Hi Ladies, i was diagnosed June 2017 HR2 negative breast cancer in each breast, treatment has consisted of 2 rounds of lumpectomy and and now just on tamoxifen while I wait for my bilateral mastectomy and reconstruction.Lately, i have found that i am getting quite frustrated at myself and am unsure if i am just losing the plot. Everytime i feel something off with my body i assume its caused by the tamoxifen and straight away jump on google to confirm my suspicions.In addition to the standard hot flushes i have been getting terrible tiredness. No matter how much sleep i get i am just so tired. its difficult to get through a day at work. By mid afternoon i am exhausted. I normally get a second wind but by the time 9pm comes around i am done. i also find that i have become quite absent minded and forgetful which adds to the frustration. i misplace things, forget what i am doing halfway into the task. other times i sit there and stare into space because i don't know what i'm doing. When i spoke to my partner about it, he seems to think that i'm just looking too much into it and kind of just brushed me off. Am i really just a hypochondriac?

Hi @Annirama it could be the Tamoxifen, there is certainly enough evidence to say that. It could also be a combination of the drug and the stress of being in the situation you are in. There is nothing restful about breast cancer, and there is certainly nothing comforting about looking down the barrel of a double mastectomy. This is the stuff of nightmares and no-one can be expected to operate as normal while they are in the middle of it. Any surgery is very hard on your body and can take months to recover from--it's not just about the scar healing. Worry is exhausting. Looking well and 'coping' is all very admirable, but there are very few who get through the whole shit fight without feeling like you do now. Partners who have no bloody idea are also very common, you can't really hold it against them just because they are clueless. Much.Be kind to yourself. There are no endurance prizes and we all do the best we can.

Hi @Annirama, I am currently on Tamoxifen and found myself like you going to get something only to forget what it was. I talked to my oncologist about it and she recommended brain training. I have downloaded a mobile phone app called Elevate. It takes less than 5 minutes per day and is very engaging and easy to do and most importantly I can remember things again. Soooooo much better. As for tiredness I was tired because I was getting interrupted sleep due to hot flushes, aches and pains etc. This has lessened and I now take panadol osteo and use cushions for the aches and pains and do get some beautiful sleep. I also find when I do exercise that it helps me. Wishing you all the and hoping you can get your symptoms under some control. Xx Cath

Most of my side effects are Tamoxifen however some is depression and anxiety and my body will not tolerate their medication so I just have to do my own meditation and self awareness exercises to cope. I also have lymphedema which has its own side effects too including a mild fever sometimes. Tamoxifen is jolly challenging but not as bad as getting the cancer back so I put up with it all.

Hi @Annirama. I'm not on Tamoxifen so can't help specifically with that. Do a search of tamoxifen side effects here in the forum, and lots of discussions will show up, with many useful suggestions. What you are describing, I've seen many times, & is real!! The recurrent suggestions that come up as helpful are regular exercise for the fatigue and brain training exercises for the fog.Take care

I too am not on Tamoxifen (I am still on Femara) but haven't had these side effects - but there have been plenty of posts on this site from people who have had both fatigue and forgetfulness. Do be wary of Dr Google, the difference between treatments/side effects and individuals are really significant and many unmediated or independent sites may simply have misleading information that can increase your anxiety.Many people have reported that exercise helps - I know it sounds counter intuitive when you are exhausted, but it's worth a shot. Star just walking when you can, maybe at lunchtime if you are working. Others who have experienced these symptoms may be able to give more advice. Don't underestimate a certain amount of reaction to diagnosis and treatment - the body can create a lot of adrenalin to get you through surgery and then there may be a physical and mental slump for a while. Partners usually do their very best - but sometimes that's about saying what they want to be true rather than what is (which of course they don't know any better than you do). Can be frustrating, but not his fault! Talk to your medical team, ask for advice on anything that will help. I found oncology nurses (or McGrath nurses) hugely helpful in such matters. Best wishes.

Tamoxifen side effects or just going crazy

Brenda5
Member
8 years ago
My murderous moods have only occurred couple of times and they only last a day. There is no underlying reason for them except Tamoxifen. It is an inner rage that wants to take over and I feel could quite easily kill someone and kick dirt over them and not even care. It is very alarming. I don't move on those days and I warn the family don't interact with me. Somehow they just know somethings not right. Funny thing is the next day I am back to my old self.
Annirama
Member
8 years ago
Thank you for the advice ladies. Really appreciate it. Looks like illI'have to do some more reading and schedule a visit to the gp before anything. In the meantimem daily walks and elevate serms like a good start. I wish it was all over already.

@Tennille what a horrible experience i cant even start to imagine what that would be like. So glad it worked out for you
Sister
Member
8 years ago
@Tennille WTF How absolutely frightening for you. Glad you were able to sort it!
Romla
Member
8 years ago
Whilst I am not on Tamoxifen I can relate as many of your symptoms I have experienced on Letrozole which is one of the Aromatase Inhibitors. That said many of the symptoms can also be interrelated - hot flushes effect sleep patterns causing fatigue and with it memory lapses due to exhaustion. It’s only normal I think to be very focussed on our diagnosis and treatment - it not only takes up a lot of our time and energy but also we worry about recurrence and I for one get quite skittish at times when something new happens to my body as my sense of security has been challenged by breast cancer..Talking on the blog to others as well as your medical team may be more useful than Dr Google as we can spook ourselves and cause undue anxiety - I have done the latter a few times over the past year. If you can I highly recommend a daily walk - it not only clears the head but releases feel good endorphins and oddly enough I’ve found can be addictive but it is important not to let things interrupt / get in the way of this commitment to your own well being - I failed over Christmas in this but realise the mistake I made as side effects surfaced quickly. Almost forgot joint pains I’ve found can be walked through.
Zoffiel
Member
8 years ago
Holy crap, @Tennille !

I can be ''problematic" but, thankfully, my current issues with meds tend to be more related to pain than psychosis. Glad it all worked out, but what a shit turn of events. Mxx
Tennille
Member
8 years ago
When I started Tamoxifen it sent me so nuts I refused to go near my infant son for fear of hurting him. I also made my oldest daughter hide the knives and prescription meds. It was the worst feeling I had ever experienced. My GP put me on 75mg of Effexor and everything settled down and I felt heaps better. Stayed on Tamoxifen for 5 years.
Brenda5
Member
8 years ago
Most of my side effects are Tamoxifen however some is depression and anxiety and my body will not tolerate their medication so I just have to do my own meditation and self awareness exercises to cope. I also have lymphedema which has its own side effects too including a mild fever sometimes. Tamoxifen is jolly challenging but not as bad as getting the cancer back so I put up with it all.
socoda
Member
8 years ago
Hi @Annirama, I am currently on Tamoxifen and found myself like you going to get something only to forget what it was. I talked to my oncologist about it and she recommended brain training. I have downloaded a mobile phone app called Elevate. It takes less than 5 minutes per day and is very engaging and easy to do and most importantly I can remember things again. Soooooo much better. As for tiredness I was tired because I was getting interrupted sleep due to hot flushes, aches and pains etc. This has lessened and I now take panadol osteo and use cushions for the aches and pains and do get some beautiful sleep. I also find when I do exercise that it helps me. Wishing you all the and hoping you can get your symptoms under some control. Xx Cath
primek
Member
8 years ago
Whilst tamoxifen could be causing issues, stress can cause those symptoms also so maybe look at all aspects of your life.

This article shows how stress can impact on your mind and body. And lets face it....everyone who gets a breast cancer diagnosis is stressed. Whether they recognise it or not.

https://www.webmd.com/balance/stress-management/stress-symptoms-effects_of-stress-on-the-body

So looking at relaxation techniques and ways to reduce stress just might help. It is good for us anyway.

https://www.helpguide.org/articles/stress/relaxation-techniques-for-stress-relief.htm

This link has some basic ideas that can help.

If continues chat with your GP and oncologist. Talking with a mental health clinician can help reduce worry and stress and even if it's medication related you might cope better anyway.

X
TonyaM
Member
8 years ago
Hi Annirama, I took Tamoxifen for 4 yrs and in the beginning I had hot flushes, trouble sleeping,tiredness, low mood and irritability.I ended up being prescribed Endep 10mg and it really helped.It’s a very low dose antidepressant and I didn’t have any side effects.However,I would suggest you see your GP and have a blood test/ checkup as the tiredness could be from a number of issues eg.low iron levels.