Have just received a copy of the last phone consultation under diagnosis: polycythemia vera 1997 JAK2 V617F positive/Post polycythemia myelofibrosis 2019, came this it wasn't mentioned in the call.
Cytogenetics showed dup(1q) anyone know what it means as my next phone consultant is not till the end of September and I don't want to bother the doctors with it at this time when I know there really busy x
it is a type of gene mutation associated with MPNs.
atlasgeneticsoncology.org/A...
What is not clear whether the mutation comes from the MPN or from toxic agents sometimes used to treat the MPN (e.g. hydroxyurea is a known mutagen),
You will not be bothering your doctor to call and ask for an interpretation of your test results. That is their job. Assertive patients receive higher quality care. Passive patients do not.
Please do find out what the test result actually means and let us know. We can all benefit from what you learn. We are stronger together,
Hi Kabuki, I understand your concern about contacting your doctor as this time, but I am sure that they will be happy to answer your questions as it is a while until your next appointment, you can also contact the haematology nurse specialist at your hospital for their advice on this result. Best wishes, Maz
Thanks for the advice, I have rang his secretary and left a message asking for an explanation, she said that I shouldn't worry about it as they do this type of testing a lot and things show up that have no relevance and maybe that's why they have not said anything about it, but will give his registrar the message as my consultant is on holiday for a couple weeks. So I will let you know what they say.
Trials
A month into Pegasys, Australia …
myelofibrosis
Tilt Table Test
Pegasys - possibly closer to slowing progression than anything else?
