New to CLL in Canada

I have been diagnosed with CLL in April 2016. At this time it is WAIT & WATCH. My lymphocytes blood count is around 200 with an enlarged spleen, enlarged lymph nodes in the neck. I am experiencing sharp pain on the side of the neck and also near the collar bone, is there anyone else experiencing the same symptoms? I am wondering if this would be the swelling of lymph nodes would cause that! I really appreciate any feedbacks you may have.

Also for the ones who already started medications/treatments, at what level lymphocytes blood counts were you at?

11 Replies

  • Hi and welcome...fellow Canuck

    I'm an 18 year veteran Canadian CLL patient advocate, if I can be of help, let me know...

    Most of Canada has similar treatment availability, but Quebec is a bit different...

    The symptoms you describe are fairly typical in CLL, what province are you in, because it is wise to consult a CLL specialist prior to any treatments and we have a few in Canada... but it may involve travel, and out of province consultations can be problematic...

    Do you know if they have run a FISH panel? Have you had a CTscan or bone marrow biopsy?



  • Hi, I am from South Western Ontario. I did have a CT scan but not a bone marrow biopsy, should I be requesting one at this early stage?

    A FISH panel? first time I hear about this!

    I really appreciate your prompt reply and knowledge, it is greatly appreciated.

  • I spent my youth at UWO and lived in London and Chatham/Windsor for a number of years...

    FISH panels are used to look at genetic damage and clinically they are done closer to treatment than diagnosis, because they can change... this is a quite new revelation.

    BMBs aren't done that much in Ontario... I have never had one...

    Best places for a second opinion, is Juravinski CC in Hamilton, Sunnybrook and PMH in Toronto... all have a number of noted CLL doctors... considering your Absolute Lymphocyte Count [ALC] and if nodes are starting to be painful a second opinion soon might be prudent...


  • Hello Chris. I'm in Toronto. I'm stage O and have been for one year. Do you know if they have meetings here?

  • Thank you for the information. I am 71 years and live in the Sarnia area. I will request a 2nd opinion. I am experiencing extreme fatigue, some days are worst than others; I also experience some sweating at night although some nights there is none. I am told to watch for that symptom: sweating

  • Hi Champlain,

    Welcome from a fellow Canadian. Diagnosed Oct 2015 W & W.

  • Welcome from a Canadian west of you.....diagnosed July 2015, stage 1 and W&W.

  • I'm in the UK and I started treatment when lympocytes were 265 but that wasn't the reason to start treatment. My HB was falling. As said by many before its not about counting numbers. I had no swellings, lumps ad bumps or night sweats.

  • I had lymph nodes behind ear swell for a few days with great pain. They later went down with no treatment. One MD said it might be a virus. I think we have 700 lymph nodes with 100's in the head region. I think if lymph nodes swell quickly a MD visit is warranted. I tested for mastitis (negative).

  • And hello from another Canadian! My husband diagnosed 2009 and undergoing treatment now. I can't say enough about this site and the people on it, they are knowledgeable, compassionate, supportive and encouraging...... Welcome

  • Welcome from Ottawa.

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