Living with CLL_SLL

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Updated: 7 hours 2 min ago

Is neccesary to make a Bone marrow biopsy every year during the ibutrinib monotheraphy treatment?

18 June 2019
My brother is not in a trial, and I Wonder if he needs to make a Bone Narrow biopsy this year? He he is on monotherapy imbruvica treatment since july 2018, i mean, 12 months on treatment. Thanks!!!!

Balance issues

06 June 2019
I was diagnosed with CLL about 18 months ago. Early stages so not having any treatment yet but recently have started to develop a weakness on one side and also started to experience balance issues. Doyou think this is at all CLL related?

CLLSA Members Conference Bournemouth May 2019

04 June 2019
A summary report for the Bournemouth meeting in May written by Olga Janssen has been added

The summary has some of the slides available at the bottom of the article the videos and missing slides will be added as soon as they are available.

Strange dizziness - anyone else get this?

26 May 2019
I've been W&W for a couple of years, but the last time I was checked the consultant was concerned about the WBC count (and enlarged spleen).
And generally I'm doing ok, but I have been getting VERY dizzy lately. It's almost like vertigo. I don't even have to get up fast and this wretched dizziness hits - and hard. I have no infections, my ears & hearing are fine. And I'm concerned. Is it the CLL? Has anyone else suffered like this?
Thanks in advance, and good luck to us all.


17 May 2019
Been thinking what he said and I think he said he was struggling to get a sample...

Bone marrow biopsy

16 May 2019
Had bone marrow biopsy earlier....he struggled to get the needle in...I'm so scared now that it is packed with cancer cells. Anyone had any experience of this please?

These 5 foods are claimed to improve our health. But the amount we’d need to consume to benefit is… a lot

15 May 2019
'Food gives us the nutrients we need to survive, and we know a balanced diet contributes to good health.

Beyond this, many people seek out different foods as “medicines”, hoping eating certain things might prevent or treat particular conditions.

It’s true many foods contain “bioactive compounds” – chemicals that act in the body in ways that might promote good health. These are being studied in the prevention of cancer, heart disease and other conditions.

But the idea...

Stay informed

09 May 2019
Living with CLL/SLL after treatment (40% successful) with Leukeran/Gazyva combination for 7 months.

Cramps with Ibrutinib

18 April 2019
I have just finished my third month on Ibrutinib and have started suffering cramps in hands, arms and legs. Is this now to be a regular side effect.?
Also I get intermittent itchy spots on my upper body which are controlled by Fucibet ointment.

Neck Ache

15 April 2019
Diagnosed in 2012 at the tender age of 48 and still being watched while waiting.
I have swollen lymph-nodes in my neck, on both sides now, which, since last December are causing me constant neck ache. This makes sleeping difficult and causes me to grind my teeth and general tension. Hospital thinks nodes are too small to cause this...
Any thoughts or suggestion on achieving some kind of relief?

diagnosed SLL in 2014

17 March 2019
I was diagnosed SLL in 2014. Did not have any treatment - was on wait and watch. All this time my Lymph nodes keep growing everywhere. Check up and Blood test -every 3 month, couple CT scans during this period.
LDH level slowly but stable going up .

Now looks like it is time to be ready for treatment. Scheduled appointments for CT and another CLL/Sll specialist .

Does anybody have similar situation?

In Limbo

10 March 2019
I was diagnosed 7 years ago, at the age of 48, with Chronic Lymphocytic Leukaemia. Over the years I have become accustomed to the unfazed response of the haematologist at my regular blood check-ups: all stable, nothing to worry about.
At every occasion though I have been reporting on symptoms, from fatigue through abdominal and muscle pain to blurred vision and mucus build-up, which are affecting me and have contributed to a decreasing quality of life and loss of job. And yet none of...

My 28-year CLL Journey - By Glenn Sabin

04 March 2019
[Originally published in the CLL Society Tribune:]

In the fall of 1991, at the age of 28, a routine physical with my primary care physician swiftly changed from its predictable pattern and transformed into a shocking diagnosis of Chronic Lymphocytic Leukemia (CLL).

I was given a dire prognosis: six months to live.

Bruce R. Kressel, MD, a Washington, DC based hematologist, now associated with the Johns...


03 March 2019
Hi I’m enquiring on here as I’m stuck on what I can do my boyfriend was diagnosed with Cll March last year he’s on watch and wait recently he’s been to the doctors they found he’s has swollen lymph nodes under his jaw she told the oncologist but they says they don’t need to see him as his bloods keep rising his appointment is not until Christmas he has to wait a year the doctors are keeping an eye on him He has a lot of swelling in his clavicle area and swelling patches on his face is there...