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Hydroxycarbamide side effects

Skaro
  • 2 replies
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Hello

I recently read on the MacMillan information page about hydroxycarbamide that rare side effects could be respiratory. I have had ET for three years and have been on hydroxycarbamide since then.  I’ve had various common side effects that have more or less cleared up but I’ve had wheeziness and a cough for almost 3 years.  I’ve had an x-ray and the GP has checked my lungs and all is good, fortunately. I spoke to my specialist nurse last week about the symptoms but she hadn’t heard of wheezing and coughing connected with the drug.  Could you give me some more information as to why the hydroxycarbamide might, on rare occasions, cause respiratory issues?

Thank you very much!

Skaro

  • Hello Skaro

    Can I first say, that is a great name!

    Thank you for getting in touch with us. My name is Lynsay, and I am one of the information nurses with Macmillan cancer support. I hope you find the online community a helpful and supportive space.

    I am sorry to hear that you have had wheeziness and coughing since starting your hydroxycarbamide treatment, however it is good to hear that you have had an examination and a clear x-ray.

    Hydroxycarbamide can on rare occasions cause changes to the lungs, this is unfortunately one of the potential side effects of the medication. This is because for some people this medication has a more toxic effect on the lungs.

    The information provided in relation to hydroxycarbamide advises that up to 1 in 10 people may experience breathlessness or a cough and a fever, however the rate of serious respiratory issues are much rarer.

    When respiratory issues are caused by hydroxycarbamide, it can result in a variety of changes within the lungs including inflammation (swelling) and/or oedema (fluid in the lungs). It can also, in very rare cases, lead to pulmonary fibrosis which is scarring on the lungs.

    In most cases all these lung changes would be detectable on an x-ray. However due to the persistent nature of the wheezing and coughing you are experiencing, I would encourage you to discuss this further with your Haematologist.

    They would be able to advise whether any additional imaging such as a CT scan would be indicated. This may not be needed, but your Haematologist would be best placed to explain why further imaging wasn’t needed and to reassure you about this.

    I hope this information helps. Please feel free to get back in touch if you want more information or support.

    Best wishes,

    Lynsay

    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/ BL

  • in reply to Lynsay - Macmillan

    Thank you so much Lynsay.  That’s very helpful.  I’ll be seeing my specialist nurse face to face in May, and will send on your information now so that I can perhaps have a conversation about this.  It might be due to something else but better to get checked.

    Thanks again.

    Skaro

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