My Dad has recently been diagnosed

Posted , 7 users are following.

We are scared as hell! Reading a few posts from all of you that have this disease, I feel a lot better. Will you please chime in and give us some words of encouragement?

Would a dietary schedule help? He's been getting a pint a week drawn and he is very tired.

Any help would be appreciated. Thank you!

Greg

0 likes, 6 replies

6 Replies

  • Posted

    Sadly lethargy is a part of this illness. Though when his blood is brought to normal levels he will feel better. There is nothing to feel frightened about , the discease has been located and is being treated. There are a lot of symptoms he may or msy not suffer. Get him to list them and his family doctor will treat as they arise. Its a good idea if your dad tells folk in this site his symptoms , they will happily tell him what drugs they take to counter any symptoms that arise. Dont be worrying he will feel better soon.
  • Posted

    Hi,

    I am 65 and was diagnosed over three years ago.

    I needed a pint removed every day for 5 days and then only once more since.

    I have blood tests every 3 months and see the haematologist then.

    I am on Hydrea and a baby asprin once a day

    As long as he looks after himself he will be ok

  • Posted

    Hello!

    Has your dad had what is known as the JAK2 test? It is a test to see if he got the disease through a change sometime during his life in one of his genes or whether he got it due to his lifestyle.

    It doesn't alter the fact that he has polycythaemia. It won't go away now that he has it but maybe there are things he could do to help himself feel better.

    I was diagnosed this spring and have had venesections. They made me feel great. I take the aspirin every day too. But I am still holding out against the tablets, despite my consultants all wanting me to take them. Everyone has to make their own decisions about their treatment in the end. I am sure that your dad will be fine. It may take a while for things to be sorted out and settle down. Don't be in a hurry for a quick fix.

  • Posted

    Thank you guys very much! Being new to this, the responses are very helpful. I'm going to register him so he can ask questions himself as he is not computer savvy but nor am I.

  • Posted

    Hello Greg

    The venesections (blood letting) will become less frequent over time once your fathers condition is stabilised. It is not uncommon to feel fatigued and this may be due to your father’s iron levels being low as venesections can impact on ferritin (iron) levels as they do mine but these should recover once the venesections become less frequent. Conversely in primary polycythaemia, your father may also experience raised platelets and white blood cells but not necessarily. Polycythaemia is a complex condition and it affects people in different ways.  Does your father have primary, secondary or relative polycythaemia?

    In terms of dietary schedule, my Haematologist hasn’t commented although it is always prudent to maintain a balanced and healthy diet. I am not a big drinker but enjoy the odd glass of wine or real ale, so it’s just about being sensible. Some people on this forum have stayed away from foods high in iron content such as red meat but I do eat red meat from time to time. As mentioned, balanced diet, perhaps smaller portions of food and gentle exercise will help.

    Let us know how your father gets on

    All the very best to you

    Keith

  • Posted

    The first thing to do is find an excellent doctor who specializes in the illness.

    The second which may seem trite to others is: use common sense and prayer

    I have had 3 difference cancers (2 in remission) and have had poly V for

    over 4 yrs. and I am in my senior years (a female).  I have used everything that

    I have advised you and with common sense I  limit my intake of extra iron although the doctor will recommend taking iron if one has blood draws (phlebotomies).  I do not take any iron meds and I do Not eat red meat or eat any veggie high in iron e.g. kale, spinach etc.  I also drink at least 1/2 gallon of water and walk.  I do believe in prayer too which has sustained

    me during the dark times.  Your father will survivie.  Remember I have battled 3 different type cancers and in my senior years who lives alone for over 20yrs.

    My prayers are with you. 

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