Antimicrobial diet for Leukemia

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Antimicrobial diet for Leukemia

Postby VeggieSue » Tue Sep 05, 2023 10:56 am

Put on your Dietitian hat, Jeff. I need some advice on tweaking the McDougall food plan to make it also follow the rules of an antimicrobial diet.

My husband has recently been diagnosed with Acute myeloid leukemia (AML) and is finishing up the first 28 day chemo cycle. He's been having many side effects not only from the chemo meds but the other "anti" meds they have him on - anti-emetic before each infusion, antibiotic, anti-fungal and anti-microbial.

At the moment he's an inpatient in the leukemia unit because of severe pains in his left calf. They're running all kinds of tests to find the origin of the muscle pain before they can formulate a treatment.

While speaking with his nurse on admission we explained the food plan he's already on (McDougall starch based, of course) and she said he should have also been on an antimicrobial diet. She said the dietitian will eventually be up to talk to him about the diet. That was Sunday and it's already Tuesday and nothing further was said, but the dietary slip that comes up with his meals says "Vegetarian anti-microbial". Luckily it's the type of hospital where they give you a menu brochure and you call the kitchen and put in your order and in an hour or so they deliver the tray.

In the meantime, I did some searches for the anti-microbial food plan, and luckily most of the restrictions don't pertain to us, but I do have a few questions.

Some of the restrictions I found are pretty obvious and stricter than regular kitchen rules, like no leftovers more than 24 hours old, no leftovers reheated more than once.
No black pepper unless it's thoroughly cooked in the food.
No raw fruits or vegetables from outside the house, including salad bars and fruit salads.
No frozen berries and other thin skinned frozen fruits (grapes)
No fresh raw fruits and vegetables that cannot be thoroughly washed such as: blueberries, strawberries, raspberries, peaches, plums, and grapes (they tend to get mold around their stems)

I have a question about this one to avoid:
Undercooked or raw brewer’s yeast

The head of his oncology team already told us no supplements or fortified foods and especially avoid folic acid. The only nutritional yeast I use, mostly as a faux parmesean as a pasta topping, is the unfortified kind. After reading many of these do's and don't, this one was the first to mention any kind of yeast. Should he also avoid unfortified nutritional yeast?

Can you think of any other food that a McDougaller would usually eat that he should avoid. Because of this recent hospitalization my brain is a bit fried, and some of these do and don't lists contradict each other. Also, his meals have been coming up with things like raw lettuce and tomatoes and packets of pepper next to the salt packets on the trays, and fresh whole fruit, like bananas with breakfast and apples or other fruits with other meals.

The first doctor we met at this specialty facility - a Center of Excellence certified cancer center - surprised us when she started explaining her dietary rules for her patients:
No meat or fish
No dairy
Greatly restrict the amount of added sugars and avoid things like fruit juices and smoothies
Bread is okay as long as it's whole grain, and try to use sodium restricted if possible
No alcoholic beverages or soft drinks

My husband and I looked at each other as she said all that and we openly chuckled. When Dr K asked what that was about we explained the McDougall food plan to her and said we've been eating this way for decades, so these aren't even restrictions to us, it's how we eat naturally. She was very happy to hear that, and said we're probably the first people she's met that eat this way. She said most patients fight it and try to negotiate with her to get some of their favorite SAD foods allowed. Unfortunately, the other doctors and APN's (Advanced Practice Nurse, a.k.a. Nurse Practitioners) on the team just say "all foods in moderation" are allowed and tell him he doesn't have to be so strict. There are plenty of soda and junk food machines around the building but no place to buy a bowl of rice and veggies or even a baked potato, not even the cafeteria.

Right now the chemo is playing a number on his tastebuds and he complains his saliva tastes like 40 weight motor oil. When he's home I can spice up some of his formerly favorite dishes, but he was recently most happy with just some rice and veggies or a plain potato with mustard. In the hospital he's been trying to pick as many starches and side dishes as he can to make up a meal. At least breakfast is plain oatmeal made with water and a banana, his usual breakfast at home, too. He said this tastes normal and he wishes he can have it for all 3 meals a day.

So, any other helpful hints or further foods to avoid? Any suggestions will be greatly appreciated.
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Re: Antimicrobial diet for Leukemia

Postby JeffN » Tue Sep 05, 2023 4:18 pm

This low-microbial diet is recommended for patients with a suppressed immune system, low white blood cell count, cancer patients etc. The reason is these people have a much higher risk for infection and are very susceptible to this from foods containing bacteria, viruses, yeasts and molds. As with most things, every center will give you a list that has some differences which can drive you crazy.

I'd work with the the list you get from the docs you are working with and you can always ask them (or the RDs) about any specific food restrictions.

I would recommend working with your husband and the lists and finding some simple meals he will enjoy that meet our guidelines and theirs and let him eat them, even 3x a day. :)

Also, while I am not familiar with one, there might be a WFPB oncologist out there who might do a Telehealth call with you. You can check out Plant based doctors, PCRM, and also the ACLM all have lists. A client of mine just found a local one in Houston to work with after her cancer treatment through these lists.

https://www.pcrm.org/findadoctor

https://plantrician.org

https://www.lifestylemedpros.org/home

Jeff
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Re: Antimicrobial diet for Leukemia

Postby VeggieSue » Wed Sep 06, 2023 11:33 am

Thanks, Jeff. The dietitian did visit him the morning and he asked her about the nooch and she said it's best to avoid it, even if it's unfortified.

His counts are all very low and he's been receiving multiple infusions of both blood and platelets. His appetite is picking up a little but he knows some of the "vegetarian" foods he's getting may contain oil and/or dairy so he's choosing carefully.

There's talk now of transferring him to a rehab skilled nursing facility next week if his leg still needs treatment. He has an infected muscle in his calf, of all things, and has trouble fighting it because of the low white count and platelets. He's on 2 different IV antibiotics as well as his oral antibiotic meds. The infection specialist is taking over that part of his care but the leukemia team is working with him to decide when his chemo infusions will be allowed to continue. If he does need transferring the place he'll go to runs a Kosher kitchen. My brother was there last summer when he shattered his ankle. IIRC, they did have a few decent vegetarian/vegan options on the menu, but again, he may have to pick and choose carefully and have a talk with the dietitian there to make sure he gets what he needs. Getting rid of the oil is the hard part. Even my carnivore brother complained about that stuff.

His mom died of leukemia back in the 1980's, and he always feared getting it himself. At least now there are all these new meds and treatments, even stem cell transplants (He's still being evaluated for that) so he has a little bit of hope, but with every setback, and there have been many in just this first month of treatment, he's starting to lose even that tiny shred. At least in rehab I can bring a Thermos of food from home with me each day like I did last summer for my brother. Hopefully that leg will heal soon and I can get him back home with good healthy food.

Thanks.
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Re: Antimicrobial diet for Leukemia

Postby VeggieSue » Sun Oct 08, 2023 10:29 am

Sorry it's been so long, but it's been a very busy month.

The torn tendon and muscle led to sepsis and hypovolemia and hypotension and that, combined with the low blood numbers from the leukemia as well as effects of various drugs given to him to treat all of the above have led to AKI - Acute Kidney Injury - and the kidney biopsy diagnosed Acute Tubular necrosis. Both the pathologist who read it and the docs on my husband's renal team say it's "assumed to be reversible" with dialysis, so he's now getting that three times a week for at least another month.

The short term care facility he's in now prides themselves on not just their physical therapy program but their food, and the dietician has been very helpful in getting my husband the correct foods he requires for optimal health, within the constraints of an "antimicrobial" and now "renal" diet on top of the starch based McDougall program. When they lose his menu request slips that he filled out and sent up stuff like scrambled eggs, a hunk of fish, or a bowl of mac & cheese, the dietician left him the phone number to call the chefs directly and they happily work with him, offering up things not on the written menu but are fantastic, such as a vegan chili, loaded salads with the freshest of veggies and three different types of beans, and other starch based meals full of grains and veggies, all oil-free. When my brother (he of the shattered ankle) was in this same facility for three months last year he gained 20 pounds from all the delicious meals they gave him.

My only complaint so far has been when the dietician had him phone me to ask if he was allowed protein powder or other protein supplements, since he had recently lost some weight. Well, he lost weight because dialysis is taking a quart or 2 of excess liquids out of his body three times a week and that's a *good* thing. And if he's on a "renal" diet, doesn't that mean excess protein should be *avoided*, especially dairy based protein supplements? But I added that if she feels he needs to eat meals with more protein, first check each one out on CRONometer, and then if that shows that the veggie meal these chefs are preparing for him are still lacking in protein, add some beans or more grains. She didn't argue, but my husband said in a later phone call that day that she kind of mumbled under her breath at that suggestion and wrote something down on her clipboard. LOL

Thanks again for everything, Jeff, and if I don't get back here in time, have a Happy Birthday. One year you gifted all of us with your Caloric Density video. How about this year a new SNAP/Fast Food recipe, or maybe a video of you making your sweet potato lasagna? :D
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Re: Antimicrobial diet for Leukemia

Postby JeffN » Tue Oct 10, 2023 6:46 am

the dietician left him the phone number to call the chefs directly and they happily work with him, offering up things not on the written menu but are fantastic, such as a vegan chili, loaded salads with the freshest of veggies and three different types of beans, and other starch based meals full of grains and veggies, all oil-free.


Way to go!

My only complaint so far has been when the dietician had him phone me to ask if he was allowed protein powder or other protein supplements, since he had recently lost some weight. Well, he lost weight because dialysis is taking a quart or 2 of excess liquids out of his body three times a week and that's a *good* thing. And if he's on a "renal" diet, doesn't that mean excess protein should be *avoided*, especially dairy based protein supplements? But I added that if she feels he needs to eat meals with more protein, first check each one out on CRONometer, and then if that shows that the veggie meal these chefs are preparing for him are still lacking in protein, add some beans or more grains


Way to go, again! :)


Thanks again for everything, Jeff, and if I don't get back here in time, have a Happy Birthday. One year you gifted all of us with your Caloric Density video. How about this year a new SNAP/Fast Food recipe, or maybe a video of you making your sweet potato lasagna? :D


Thank you! Glad I could help.

Turning 65 in 5 days!

And 15 years on these boards.

:)
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Re: Antimicrobial diet for Leukemia

Postby VeggieSue » Fri Oct 13, 2023 6:28 am

Yet another dietician visited him yesterday, this one at the dialysis center.

This one tells him to avoid tomatoes and potatoes, even sweet potatoes, because of the potassium, and once again he had to point out his is LOW and he was told to eat more of those foods, not less.

She wanted him to drink protein supplements and again he said no, he's supposed to be limiting protein and gets quite enough in all the delicious starchy foods the chefs at the rehab place are fixing him. After she left his nurse came over with a glass of some weird smelling clear liquid. When he asked what it was, thinking maybe another yucky tasting potassium supplement like he had to drink in the hospital, he told him it was the protein supplement the dietician told him to give my husband. He told the nurse to just pour it down the drain, he's not going near it. The nurse said he didn't blame him.

So if all goes well and my husband passes all the tasks the PT people put in front of him now that he no longer needs to wear that gigantic boot on his leg, he may be discharged as early as next week or even this weekend. He'll continue dialysis from our home base - same company, different center - and hopefully get off of that within the predicted 6 weeks until his kidneys recover.

The oncologist says he's strong enough now to start a new cycle of chemo and that'll start on the 23rd. The leukemia team and the renal team with hash out the schedule between them, because what's the point of giving him chemo in the morning just to do dialysis the same afternoon, not to mention the time conflicts of the 90 minute drive to the cancer center for chemo, time for the infusion and sometimes blood or platelet transfusions afterwards, then another 90 minute drive back home to get to the dialysis center for their 4 hours of treatment.

Why am I so worried about what to cook for him? We'll never be home to cook & eat it, we'll be in the car or a treatment center all the time! Time to stock up on even more Thermos containers, I guess, and do all the cooking at night.

Again, Happy Birthday this Sunday. You may be hitting 65 but I'll hit the 70 mark. Enjoy your youth! :lol:
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Re: Antimicrobial diet for Leukemia

Postby VeggieSue » Sat Oct 28, 2023 8:02 am

VeggieSue wrote:She wanted him to drink protein supplements and again he said no, he's supposed to be limiting protein and gets quite enough in all the delicious starchy foods the chefs at the rehab place are fixing him. After she left his nurse came over with a glass of some weird smelling clear liquid. When he asked what it was, thinking maybe another yucky tasting potassium supplement like he had to drink in the hospital, he told him it was the protein supplement the dietician told him to give my husband. He told the nurse to just pour it down the drain, he's not going near it. The nurse said he didn't blame him.


So if all goes well and my husband passes all the tasks the PT people put in front of him now that he no longer needs to wear that gigantic boot on his leg, he may be discharged as early as next week or even this weekend. He'll continue dialysis from our home base - same company, different center - and hopefully get off of that within the predicted 6 weeks until his kidneys recover.


The oncologist says he's strong enough now to start a new cycle of chemo and that'll start on the 23rd.


Life had other plans.

The morning of the 23rd, as the nurse in the infusion room was taking blood samples for routine labs before he goes in to see the doc for his chemo orders, he had a stroke. Luckily the EMS team was there within 5 minutes, into the ER within 15, and in the hands of the stroke team within seconds. That's the beauty of having a cancer center attached to an award winning university hospital. After leaving the infusion room with the left side of his body entirely paralyzed, he was eventually placed in a cubicle in the oncology unit of the ER with only some residual weakness in the left leg and slight tingling in the left hand, and by the time he was transferred to the neuro/vascular ICU stepdown unit the hand was back to normal. At 24 hours after the event, an MRI showed exactly where his 3 almost microscopic infarcts were and how they were caused by tiny microclots instead of one or more large clots, thanks to the rapid injection of the anticoagulant by the stroke team, and he was transferred to yet another unit, one they lovingly call the stroke unit.

It's been 5 days now and he only has what he calls a "wonky" left foot, but the neuro team doctors all tell him that as long as he concentrates on his physical therapy the leg muscles will strengthen to compensate and eventually he'll get used to his new gait.They realize he's still recovering from the torn tendon and muscle, too.

Of course, all this, on top of his other problems, have led to some irregularities in renal labwork, and he's now on a low phosphorous diet and is taking a phosphorus binder medication. So now a new dietician gets into the act. At least *this* time I was in the room and picked her brain. We discussed all the things he can and can't have to eat and why, BUT she also showed me links to the research that showed patients on dialysis need to be on a higher protein diet, not the protein restrictions of a normal renal diet. She explained the vegan protein supplement the dialysis center wants to give him would be a good thing, especially since he's now in a state of malnutrition from not eating much all those weeks during and after the chemo and hardly anything at all the 2 weeks he was uremic. He lost almost 20 pounds he couldn't afford to since mid-September BUT at least half of that was just retained fluids from the kidney failure. She realizes his diet will be severely restricted for now, making it hard to regain that weight, but the high phosphorus foods restriction, such as whole grains and beans, will only be temporary, and once he gets off dialysis, as the renal team predicts will happen, the renal diet can be dropped and he can return to his usual food plan with the nutrapenic/low-microbial restrictions only.

He'll be transferred from the stroke unit back to the rehab any day now - just waiting for the private room to open up because they do plan on restarting chemo ASAP - and she said she'll send the info on all his restrictions over to the dietician there and the dialysis center, so they're all on the same page.

Who knew eating for health would be so complicated? :shock:
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