New to CLL in Canada

[Champlain]

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?

[Cllcanada Top Poster CURE Hero]

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?

Hope

~chris

[Champlain in reply to Cllcanada]

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.

[Cllcanada Top Poster CURE Hero in reply to Champlain]

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...

~chris

[Rosiehiker in reply to Champlain]

Hi

I am also in Southwestern Ontario. 7th year in Watch and Wait. My hematologist released me to my GP after 2 appointments. Reading all these posts from all over the globe has made me realize that the protocol for me has been pretty lax as well. My wbc and lymphocytes not too bad but my igg, iga, igm are poor. Much more fatigued than I used to be

[annabelle63 in reply to Cllcanada]

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

[Champlain]

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

[WestCoast_1]

Hi Champlain,

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

[Dpop]

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

[Hidden]

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.

[newyork8]

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).

[CJinxy]

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

[ap64]

Welcome from Ottawa.