Initially diagnosed with CLL November 2008. Have had two lots of chemo. In July 2015, lymphocytes reached 35 . This was also when I had my first CT and PET scans. Shortly after I commenced on ibrutinib.

Had another CT and PET scan in May 2016. Understand my haematologist said that the July 2015 scans could not be used as a base (because of the readings) to compare with the most recent scans. Hence I will have a CT scan ( only) in about one month.

My question is "when are CT and PET scans utilised in the treatment of CLL. "



8 Replies

  • Hi Basil,

    PET scans are not used in CLL monitoring. They may be used to check for Richter's Transformation, where a fast growing lymphoma mass will show up on a contrast dye PET scan.

    CT scans are now rarely used to monitor CLL other than in rare situations or as a condition of a clinical trial. Why has your specialist given you a PET and CT scan last month and asking you to have another CT scan in a month?

    A lymphocyte count of 35 is barely above the threshold of 30 when CLL specialists begin to monitor lymphocyte doubling time. We have some members with lymphocyte counts above 200 and still in watch and wait. That should not have been the reason for starting you on treatment. Did your specialist explain why you required chemo treatment or treatment with ibrutinib, which I presume you are still taking? Have you had any other symptoms that triggered the need for your treatment cycles?

    Given the above, how experienced is your specialist with treating CLL patients?

    A couple of lists of recommended CLL specialists can be found here: , but unfortunately it doesn't contain many Australian specialists. If you are prepared to say where you live, you may get some recommendations from other Australians near you. Just make sure you set your post to private to this community.


  • Neil, sincere thanks for your time, effort and content. Am on a clinical trial with ibrutinib, hence this may be the reason for the CT scan. Will have to nicely ask at next appointment.

    Understand I don't have Richter's Transformation.

    The July 2015 PET and CT scans showed "very large cervical and axially lymph nodes".

    Changes in blood test.

    WCC. April 2015 4.28. July 2015. 49

    Lymphocytes. April 2015. 2.9. July 2015. 35

    Understand haematologist wanted a "base line" to monitor changes

    In July 2015 The only symptoms were swollen lymph nodes in the neck, which are now not visible. This had a negative impact on my breathing.

    Once again, thanks

  • I thought you were most likely on a trial given you have accessed Ibrutinib in Australia. I hope it works out well for you. Having difficulty breathing would certainly be a good reason to start treatment!

    You should have been informed of the requirements for scans at specific times when you were given the trial paperwork, so check what you signed up for before discussing whether you can reduce the frequency of scans with your haematologist.


  • Some of us that present more on the SLL side of the spectrum with little peripheral blood involvement but significant lymphadenopathy in areas that can't be visually observed or felt, benefit from CT scans to identify need for treatment and to identify efficacy of treatment. But CT scans not PET/CT scans.

  • Thanks. The medibank ( Aussie taxpayers) contribution was $1800 for these tests. Will diplomatically ask haematologist at next appointment. It appears these tests may not have benefited me directly but to aid the trial I am on.

    He also suggested that the ibrutinib may not be as effective for me as had been hoped (been on it for about 11 months) and may transfer me to idelalisib.

    I am very satisfied with the professionalism of my specialist.

  • Hi Gbasil,

    I think you are correct: "Am on a clinical trial with ibrutinib, hence this may be the reason for the CT scan."

    I have been treated 3x for my CLL and will start treatment 4 in 2 weeks. One treatment was on a clinical trial and I had 15 CT scans. All my other treatments were done without regular CT Scans, they were only used when something else needed diagnosis.

    My 4th treatment is partially driven by blocked Eustachian Tubes caused by swollen Adenoid - which turns out to be enlarged just like my Lymph nodes. We did a CT scan to confirm that.

    BTW- I did learn in my clinical trial, that I could refuse some scans, and with advice and support from my doctor, the trial sponsors accepted my reducing from 4 or 5 scans per year to 2 scans per year.

    So you can politely challenge your doctor and the trial rules to reduce your x-ray exposure, and see if you can negotiate a reduction. Especially if you are not having problems or quickly changing CLL symptoms.


  • Hi Len

    Sincere thanks for your helpful comments. I trust your 4th treatment is successful.

    Does anyone know the approximate number of CLL patients in Australia, who are on an ibrutinib or idelalisib trial?

    Many thanks


  • Hi Basil

    I hope you won't mind me popping in on your post to wish both you and Len all the very best. Len as he starts on his 4th treatment.

    Good luck guys


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