Disclaimer

Although we take care to ensure accuracy, Macmillan Cancer Support does not accept liability for the information and materials provided or referenced in Ask an Expert or for any errors or omissions in them, or for third-party information or services such as other websites we may link to. The information and materials provided or referenced in Ask an Expert are for information purposes only and are not intended to be legal, financial or medical advice or opinions. If you need more details on your rights, please contact a financial, legal or other appropriate adviser.

We recommend that you consult your doctor if you are concerned about your health. Any You should not rely on any information and materials provided or referenced in Ask an Expert including by our Experts as they are not a replacement for advice, diagnosis or treatment from your medical team, and our Experts cannot provide a second opinion to that of your medical team.

Your question can be read by others – so please don't post your contact details or any other information that could personally identify you. Please read our Terms and Conditions and Community Guidelines for more details.

Waldenstroms and genetic haemachromatosis

Wysiwyg16
  • 2 replies
  • 42 subscribers
  • 137 views

I was diagnosed with waldensroms lymphoma 18 months ago. Started treatment 12 feb 2025 after drc? Cyclporamide? Left me throwing up for 30 hours I ended up in an and e. I’m on brukinsa now and doing well. In 2014 I was diagnosed with genetic haemachromatosis. 500mg blood was taken every 3 or 4 months since. This stopped in feb this year. As far as I know my ferritin levels aren’t being checked. Is it normal to stop blood letting when you are on immunity compromising medication? I assume I’m not making blood as I normally do ?  I have contacted my blood chemistry docs secretary but nothing back. It is the holiday season so maybe that’s the reason. A way any advice would be welcome

  • Hi Wysiwyg16,

    Thank you for contacting Macmillan Cancer Support. My name is David, one of the Cancer Information Nurse Specialist’s on the Macmillan Support Line.

    I am sorry to hear about your Waldenström’s Macroglobulinaemia (WM) diagnosis. However, I am glad to hear you are currently doing well on Burkinsa

    We are unable to discuss the specifics of your case because we don’t have access to your hospital records or test results.

    We therefore strongly advise you discuss your concerns regards haemochromatosis and ferritin levels with your Haematologist directly in the first instance.

    As part of your ongoing treatment for WM, your Haematology team will continue to monitor your blood and iron levels.

    Whilst your immune system is compromised repeated punctures of the skin for bloodletting purposes may also further increase risk of infection.

    Blood Cancer UK and Lymphoma Action are also good sources of information and support.

    You may also want to have a look at Haemochromatosis UK for information and support.

    If there is anything else we can help you with please feel free to get back in touch.

     

    Best wishes

    David, 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/**

    DT/FP

  • in reply to David T - Macmillan

    Thanks for that I have my next appointment on 12th so will discuss with the nurse when me check is done

Help us do whatever it takes, because we’ve never been needed more.

© Macmillan Cancer Support 2025 © Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 3rd Floor, Bronze Building, The Forge, 105 Sumner Street, London, SE1 9HZ. VAT no: 668265007