Hello there,
I was diagnosed with Essential thrombocythemia (ET) Myeloproliferative neoplasms (MPN) in July. This was after having a stroke caused by CVST.
At the appointment when I was given the diagnosis I was told to think of questions for my next appointment. I got the letter through yesterday telling me my next haematology appointment is in September.
Since the appointment I’ve obviously joined this forum and done some reading but I don’t really have any questions so far. I simply see it as something I have to live with.
I was wondering if anyone could remember or would mind sharing what their early questions were. At the appointment when I was diagnosed I was told they’ll keep an eye on my platelet levels and at the moment that’s it. So yes, what should I ask? I don’t want to miss out on the opportunity to ask questions, but also I don’t know what to ask!
Hello there @Bigmugoftea, welcome from one Myeloproliferative neoplasms (MPN) survivor to another. I really like that you’re thinking ahead to your next appointment—it’s something I tend to do in advance of seeing my haematologist too. Personally, I think being proactive about queries beforehand helps alleviate anxiety I would likely end up feeling if I hadn’t.
I’m so sorry to read of your stroke and subsequent diagnosis with Essential thrombocythemia (ET). Thank goodness you’re recovering well! I had a clotting event many years ago (a heart attack) and this was likely caused by the Polycythaemia vera (PV) I’ve since been diagnosed with.
Stuff I ask my haematologist, for what it’s worth, usually relate to any upcoming changes to dosage of hydroxyurea (as these tend to affect my fatigue levels pretty drastically), any changes in my blood cell numbers that I’ve noticed (from monthly blood tests), and if there’s any change to my care plan going forward.
I also email mine a couple of days before our appointments with updates on how my general symptoms have been, any changes with them, anything of concern, and my haematologist is rather holistic so he likes to know how I’m doing emotionally too. Last year, for example, we delayed a change in dosage until after I’d got beyond the worst of a double bereavement.
Hopefully that gives you a couple of ideas @Bigmugoftea! Interested to know what others might suggest taking to your appointment, and of course how it goes for you, do please let us know.
Good question @Bigmugoftea and I agree with everything @Duncan says even though I have another blood cancer.
I break my questions down to fears, questions and practicalities (there are no silly questions)
I have to write my questions down as my mind goes blank as soon as I walk into a medical building.
Some peoples questions are more technical, medical and practical, others are more fears and emotional.
I like to leave the room with a plan or the way forward.
Ask everything you want to, ask for clarification if you do not understand and don’t forget it is you that leaves the room.
Let us know how you get on and be very kind to yourself
When I have a blood test what are the key things you will look for/at?
What things are important on the blood test?
What ranges are normal for me? (Maybe different to an undiagnosed person)
What levels are likely to be affected with my condition and/or treatment?
When should I expect things to settle to be the normal for me?
When do I know things are getting better/worse?
What side effects are common/abnormal?
When should I seek immediate attention?
Is there anything I can do to stabilise things? Eg exercise, diet, supplements?
How often will I be monitored?
Who is my point of call if I feel unwell?
How will you communicate with my gp or other specialists?
If I get ill what should I do?
Do I need to be wary or cautious about other people/places?
Great, comprehensive list of questions from @Rammie18 (Would make a good “sticky”, actually…)
The only other one that I can think of is as follows:
Are there any immunisations which I should receive regularly? And, if so, do I have to do anything myself to arrange these or are they arranged automatically by my GP?
