I hope this is ok to post as it’s only partly stroke related I guess, however I’m aware there are some really knowledgeable people here so I wanted to post…
After my stroke I was diagnosed with blood cancer because of the JAK2 mutation being present. I was diagnosed in June and told to bring any questions to my next appointment which is in September. I’ve done some reading up on the condition I have, and really I just see it as something I have to live with. So I’m really unsure on what to ask, however I don’t want to miss the opportunity to ask questions either.
I’m wondering if anyone can think of anything I should be asking, or what might you ask if you were in my situation? I have posted in the Blood Cancer UK forum too but it’s quite a quiet forum so thought I might get some ideas from you guys.
When I had my MGUS diagnosis I like you had read up a bit on it but I still asked them for clarification on what it actually meant in reality, what the chances of progression are, what happens if it does progress, will I be monitored & if so how & how often, what did I need to do if I thought thjngs had progressed, what should I look out for (i.e. symptoms that might mean things are progressing) & what could I do, if anything to stop it progressing, will there be a follow up appointment, do you need any further tests.
I found haematology to be extremely helpful & looked after me well. I have phoned them a couple of times since & they dealt with my concerns straight away & put my mind at rest.
I’m a lowly biologist so my questions aren’t necessarily medical.
Is your immune system affected in terms of the production of white blood cells,the cells responsible for fighting disease?
Is your oxygen saturation affected by the lack of red blood cells would you be better off at low altitude where the oxygen concentration is higher.and visa versa should you avoid high altitude because of low oxygen?
Similarly should you avoid scuba diving?
As it s a mutation should the rest of your family be tested?
Will a blood transfusion,improve things for you?
I’ll echo best department I have dealt with. I don’t know what you should ask however I will say I have had a similar diagnosis for 25 + years and am still here! In all that time I have only had two consultants so they’ve been in it for the long haul as well.
I found haematology to be fantastic too. Couldn’t do enough for me. They were very matter of fact but I like that. She made a course of chemo sound like nothing worse than taking paracetamol
