hi again:

For those of you on this thread, it seems pretty inactive.  The Battle'o Tamoxifen seems much more active and helpful. 

Hi Girl, you may find more help with tamoxifen if you search for the 'bottle o' tamoxifen' thread. They are a lively group and have many tips on getting through treatment with tamox.

Hi Everyone:

I am going to start taking Tamoxifen in a week.  Reading all this information I am a little scare. Those side effects are scaring me right now.  I have a partial hystorectomy when I was 30 but I still have my ovaries.  I would not going to have any problem with bleeding but I am afraid of the Hot flashes. can someone tell me if they gain weight with this. Because I have a lapband on for almost 2 years to loose weight and its been hard for me to loose the 50 pounds I dont want to imagine me with gain weight at this time. I also have arthritis on my knee so what else I can expect from this pill.  Just call my oncologist to see when I can start the pill I finished my radiation treatment on October 20.

I was glad to finish my radiation because I have a large breast my skin was peeling, cracking, burning,  Its been a week that I finished my treatment and I still feel my breast hot and also those tatoo are driving me crazy sometimes I feel pain on the one in the middle of my chest. Well its a woman think like the men saids.  I am going to feel sorry for my grandkids is I develop all the side effects from the tamoxifen.  My daughter told me I am menopouse all the time and she will leave me alone.  Concern on loosing my hair none.  My hair is thick and long I just cut it in case but I dont thing so. My concern is gain weight I dont want to after all the hard work I did to be the way I am now. Are they any remedies for that.

I am so grateful to read your posts on this. I have been on Tamo twice and both times I have felt like I was going crazy. I was on Tamoxifen for about a year, I think, and then my onc changed me to Arimidex. I noticed immediately that I was not as depressed as I had been. I've been treated for depression in the past and I recognized that this was not clinical depression but effects of chemo and then Herceptin and then Tamoxifen. As soon as I changed to Arimidex, the depression lifted. I also experienced mood swings and emotional instability on Tamoxifen. these symptoms also stopped when I was switched to Arimidex. Now I've been back on Tamoxifen for a month (because of concerns that Arimidex might turn my ovaries back on and start them producing estrogen again) and I felt the depression and emotional instability within a few days of starting back on Tamoxifen. My onc doesn't acknowlege any side effects and I feel like I'm going crazy trying to get someone to listen to me about these emotional side effects. Help!

4lumps,

Yes, I have had complex cysts on both ovaries monitored over the last 3 years.  They have all been benign as they have usually resolved after a few cycles, although with each ultrasound a new complex cysts shows up and I need to follow up again.  So, instead of annual or every 6 month ultrasounds, I've been trending to every 3 months.  My latest is that the one on my right has grown (vs. resolved) and new one on left ovary.  This is the first time I've had them on both at the same time.  I will have next US in mid-September.  Last two ultrasounds showed cystic structures in the endometrium, so I had that biopsied on Tuesday.  No results yet.

Best of luck to you.

Barbie

I had surgery July 18th this year for idc bi-lateral.  I lost my mother and brother to cancer and after the inital shock the day before my 50th birthday I took how they were and used a sense of humor to get here.  I found out you really need a sense of humor to deal with this.  I saw my onc last week and I was lucky I fell under the mark for chemo.  The tamoxifen I wonder if it willl kill me before my cancer might return which they have told me would be terminal.  The pills have been sitting on my desk for 5 days now and I'm not sure I want to take them.  Any advise?

Coraleliz 

 Considering all you are dealing with I'm glad I'm on the schedule to have a hest.  My onc emailed my OBGYN that they need to do complete hest including my ovaries.  Sometime mid October.  Just what I need more time off work.  I guess I should feel very lucky and I was until I saw all the side effects of the tamoxifen.   I think the drug scares me more than the cancer.

Have a great nite.

Pegs, not to alarm you, but if it's a serious question of shortness of breath, it may be worth calling your doctor (isn't that a symptom of a clot in the lungs?). Maybe a quick call to double-check the symptoms? Better safe than sorry? FWIW, I feel like my lung capacity isn't terrific, but I'm having problems with insomnia and I never resumed my full cardio workout after my Dx 6 months ago (I'm walking daily but need to get back on the bike).

Pegs, glad you're having that all checked out. I'm sending you good vibes that it's all good news.

pegs, I don't know about those nodules but great news about not having a blood clot and the healthy ticker. Hurrah!

I have been on Tamoxifen for 6 weeks and am stopping for 3.  My days have been half functioning with fatigue and needing to rest every afternoon.  I don't want to live this half life and am looking for alternatives.  How did you do after this post and where are you now??  If I knew the fatigue would dissipate I would keep taking it, but from reading this site, it sounds like the effects get worse.  I do not want to end up on drugs. I am interested, Ruth

first, for the gals reading this who have not tried tamoxifen yet, please remember 60 - 70 percent of the women who take tamoxifen have no side effects at all. So if it's prescribed for you please try it, you can always stop taking it. 

I too was concerned about tamoxifen, but really wanted the protection and committed myself to taking it and getting over any side effects I might have.

My side effects included, Bone pain, joint pain, headache, hoarse voice - I can no longer sing, metal taste, eye sight deteriorated, extreme mental confusion, clumbsy - walking into door frames, depression - with suicidal thoughts but I was too stupid from tamoxifen to actually carry it out.

To continue, easy bruising, muscle weakness, sleeping 12 hours or more a day, difficulty balancing on a bike - to the point I had to quit riding, hot flashes, red pin point rash, cough, swollen and painfull abdomen, shallow breathing - couldn't catch my breath, and finally I started passing dark urine.

I woke up over night with the breathing trouble and had to sit up, I couldn't lay down. About daylight I started passing dark urine and knew I would never take tamoxifen again.

I stopped taking tamoxifen after 61 days. Some symptoms eased up immediatly. Others are still with me. My oncologist got a little white when I told her all the side effects I was having and just how bad it had gotten. She didn't argue when I said I wasn't going to try any other hormone treatment.

I took tamoxifen in order to live longer, and the stupid drug made me want to die. Kind of silly when you think about it.

I have changed my diet, I try to exercise daily. and I enjoy my life. but no more hormone treatments for me.