Diet and CLL

[Adlucy]

I have always thought I have a healthy diet but yesterday when speaking to the doctor after a blood test to confirm that I was no longer neutropenic, I queried my Albumin result. She said I should eat more protein ( I am neither vegetarian nor vegan) and also exercise more to lower my BMI. I normally average about 5000 steps a day. I can't go swimming as I did before I was diagnosed. That is out because of infection risk from sports halls and swimming baths. I just wondered what diet people follow.

[Vlaminck]

What about your bloodwork triggered doc's comment? Too much/too little albumin? I don't have your answer but FWIW, I eat mostly vegetarian but meat probably once/twice/week. I have since long ago (before diagnosis) often had high albumin over globulin ratio, and docs always shrugged it off. (Shortly before diagnosis, the immunoglobuin was lower than chart. ) Now my tests only show albumin, not globulin or ratio (wonder why). Anyway, would be interested in hearing what you figure out.

[scryer99]

Beer and barbeque for me.

Maybe a little less beer since I've been on treatment - don't have the taste for it and I don't feel great after alcohol these days. And I do grab a good salad if it's on offer and eat some vegetables. But short answer: no special diet, eat what I want, which tends to be heavier protein meals and simple carbs with fat-based condiments.

I do exercise as I can, which dropped off quite a bit in the pre-treatment runup and treatment ramp but now is back up to maybe 40 minutes a day of lower-intensity biking and some weight work now that spleen is a little better.

You will hear lots of opinions on diet and particular foods. It's been a contentious subject at times here. Just remember two key facts:

1) the *evidence-based* recommendations for exercise and cancer are pretty clear: every little bit helps. High BMI is associated with a host of negative health conditions.

2) the *evidence-based* recommendations for diet and cancer are almost nil. Don't eat too much, is about it.

In CLL, no starfruit or grapefruit or Seville oranges if you're on certain types of treatment. But that's a drug interaction issue, not a cancer diet recommendation.

Nutrition is a space where the study work tends to be low-n, poor quality, non-replicable studies with major, major bias. There's lots of anecdotal discussion out there and piles of recommendations. I can say every time I've dug into those, the evidence does not stand up. That doesn't mean someone out there does not have a good answer. It does mean that many times, the "evidence" is clearly provided by people with a financial interest in getting you to buy their book/app/supplement.

Think back on nutrition's historical recommendations. Butter was supposed to be terrible for you, but hydrogenated oils turned out to be far worse. Eggs were supposed to be terrible for you, until they weren't. Saccharin was fine, until it was carcinogenic. Low-fat was great, then low-carb was great, now keto is great.

My opinion on this is the stress of worrying about all this stuff is going to kill you far faster than any diet will, and it will make you miserable to boot. Don't eat too much, and exercise. That's it.

[BWHR in reply to scryer99]

This is certainly just your opinion, because to say that there are no links between diet and cancer is just plain wrong. Perhaps it is the case that there are no long-term studies linking certain dietary choices to CLL, but there is plenty of good evidence that certain foods increase inflammation in the body, and inflammation is not good for any disease, including cancer.

I would recommend that anyone do their own research on this topic. Glenn Sabin’s website has some good information on cancer and nutrition science.

glennsabin.com/cancer-and-n...

[MisfitK]

Was the doc concerned about your overall BMI related to your overall health?

If so, you may want to food journal for a week or two and see if you are getting appropriate levels of protein, even as a meat eater, in your overall calorie count and see if you are eating a higher level of calories than you expect. Pay particular attention to fluid calories b/c those tend to be the ones we unconsciously don't even realize we are taking in.

Once you have documented what you're eating, you'll know better how to go forward - memories for food tend to be hazy, so the best way to know how you eat and how it affects you is to document, document, document:).

[Shedman in reply to MisfitK]

Albumen - is there any indication you've had frothy urine (proteinuria) and losing blood protein this way?

Important to keep an eye and pursue doctors/tests if it happens; a rare event can see CLL cause kidney trouble.

As protein is relatively unintuitive (100 grammes of meat/fish does not give you 100g of protein) .. worth measuring and keeping diet notes for a few days or a week, looking up/calculating approximate protein intake..

Only then will you better know numbers.

[Sepsur]

periodically I’ve had steroid induced type 2 & this combined with acute neutropenia - at those times, my diet was hard to manage - especially with the added complications of other people dietary requirements not being as strict as mine - and also no one wanted to follow my diet then.

I love food, good food especially- varied diet - loads of fruit, veg, some fish & white meat, very rarely red ( pork normally). Everything in moderation but I don’t drink or smoke or take drugs where i can help it ( where possible). Don’t believe in faddy diets but each to their own. Drink plenty of water, love coffee, tea - don’t drink sodas or eat American fast food - but like the occasional good fish & chips.

[Jacksc06]

I eat a varied diet. Everything in moderation.

[peghip]

I'm not sure why the confirmation you're not vegetarian or vegan. There are plenty of protein options in both.There is at least one reply stating the frequency of eating meat. Meat isn't the only source of protein. Protein foods include fish, eggs cheese, nuts and pulses (lentils and other beans).

I generally have a varied diet but eat around 200g of protein a day from the list of protein above. Red meat generally about 113g a portion and this applied to fish and chicken too.

One of my favourite meals is tomatoes, onions and cashew nuts fried and mixed with brown rice, its tasty and full of protein and no meat.

Beans on toast is a frequent breakfast or lunch and with brown bread it is another protein laden meal at least equal to a steak.

[Big_Dee]

Hello Adlucy

I follow healthy balanced diet with moderate exercise. Has worked for 6 years.

[sportage21]

The Mediterranean diet seems to get high marks from most credible sources. It's the one I follow for the most part. I'm 80 and still active and in decent shape for my age.

[Lenny123]

This is an obsession of mine, not just for cll, but what is the optimal diet. other commenters have very nicely laid out the difficulties in sorting out the studies, which are mostly flawed.

Couple of solid takeaways:

- with the wonderful research, study ongoing, we will undoubtedly be more confident in recommendations at some point in the future, 5, 10, 15 years. but likely too late for us. so, for now do what is unlikely to hurt, and likely to be of benefit. and do not worry too much about the outcome.

-As we age, nutrient absorption is not as efficient( excepting cheap calories!), so do use supplements wisely. What supplements? a good quaity multivitamin. Consider vit D, 1000-2000 units daily.,fish oil. Consider Magnesium/Pottasium. Why these/ because a multiviamin likely prevents gross deficiencies. the others are deficient in modern life, eg. Vit D which is low, as we are more sedentary, hardly go outside for sunshine anymore, statistics show epidemic low levels.

We are naturally Omnivores. Vegan, vegetarians can do fine but do need to really need to focus on food quality, supplements, like Vit B. . Best advice I have seen, 70-80%plant based, get rest from plants or animal sources.

Proteins, probably need a little more than when younger, very controversial. probably around 1 gm/ per kilogram body weight , daily.

Be aware of food quality and consume the highest quailty you can afford. Quality is whole foods, minmally or not processed, non GMO, grass fed, free range, organic. all those buzz words, they are imperfect surogates for quality, but the best we have.

Eat the rainbow, lots of colors, food varieties, aim for the Japanese goal of 30 different foods, daily.

Avoid high fructose corn syrup, hdrogenated fats, like the plague. Pretty solid evidence that these should be banned, already are in some countries. eliminate ultra proceessed foods, which are really not foods at all, and limit processed foods.

Probiotics, prebiotice. Fermented foods, Kambucha, sauerkraut, Kefir and so on. May be some risk with immune compromised, work with practitioners.

Micriome importnace cannot be overstated. Unclear how to monitor, except by pretty gross testing. Optimal with adequate fiber, soluble and insouble.

Fasting. Really exciting possibilities. Not enough to recommend, but the benefits of intermittent fasting, are worth considering. Really a reversion to normalcy. Most of us grew up on three meals daily, maybe tea as well. but no grazing, or snacking to speak of. Pretty clear that daiy consumption of salty, sugary, ultra processed food like substances is playing havoc with blood sugar levels, probaly at root of epidemic of Diabetes type 2. Even more alarming is vey high, sustained levels of Insulin. This is a very imprtant hormone, many effects.

Exercise, sleep, hydration, avoid tobacco. Sadly Alcohol is a poison, drink in moderation, or not at all.

Look forward to comments, i am an interested amateur.

[BWHR]

Sorry – my reply was to the post you responded to and I obviously hit the wrong button! No one, especially me, is suggesting obsessing over a diet to the point of emotional turmoil. But at the other extreme, pretending that diet has nothing to do with disease is just denial.

[BWHR]

Thanks, and BTW that Zevon quote is one of my all time favorites. I will often send friends selfies when enjoying a sandwich in a particularly beautiful setting.

[kablea]

I spent months analysing my protein intake, not least becuase I run and damage my muscle tissue. I was shocked to find that my intake, even though I eat meat, and consume milk and dairy, was around 50 g each day. The advised 80 g for a male has been pushed up to 120 g in that we older people tend not to absorb protein very well. That entailed me eating more cheese, cottage cheese and yogurt but it is still difficult as part of a balanced diet. How vegetarians manage it I do not know. Stress is the worst problem for us so staying relaxed over diet is essential.

[craterlake]

hi Adlucy ,, there is a lot of info on the excellent LLS.org site with an 800 number to call for a free personal consultation .... i am personally a 75 year old vegan with no other comorbidities . i take a few supplements like iron , b12 , vit. C and a probiotic .doing very well on O+V . here is a link to one of their pages .. blessings , james -- lls.org/managing-your-cance...