Just got back from hubby's haematologist appointment with FISH results...it showed he has 13q- with RB1. Doctor said it is one of the better deletions. I have never heard of RB1, can anyone shed some light?
Otherwise bloods look good with white count only marginally increased. Ultrasound of lymph nodes/spleen were normal. Back to watch & wait for now however doc believes treatment may be in the 'nearer' future rather than far.
Still can't get her to take fatigue seriously despite his being over 60% Less active than he was 6 months ago.
Regarding trial for naive patients with Venetoclax she was keen to get him on it if he qualifies. I think by what I've read it's due to start in a few months here in Melbourne.
Thanks for letting me vent this forum is absolutely amazing and the information found here is invaluable. I definitely felt super equipped and armed with knowledge going into the appointment compared with the other times when everything went over my head!