Hi, my dad is 79 and has myelofibrosis. He was looking thinner last time i saw him (during summer - he lives 4 hrs drive away). He has recently had 2 blood transfusions to try and get his count up to 90 and my mum says he’s been napping for longer. I don’t want to ask him directly, but what is his prognosis likely to be at his age? Are the transfusions a sign that his health is deteriorating?
Welcome @Fluffycat to this forum. I hope you find us supportive and helpful. I also have Myelofibrosis and was diagnosed in my thirties. That was over twenty years ago. In recent years I have started to require regular transfusions of red blood cells because my haemoglobin level was dropping. I also struggle with fatigue which seems common to most blood cancers. As far as I understand it, Myelofibrosis is a variable condition and no two patients are going to be exactly the same. Even the medical team are reluctant to give a prognosis but they would be the best people to ask about your father. It must be so hard for you especially as you live quite a distance away and presumably aren’t able to visit that often. Thinking of you and sending warm wishes. Willow
Hi @Fluffycat, I am glad you have found us and I really feel your anxiety about your fathers health. It is much easier to see changes in people you do not live with and it is so natural to have your feelings.
@Willow has given you such good advice.
I have another blood cancer which gave me a prognosis on the internet of 5-10 yrs and I have lived with it for 17 yrs, I am now 71yrs old and I am still having fun. I also have fatigue and I am known to have a little nap in the afternoons.
We are all unique beings and your fathers medical team are best placed to ask medical questions too.
We are here to support you and if you would like to speak to someone the Blood Cancer UK support line details are above.
Look after yourselves and please keep posting.
Thank you so much Willow.
Thank you so much Erica.
Hello and welcome to the forum. I’m so glad @Willow was bakes to share her experiences. Always best from those who have been/are going through it.
I’m glad you have found us X
Hello @Fluffycat it’s so understandable that you have these questions. It must be really hard for you may I ask how you’re doing? Just in addition to Willow’s lovely reply to you, you might find our booklet on MPNs helpful, particularly pages 56 and 57 as it talks in general about how MF develops - Myeloproliferative-neoplasms-MPN-Blood-Cancer-UK-MPN-0315.6.pdf (shopify.com).
thanks, I’ll take a look. I was concerned that my dad didn’t have long left to live, but he is 79 and I need to accept that we will all go at some point. I just need to work out how best to support my parents, e.g. visit more often or move house to be closer etc. It is challenging because he doesn’t like to talk about it, so I am trying to do my own research and find out what his needs will be.
Oh @Fluffycat what a dilemma you have, perhaps you could ask them what might assist them like on line deliveries that you could assist them with from where you live.
Perhaps everyone is so individual it is difficult to know know what both your parents needs might be, like help with transportation.
Don’t forget if you mother is the ‘carer’ what a draining role that is emotionally, physically and practically.
Perhaps play it as and when and also look after yourself as anxiety can be so draining.
Take care and keep posting.
thanks Erica, you’re right about the anxiety, esp with other life things going on too! He sees the consultant Tues night, so I hope they will give me a bit more info then. However things are, I’ll try and get used to the new normal and not get too anxious.
Thanks again for your advice.
Are you going to the appointment with him? If so, write down all of your questions. Be thinking of you on Tuesday. Just take one day at a time and keep sharing. It’s so important to have somewhere to to talk about all your thoughts and feelings. Please let us know how your dad gets on X
Hi @Fluffycat yes, as @Nichola75 says this is a place for you to able to say how it really is for you and the Blood Cancer UK support line details are above.
Some anxiety is natural, you care about your husband.
I think you are doing absolutely brilliantly and we await hearing how your husbands appointment goes.
Hi, my dad got on fine on Tuesday. The consultant said the recent blood transfusions have really helped. So that’s great news. Thanks everyone for your support.
That’s really good to hear x
That really is good news @Fluffycat.
I hope you and your dad can relax a bit more now and just take things as they come.
However some anxiety before and during appointments is natural, but please share what is going on with you.
Look after yourselves and spoil yourselves.