Tamoxifen troubles

Former Member over 3 years ago

4 replies
251 subscribers
746 views

Hello All,

I'm 50 and had a lumpectomy and sentinel node biopsy back in the middle of July. I am lucky that I don't need any chemotherapy, awaiting radiotherapy in November. Came off my HRT prior to surgery on hearing I was ER/PR positive. Also had mirena coil removed.

I was prescribed tamoxifen at my first oncology appointment just over two weeks ago, the oncologist was very clear that if I couldn't tolerate it then they would try something else and that if necessary I was low risk so not taking anything wouldn't be a big issue. Only started taking it 9 days ago as I had a wobble about side effects and they've already kicked in.

I've already become a miserable witch, I feel permanently sick, could sleep all day, crying and snapping at everyone. I don't have any energy to do the things that make me happy and I just want to stay away from everyone as I am making them miserable too.

Is this normal? It seems very quick to be experiencing such extreme side effects. I know it's early days but I can't work/ function and my moods are not fair on my children or partner. ( this is why I took HRT in the first place)

Irishgirl16 over 3 years ago

Hi so sorry to hear this. I suggest you get an appointment with your breast team and talk this through and see what they advise. Quality of life is an important factor in treatment and I am sure they will help you work this through. Best wishes

DollyP over 3 years ago

Hi Sundrop

I could have written your post myself! I was exactly the same as you in terms of age, cancer diagnosis & treatment (surgery/radiotherapy/tamoxifen) and having to stop HRT/ have Mirena coil removed. I was diagnosed in February this year.

I have struggled with nausea, insomnia, hot flushes and tiredness/weakness since starting on tamoxifen in April. The side effects have started to ease, but it's taking a long time. Three things that have helped me:

- venlafaxine (an anti anxiety medication which also helps with hot flushes and other tamoxifen side effects)

- changing to a different brand of tamoxifen. I've no idea why this helps, but there is one brand I refuse to take now as it made me feel particularly rough.

- getting back into the swimming pool and building up my strength (I love the water) :-)

I hope this helps a bit and you feel better soon. At present I would rather suck up the side effects than increase my risk of reoccurrence, but my cancer nurses remind me that there is definitely a quality of life consideration.

Former Member over 3 years ago in reply to DollyP

Thank you so much for your response, sounds dreadful but I'm glad I'm not alone! Also glad things appear to be improving for you .

Could I ask which brand made you feel rough, and which work best for you? I'm about to order a repeat prescription so would be great to have some pointers.

I'm going to take it for a month and then reassess, I know I can't live crying half the time and not able to do the exercise I love (cycling and running - was doing between surgery and tamoxifen with no issues, now it wipes me out for the next day)

I would consider venlafaxine but aware it has its own host of side effects - have you managed to avoid those.

Sage seems to be tackling the hot flushes for me - hooray!

Thank you again, your reply means a lot

Former Member over 3 years ago in reply to Irishgirl16

Thank you, I'm planning on continuing for a month and then going back if things don't improve, I know they'll be supportive.

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