Fatigue- Tamoxifen?
I have pretty decent energy until around 3 every afternoon. Meaningful interactions with people after 7 pm seems impossible. I'm skipping social activities scheduled in the evening because of it. Copious amounts of strong coffee helps some, but then I wake up all night. To me, checking out of humanity at 6 is better than insomnia.
My husband suggested the time change is still effecting me, but I wonder if it's the Tamoxifen, or irrationally, some hidden cancer somewhere. Am I supposed to report this fatigue to my MO (I have a follow up in Jan)? I am exercising and eating healthfully. Is there anything else I can do to lessen the fatigue?
Edited to add, I am in general less energetic now, but it isn’t as much of a problem as the late afternoon and evening fatigue.
Comments
-
This is so reassuring to me! I wasn’t sure it was a side effect because I take it at night, so thought I should be more tired in the morning than afternoons. Your comment about never napping is the same for me. I would like to have been able to sleep during the day in the last 20 years, but that only happened when I had the flu, lol! I was looking at a career that would require me to be “on” in the afternoons and evenings, but I second guessed my ability to perform based on how I feel now. It feels kind of wrong to say med side effects play a part in career decisions, especially since I was just stage 1. I will definitely contact my MO about trying some different tactics. Thank you
0 -
Waves2Stars,
I took my tamoxifen with dinner, ate predominantly plant-based meals, exercised daily and I was exhausted for five years. Worse was the inability to feel joy. I've already been off for four weeks. Time flies! I noticed a big difference rapidly, but then had surgery for a different cancer followed by a colonoscopy, so just recovering now. Cognitively, though, it is a huge relief!
All this to say that it could definitely be the tamoxifen.
Hope you find a solution.
Pi-Xi
0 -
Waves2Stars you exactly describing my existence. I typically have to have a nap (15 min to an hour) daily and I am ready for bed at 6:30 pm. It is all I can do to push to 7 pm Coffee doesn't break the fatigue enough. What does help I find is a single 4-6 hr strength sudafed. I have a lot of allergies anyway but this can keep me somewhat productive on limited days where i really need it. I just recently did a two week "vacation" over Thanksgiving and by the end of the 2nd week I had two full days of my old self and it was wonderful. The restart hasn't been so great but I have noticed carefully how I am reacting. I could literally feel the depressive "fog" laying in after about 3 days restarting the meds. Truly powerful effect on me personally. I am going to speak with my MO about Fareston (thanks, Salamandra) I need to make a change because I want to complete my five years somehow. Thank you Waves for so eloquently stating your experience.
0 -
Rah, after my recent break from Tamoxifen, I started back on at 20 mg every other day (wanted to use up the supply I had) with my prescriber's blessing. I think she realized I was seriously considering stopping altogether as this was my second break in 3 years. It has been a month, I am noticing some side effects but at a much more tolerable level(at least so far). Now have hope I can make it to 5 years!
0 -
.
0 -
ok I thought I was crazy until I found this thread!! I have been on tamoxifen for 2 months. And I feel like I need a nap every day. Ugh. Would it be better to take it in the evening? The. Maybe I could sleep at night and sleep it off so to speak.
Any advice???
0 -
I’ve been onTamoxifen almost 3 years and it keeps me from sleeping well. Never had that problem before. That’s why I need a nap on most days. It doesn’t seem to matter when I take it it keeps me awake.
You could try taking it at a different time and see what happens. It’s very hard to be tired all the time
0 -
Hi Loverofjesus,
I had that same side effect from tamoxifen. I needed about 12-15 hours of sleep per day, and I couldn't fit my life around it.
I tried taking it at night, lower doses, counteracting stimulants, and a lot of different generics, but in the end that side effect persisted. I'm not sorry I tried those things but I'm really glad that I ended up on toremifene, which is another SERM (same class of drugs as tamoxifen). It's not FDA approved in the USA for prevention of recurrence for premenopausal women (it's used for advance cancer) but it's used for that purpose in many other countries and there's at least as much evidence supporting that use as there is supporting any AI drug in premenopausal women (I did a lot of research, and then my doc did her own research, and then we both hoped that insurance would cover it for me, and then it did).
So... there's stuff you could try and it might work better for you than for me (dose at night, split into 10mg morning and 10mg night, go down to 10mg per day, try different generic brands in case it's an issue with the inactive ingredients, etc). But also know there's a whole other SERM that hopefully your oncologist will support you with.
0 -
I am tired all the time ... Nobody understands it .. Have been on Tamox for almost 3 years now and since there was another growth they may want to increase the 5 years to more years on this medication . I am currently battling horrible anxiety and panic attacks . So bad it was affecting me at work . They started me on Zoloft which is working for now .. I am also on muscle relaxers because of the pains in my legs went to three different doctors for relief and nothing was wrong its from the Tamox . Sleep sometimes is good but most of the time it is not . I thought I was crazy as well until I spoke to other Tamox users and many have the same symptoms . You are not alone !!
0 -
DVCmom3 yeah the fatigue can be killer on this drug. Couple things I do that are working for me - sounds counterintuitive but walking daily (about two miles) can stave off my fatigue enough that I can get some other things accomplished and try a combo of a magnesium cream for muscle aches and compression socks at night when you have a particularly bad leg night. Sometimes helps.
Have you discussed lowering your dose at all given your level of symptoms with it?
0 -
DVCmom3- I totally understand, I have had terrible fatigue on tamoxifen. I am currently on a break from taking it. I am going to try 6 weeks off and see how I feel. My mammaprint was low risk, but I am clinically high risk. My MO did say I could try 10 mg as she thought something was better than nothing. As rah mentioned magnesium lotion might help, it does make a difference for me with the leg cramps. I have literally thought about quitting this drug nearly every day since the SE’s have decreased my QOL. I am sorry you are struggling.
On a side note, my sister is a DVC member and I just got to tag along for a stay at Disney’s vero beach resort! Have you and your family stayed there??
0
