Mylofibrosis

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  • Hi I am new to the community. My Husband has mylofibrosis. I am finding it difficult at the moment because he is not eating properly and is losing weight. He has anemia and his haemoglobin is very low and he has 2 packs of blood every 2 weeks and it looks like that may go to weekly. Any body have any suggestions on how to encourage to eat more. Thank you
  • Good Morning  

    A warm welcome to the Macmillan Online Cancer Community although I am so sorry to find you here.

    New to the Community is where we try and direct you to the correct place on the Community as it is divided up into cancer specific forums or chat rooms. To meet with people on the same or similar journey as your husband I would advise you to join the following forums;

    Myeloma forum 

    Carers only forum 

    To do this just click on the links I have provided, Once the page opens up click on "join" on the black banner at the bottom of the page. Once you have joined that Community you can either copy and paste or repost your original post in the "New Here - Say Hello" section. there other Community members will see the post and reply accordingly.

    We also have an "ask a Nurse" section where you can post this or any medical question - here's the link -

    Ask a Nurse 

    Please allow a couple of days for a reply as they are quite busy.

    There is also our support line on 0808 808 00 00 (8am to 8pm 7 days) where you can also ask questions and obtain additional support.

    I hope this helps, if I can do anything else for you please let me know.

    Best wishes - Brian.

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  • Hi  

    I hope you might find this resource helpful

    MPN Voice UK

    There is also a forum within the community dealing with rare cancers, and the link is here-

    MDS and MPN

    The carers only forum, as mentioned by Brian, can be a good place to connect with others who are caring for those with cancer who may have encountered eating issues, even though the cancer type may be different.

    Sarah xx


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