Living with CLL_SLL

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Updated: 10 hours 39 min ago


03 August 2019
I completed FCR a year ago now. I figured my immunity is low but have avoided common cold, etc. 3 - 4 weeks ago I started having intermittent fevers, and when I got to my haematologist found my haemoglobin was dropping. I entered hospital via the emergency department (Australia). Eventually parvovirus was the diagnosis. Was told a viral illness can present differently in an immune suppress individual and are harder to test for. eg I had no rash at all, but curiously parvovirus can cause the...

Walking as much as I can

30 July 2019
Managed to walk the seven sisters yesterday on a lovely sunny day. Over the years since diagnosis I have managed to keep walking
Photo for those not as lucky and not able to get out and about. Seaford Head in the distance

With a CLL diagnosis, knowing more about your immune system could save your life!

11 July 2019
When we are diagnosed with CLL, we need to appreciate that we are immune compromised to some degree. Our risk of infection tends to increase over time and during treatment, whether it is chemoimmunotherapy or the newer non-chemo treatments. We need to learn how to reduce our risk of infection, because infections tend to occur more often and take longer to recover from and we are more likely to need antibiotics. Getting up to date with (non-live) vaccinations can be a life saver. When our...

For the Nails

11 July 2019
I tried to post this in Junibird’s question about nails, but could not copy the picture into a response. ( I can be tech challenged at times). Anyway, this has been the only thing that has worked for me. It has both Biotin and bamboo in it. One coat by itself, is almost clear and not thick. Can order from Amazon, less than $10.00 (US).
BeckyL USA

Is it OK to use CDB oil when I have CLL?

11 July 2019
Is it fine to take cbd oil to reduce inflammation while I am on the watch and wait for CLL. I have been watching and waiting for 12 years and am not taking any drugs to battle the CLL. I have a lot of arthritis and joint and back pain because of various reasons.
Does anybody think CBD oil would be ok to take?


Eye styes and Imbruvica, are they related?

04 July 2019
Eye styes and Imbruvica - I have had two eye styes since I started IB in February, is this a unusual side effect of it when taken for CLL? The last one in May, started out eye stye, then later back of head itching terrible, and rash around eye, then other eye swoll up, they said it was an allergic reaction, plus I just didn't feel good. Found out after a week, they were wrong it was shingles. Now I have been very tired last several days, and noticed another stye came up on my eye yesterday,...

Had your flu and pneumonia vaccinations? Whoopi Goldberg's Pneumonia Nightmare - Talk show host recounts near-fatal sepsis infection

21 June 2019
I don't post about celebrities as a rule - they get more than enough media attention, but this article from Medpage Today caught my attention because of the classic symptoms of a sepsis infection on top of pneumonia:
'...her primary doctor, Rodriguez, who told the audience that when he spoke to her: "I could barely understand Whoopi. Her teeth were chattering, she was gasping for air." When she told him all she wanted to do is lay down and go to sleep, he became even more concerned. "I...

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.