Hello from Canada

Hello from Canada. I'm a 58 year old widower with a career (retired) in healthcare. I was diagnosed with CLL in mid-December 2015. I had recurrent illnesses, and couldn't seem to get better which was unusual for me. After my initial consult with the hematologist in the spring of 2016 I've experienced increasing symptoms which are really slowing me down:. Fatigue, insomnia, aching shin bone pain and memory loss. I'm currently in the watch and wait phase, but really feel dreadful some days. My WBC is 14.4, and lymphocytes are 8.7

When should I be looking to initiate treatment?

10 Replies

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  • Welcome Bill

    Usually CLL is not considered to be too progressive until the Absolute Lymphocyte Count [ALC] crosses the 30K mark, an arbitrary startling line for closer monitoring with a view to tracking your LDT or lymphocyte doubling time... once it doubles in under 6 months then other symptoms, like fatigue, weight loss, night sweats, falling platelets and hemoglobin counts, expanding nodes etc... are brought into the picture and this often triggers a CTscan and pretreatment discussion...

    Treating someone with an Absolute Lymphocyte Count [ALC] of 8.7K would be very unusual indeed, from my experience.

    Perhaps you need a full physical assessment by your GP to address some of your symptoms...?

    Also, let us know your province because drug availability is a patchwork in Canada, and there are differences in prognostic testing etc, from province to province...

    ~chris 🇨🇦

  • Hey Chris. I'm in GTA Ontario and am being followed by the Juravinski in Hamilton. Any tips that are Canada specific are welcome.

  • JCC is great... might be interested to know that idealisib was funded last week under Ontario's Exceptional Access Programme, EAP,...so both idealisib and ibrutinib are available and funded for second line if and when needed.

    ~chris

  • Significant fatigue (ECOG PS >/= 2) attributable to CLL is one of the independent criteria for which therapy is indicated according to the iwCLL. Significant fatigue can occur even at low levels of disease and can substantially affect quality of life. A thorough work-up for any other cause of your fatigue would need to be completed before considering treatment for CLL solely on the basis of fatigue.

    If treatment is considered you may want to request imaging with MRI rather than CT if you have concerns regarding radiation exposure, however I don't know if that is an option in Canada.

    I understand how debilitating CLL related fatigue can be. It was fatigue that prompted the work-up that led to my CLL diagnosis. If your symptoms have worsened since you last saw your hematologist, it may be time to see him/her again as well as your GP.

    Keep us posted and I hope you begin to feel better.

  • I appreciate your insights. Thank you

  • I spent 2 years fighting the government for CPP compensation for fatigue and lost.. it is not quantifiable... they won't discuss it... period.

    I finally managed to get on long term disability with employer private insurance, but the financial toll was staggering.

    In Canada , you must have progressive disease and then perhaps fatigue or other B symptoms to treat... fatigue is not a treatment indication, in any protocol I'm aware of in Canada.

    ~chris

  • When to begin treatment, and the type of treatment chosen, is unique to each patient. It is likely best discussed with your CLL specialist. Hopefully, you are under the care of someone well versed in CLL who is knowledgeable about appropriate tests, lab levels, symptoms, and the wide range of available treatments that are now available. I wish you well.

  • Thanks for sharing your comments

  • Hi Bill. Like you, my ALC is low. I do however suffer dreadful fatigue. Life is hectic, so don't know whether to blame that or the CLL.

    Or maybe the extremely sweet tooth doesn't help!

    Peggy

  • Not for a very long time ! Hopefully you will not need any treatment !

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