Living with CLL_SLL

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Updated: 6 hours 27 min ago

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...

New to Site Imbruvica & Rituxan how are they tolerated together.

22 February 2019
I’m new to the site but not new to CLL. I was diagnosed in 2003 and was watch and wait. Had treatment with fludarabine.. Was in remission for 10 years. Then back to watch and wait. Started imbruvica Jan 2019..first two weeks WBC came down...last two weeks the number went higher than when I started the medication. Now am going to start rituxim in conjunction with imbruvia. How these two drugs are tolerated?
This site is so helpful I have learned quite a bit and it has answered many of my...

Drinking alcohol while on Imbruvica

18 February 2019
Great to come across this website as I too am on Imbruvica
I started two months ago after unsuccessful chemo. I am on three tablets a day and so far no side effects
I have drank alcohol since I started, but if I get the okay to travel for a holiday, I was wondering about having a glass of wine with meals.

CLL chemo more than 10 days fever!

30 January 2019
Hello! I have CLL and had my first FCR chemo except not Rituximab but Ofatumumab. Everything went well but since 10 days I have extreme high fever 39,9-40 degrees and itchy everywhere on my body and under my feet and hands. The meds for itchy help but i feel its not gone but the fever is still there and getting worse despite the antibiotics I got. Im not sick nog cold or pain whatsoever. Waiting for bloodtest but need to starts tuesday again but Im so afraid it will get worse?! Does anybody...

Imbruvica with Hep B

28 January 2019
Three years ago when I was diagnosed with Non Hodgkin Lymphoma the first doctor went out of his way to protect my liver. In 1982, 35 years ago I had a full blown case of Hepatitis B. I was tested for Hep B antibodies before I went on the first chemo medication. Along with the first three chemo drugs I took Entacavir to be protected from the Hep B coming back. I had the antibodies but I did not have chronic Hep B. At some point I changed to another doctor in the practice. My original doctor took...

Inflammation, CLL and gluten

14 January 2019
I have been diagnosed with CLL in the last month. I had high inflammatory markers in my blood prior to my CLL diagnosis for several years along with degenerative joint disease. It had been recommended to me, pre CLL diagnosis, to eat gluten free because it reduces the inflammation in your body caused by wheat and other grains. I did that for 30 days but didn't really notice a difference with pain in my body resulting from inflammation
Questions: 1. Can inflammation in the body cause...

CLL diagnoised in May 2018

04 January 2019
Diagnosed in May 2018. New to the group and have been unable to find any support group. It is strange that people say you are lucky it is a mild form of cancer, really? I worry more than I ever have. I served on the DMZ of Korea(Army) 1969-1970. I was exposed to Agent Orange for 13 months but proving it to the VA is a joke. Long story and do not want to bore anyone. Still going through the maze of VA bureaucracy.
I have read alot about the disease and find out it is a rare cancer and is only 2%...