Tamoxifen Side Effects

[KylieLM]

Hi Everyone.

It's my first time on here and I'm thrilled to find you all!

I've been on Tamoxifen for about 5 months now after a lumpectomy and radiation therapy for a Grade 1 Invasive Ductal Carcinoma hormone positive and Her2. And I have a few questions around side effects.

The side effects have caught up with me. Aching joints and muscles, terrible sleep and constant fatigue ( even when I do sleep ), tightness in the chest, hot flushes, irregular periods. I know these side effects are considered normal.

What I wanted to ask was about some that don't appear so normal.

- Weeing 5-6 times a night full bladder ( no UTI, I've been tested. And blood sugars are fine )

- Bladder and lower abdomen discomfort

- Red and white blood cells in the urine ( we can't find a cause ).

- Bad breath, this started at the same time as the weeing!

I've only found one website that refers to blood in the urine, bladder pain but nothing on the night weeing and bad breath. Nothing else in my life has changed and both my doc and oncologist just say, well that can happen. And yet I can't find anyone else who gets these effects!

Do any of you?

Cheers

K

[Memories]

Hi Kylie, I don't have all of the side effects you mention but after over a year on Tamoxifen I have found that different brands give me different side effects. Just something you might want to look at? x

[KylieLM in reply to Memories]

Thanks for that. I'll look into it.

[carolinenailsea]

Sorry I cannot help as I am not on tamoxifen but the side effects sound very wierd. The only thing I can think of is getting a second opinion. Good luck. x

[KylieLM in reply to carolinenailsea]

Thanks for that! And I agree.

[Ratbagtazbag]

Hi! I’ve been on Tamoxifen for a similar time to you and the effects on the body are so wide ranging. Basically as it puts you through a medical menopause and stopping the hormone eostrogen it affects so much. I’ve had sensitive itchy skin which luckily is a lot better now. Inability to hold a full bladder and needing to go to the loo more often, tiredness, waking up with hot flushes, constant fatigue which I think is from radiotherapy too, aching joints too. When you look into how much oestrogen is involved in the body you can see why it can have such wide ranging effects. I found looking on the Menopause matters site and weekly newsletters helped although you can’t take any of the natural remedies as these will either interact with tamoxifen prevent it working. Some people find EFT emotional freedom techniques or tapping help with hot flushes. You can access for free from Breast Cancer Haven website or Penny Brohn. It basically sucks being on tamoxifen and I can see why some people stop taking it. However I don’t think I could ever forgive myself if later I get breast cancer again and the tamoxifen could have stopped it. Happy to chat more if it’s helpful! Take care. X x x

[KylieLM in reply to Ratbagtazbag]

Thanks so much for that! It comfuses the body doesn't it! I'd been peri-menopausal for years and my estrogen levels were already very low so I'd hoped to avoid too many symptoms.

I've been taking homeopathic drops for the hot flushes and it works great, and my oncologist is fine with it. So it might be worth asking about??

I'm going to try a different brand of tamoxifen too.

My most recent tests have found cysts/lumps in one of the adrenal glands and I'm waiting on further test results. Apparently that could be causing some of the symptoms. Results due any day now.

[KylieLM in reply to Ratbagtazbag]

My joints are painful too! Especially ones with old injuries!

[Ratbagtazbag]

What homeopathic drops are you using?

Good luck with your results! X

[KylieLM in reply to Ratbagtazbag]

I'm not sure what's in them as she makes them herself. I have a Naturopath who specialises in cancer and works with patients using standard treatments so all her stuff works with the treatments and meds.

I also take a Chinese medicine remedy for the sleep. It's horrid but works!

Thanks! Fingers crossed!

[Winnie13]

Hi Kylie,

I’ve survived my first year on tamoxifen and it’s taken awhile to get on top of the symptoms. It’s all about the brand (each company uses different fillers - which is what causes the side effects. I was on Relochem which gave me horrendous joint pain and I could hardly walk. Tillomed gave me insomnia and made me emotional. I’m now on Wockhardt and everything is more settled. I have acupuncture every 6-8 weeks to help with the residual joint pain in my hands. I nearly gave up with tamoxifen but now it feels easy and doesn’t impact my quality of life too much.

I hope you get it sorted xxxxx

[KylieLM]

Thank you. That helps so much. I'm so pleased you've found you path through it! Xo