There have been several questions raised on this subject in the past few months.
While not earth-shattering, an interesting programme was screened on BBC1 this evening. Available on BBC iPlayer for the next 4 weeks bbc.co.uk/iplayer/episode/m...
Presented by a medical doctor with input from specialists and output from volunteers.
Neutrophil: lymphocyte ratio (NLR) should be less than 3 *
DO
Varied diet with plenty of fibre, supplement with vitamin D
Regular moderate exercise
Sleep 8 hours
Short duration stress/ massage boost immune cells
DON'T
Junk food, sedentary lifestyle
Sleep less than 7 hours
Chronic stress
Heavy drinking depletes immune cells
* CLL patients may have little control over NLR, but the other DO's we can manage.
Mines a double double scotch followed by a massage and a long sleep!
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bennevisplace
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As you note, the Neutrophil: lymphocyte ratio (NLR) is not relevant to us, because our ratio is skewed by our CLL/SLL diagnosis and not under our control. We should also monitor absolute counts, not ratios which fall into the same dangerous realm as percentages. See: healthunlocked.com/cllsuppo...
The programme did seem to suggest that the measures proposed to attain a "healthier" immune system were all about increasing the subjects' lymphocyte count (hence reducing their NLR). For us this appears to be the exact opposite of what we want. AussieNeil: " None of us want any more CLL lymphocytes!"
So what we have here is a paradox. While we agree that eating a varied diet, getting plenty of exercise and sleep etc are GOOD for us, why should that be? Is it just our intuition, and if not, what is the evidence that these "good" habits are good for CLL patients? Logically, if our primary aim is to put the brake on lymphocyte production, we should make a conscious effort to live on deep-fried Mars bars washed down with copious pints of heavy, slouched in an armchair watching soap omnibuses through the night and stressing about the state of the kitchen.
One way to solve the paradox is if restricting lymphocyte production, and hence CLL cells, is NOT our primary aim. We know the nature of the disease: CLL cells inexorably increase, eventually crowding out other blood cells and exhausting T-cells. We know that, as long as the grim reaper keeps his distance, we will eventually need treatment. Intuitively I can't help feeling that how we weather our disease progression, with its A and B symptoms and opportunistic infections, and how well we respond to and recover from treatment, these are all going to be influenced by basic measures of health and fitness, highly (if not entirely) dependent on having sustained a varied diet, with plenty of exercise and sleep and little stress.
So maybe it's not all about postponing the fateful day as long as possible, but the state we're in when we get there.
Of course it's also about making the most of the journey. To paraphrase Bob Dylan's mother: Happiness is not some place on the road to somewhere, happiness is the road itself.
There is so much we can do and so easy, just sleep, eat well - veg and fruit, seeds, nuts, etc., go for regular walks at least, have a 30sec cold shower every day and take vitamin D.
I know it's not that easy ...but a lot is very simple.
I didnt understand the ratio of Neutrophils to Lymphocytes bit.
My Neutrophils are 4.31 in range 2-7.5 and Lymphocytes are 2.04 in range 1.2- 3.65. Anyone understand that please and can explain what my ratio is please? x
Your Neutrophil:Lymphocyte ratio is 4.3 divided by 1.2 or 3.65, which gives the range of 4.3/1.2 (3.6) down to 4.3/3.65 (1.2). That's pretty good, with ratios either side of 3, which fits in with the fact that you presumably (from your bio and replies), don't have CLL?
Yes thats right I dont. Thank you very much for taking the trouble to reply. I was very poorly last year following years of having swollen glands in neck but they developed into shooting pains into my chest. I looked grey and suspected CLL however the urgent throat scan showed Sjogrens type damage. I have followed the forum ever since as its full of interesting people and knowledge. I hope you dont mind me quietly reading ( usually) x
They are deerhounds. It's a stock photo. We have a 9 year-old female deerhound who is even slower than I am, and a 3 year-old male deerhound/ greyhound lurcher who is just as athletic as the hound(s) pictured.
I intend to watch the programme tonight, but in meantime can I ask what we do about Vit D. I'm on Acalabrutinib and don't want to take anything that would inhibit its work. There was a video on Vit D embedded in a post responding to Chaya's highlighting the relationship between covid and Vit D. An extensive piece of work and worth watching. In summary from worldwide research there appears to be country wide links between covid deaths and insufficient vit D. Happy for my family to be taking 5,000ius per day as a supplement, but what level should us CLLers be taking, if at all.
Best to ask for a blood test re your vitamin D levels, Eucalyptus. My GP agreed to test mine. They were low so she prescribed a specific dose for me, but suggested I buy it from the chemist, as it was much cheaper than what the NHS pays. It certainly was very cheap. I am on Ibrutinib and my haematologist said it was fine for me.
I believe in the UK, vitamin D is going to be offered free to certain people anyway. Not sure what doses they're giving.
NHS is supposed to be sending vit D3 to elderly and vulnerable folk. It transpires that you have to apply BEFORE 11 JANUARY for 4 months' supply. I read somewhere the daily dose to be supplied is 400 IU. That would do me for 3 weeks nhs.uk/conditions/coronavir...
P.S. My GP prescribed 1000 iu (international units) Vitamin D3 daily. That's 25 micrograms. But it's best to be tested and find out what's right for you.
Yes as PaulaS suggests, get your levels tested if possible. Our GP practice is not doing them pro tem, but should not be difficult if you're being monitored every few months anyway. Ideally you should test, dose for a while, re-test until you get the dose right - everyone's different.
Before during and since having treatment with FCR, after nearly 14 years on W&W, I was taking about 2,000 IU/ day of D3 (which you probably know is more potent than D2). My haematologist had no issue with that. Acal, ask your haematologist if D3 at 2,000-2,500 IU/ day is OK then get a blood test whenever you can and you can always go up or down with the dosage. 5,000 IU/ day should be fine for adults but for young children would be excessive IMO.
While I doubt there would be enough to be of concern about the amount of glycyrrhizin in what you are taking, there are concerns for those with CLL for some of the other ingredients you list, particularly anything specifically aimed at boosting the immune system, as these products nearly always work by stimulating lymphocyte production. See my lengthy reply to this post for details: healthunlocked.com/cllsuppo... Specifically, Astragalus and Elderberry are a lymphocyte stimulants, as if we need any more CLL cells!
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