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.
My mum, 76 yesterday, was told today she’s more than likely got this … she’s had polycythemia for 2 years but it seems to have changed. From the way the consultant talked I’m now really scared.
Hi @Dinonick I am so glad that you have found us and posted, welcome.
I am sorry to hear about your mum’s shock diagnosis and it is so natural that you are both really scared of the unknown, you are probably both in shock.
At such times my thoughts and feeling start racing in all directions.
What did the consultant say and what is the next step, if you don’t mind me asking?
Now is your opportunity for you both to write down all your fears, thoughts, feelings, practicalities and questions so you know exactly what you want to ask.
Are you able to go into appointments with your mum?
If you would like to talk to someone at Blood Cancer UK please do give their support line a ring. We are also here for you both on this forum.
I look forward to hearing more about you both.
Look after yourselves and be kind to yourselves
@Erica thank you for replying. The next step is a bone marrow biopsy on Monday to confirm the diagnosis. Consultant said there were tablets she could take to alleviate symptoms- she has bad night sweats and has lost a lot of weight. It’s frustrating as we’ve flagged these symptoms previously but they were seen as being polycythemia symptoms. Now I know I shouldn’t have researched online but when she asked about prognosis I could see how uncomfortable he was and just said let’s confirm the diagnosis first. Given her symptoms and age it doesn’t look promising at all
Hi @Dinonick and welcome to the forum. You must both still be in shock and understandably scared. You did all that you could by flagging the symptoms to your mum’s consultant. However, I personally understand how frustrating it is when you realise that this could have been a symptom of something else. As the consultant said, wait for the prognosis but have any questions you want to ask written down. I think it’s important that if you have questions around this that you should have the opportunity to ask them.
I think we are all guilty of using Dr Google at times because we want to find out more. How long have you got to wait to see the consultant again?
Please use the forum to keep us updated and for support. We all know how difficult it is going for tests and waiting for results. As @Erica has had said, support line is there if you need it to.
Please keep us updated and keep posting. Sending special wishes to you both and remember, we are here for you both
@Nichola75 thank you so much for your reply. The consultant said he’d see her again in a couple of weeks. This is a new Dr at the clinic and he seemed great. I’m hoping my mums research skills aren’t as good as mine as she’s very good at being positive but I could see she was thrown yesterday. He never used the word cancer to her but she knew it was serious