Tamoxifen is the Devil himslef

Hi, CSA - so sorry you're grappling with all these issues. I did not take Tamox. but rather AIs. However, your sleep issues and fatigue sound similar to what I have dealt with at times on an AI. The sleep issues set in when I'd been on Femara maybe 4 months and continued for quite a while. During the period after surgery & during RT I was so exhausted that I was able to sleep well, which was quite a relief. The fatigue set in later.

I think what helped me most was a good sit down discussion with my MO, who took me off of everything for three weeks (which was scary) then changed my AI at the end of the break. I also switched from celexa to wellbutrin. I know you probably can't do the same as far as changing from Tamox. but perhaps a break would help you get some rest and get back on your feet.

Bear in mind that cancer, surgery and chemo all cause fatigue on their own so you're dealing with many fatigue-creating issues here - it's probably not entirely the endocrine therapy even if it did show up after starting in on it. All of those treatments can have a cumulative effect.

You could also consider: upping your melatonin, seeing a good acupuncurist and or seeing a naturopath who specializes in working with cancer patients (I know - they're about as common as unicorns...). You might also see if your facility (or one nearby) has a survivorship nurse or nutritionist - they can come up with some good advice that's medically sound. I've also found yoga helpful, along with Pilates, a bit of meditation (I'm not very good at it!) and trying to get outdoors whenever possible to help.

It's kind of a long haul to find what works and it can seem as though you'll never find the right approach. Do hang in there and experiment and eventually you should feel much more yourself. But start with your MO and insist on a thoughtful, useful discussion. Good luck.

CSA,

I’m really sorry you have to be here and you are suffering. I have very often wondered what a male’s perspective is of Tamoxifen. Sounds like you are in the same boat many of us are. Then there are many lucky people who have little to no side effects. Good for them!

Since you do, let’s talk about that. I think you are on the right track of switching to the a.m. instead of p.m., that works for some people. Some people have even found splitting their dose to twice a day helps. Some have speculated about why is it 20 mg for all. Seems like if we told our doc no that they would be open to lowering doses or every other day.

My experience, I went in with a completely open mind. I didn’t read on here any negative threads because I did not want to be influenced.

I was premenopausal before cancer so already getting some hot flashes and had some brain fog from “chemopause.” I do agree that all of this can be cumulative. I told my doc that I felt like menopause (chemical or otherwise) made my IQ drop. He agreed there is something to that. People not treated for cancer experience it too - the brain fog.

My first few months were smooth sailing. I did and still do take something for sleep. The hot flashes for me were every five minutes all day every day. I mean drenched in sweat hot flashes. I put up with it. Started getting joint pain in hands and knees and severe leg cramps. I put up with it. The “aggression” I felt was the Tamoxifen (know because it disappeared when I quit). Do you think you feelings of anxiety may be that really angry hormone feel vs. a panic type anxiety? I started taking Effexor for the hot flashes. At first...pure heaven. It helped a lot but I think it made me more assertive and anxious. Eventually my body got used to it and the hot flashes started breaking through again. Sigh.

I did end up with a blood clot, so I quit on doctors instructions. I made it 2.5 years. I had already decided I was only doing 5 years and not 10. For me, I’m done. Not trying anything else. That said, I still have some brain fog from menopause/chemopause, still have some hot flashes but not nearly as bad. They were subsiding on their own, I think. Little bit of joint pain. Still get really pissed off but I think it is more about what I have gone through. I can’t blame all of that on Tamoxifen.

All that to say I do think it is hard for doctors to really nail down is it chemo, is it hormones, is it PTSD, is it targeted hormone therapy? Unfortunately it could be all. You are not crazy. I would see the psychiatrist and get something for sleep. I would take a drug holiday and get it out of my system so you can see the way you really feel. If there is some PTSD there, sort that out. Then I would gently and slowly try it again in maybe a tapering dose and build up.

If you still feel some of this crap without it, why not take it to cover yourself and figure out how or if you can take care of some of it with exercise, etc. Does that make any sense?

I am not a doctor and all of this is just an opinion. You know what they say about opions. 😀

I may even be open to trying something new in the future. Chemo damaged my heart and I am dealing with that. Seems like all of the AIs have some heart risk.

My friend was just diagnosed with stage IV prostate cancer. They are putting him on Lupron and another hormone targeted therapy I have never heard of. I will look it up and PM you. Maybe an option for males.

If I had a fix for fatigue, I would be rich! If you find something that helps, do share. I actually like low-dose steroids for that reason. Love the energy! Wish they were safe to take.

Vent away. I’m sorry I can not help more.

CSA-I agree 100% that it’s the devil. It nearly killed me with bilateral pulmonary emboli. Let’s see what we can come up with to help you...

Tamoxifen Issues: Have you discussed switching from tamoxifen to an AI like Femara? You should be able to go back on your old anxiety/depression med regimen if you do.

Sleep issues: sometimes the anti-depressant can actually be the one causing the insomnia. You can try taking it 12 hours later than you do know and see if that helps if you have to stay on tamoxifen and can’t go back to the anxiety/depression you used to be on.

Sleep Issues 2: have you tried a sleep med like ambien or belsomra? You may want to try one of these Especially if you stay on tamoxifen and changing the timing of taking the Effexor doesn’t help.

Sleep Issues 3: are you having hot flashes at night that are waking you up as you’re too hot? Then the anxiety takes over? That’s my biggest problem. Other than sleeping in as little clothing as possible and running the ceiling fan all night I don’t ave any advice that I’ve tried. brisdelle/Paxil/Zoloft are supposed to help with hot flashes though. And a doctor friend swears by golden milk and gave me the recipe from the epicurious website...I’m trying it tonight. She said it helped with the flashes and I’d get a good night’s sleep. We will soon see

Sleep Apnea: Since you mentioned the sleep apnea, there are some devices you can buy online that don't constantly blow air up your nose that may help. You could start with just breathe right strips and then escalate with other devices if needed.

Anxiety/Depression Meds: If needed, a little Zoloft can be added to most regimens to help handle that extra little bit of anxiety that a standard single drug regimen isn’t handling.

Fatigue: May get better with some of the suggestions above as it could just be not getting enough sleep. If you can manage to get say a few days to a week of sleeping all night you may find the fatigue goes away or may get better (not perfect but better). Then you’ll know if it’s the tamoxifen or the poor sleep you’ve been getting. The fatigue was rough for me but not debilitating. I’ll also throw out there that sometimes the anxiety/depression meds can cause fatigue too-I literally couldn’t keep my eyes open when they tried me on cymbalta about 10 years ago.

Being on so many meds as many of us are can make it difficult to pinpoint what med is causing which symptom. If it were me, I’d push to change to femara instead of tamoxifen so I could go back on my previous anxiety/depression meds that I know worked and then see which overall symptoms resolve. Then you could work on it from there.

I can’t tell you how happy & relieved I was being able to go back on my pre-BC anxiety/depression meds when I stopped tamoxifen. Just knowing I could go back on them helped lower some of anxiety. I wish I could tell you if I have any fatigue or sleep issues on femara but i just started it last night (i had to wait to start until after I had my hysterectomy & oophorectomy.) So far so good. I hope this helps and that you find some relief.🙂

Revisit going back on the Zoloft. There was an update last year in the Boston Medical Journal, about the efficacy of certain SSRI's and Tamoxifen. If you do go back on Zoloft, ask for a boost with 10mgs Amitryptline 2x per day, .25 xanax for sleep.

CSA: There are 'time-release' versions of Melatonin. Those may help you sleep through the night. I usually take 3mg or 5mg 'time release' Melatonin. I also noticed that certain brands work better for me. My preferred brand is Natrol.

Good luck!

ETA: Sometimes I take a regular and 'time release' melatonin when I want to fall asleep fast and stay asleep longer.

I am so, so sorry that you are dealing with this. I could hardly sleep on Tamoxifen but it may be the Lexapro that is exacerbating your tiredness. I suffer from insomnia and anxiety and have tried a number of different anti depressants over the years. Effexor was the worst!! Currently I have been on escitalopram (lexapro) for 6 months. It is currently the only medication (no Tamoxifen or AI now) and I now have little motivation and constant fatigue.to the extent that even cleaning my teeth is an effort. Have also experienced some hair loss which I was thinking could be related. I am going to ask the doctor about getting a genetic test for antidepressants. There is apparently one available now that may indicate which may be more effective and have less side effects. The tamoxifen contraindication would also be a consideration for you. It is a pity about the Xanax. The only thing that really helps me and has zero side effects is lorazepam (Ativan). My doctor has prescribed them long term but only on condition that I ration them (30 .5mg) lasts me 2 to 3 months. I use them for breakthrough anxiety and some nights for sleep.I understand how horrible it is to wake up and have that feeling of anxiety descend which is why I have continued with the escitalopram that has helped maybe 50%. Maybe you could get the Xanax just on an as needed basis to at least get a sleep some nights or if the anxiety is too bad although insurance may not cover it above a certain amount..

The other thing I do which is totally off the wall but actually helps me is put headphones and an eyemask on when I want to try to go to sleep, do some deep breathing, and listen to ASMR head massage or softly spoken relaxation videos on Youtube. They are amateurs and some are better than others but I sometimes nod off while they are playing or feel able to sleep at the end. - just a thought but worth a try. Some people are sensitive to ASMR and can experience pleasant tingling sensations in the scalp. For others they are just relaxing. I know it sounds odd but whatever helps

Sorry I cannot be more helpful but you are not alone.

CSA, I deal with the anxiety in a combination of ways, and by doing all those things together my anxiety does improve. I still always struggle with it, but it is more manageable. First there are the "healthy lifestyle" remedies. I am sure that you have also tried many, if not all of those: I try to eat healthily, sleep enough, keep stressful and unhelpful people out of my life. Exercise is the most helpful part of this for me. I like exercising outdoors because that calms me down more than being in a gym. I have a very clingy dog who is my unofficial emotional support animal. These were all things I did before cancer, and people who knew me would comment on my healthy lifestyle. It wasn't that I was trying to be healthy - it's that most everything I did in my life was to try to alleviate crushing anxiety. Most people never understood that about me. That is one other reason cancer has been hard - some of the exercise coping mechanisms I had aren't possible during cancer treatment.

There is scientific evidence to support 20-30 minutes of relaxation training twice per day. The health psychologist at my MO office sent me home with a CD for this. It's hard to sit still at first, but after you do it regularly for a number of weeks, it rewires your brain to create new, non-anxious neural pathways. If I can find the studies on that I will post them. Think of it as a path in the woods - the more you walk down it, the more ingrained it becomes. I don't know if you are religious or spiritual at all, but I used a prayer rule from the religious tradition I was raised with instead of the relaxation CD from the health psychologist. It doesn't really matter what you use, as long as it works for you and helps to rewire your brain. Again, it takes time to start working, but it really does help.

All that is well and good, and it helps, but has it cured my anxiety? Not by a long shot. It helps, and makes life better from day to day, but sometimes I just need some lorazepam. That works. I am always anxious before chemo so I get lorazepam in my pre-chemo meds. I also had it before my mastectomy surgery. My MO sent me home with a bottle to use sparingly, and although haven't used it yet, I probably should have. The problem with lorazepam is that it can be addictive if taken regularly. However, I do know people who take it regularly, get addicted, and when it is time to quit they taper down under a doctors supervision. I don't want to be addicted to anything, but sometimes I think it might be the healthier option.

So in short, the healthy lifestyle helps but it's not a complete fix. The health psychologist helps, at least to make me realize flaws in my own thinking and keep those anxious thoughts in check. The relaxation training or prayer rule helps. Medication helps, but I think I'd need to get a psychiatrist to do anything more than I do now. For now I just try to hang in there with my emergency lorazepam, and a high maintenance stress reduction lifestyle that yields somewhat helpful results. :-)

I do think it's important to reach out for help before you get too worn down though. Be honest with yourself about how close you are to being overwhelmed. I keep a close eye on myself too, and I know that if I start getting too worn down, I will need more help from medications. I know that's probably not the most helpful answer, but it's what I do. I hope you find what works for you.

I have read that some body builders use arimidex I assume many of them are men. Was there a reason your MO did not provide that as an option? It has its own can of worms but you could talk with your MO. Also many other medications do not conflict with the AI's like they do with tamoxifen.