Tamoxifen, emotions and side effects. Advice please

Hi Samantha,

Could you be grinding your teeth in your sleep as that would make your jaw ache.  Stress can cause all sorts of other issues too. When I was first diagnosed I was so tired I just wanted to lie in bed.  After my pathology did one node was affected I was so stressed waiting for my CT and bone scans that I developed pains in my chest and back and was convinced it had spread (my scans were clear!).

In the  beginning w6 all think that we'll be dead in a few months,  but the truth is that only about 5% are diagnosed initially as stage 4, and those who are will most likely live for many years with treatment!

I don't take tamoxifen so can't say the side effects, which are different for different people,  but you could look them up.  When do you get your pathology results,  and any idea how long until you can get some counselling? 

Margaret x

My nodes are clear thankfully. I'm on meds and awaiting radiotherapy. 

I hope you are doing OK Margaret, thank you for that positive response. 

I've asked today but due to covid things are difficult. 

Xx

Don’t forget that if you still feel incredibly worried tomorrow you can phone the helpline, 0808 808 0000 and they will listen and reassure plus give you ideas to help.

Hugs xxx

Hi Sam - nice to "meet" you but I wish it had been under different circumstances. 

I take Tamoxifen - I took it for three years (that was 15 years ago) and I've now been taking it again for a year. My side effects are hot flushes and calf cramps. These have improved over time. Along with that, I do get weepy episodes that are similar, I suppose, to an intensified PMT but they don't last long. It's messing around with oestrogen levels so I just tell myself - "this weepiness is a sign it's WORKING! That's good, Pass the chocolate."  Sounds daft  but it helps me cope with it and see a bright side in it.

I also get brain fog but still have a bit of leftover chemobrain so it's hard to tell what is causing the brain fog! I have developed the habit of writing lists. Of course, I then lose the list, but at least I remember that there was a list and so there is SOMETHING I should be doing.....

This is a stressful time for you but it WILL get better. I think Londonmumof2 hit on something when she asked if you could be grinding your teeth in your sleep. You could also look at your sleeping and sitting posture. Are you tense around the neck and shoulders? This can't half cause headaches and jaw aches.

You could also try varying the time you take your Tamoxifen - some people have found they cope better if they take it at a different time of day. I find I cope with mine better if I take it first thing - the niggles of it just seem to get lost in the day, then, instead of hitting me at night.

Other ladies have also sworn by asking their pharmacist for a different brand of Tamoxifen but I haven't tried this. 

Keep posting here - this helps a lot, too. Just knowing you're not alone makes it easier, I find. 

Thank you so much for your lovely, positive advice 

It's tough and I am a mess, not gonna lie, probably still grief about losing my mum too. It's all a bit much xxx

Wish you well and hope you are OK xxxx

Hi Sam I hope you are feeling better due to have my rt in 2 weeks have not started my Tamoxifen yet not sure whether to get over rt first or just go for double whammy

Hi Samantha

Firstly I’m so sorry to hear about the loss of your mum xx 

like you I started tamoxifen about two weeks ago I’ve had quite a lot of headaches and anxiety but mine might be because I had to change my antidepressant too as it wasn’t compatible with tamoxifen.

I start my radiotherapy tomorrow take care from Claire x

I’ve gone triple whammy lol as changed antidepressant started tamoxifen and radiotherapy within a few weeks xx just taking it day to day xx we got this 

Hi Samantha, 

I am so sorry for your loss and that you have to go through all this. My mum passed away from breast cancer when I was 12 and I know what it means. My breast cancer was diagnosed last year but I had op first (March), then chemo (May-August), then radiotherapy (October) and am taking Tamoxifen since September. How are you feeling now as your post is from 6 months ago?

My main side-effects are hot flushes & freezing and insomnia but I am not very good at remembering to take it so that might make it worse. Insomnia is better when I take it earlier. I also feel a lot of anxiety lately but am not sure what causes it. I used to grind my teeth so the headaches and chaw pains could come from that. Also feeling dizzy and brain fog. You might be able to get a mouth guard via your dentist for that but I am not sure how much they can do right now because of COVID. I did try out something called "binaural" tones on YouTube for Bruxism. That is the medical term for grinding your teeth. I put this video from YouTube on at night https://youtu.be/8PD3KDX1i68 with my mobile and my headphones on but left it running rather quietly. It's not a particularly nice sound to hear but I was desperate. It did help me but with all "alternative" methods its a question if you believe in it and everybody reacts to it differently. 

I hope counselling helped and you could find a solution. Take good care.

hi

I was on tamixifen for over 10 yrs.  recall some inital but mild side effects, but they soon went. There is so much going on when yustart Tamoxifen it is sometimes hard to know if it is the tablets or your body reaction to otherthings. I used to take it in the mornings and that got over potential night and sleep problems.

Hope all is going well for you