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 2025 Patient Seminar Session: Diet and Nutrition for Patients with HCL

The Hairy Cell Leukemia Foundation hosted this session featuring guest speaker Kelly Dunn from the University of New Mexico Comprehensive Cancer Center.

View a recording of Ms. Dunn’s presentation below.

Transcript of Ms. Dunn’s presentation

Introduction

My name is Kelly Dunn, and I am a board-certified oncology dietitian in Albuquerque, New Mexico, at the University of New Mexico Comprehensive Cancer Center. And so today, what I would like to talk to you all about is nutrition and hairy cell leukemia, so that we can understand the complex situations at our hands. And some of you may, in fact, have had the opportunity to meet with a dietitian. However, in case you have not, I hope you learn some very good information today.

I know that everybody is likely very familiar with hairy cell leukemia. However, I felt more comfortable putting this in as one of our first slides as an introduction. So, we're going to talk about optimizing your nutrition, and this will help you with optimizing your immune function, preventing or correcting malnutrition, improving strength and muscle mass, ensuring adequate micronutrient levels, which will help with building blood and reducing inflammation and metabolic stress.

Nutrition during treatment of hairy cell leukemia and good outcomes go hand in hand. So, it's important that we remember that there are nutritional guidelines and goals during treatment. And so let's optimize immune function. People with leukemia often have a low neutrophil count, and many of us know this because this might delay a treatment. So, this causes immune suppression, and good nutrition helps support the immune system and also reduces your infection risk. So, this is what we're going to go into today.

Preventing and Correcting Malnutrition

We're going to help with preventing and correcting malnutrition. Though some of those with hairy cell leukemia may experience fatigue, they may also experience appetite loss or weight changes. And adequate nutrition is also linked to fewer complications and side effects, which don't we all want? Improving strength and muscle mass.

Protein–energy malnutrition—which some may or may not have heard this word “malnutrition” before—does lead to longer recovery times, and nutrition helps maximize or preserve and rebuild your lean body mass. Unfortunately, with a cancer diagnosis, once lean body mass has been lost, which is another word for your muscles, it's very difficult to get it back.

So, the goal would be to prevent the loss from the beginning. We want to ensure adequate micronutrient levels. Many of these are B vitamins. Certain deficiencies affect healing time and affect building of new blood. Adequate levels also help improve your immune function, specifically vitamin D, iron, folate, vitamin B12, and zinc.

Another is not a micronutrient, rather a macronutrient, and that is protein. This will also help with reducing inflammation and metabolic stress in your body. Good balanced nutrition and keeping blood sugar stable help improve outcomes. So, we all have a certain degree of inflammation in our bodies, and this overall inflammation is actually a risk factor for the development of cancer.

So, part of the goal with good nutrition is reducing that inflammation, which in turn decreases your metabolic stress. Metabolic stress is the normal functions of each system in your body. An example is your lymphatic system.

Foods to Encourage: High-Protein Foods

Okay, so let's talk about first what to encourage with high protein. Like you can see in the picture, a few examples: foods with high protein, for example, are things like anything from animal food—so beef, red meat, chicken, poultry, turkey (which is coming up soon), fish, milk products, anything made with milk like cheese, yogurt, cottage cheese, also eggs.

And then on the plant side, we have legumes, lentils, nuts, and seeds. So, you want to continue to eat high-protein foods every meal, every occasion that you sit down to eat. We're also going to talk about immuno-supportive fruits and vegetables, and other complex carbohydrate plants, which typically are any of your carbohydrates that are not refined.

And white food. And the reason I bring this up is because many of our B vitamins are found fortified in complex carbohydrates.

I want you to eat healthy fats. These are things like avocados and olive oil.

Immune-Boosting Micronutrients

Okay, so most importantly, this is why I briefly described each of those—most importantly, your immune-boosting nutrients. This is something I have a lot of referrals for. Patients want to know what they can do with their nutrition to improve their overall well-being, and they know that they have more difficulties and sensitivities to their blood cells.

So, vitamin D, iron, folate, vitamin B12, and zinc, which I mentioned earlier. Let's go through each individually.

Vitamin D

Vitamin D. The RDA—which is the recommended daily allowance that we each get—is 400 international units a day. There are some listed here, however, in no particular order: beef liver, egg yolk, fish such as herring, salmon, trout, and tuna.

And I list those specifically because those are fatty acids and vitamins. Fish oil and cod liver oil. Fortified dairy—so milk, cheese. Mushrooms. Mushrooms are really good for something. Fortified orange juice fortified cold cereal. Let me tell you why these say “fortified.” These say “fortified” because there has been such a deficiency in the past.

These are foods that generally would contain some, and people would have much better absorption coming from food versus supplements. So, it was determined to fortify these foods since there was such high community and population intake—that way, some better assurance that more people would get the vitamin D that they need.

Iron

Here we are with iron. This is a nutrient we hear about a lot, also. The recommended daily allowance is 18 milligrams a day, and that is without deficiencies or any iron overload. In no particular order, these are some of your foods that are highest in iron content: beans, tea, lentils, meat, organ meat like liver, eggs, poultry, seafood, green vegetables like asparagus and broccoli, leafy greens, nuts, and enriched whole grains.

That's where the whole grains are—complex carbohydrate products. Seeds like pumpkin seeds. We just had that season now, too, which is really handy.

Folate (Folic Acid)

Folate—otherwise other ways it's called folic acid. So, you may have heard that. The recommended daily allowance is 400 micrograms, and this just means folate in all of its sources, like folate and folic acid.

Foods in no particular order: asparagus, avocados, beans and peas, enriched grains, whole grains, complex carbohydrates—that’s what those are—leafy greens, oranges, and orange juice. Again, we have an enriched grain here. It was found folate, something that is like in a prenatal vitamin, is in that vitamin in higher amounts, like the iron, because it was found that the deficiency was affecting those that are unborn.

And the reason that I bring that up is because you need this also for your blood-building nutrients. And so, in many case scenarios, enriched whole grains are perfectly okay. Also, because, like I said, it's better to get it out of your food—it has better absorption and digestion—than you have to take supplements for everything.

Vitamin B12

Vitamin B12. I do have a few patients as of late who have high vitamin B12 levels. So that can happen too. However, in most cases, it is a deficiency. The recommended daily allowance is 2.4 micrograms. Vitamin B12 is one of those nutrients that is primarily found naturally occurring in animal products.

This is what makes this one of the nutrients that makes being a vegetarian or a vegan a little more complex because those levels will need to be checked on a very regular basis, and likely a supplement will be necessary. B12 can be given in several different ways, but what I wanted to bring up today—because I have a feeling there is a good majority of people on vitamin B12—is that if you have a deficiency and you need supplementation, injections are the best.

If you're not getting injections, the next best would be sublingual, which means under your tongue, and also means dissolvable. I say this because I have a lot of people who are taking it in pill form, which they swallow, and vitamin B12 is actually activated in your stomach. And if your body does not have the ability to activate vitamin B12 in your food and absorb it, I wouldn't want you to take a pill that travels the exact same route.

So, side note: under your tongue, dissolvable.

Zinc

Zinc is another blood-building nutrient. Your recommended daily allowance is only 11 milligrams a day. The foods with the highest content of zinc: beans and peas, beef, dairy, poultry, shellfish, whole grains, nuts, and—here again—we have fortified cereal. Zinc is something you may lose if you're having chronic diarrhea symptoms.

It would be important for your doctor to check your zinc levels. Also, if you're taking a zinc supplement, it may result in low copper levels. So that's something else to take note of. And remember that all of these are blood-building nutrients, so we don't necessarily want low levels, especially as a result of another supplement.

Foods to Avoid (High-Risk Foods)

Okay, so what to avoid? I can't specifically tell you that there are foods that you have to stay away from. What was ending up happening is that more people were restricting their foods due to preference or higher risk, and there was a higher prevalence during that time of malnutrition. So, over the past one and a half decades or so, there have been some new recommendations made, and this is because there is a drive to prevent malnutrition, which has an increased mortality and morbidity rate.

So instead, because of the reduced incidence of foodborne illnesses, it was recommended to add more food back as allowable. And we educate and discuss food safety more often now. The recommended food safety guidelines for cancer patients are now coming from the USDA. So, if ever you are wondering about a particular food, that is where you can get your information from—on what’s currently recommended—from the USDA.

So, we’re going to talk about food with a higher risk of foodborne illness. Foods that may irritate the digestive system after treatment. So, you see here, chili peppers. Our system, especially our GI system, is significantly more sensitive when we have a diagnosis such as hairy cell leukemia. Also, the cells lining our GI system—and our GI is from our mouth to our rectum—those cells turn over much more quickly, which means they're always sloughing off and building new cells.

So, if we're more sensitive and we're eating things that irritate our GI system, we're going to have much more difficulty with that because we already have an impaired system. Also, foods that may interfere with hydration and healing, and foods that may increase risk with low appetite levels.

Understanding Foodborne Illness

Okay, so what are foodborne illnesses? These are illnesses that come from our food. So they are diseases caused by eating contaminated food or drinks, which can be caused by bacteria, viruses, parasites, and toxins. Common symptoms include what’s in this infographic here: nausea, vomiting, diarrhea, and abdominal cramps.

Some illnesses can be severe or even life-threatening. Now, the difficult thing in this case scenario is that there are medications that also cause side effects. So, for that reason, this needs to be monitored. And by following the safe food-handling practices we're going to talk about, it'll help prevent this from happening.

Prevention involves safe-handling food practices, like proper hand washing, avoiding cross-contamination, cooking food thoroughly, and proper storage.

Causes of Foodborne Illness

So, what can cause foodborne illnesses? These are some of your bacteria: Salmonella, E. coli, and C. botulinum. Viruses include norovirus—not limited to—but parasites can be things like protozoa. Toxins—harmful toxins and chemicals—can contaminate the food even outside of being a virus or bacteria. Other pathogens might include things like Listeria. This can cause serious illness.

How Foodborne Illness Affects HCL Patients

So how do these foodborne illnesses affect me? Hairy cell leukemia patients have an impaired immune system, and this is due to the reduced number of neutrophils. Remember, your neutrophil delay in treatment—which is crucial for fighting bacteria—and so that's why you are more at risk than the everyday population walking the streets.

Opportunistic pathogens: with the weakened immune system, these pathogens that may be in our food—those walking the streets may not even know—whereas those with something like hairy cell leukemia, they become opportunistic pathogens. They are going to feed on your weak immune system. Life-threatening infections: for a hairy cell leukemia patient, you might feel something like a simple stomach bug or might have a low-grade fever. This is when your doctor needs to be notified, because this can actually turn into a life-threatening situation.

Food Safety Management and Prevention

Okay, so let's talk about some of the management and the prevention of this happening. So what we need to do is follow the strict safety guidelines to lower your exposure to these bacteria and the risks in your home. It used to be that healthcare providers recommended a specific diet, you might have heard this before—a low microbial or neutropenic diet.

Now, some facilities still recognize these; however, this is what I was mentioning is a little more outdated, but it might be called this in a healthcare facility, in an inpatient setting, just to minimize the risk as a more familiar term. Key preventive measures include ensuring that all food is cooked to the proper temperature.

This is going to require a food thermometer, and you need that food thermometer to go to the very center of the food, whether it's ground meat, whether it's a steak, or whether it's a roasted chicken. And the important thing about that is, rather than being a well-done product, you're going to follow the internal temperature. Also, wash fresh produce thoroughly before it's prepared.

So, this being said, you can have fresh produce. This includes fruits and vegetables. They need to be washed for 20 seconds under running water. Just running water. You're going to clean off all the dirt. Can you use chemicals? Yes, you can. And I get that question: “Can we use vinegar?” “Can we use—we have a special spray that we wash our fruits and vegetables and fresh foods with?”

You can use it. However, it's determined that it's not necessary.

Avoid raw or undercooked food. This goes back to that internal temperature. However, if it was raw to begin with, and that's how you are going to consume it, avoid it. An example of this might be a runny yolk. Practicing excellent kitchen hygiene, including washing your hands. This is something that also needs to be done for 20 seconds under running water. Washing utensils and washing your cooking surfaces very well and very often. Patients with hairy cell leukemia should discuss specific concerns and intolerances with their healthcare team and/or your dietitian to determine your individual risk.

Here is the U.S. Food and Drug Administration, where you'll find more information.

Higher-Risk vs. Lower-Risk Foods (USDA Guidelines)

Okay, so if you contract a foodborne illness, you may have a lengthier illness. You may have to undergo hospitalization or even death. So here, what I have on this chart comes directly from the USDA site for cancer patients. So, something else that has changed a little bit is that rather than “foods to avoid,” it's “higher-risk food” and “lower-risk food.”

Because remember I mentioned there are no foods that you have to avoid, but there are those that are higher and lower risk.

So, your raw, undercooked meat, poultry, seafood—safe to eat if you use your food thermometer and check to the correct temperature. Unpasteurized or raw milk—you’ll need to look at the container; those typically purchased from a store are pasteurized.

Another thing: if you don't see the word “pasteurized,” you can look for “Grade A,” which means it's made with Grade A milk and has been pasteurized.

Raw or undercooked eggs. This is what I was mentioning about the runny yolk. So if you like over-easy eggs, it would instead need to be over-hard.

Higher-risk foods also include unwashed fresh produce. Something I failed to mention previously is: if it comes pre-washed, it has to be washed again. An example might be pre-washed bagged lettuce—20 seconds under running water.

Soft cheeses made from unpasteurized or raw milk. So, the most important takeaway here for cheese—let's think about soft versus hard cheeses and what constitutes a soft cheese. Instead, if it's made with unpasteurized or raw milk, those are your highest risks. If it is soft cheese that has been pasteurized, it is a lower-risk cheese.

Cold hot dogs, deli meat. So, all that needs to happen is these need to be reheated on the stove, in the oven, or in the microwave to get back to that safe internal temperature.

Even if you bought a package of cold cuts, you can heat them all at the same time and then refrigerate them or you can heat them one by one—whichever you prefer. But they do have to be reheated to get rid of the potential food bacteria.

The only fruit or vegetable that is a higher risk if it's not cooked are: sprouts—alfalfa, bean, etc. You can have these if they're cooked.

Transcript of Q&A with Ms. Dunn

Q1. What are your thoughts on kombucha or any other microbiome drinks?
A. It depends on your current immune status. Kombucha is a higher-risk supplement. Make sure it’s pasteurized. Don’t get homemade kombucha from a neighbor or friends. If your neutrophils and monocytes are at appropriate levels, it should be okay, but double-check with your healthcare team to be sure your labs aren’t indicating higher risk.

Q2. Could you comment on gluten-free foods?
A. If you have celiac disease, you must stay away from gluten—no exceptions. Some people have gluten sensitivity even without formal testing. For everyone else: if you don’t need to eliminate gluten, please don’t. Gluten foods are complex carbohydrates/whole grains and are enriched with blood-building nutrients.

Q3. Any thoughts about foods with pesticides / organic vs non-organic?
A. Organic items (typically pesticide-free) are good if you can afford them. But not getting organic doesn’t mean you’re at higher risk as long as foods are washed. It’s better to eat fruits/vegetables even with pesticides than to avoid them because of cost.

Q4. Are food-bacteria risks (raw foods, sushi) only a concern before/during treatment, or always?
A. If treatment is every three weeks, your immune system is suppressed for at least a week after treatment. She would not recommend raw foods/raw fish in that week before the next treatment because it increases the risk and could delay treatment. “Is it worth the risk?”

Q5. What if someone finished treatment two years ago and is stable—still no sushi/neutropenic diet?
A. If you’re on surveillance and blood levels are good and stable, you can start reintroducing those things, especially if sushi/raw fish brings you joy.

Q6. Any recommendations for food to boost platelet count?
A. There aren’t specific extra foods beyond the micronutrients already mentioned. Focus on B vitamins, B12, zinc, iron, vitamin D, folate, and protein. Protein helps build platelets. Protein sources: red meat, poultry, fish, milk products, eggs, lentils, nuts, seeds. Vegetarian options still work via fortified grains and legumes/lentils/nuts.

Q7. How much protein do I need, and how do I eyeball it?
A. Not pounds of body weight. Use your weight in kilograms as a safe rule of thumb. Example: 65 kg → about 65 g protein/day (unless your doctor/dietician says higher or lower).

Food examples:

●      Slice of deli cheese ≈ 8 g protein

●      Large egg ≈ 8 g

●      1 ounce chicken ≈ 7 g

●      Typical chicken breast ~3 oz ≈ 21 g
So one chicken breast gets you close to daily needs.

Q8. Is sugar bad for cancer?
A. Natural sugars/carbohydrates are needed; they’re the body’s primary energy source. The issue is foods mostly made of added sugar (cakes, cookies, candy, sweet tea) because they crowd out nutrient-dense foods. Natural sugars in fruit, milk, whole grains, and healthy carbs are fine.

Q9. What about added sugar?
A. Added sugar is not recommended, except for small amounts of healthier natural sweeteners (honey, agave) if needed for nutrition. For special occasions, have dessert as part of a meal, not alone, to slow digestion and reduce blood sugar spikes.

Q10. Thoughts on probiotics and prebiotics?
A. Same idea as kombucha. If immune system is well developed and stable (like being 2 years on surveillance), they can be okay. Many patients on active treatment still use them. But best to get them from food: prebiotics from fiber and probiotics from yogurt.

Q11. Recommendation on coffee?
A. Coffee has phytonutrients and can be anti-inflammatory/cancer-fighting. But it’s an irritant, so if you have nausea or acid/stomach issues, avoid coffee/tea because they can worsen symptoms.

Q12. Any thoughts on mushrooms?
A. Eating mushrooms is fine if washed. If asking about “shrooms as a drug,” she can’t comment.

Q13. Nutritional supplements vs whole foods—difference in absorption?
A. Supplements often list much higher doses because absorption is harder, especially if weakened or malnourished. She recommends supplements only if a food group can’t be eaten (allergy/intolerance) or a deficiency is confirmed by lab testing. Always ask your doctor during treatment.

Q14. Any foods to boost B-cells specifically?
A. No. The same nutrients that boost blood cells in general.

Q15. Is keto better at preventing cancer?
A. No. Keto increases animal foods and red meat, which can be more inflammatory. Anti-inflammatory/cancer-preventive foods are mainly plant foods (fruits, legumes, lentils), which are restricted on keto.

Q16. Deli meat safety—should deli meat/cheese be heated?
A. Yes. Absolutely. Whether cut fresh or packaged, reheat it to a safe internal temperature before eating.

Q17. Thoughts on turmeric?
A. Turmeric (and garlic) are good anti-inflammatory ingredients, but use in food form, not supplements.

Q18. Recommendation on alcohol?
A. Alcohol increases cancer risk. It depends on whether you’re on active treatment. General limits: women one serving/day, men two servings/day, and not more than four days per week. She can’t give “permission,” but that’s what she tells patients. If drinking, red wine has phytochemicals and is anti-inflammatory—choose wisely./intolerance) or a deficiency is confirmed by lab testing. Always ask your doctor during treatment.

This transcript has been edited for clarity.