Living with CLL_SLL

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Updated: 2 days 15 hours ago

CLLSA Newcastle meeting videos

17 October 2019
for those not subscribed the videos from the Newcastle meeting are available on YouTube. ( search cllsa Newcastle)
main talk by Dr Scott Marshall

SLL, Starting Venetoclax, Night Sweats

11 October 2019
Hello, I’m new to this forum. I came across it while googling info pertaining to my Husbands SLL. Reading through the questions & responses from everyone has been a Godsend. It helps when you talk to someone going through the same experiences.
My husband was diagnosed in 2012. He is 58 yrs. old
He recently ( almost 2 wks ago) went off Ibrutinib and started taking Venetoclax.
Right away he developed a painful lump below his rt. armpit and along rt. Jaw.
The armpit lump has gone away and...

Optimal Level

25 September 2019
Hey guys I have a question.. I have CLL for about 1yr now, ive dealt with mood swings, major fatigue, dehydration. I also have type 2 diabetes and ive suffered from night pains due to my neuropathy!! I went to the docs today and everything looks good..i take inbruvica as well. So my question is What do I need to do as far as vitamins and supplements to keep my body at an Optimal level..MEaning hair, skin, energy, attitude etc..etc. Cause I work as a server as well so its very physical. im only...

Trying to explain to co workers and friends what im going through but it is failing it seems at times.

21 September 2019
How to make friends and co workers understand what you are going through? This has been a journey for me as well.

News from iwCLL, what it means for you

17 September 2019
Dear CLL friends. In Edinburgh, Scotland this weekend CLL experts from around the world will meet to compare notes. A week later, Sat. 9/28, Patient Power will produce a live town hall meeting for patients and care partners featuring three of those experts. Carol Preston, a CLL patient-advocate is the host. It will originate from near Dallas, Texas but you can watch online from anywhere in the world. It's free and we want your questions! To sign up go to:...

Can I get a flu vaccination ?

15 September 2019
I have CLL and take Imbruvica. After 10 cycles the Imbruvica produced excellent improvement, near normal range WBC 11, platelets 175 . Question: Can I get a flu vaccination ? If yes, the extra potent ?

Feedback on my new treatment options, what to do?

20 August 2019
Hi everyone. So here goes: in short, after a long period of watch and wait, I have been told I need treatment again. Was always told I would eventually need treatment again, but still a shock, particularly as I feel well. Ran my first ever London marathon this Year! Will be running Great North Run next month.
my brief CLL history:
Dx'd age 39, w and wait, eventual CR , lasted around 5 years, felt well most of this time, kept rnning, kept raising money for charity...not surprising to say...


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,...