Ask about leukaemia

Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia and Myeloproliferative diseases. She'll aim to respond within 2 working days.


Posted by

Hello ,

My wife was diagnosed with CLL in January aggressive B cell histological CLL . It has now spread to her back , both sides of neck and left anterior bone . The oncologist is worried about a transformation . The Pet scan shows avidity suv of 28.9 on one side of the neck and 18.1 on the other side . The neck lumps have grown from 19mm to around 5 cm . How likely is to be a transformation into high grade lymphoma . On one research paper i found it says 90 percent of suvs above 11 are high grade . Really worried now although my wife does not have IGH mutation in fish analysis . we find out on Monday 20 th but she did previously have DBCL stage 4 in 2015. Many thanks 

kind Regards Abid 

Caroline- Macmillan

Hi Abid,

I am SO sorry that I didn't reply. I had a few technical issues last week and I am only seeing this now. I hope all went well. If you have any further questions, please get in touch

Caroline - Macmillan  Information Nurse Specialist

Remember you can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or by email.