Myelofibrosis

FormerMember
FormerMember
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Hi there, 

I’m hoping just to get some advice regarding my Dad. He has just been diagnosed with Myelofibrosis and I’ve a feeling that he’s far on. He slept all day yesterday and didn’t eat anything. He is also very short of breath. 
At the moment we have no support system and I know my mother is struggling with the diagnosis.
Where can I turn to get my father and mother the support they need?
Many thanks Heart️ 

  • FormerMember
    FormerMember

    I am sorry to hear of your dads recent diagnosis. In order to get the right kind of support it’s important to try and establish what stage his disease is at and timescales regarding progression. Obviously this is a sensitive matter as not every patient wants to know about their prognosis. Has he been given a treatment plan ? As whether this is curative or palliative in nature  will indicate what sort of assistance he may need in the future. The early days after a diagnosis is a confusing and stressful time so establishing the facts is very important, even though it may be upsetting. I would very gently try to establish with your dad the information he has received so far and try to open up a conversation about how he wants to handle things. How each patient reacts to a diagnosis of cancer is so individual, there’s no right or wrong way but communication is very important.

    best wishes 

    jane

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Jane,

    Thank you so much for getting back to me so promptly. 
    I am going to use your advice and have the conversation with Dad. 
    I know my mum took notes at the hospital but I don’t think she understands what it means. All I know is that his red and white platelets are high and that he has to wait until 11th November for a bone marrow biopsy. I’m just concerned that he won’t be strong enough by then as he’s struggling with breathing now and I also noticed his eyes are yellow which could mean his liver is enlarged as well as his spleen. 
    I will venture towards a private conservation tomorrow. 
    It’s so nice to have someone to bounce things off as I don’t want to upset my mum. 
    Regards Diana X

  • Hi  and a second welcome to the Online Community, although I am sorry to see you finding us and so sorry to hear about your dad’s diagnosis.

    Have you had time to sit and talk with his medical team and find out what treatment plan they are looking at?

    We don’t have a specific group that covers MF but I have talked with a few folks with MF in our Stem cell transplants for blood cancers group as Stem Cell Transplant is one of the treatments that can be used.

    The care of your dad needs to be driven by his hospital team or GP so some questions need to be asked.

    As I was the person with the blood cancer my experience of supporting someone is very limited, although my wife has been amazing over my 20 years. You may also find our Careers Only and Friends and Family groups as good places where you can connect with others support family through their cancer journey but more importantly the carers care for each other.

    You may find our various Macmillan Support Line Services to be helpful - call them on 0808 808 00 00 This free service covers Emotional Support, Practical Information. Clinical Information, Financial Support mostly open 8.00 to 8.00 but check the link

    Keep posting as we will help as best as we can.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • FormerMember
    FormerMember in reply to FormerMember

    Dear Diana , thank you for your reply and I’m glad my advice resonated with you. I just wanted to reassure you regarding the bone marrow biopsy, Haematologists use this method to get the most definitive diagnosis they can, I did not find it painful and great care is taken by the nurse to make sure it is done with the minimum discomfort. Once the results are back the doctors will be able to give you a clearer idea of the way forward in regards to treatment. Regarding your dads breathing don’t hesitate to call out your general practitioner if this worsens, anything that can be done to make you dad more comfortable while he waits to start treatment is worth exploring. 
    best wishes 

    jane