Living with CLL_SLL

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Updated: 48 min 18 sec ago

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%...

Muscle mass...

26 December 2018
Hi all,
I found this article on the correlation between muscle mass and prognosis in people with cancer.
It doesn't mention CLL specifically though Non-Hodgkin Lymphoma does get a mention. The take home message is that low muscle mass worsens your prognosis.
If you need inspiration, go to the YouTube channel for a remarkable young lady called Emily Hayward. She was a personal trainer who survived 8 years with meta-static melanoma that had...

Leukaemia Care CLL Support Groups

14 December 2018
Leukaemia care have announced the dates for their CLL Support groups for 2019 in Nottingham and Cambridge. Follow link for dates.

Imbruvica plus alcohol or amitryptiline yields Afib?

12 December 2018
After a few weeks on imbruvica, I had very bad arrhythmia attacks a few nights in a row, and had to quit. I am now switching to calquence.
I have two drinks every night. I googled and learned that alcohol can trigger Afib. So, I wonder if drinking plus imbruvica triggered the arrhythmia. I have never had a heart problem, and an echocardium and cat scan shows everything is in good shape.
I would be interested in hearing from other who continued to drink. Did you experience new onset Afib with...

Please ask your friends and famly to give blood this holiday season

07 December 2018
Canada Blood Services

Australian Blood Services

PLEASE REMEMBER, if you have had FCR, FC, bendamustine/rituxan [BR] then any blood you are given as a CLL patients MUST BE IRRADIATED with gamma radiation, otherwise you could die of leathal transfusion...

CLLSA London Conference Nov 2018

24 November 2018
The Fourth of this years CLLSA conferences was held in the ETC venue in Pimlico for the second time in 3 years. 85 members enjoyed presentations by two expert speakers from Royal Marsden Hospital and UCLH. There was also the traditional member stories, this time delivered as a delightful double act. David Innes the association chair then gave an update on a successful year for the association and plans for the future while trustees ran a workshop to find out more about what members want and...

Health Check: should you take probiotics when you?re on antibiotics?

14 November 2018
Following on from the Israeli research that Probiotics are mostly useless and can actually hurt you: , a recent The Conversation article notes that "This research exposes a perhaps unexpected truth: we still don?t know what types of bacteria are truly beneficial or even what constitutes a healthy microbiome.
The answer is unlikely to be that individual bacterial strains are...

Need info on raising red cell count

10 November 2018
Hello I have been here on and off for about a year. I know you are all going through your individual health issues and I hope and pray you find the answers you are looking for. I joined because my brother was diagnosed with CLl q11 a little over three years ago. He is 55 years old and had been in great health and then diagnosed with this. His red blood cells continue to drop and I?m not sure what the Dr will try next. Is there anyone out there having a difficult time keeping your red count up?...

Lymph node question

07 November 2018
This is Sealbeach.
I have an enlarged lymph node in my groin that the doctor says is pressing on a nerve. This is so painful. Has anyone else experienced this?

Unmutated been WW 10 years

05 November 2018
A good-ish story: I have unmutated CLL, diagnosed 10 years ago when I was 52. I upturned my life about five years in, turned to macrobiotics, meditation, less stress. Recently I left a bad marriage. I haven't needed treatment all these years. So the WW can last a long time even with unmutated. Alas, now my WBC is up, my spleen is 13 cm and I'm showing signs of slight anemia. Doc says it's time to treat. I've got six weeks before labs come back to tell him which drugs are better. Until then, I'm...