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Coming off Tamoxifen

Natty82
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Hi,

I have recently come off Tamoxifen after taking it for 13 years, no one has talked to me about any possible side effects and I am feeling quite out of sorts, with headaches, brain fog and general tiredness.

I have tried my GP but they can't help as they say they have no understanding about this drug.

I would appreciate some help and reassurance as to whether withdrawal symptoms are possible after stopping it after such a long time.

My anxiety is also through the roof so I would really appreciate your help.

Thanks,

Natalie

  • Hi Natalie,

     

    Thanks for getting in touch. My name is Sarah and I’m one of the cancer information nurse specialists.

    Feeling anxious is understandable especially after taking the medication for a long time and are now experiencing new symptoms after stopping it. The feeling of anxiety is felt by lots of people when medication for cancer stops as they feel safe while on treatment.

    It’s difficult to know for sure if the symptoms you are experiencing are due to stopping Tamoxifen as side effects can affect some people for a few weeks and months after they stop taking it.

    I’m happy to hear that you have been in touch with your GP, but I wonder if speaking to your local pharmacist would help. Macmillan have a partnership with Boots who can answer questions about medication.

    If your symptoms don’t settle down, I would encourage you to speak with your GP again to explore whether there may be another reason why you are having the symptoms you mentioned. They may decide to check your bloods just to get an idea of your general health.

    We have a breast cancer forum on our Online Community, it might be worthwhile posting your question on that support group to see if anyone else experienced any symptoms when they stopped taking Tamoxifen, for how long and what they did to help with their symptoms.

    If you feel you are struggling emotionally it might be worthwhile to consider counselling. Macmillan have a partnership with BUPA who are offering free counselling. You can book a Wellbeing Assessment at a time that best suites you, but if you have any problems we can do this for you by giving us a call.

    I really hope this information is helpful, but if there’s anything else we can help you with please don’t hesitate to get back in touch

    Take care and best wishes,

    Sarah (Cancer Information Nurse Specialist)

    You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email.

    Ref: CF

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