Tired on Tamoxifen

couldn't agree more. I have been on tamoxifen for just over 6 months and although I have had none of the usual side effects (hot flashes etc) I feel like I am permanently on go slow. Not just tired but also just not fully with it. My diet and exercise are good, I also meditate and do yoga but there is no doubt that the tamoxifen has cast a veil over me. I too have discussed coming off the drug with my oncologist but there really is no acceptable alternative and I am not open to taking the risk of increased chance of recorrunce. It would be great to hear any ideas on helping these symptoms. On a sideline I am definitely more short fused too which I think is s side effect of the tiredness

The extreme fatigue sounds like the fatigue I started experiencing around the time I was going through menopause. I was taking estrogen in the 18 months or so that it took for me to go through menopause, and during that time I was having really debilitating fatigue. I figured out eventually that the hormone changes I was going through somehow allowed the estrogen to start interfering with the uptake of thyroid hormone. After I was diagnosed with BC, just as I started to feel less tired, I stopped HRT and felt perfect again...physically. Mentally I was a wreck. It's well know that estrogen and thryoid hormone interfere with each other. Several of the women in my family are on Synthroid due to hypothyroidism and the ones who are using HRT are constantly trying to balance the two. Maybe tamoxifen is doing the same thing as the estrogen, which wouldn't be too surprising considering that it works by attaching to estrogen receptors. Check out the symptoms of hypothyroidism on line. I was also having leg cramps and leg muscle pain, as well as the other 7 or so symptoms. Maybe need to have thyroid checked?

some days (today being one) I just feel weak and like doing anything is an effort, and just overall 'blah'.

I figure it's probably either the Tamoxifen or the menopause.

I was super tired too. Switched to AI Femara and si many of my side effects are gone. Hang in there. The fatigue is real

louder,

I was on tamoxifen for 17 months before taking a four week break. Fatigue was probably the most disruptive side effect and it seemed cumulative. My bedtime was 8:30 pm. It lifted surprisingly quickly during the break. I've been back on for two weeks now and I'm afraid the fatigue is back, but I'm really hoping today is just a one-off.

I’ve been on Tamoxifen for two weeks and I am exhausted. I was blaming it on Rads but after reading this thread I’m thinking it may be the Tamoxifen.

GardenGypsy, Thank you for posting that tamoxifen is changing your professional life. I worked through the year of surgery (except right after surgeries) and chemo, and now I am so tired on Tamoxifen I cannot continue to work full-time, I tried Arimdex and Aromocin, but they also be caused unmanageable fatigue.

I put my head on my desk several times a day and find getting up at 6:00 am, something I did for years without a problem, is now a battle. When I was diagnosed, I really had no understanding of what the experience would be like, but I had not thought that fatigue would be the side effect that would end up forcing the most concrete life changes.

Reading these posts, I see others questioning taking tamoxifen long-term in hopes it will prevent a future occurrence when it affects quality of life now, I have not been able to have a good conversation with my oncologist about it, either. My guess is that it's an amorphous symptom that could, and often does, have many complexities. However, cancer is so life altering, and now the resulting fatigue itself is starting to change my identity. I could always push through something if I wanted it bad enough, but now, I have to concede that this strategy has its limits. I did start talking with a counselor who specializes in people diagnosed with cancer and cancer survivors, but I am also wondering how others are managing putting this all together.

I started Tamoxifen one month ago. I was fine for a week. The subsequent weeks have been horrible. I told my Dr today that I do not know "this person" (signaling to myself). The fatigue is terrible - I wake up tired. I can't do the things I love because I am exhausted. My face is puffy. I have strange pelvic pain (pressure?), I feel numb (not experiencing happiness, which is completely NOT M ). I feel sad all the time and frequently cry but I am not sure what I am crying about. I feel dehydrated and no matter what I do I am thirsty all the time. My eyes are dry, my throat is sore and my voice is hoarse. I am confused and spacey and not communicating well, and my bowels are not normal. The Dr thinks I could stop taking it for 3 weeks and see how I feel. She said some people just don't tolerate it well, and others have very few side effects. At some point quality of life has to be considered. I am sending good vibes to all my sisters who are struggling with similar issues.

Hi TS1, and welcome to Breastcancer.org!

We're so sorry you're managing this difficult side effect. You may be experiencing fatigue, which can be a side effect of a breast cancer diagnosis itself, as well as treatment. There's some great information on the main Breastcancer.org site's section on Managing Fatigue that may help!

Others will surely be by shortly to weigh in with their experiences. We hope you get answers soon!

--The Mods

According to my Fitbit, my sleep is actually quite reasonable, but I am drained nonetheless. I wake up with hot flashes a few times a night, especially around my period, but fall back asleep relatively quickly. I do take 10 mg of dual release melatonin to make that happen. I exercise pretty hard six days a week for 30-60 minutes and do something lighter on my rest day. I eat a diet high in vegetables low in meat. I think I'm doing all the right things including going to bed at 8:30. Work, workout, eat and sleep. It's hard to even get the house cleaned (perhaps that should be my light activity...). I took a four week break from the drug and I was able to stay up later, my head was much clearer and at one point I was feeling the normal old kind of tired from pushing myself. Such a different feeling! Just wanted to share that you are not alone.

I can’t say that I’ve had the same experience that you’ve had, bringityellow, but after 23 months on Tamoxifen, I was just granted a 6-week reprieve from it. My MO said that I wasn’t tolerating it well with SEs of fatigue, joint pain, hot flashes that were getting worse over time, not better. I don’t know what will happen after those 6 weeks are up. Back on tamoxifen or switch to something else or just take the increased risk of recurrence? It’s worth talking to your onc about a break, IMO

I've been taking tamoxifen for 5 years now, and no, the fatigue doesn't go away. I don't think there is anything that will help I've asked myself. 5 more years on this crap. Lol

Hello all, just want to chime in on my experience. I have been taking tamoxifen since January. I met with my oncologist after 4 weeks, and didn't have any major side effects, maybe the occasional hot flash that lasts a few minutes. He told me that it may get worse, and to watch for other SEs. Now, 6 months later, I feel hot flashes almost daily. Luckily, it only lasts a couple of minutes. I also feel really tired between 3-5pm each day. Since I work a desk job, I take my lunch around 2 pm and do errands or walk for 5-10 minutes, and then have coffee. Moving around helps me get through the last couple of hours of the day. I have increased my weekly exercise from almost non-existent to 3 hours a week for the last couple of months, but that hasn't helped reduce the daily fatigue. I am sleeping better, so that's a plus!