Dos’ & Don’ts’ for CLLers.

[nuji]

I’m a bit apprehensive about this post, but it’s about a wish list of dos and don’ts that dummies like me would cherish.

It would be great if people in the know of things would build up on something like this. Perhaps segregating this wish list into W&W group and Treatment group may also be considered.

The Dos

1. Consult your CLL specialist and doctors before you follow any advice, including the ones here

2. Share your experience and knowledge in this group and help dummies (like me)

3. Exercise regularly and keep fit

4. Eat the rainbow and eat healthy - fatty fish, fibrous veggies, colourful fruits especially berries

5. Be mindful, meditate, have PMA (positive mental attitude)

6. Alternate day EGCG and turmeric consumption - keep in mind that some may be prone to liver function numbers jumping around

7. Keep vaccinations up to date while being wary of live vaccine - consult your specialist

8. Apart from monitoring ALC, ANC, CBC, Keep checking levels of IgG, IgA, IgH, Vitamin B12, Vitamin D, LDH,

The Donts

1. Don’t be pessimistic. CLL can be controlled

2. Don’t eat unhealthy - especially be wary of processed foods, sugars, and unhealthy fats

3. Don’t overexpose to sun - CLLers pose a higher risk of skin cancers.

4. Don’t take cannabinoids - they help lymphocytes to migrate to nodes, where they get growth signals.

5. Don’t overstimulate the immune system - risk of ALC increasing is high.

I wish that knowledgeable people build on this list.

The million dollar list, in which I wish there are plenty of items - a list of items which enhance immunity without stimulating lymphocyte production. Is there anything that can be boost immunity without stimulating the immune system and WBC count?

Vitamin C?

Vitamin D?

Vitamin B12?

Prebiotics???

Kefir?? Tempeh??

I would be eternally grateful to the admins and volunteers of this group if a ready reckoner of Dos and Donts are compiled and pinned. If there already such a list, I apologise for having wasted your time.

[GMa27]

Not everyone fits into the do's & dont's. For example most suggest no sugar. I eat lots of sugar and it's not an issue. Lots of specialists disagree on the list. Would be nice but it would have to be too individualized. For example my hematologist prefers me not to take a probiotic. She hates fad diets. Supplements are another disagreement. Our disease is so different than others.

[nuji in reply to GMa27]

Thanx GMa27. Agreed one size does not fit all. But I’m sure there are certain things that all agree upon. That certainty list is what I wish could be curated.

I would love to know why docs are against probiotics and supplements. There should be some reason/logic/research behind this. It would be good to know the reason.

I would love to know a list of immunity boosters without help immunity without stimulation the WBC to grow.

Why does you doc not accept supplements? Is it everything that is available

[GMa27 in reply to nuji]

I went to acupuncture & take an otc immune builder- my hematologist smiles & kinda rolls her eyes. She doesn't believe in that. But never said anything about me not going . I did give up my homeopathic remedies during chemo . Ok for D3 & B-12 etc. Definitely did not want me to use probiotics during chemo- the probiotics clean you out- it could have interfered with chemo. She said I was better off without it after. Not sure why but I don't miss it.

[nuji in reply to GMa27]

Thanx for this update GMa27. How was your acupuncture experience? Was it helpful?

Immunity builders - what would they be?

Probiotics - would love to know the logic behind this?

[GMa27 in reply to nuji]

Been going way before my CLL. Love it.

[AussieNeil Partner Administrator in reply to nuji]

Briefly, probiotics are hopefully beneficial bacteria and with a compromised immune system, particularly if we are neutropenic, it's occasionally possible for probiotic bacteria to get out of control in the gut as documented in case studies. It's rare, but it can happen.

With regard to supplements, unless you are deficient as confirmed by a blood test, study after study shows no to minimal benefit from taking them. It's nearly always best to address vitamin deficiencies by dietary changes. With CLL, the common exceptions are vitamins B12 and D (best taken in the D3 form). Vitamin D deficiency is more common with CLL (even before considering reducing our sun exposure, to counter our increased risk of developing skin cancers). There's an accepted correlation between having a healthy vitamin D blood serum level and improved survival statistics, so much so that Mayo Clinic have been running a clinical trial for a few years to try an unravel why this is so.

Vitamin B12 is essential for the production of red blood cells. The most common reasons for low haemoglobin/red blood cells when you have CLL, are CLL bone marrow infiltration reducing production capacity, an enlarged spleen filtering them out before their time and occasionally an auto-immune condition (AIHA). You also need B12, folate and iron, with the latter particularly requiring attention if you have a vegan or vegetarian diet. Some of us may lack intrinsic factor production in our stomach and need B12 injections. Intrinsic factor is needed to absorb B12 in the small intestine.

With respect to point 6, while in vitro testing showed the possible benefit of alternating EGCG and turmeric, this study pubmed.ncbi.nlm.nih.gov/300... found ”the conclusions were little good clinical evidence of efficacy”. Given my analysis of a clinical trial of turmeric in CLL patients here: healthunlocked.com/cllsuppo... I'm not surprised with respect to the turmeric.

A good proportion of those in the phase I and phase II Mayo Clinic EGCG trials did see reductions in their lymph node sizes and lymphocyte count, but the trial unfortunately wasn't long term, because MItsui Nori, the supplier of the pharmaceutical grade polyphenon E, ceased supplying that form of EGCG, instead successfully seeking FDA approval for a genital wart EGCG cream! Dr Neil Kay, one of the principal authors of the Mayo Clinical trials, warned against buying EGCG, "because we don't know what's in it". That's due to the lack of herbal supplement regulation in most countries. Australia does require registration of supplements with our TGA (equivalent of the FDA in the USA. I persisted with EGCG and turmeric for ~10 years. I had to reduce my EGCG due to a serious spike in my liver function tests. I have good prognostic markers, so I've no idea whether it made a difference.

Neil

[nuji in reply to AussieNeil]

Thank you very much for your help.

[SofiaDeo in reply to nuji]

Several reasons why docs can generally be against supplements include 1) there is almost zero standardization. You may be getting 10-100x what is listed on the label, or almost zero 2) the excipients can affect the gut biome, especially in people who choose to take supplements instead of eating a balanced diet.

Lack of standardization is why, as AussieNeil pointed out, the Mayo Clinic ECGC trial was halted. So unless you find a company that actually treats their OTC product like an FDA approved medication, with valid documentation on quality control, testing for purity, etc. many docs aren't interested, or will be dismissive.

[Newdawn Administrator]

You’ll find this guide from one of our volunteers, PaulaS extremely helpful. It’s not do’s and dont’s but suggestions for living well with CLL.

healthunlocked.com/cllsuppo......

Newdawn

[nuji in reply to Newdawn]

Thanx Dawn. It is indeed extremely helpful.