Living with CLL_SLL

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Updated: 1 hour 12 min ago

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...

Which popular diets are fads?

23 October 2018
Found this recommended check list for assessing whether a diet was a fad and considered it could equally apply to diets promoted to help fight or cure cancer:
"Each year, new weight loss diets appear that promise to reveal the ultimate secret of success ? if only you buy the book, pills or potions.


When assessing whether a diet is a fad, ask yourself, does the diet:

- contradict advice from qualified health professionals?

Complications from Surgical Mesh (Hernia surgery)

20 October 2018
Has anyone with CLL had any complications arising from a hernia surgery using surgical mesh? I have surgery scheduled and am quite concerned given all the negative news on the use of this product and wonder if it's doubly problematic with CLL?

From peaceful coexistence to potential peril: the bacteria that live in and on us

20 October 2018
"Bacteria are everywhere, including in and on our bodies.

Bacteria can be good. Our gut is full of bacteria, which help digest food. Fermented foods such as sauerkraut and yoghurt are made with, and contain, millions of bacteria.

But bacteria can be bad, too. They may infiltrate our skin and other defences and get into the wrong places, causing infection. There are several possible reasons for this, and they depend on the nature of the bacteria themselves, the types of...

After Venetoclax

17 October 2018
I was diagnosed with cll 12 years ago. My age is 68. I went through all treatments, more or less, had a stemcell transplant and went on ubritinib 2 years ago. That did not really work anymore when i had to stop taking it for 10 days because of a prostate operation. Then, in April 2018, they started me on Venetoclax. The doses were upped according to protocol, but when i was on 400 mgr after 4 weeks my blood counts went down dramatically, so the dosis was lowered to 200, which I am still on now....

The Impact of Diet on CLL

05 October 2018
Hello everyone,
Please take a look at my article titled 'The Impact of Diet on CLL', which was published in CLL Society's Tribune.

Leg and arm cramps

02 October 2018
I haven't had any real symptoms like fevers or sweating, but I am having problems with cramps every once in a while in my legs and arms, especially at night. This has been going on for the last couple of years and I wonder if it is linked to my CLL? I was diagnosed a year ago in July and am waiting on a second opinion to start treatment on either chemo for 6 rounds or ibrutinib. I went through the CLL society's free 2nd opinion link. mAny thoughts on either would be helpful I think. Thanks...


30 September 2018
I?m on ibruvica since dec 2017 and i?ve a TP53 mutation... a lot of infeccions almost every month and right now a cronic herpes ... Anyone? Horrible ...

Husband is having brittle nail issues with Ibrutinib? How have others dealt with this?

27 September 2018
My husband has always had great nails, but has been on Ibrutinib for 6 months, and his fingernails and toenails are breaking....any treatments out there that help this?

CLL Society Patient Support Group October Meetings - Rockland County, Long Island, New York City, Central New Jersey & Philadelphia

26 September 2018
The Metro New York, New Jersey & Philadelphia area has a series of Patient Support Group meetings scheduled in October.
Oct 4 - Rockland County NY-
Oct 11- Long Island NY-
Oct 13- Philadelphia, PA-
Oct 14- New York City -...

A strong immune system helps ward off colds and flus, but it?s not the only factor

21 September 2018
Your skin and saliva are key barriers to infection and form part of your immune system, along with cells in every tissue of your body, including your blood and your brain.
The cells that make up your immune system need energy too, and when you?re low on juice, they?ll be on low-battery mode. This is when our natural immune defences are weakened and normally innocuous bugs can begin to cause strife.

Our immune system requires a lot of energy to defend our bodies. Feeling tired and achy,...

NEW Central New Jersey CLL Support Group

18 September 2018
NEW Central New Jersey CLL Support Group

Travelling to Australia

12 September 2018
Hi everyone, I am traveling to Australia in January to visit my daughter and haven't travelled since my diagnosis over a year ago. Am going with wbc of 39k and alc of 28. I know I will be extremely tired but will be well looked after when I get there.
Will I be able to get travel insurance and has anyone any tips on travelling with CLL ?
I am a bit nervous about it.

Facebook profile - Make Blood Cancer Visible

07 September 2018
If anyone wants to change their facebook profile picture to have the Make Blood Cancer Visible logo you can go to and Search: Blood cancer.
Easy way to spread the word