Tamoxifen. Is anyone else struggling?

[MarmosetsInSpace]

Yes, I get it. Tamoxifen is great at preventing the breast cancer from coming back, and I'm grateful for that so I take it every single morning. But does anyone else really struggle with this drug? Ever since I started it, I've felt knackered. I can't fully regain my fitness. My brain is shot to pieces. Perimenopause is part of the picture too, but bloody hell I hate Tamoxifen. I'm in danger of getting booted out of work because I'm just not very good at functioning right now. Anyone?

Hi OP, I suffered when on Tamoxifen. I joined a couple of facebook groups and they were full of people in the same boat - lots of tips for survival. I found it helped to take it last thing at night rather than morningso do try that. I also said to myself that if I had to I could stop for a month or so to get a break. I never did that but the idea of it kept me going. I did reduce dose for around 6 weeks when I was three years in - just snapped the tablet in half. Some people swear by supplements like tart cherry, cod liver oil or magnesium. I took electrolytes for a bit to help with muscle cramping - I am sure it helped a lot! I finished my 5 year course 6 months ago and I’m running again - I gave up on that because I just…couldn’t when I was on Tamoxifen, everything was too much. You will get there…keep on keeping on if you can and check out some options on those forums.

I was ok with it, but like @registai took it in the evening. I think it takes some time to settle down and also your body has probably already been through an awful lot and is processing that as well. Hopefully your work will be understanding, cancer is recognised as a disability I think so you can ask for some adjustments to your work maybe?
Something else that was mentioned to me was that not all tablets are the same, ie they can be coated in different ingredients which can be easier for you to tolerate so it may be good to speak to your pharmacist and see if you can swop the make?

Yes I struggled for the whole 5 years I was on it, although the first 2 years were the hardest. Nausea, brain fog, muscle pain, insomnia and low mood. But I did get used to it and found ways to manage the side effects. As others have said taking it a night suited me better. I hear you OP, we know we need it but it’s still tough.

My mum is on Letrazole and no side effects. Can you take a LOA for medical? At least get it doc'd your medical is significant so work can't reprimand you
Maybe someone with HR or legal exp can weigh in here?

I was on it for 10 years without issue. Letrazole on the other hand was a nightmare ( I was switched to Letrazole after starting on Tamoxifen and then had to switch back to Tamoxifen). Letrazole made my joints ache so much I could barely walk. I would ask if you can have an alternative if it’s causing so many issues.

I battled with it. I managed to survive 3 years on it but then came off it.

It's worth getting your oncogist to be completely straight with you about how effective Tamoxifen really is at preventing reoccurrence. I kept being told 'it reduces thd risk of reoccurrence by 50%' which seems huge, right?

Except, except......for me and many women it's actually only the difference between a 1% risk of a reoccurrence (if you don't take it) and a 0.5% risk of reoccurrence (if you do take it). So the much touted 50% is very misleading. My oncologist was very reluctant to admit this to me. Very. But he finally did.

Tamoxifen does a lot of damage to your body. It increases your risk of heart disease and strokes. For some women it does more harm than good.

When I was diagnosed, there was a long running thread in 'Health' called 'Tamoxifan'.
It became a much more general Cancer support thread and changed it's name.

Cancer Support Thread here.

I took letrozole for two years before I was switched to tamoxifen, and initially the side effects were almost unbearable. But one of the lovely people from Breast Cancer Care said that many women found the side effects were much less if they switched to the original
licensed brand (Femara), although many doctors were reluctant to pay for it because it was so much more expensive. When I switched, the side effects reduced dramatically. I was then switched to tamoxifen after a couple of years, and found the side effects were quite bad again, but once I insisted on having the original brand, Nolvadex, it made a huge difference compared with the generic brands. Although GPs can’t specify particular generic brands of letrozole or tamoxifen, they CAN prescribe the original brands. I was subsequently a volunteer for Breast Cancer Care for several years and came across so many women whose side effects were reduced drastically when they were switched to the original brands. I also found that it was the case that pharmacists tended to give different generic brands each time you collect your prescription and the side effects can vary hugely between manufacturers. I think it’s definitely worth asking your GP consider prescribing the original brand to see if side effects reduce.

Something else that was mentioned to me was that not all tablets are the same, ie they can be coated in different ingredients which can be easier for you to tolerate so it may be good to speak to your pharmacist and see if you can swop the make?
I have heard of this before too.
Can happen with different brands of medications like antidepressants.
I didn't have any side effects with tamoxifen until about 7 years in I had vaginal astrophy so took estradiol which my consultant said was okay to take while on it.

I've been on it for 5 months and I feel so poorly. I am so weak. Went to the supermarket earlier to get bread and milk and barely made it back to the car.

And next week I have to have an operation to deal with the hyperplasia it has caused.

H, I’ve been in it for nearly 2 years, have to take it for another 3. I went down to a half dose last year cause couldn’t cope with the side effects. I had some NHS acupuncture and now do some on my own. I also take various supplements (vit D, Magnesium, Omega 3 and a probiotic), try to walk as many steps as I can, do Somatic yoga’s and wear a meno ring. The menopause symptoms can be grim, I’m finding that I have to adjust how I manage every so often. Biggest thing is my lack of tolerance and my lack of willingness to be a slave to the house

I only completed 2 of 5 years I was supposed to be on it. It was really affecting my bladder badly and it is noted to be really bad for your bladder in general. My oncologist then put me on exemestane which I took until 2022 and now my whole body is fucked. Osteoporosis, T2 diabetes, exhaustion, constant hot flushes etc etc.
And after all that I’ve got an appointment with the Breast Surgery team next week after more mammograms and a biopsy. My oncologist told me it reduced chances of reoccurrence by 3%! Whoopydoo.

Thank you, all of you. I really appreciate your insights. There's a lot to think about here. Maybe this drug just isn't worth taking. I've been told I'll be on it for 10 years. Is anyone else on it for that long?

OMG! I did not know that about Tamoxifen and bladder issues. I was diagnosed with OAB about 6 years ago (after 4 years of Tamoxifen). However I have 3 kidneys and have had UTIs since my teenaged years so put it down to that. I had an operation to remove a growth in my ureter and that’s when my OAB took hold (& the UTIs abated) but am now rethinking it. Not that there’s anything I can do about now!

I am 69 and been on Tamoxifen since February. I have been so weak, cannot get out of bed in the morning, the hot flushes and the 4am cramps.
I spoke to the cancer nurses and they requested my doctor to do bloods.
I am now chronic anaemic. Don't know if Tamoxifen caused this.

I went on it at 39, managed 6 months of it. I have never felt so ill in my life. Even chemo with a 6 month old baby was preferable. I am not a wimp, I kept up long bike rides during chemo and did a 100 mile bike ride three weeks after finishing active treatment - one week of tamoxifen and I could barely walk the dog. I couldn’t sleep, I couldn’t pick up my baby because of the joint pain, I couldn’t eat because of the bloating, I had such terrible uterine thickening they thought I might have more cancer - and then the decision was finally made for me when I developed a cerebral venous sinus thrombosis and wound up in hospital, so now I can’t take it (thank god) I was about to say “no more” anyway as it took my life away, and I’m not exaggerating.

When I really looked into the stats I felt it had been oversold to me anyway, they throw out percentages but when I asked “but x% of what” (because percentages are meaningless in isolation) no one could tell me. I did the updated Predict tool recently and from memory the impact of tamoxifen was much smaller than I remember believing at the time.

I have colleagues who’s side effects settled and some who had none at all, but for me it was brutal.

I wanted to highlight Arraminta's post. I took Tamoxofen/Letrozole on and off for 5 or so years. It made me feel ancient and, ultimately, I decided that quality of life was more important than quantity.

In any event, like Arraminta, I realised that taking the drug improved my chances of surviving 5 or 10 years by a very, very small percentage. It really wasn't worth worrying about. It did make me wonder why on earth so-called medical experts keep pushing women to take them even when, as in my case, the statistics show very little advantage. * *

You can use the Predict tool to check whether it is worth bothering with in your own particular circumstances - Predict Breast.

Omg, that tool shows no advantage at all to me taking it. But I have been taking it and have had to have surgery to deal with the endometrial thickening, and am now having trouble with ligaments and failing knees. Plus I can't sleep, am tired all the time, and generally feel like crap. For, it seems, no benefit at all.

Same! It shows a less than 1% advantage to me, but I did 5 years of Tamoxifen and 3 years of Anastrazole!! I developed pre cancerous cells in my uterus, and had to have a hysterectomy with ovaries and tubes out too. I also developed osteoporosis. All thanks to treatment which has given basically no benefit at all 😡

I’m on it for 10 years OP. I’m 7 years in.

I asked last year if I can stop. The message came back “absolutely not” but no reasoning was given.

So why do we think it is being pushed onto women who will have very little benefit in taking it? I had to argue my case quite forcefully - and I'm pretty good at arguing 😎😂

I suppose because out of 100 women who take it, in 10 years time 1 will be alive because she took it. We don't know if we'll be the one who needed it to survive or one of the 99 who didn't.

It incapacitated me. I couldn't have worked so I'm not surprised you're struggling. 10 years is longer than most I know are on it.
I hope you find a way to deal with it.

I was 39 years and 10 months when I started it. I gather it’s generally prescribed for 5 years once you hit 40.

The predict tool is really interesting. I couldn’t actually see an additional benefit now I’ve taken it for 7 years. Time to ask the oncologist via my GP if I can stop.

I was originally started on for 10 years but they had changed it to 5 so I received a letter from the hospital that I no longer had to take it but I had been on it for 8 years