I've had to re-evaluate my diet recently due to a worsening neutrophil count and it's not much fun! What I did find both interesting and encouraging, is that the latest thinking seems to be that you can do much to protect yourself from food borne illnesses without going to the full extent of a neutropenic diet. Even what's considered to be a neutropenic diet varies somewhat depending on your source. Apparently it is hard to scientifically prove the value of going onto this restrictive diet per this meta-analysis published in January 2019: ncbi.nlm.nih.gov/pubmed/306...
As mentioned in the above reference, dieticians also are concerned that there's a danger of not getting a sufficient range of essential nutrients. Given the fact that you can become ill anywhere from a few days to a few months after exposure to listeria bacteria, which is common in the environment, you can appreciate the difficulties of trying to prove patients are better off on a neutropenic diet.
This month's (June 2014) Australian Leukaemia Foundation CLL Teleforum guest speaker Danielle Keoller (Oncology / Haematology, a dietitian at the North Coast Cancer Institute / Coffs Harbour NSW), provided plenty of useful tips for healthy eating for CLL patients, with particular attention to recommendations for immune compromised patients.
Here's the safe eating diet recommended by Danielle, which is a consensus document by Queensland Dietitians that was last reviewed in November 2013 and is available from the Queensland Oncology Health Department site:
There is at one advantage of being on either the above diet or the classic neutropenic diet - more freshly cooked food! It's recommended you don't eat leftovers that are more than a day old .
Other references:
So what is a Neutropenic Diet? Why should we follow it post treatment?
Patient Power presentation by Julie, a Cancer Dietitian,in a 15 minute video on an evidence based Neutropenic Diet, safe food handling and foods to boost blood counts
There's much more you should do to keep yourself safe from infection when you are neutropenic. The UK Lymphoma association's site explains what to do very well here: lymphomas.org.uk/about-lymp...
(Remember, CLL/SLL is a non-Hodgins Lymphoma!)
Bloodwise released a new 'Eat well with neutropenia' booklet in May 2017 which may be of interest see: bloodwise.org.uk/sites/defa... This link is also available from the CLLSA UK resources page
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Very interesting summary of the origins of the neutropenic diet thanks Chris and well worth a read by anyone that is neutropenic. Fascinating that the diet survived when other measures also introduced in the 1960's have dropped by the wayside: "The neutropenic diet, in which fresh fruits and vegetables were generally forbidden, was an integral part of the total protective environment. In addition, antimicrobial or protective procedures included the use of isolated laminar flow rooms; shaving of the genital area; thorough cleaning of toenails and fingernails; bathing in isopropyl alcohol or hexachlorophene; sterilization of clothes and linens; sterilization of food with ethylene oxide; cleansing of the gastrointestinal tract with castor oil and soapsuds enemas; sterilization of the gastrointestinal tract with antibiotics; and sterilization of all items taken into the isolation unit, including newspapers and procedure instruments."
I'm glad that the above is no longer standard practice and I'm pleased to know that I can still eat fresh fruit and vegetables provided they are well cleaned and in good condition.
I am surprised that so many of us on this site only speak about the new chemo drugs and post comments about the side effects of each treatment but barely share our stories about healthy eating habits and the value of proper nutrition in the fight against any degenerative disease especially cancer. Over the last weekend, I finished a three day seminar (online course) offered by the Gerson Institute in San Diego, California. For some of you who may not be familiar with the work of Doctor Max Gerson, I highly suggest reading some of his work:
The Gerson Therapy even though extremely difficult to follow has proven to be effective in helping patients with their health problems. The therapy emphasizes on organic juices (green juice & carrot with apple) and a vegan diet (with the exception of occasional organic non-fat yogurt). They also talk about the benefits of coffee enemas in cleansing the liver (this is especially true for the patients who have had many cycles of chemo).
Given how poor most people's diets are, I'm not surprised that many people benefit from a more scientific approach to healthier eating. I've started the topic below on healthier eating because we do need to ensure our bodies are provided with a good range of healthy food to give us the best chance of living well with CLL.
I hadn't heard of any scientific basis for the claimed benefits of coffee enemas, but here's an interesting discussion on them which mentions Gerson Therapy:
Interesting subject in your picture, is there a toad on the right of the toad stool? Here in the U.S. we have a considerable amount of pesticide residues on our fruits and vegetables. The strawberry has been reported to have nearly 60 residues plus tons of dirt. The peach has @ 50 on and on. We have a few products commercially available to wash the pesticides off the food. Nothing goes in my mouth that hasn't been thoroughly scrubbed with the cleansing products including organic items. Many of our fresh food comes from Mexico which I always complain about that. I don't feed my horses hay from Mexico and never any dog or cat treats, since the vast majority of the animal poisonings have occurred from products that have an ingredient from China, even the big named brands. My husband does eat meat but never at home, I don't buy the deli meats since I asked for the expiration date on an unopened roast. It was 2, yes 2 months past the exp. date ! YIKES... we don't have any meat in the house except a can of cat food, I broke my husband of that... kidding. Anyway, it's very hard to eat clean now a days, with all the poisons.
We do put a great deal of trust in our food suppliers and with cost pressures and the importation of food from less regulated countries, it is surprising that there aren't more problems. I've had a couple of severe reactions to what I suspected was pesticide or preservative contaminated food, one of which was strawberries (pesticide) and the other minced meat. Both were locally produced. The mince I think had an excessive amount of the preservative sulphur dioxide, which is now banned here.
That grey gum nut does look like a toad! I did see a small green grub climbing a leaf blade behind the toadstools when I was framing the photograph, but I was too slow to capture it.
One really needs to take care when consuming home/locally grown edibles. I don't buy from "farmer's markets", there could be all sorts of pesticides, wee, poo. One just never knows.
The gray gum nut, would that be eucalyptis ? Too slow to capture a green grub..... because the grub had more legs ? (grinning) I'm watching a chick hatch out of it's shell. It's peeping at me.
Eucalyptus trees are colloquially called gum trees, hence they have gum nuts. The grub didn't have many legs, but was just like a small thread.
Would have been good if you could have captured the chick!
It is certainly attractive to grow your own vegetables if you have the space, time and inclination. At least that way you have a reasonable idea of what additives you are getting...
I can highly recommend the documentary Food Inc. While specific to the USA, much of it is relevant elsewhere:
The home garden is great ! Last year I won the war but lost some battles with the critters taking more than their share, oh well there was always enough to go around. I have a place that doesn't get any type pests so don't have to worry about pesticides. Left this area open this year in the hopes of not cultivating any particular bugs, though I'm losing a couple trees due to the drought.
The chick hatched and was peeping a lot. They are so packed in the shell all rolled up it was difficult to tell one end or the other. Came out wet and wobbly but after 15 mins the tiny thing was balancing on my palm ! Inside the egg shell, the blood membrane was present and still moist.
Hi Shazie, I get their newsletters by email. Interesting stuff. I'm familiar with the Gerson Therapy. I had a good friend who had battled a rare form of Hodgkins for nearly 15 years and her final diet/therapy was Gerson's instead of having most of her esophagus removed and replaced by her stomach being relocated to her throat. That was her last fight. Maybe if she had found the diet/therapy sooner, who knows.
I hope all of you are fighting for the elimination of GMO products, or at the very least that the are labeled! It's also time to get some exercise pulling weeds instead of using products like round-up!
I wholeheartedly agree with you Pat about pulling weeds or using other methods to control them. I just boil water and pour that on weeds in the driveway and other places where they are likely to cause damage or are particularly unsightly if I can't easily pull them out or scrape them off.
So much or our use of chemicals in our environment is for cosmetic purposes. I'd much prefer having the weeds there or if they are likely to be a fire hazard, just mown or slashed down, rather than have chemicals entering our ecosystem and causing who knows what impacts, just so our environment looks tidy.
Hi Neil, This may indeed be a "stupid" question, but I am going to ask it anyway. I have been buying raw honey from a local farmer's market not realizing that raw honey was on the "High Risk Foods to Avoid" list. If I use it in cooking/baking does that make it safe to use or do I need to give it up completely? My feeling is that it doesn't matter and I will probably be giving my new jar of local honey away, but thought I would ask. Thank you for posting this information. I have the safe diet recommendation list hanging in my kitchen now!
I don't see how any question can be "stupid" where your health is potentially at risk.
As I understand it, the difficulty with honey is that it is derived from nectar collected from a wide range of flowers by insects, so there is inevitably going to be bacterial and fungal contamination. The bees actually drink then regurgitate the nectar then drive off the excess moisture to increase the sugar content. The high sugar content will stop bacterial growth, but fungal and bacterial spores can survive, including Clostridium botulinum spores, which can cause botulism.
"People who are immunocompromised should not eat honey because of the risk of bacterial or fungal infection."
With regard to whether you can use your honey in cooking, that should be OK provided you can guarantee a high enough temperature for long enough to kill any spores. The Safe Eating paper from Queensland Health does allow "Commercial (heat treated) honey".
We have been soaking fruits and veggies in a vinegar/water solution then rinsing before cooking/eating. Does anybody else do this to reduce bacteria? We are finding it makes food prep longer but we hope it makes our foods safer for suppressed immune systems.
I must admit that I was sceptical on the antibacterial properties of vinegar, which is a fairly weak acid, but there's a fairly comprehensive summary of how the claimed health related properties of vinegar stack up - including references, in this Medscape page:
Note: "Recent scientific investigations clearly demonstrate the antimicrobial properties of vinegar, but mainly in the context of food preparation." There are four references provided to support that sentence.
Having read the above, I can see the merit of soaking in vinegar any fruit and vegetables you are going to eat raw, but cooking should destroy any bacteria, provided you reach a high enough temperature. Plus it will save food prep time and reduce the chance of actually introducing more bacteria.
Thanks for sharing that technique; I seem to be managing OK by just washing carefully selecting unmarked and unbruised fruit, but I'll definitely keep this in mind.
Fowey2009 and CLLerinOz both flagged this abstract about a trial study showing that neutropenic diets were inappropriate, based on Cologne University research (the home of the well respected German CLL Study Group who contributed authors to the study, including Professor Dr Michael Hallek).
The analysis of 2,086 neutropenic episodes (1,043 per diet group) resulted in the following conclusions about a standard vs a neutropenic diet:-
• The benefits of a germ-free diet for neutropenic patients with cancer are scarce.
• Food restrictions may increase malnutrition and gastrointestinal side-effects.
• Standard diets do not increase infectious complications in neutropenic patients.
• Incidence of diarrhoea and nausea can be reduced by standard diets.
• Implementation of standard diets for neutropenic patients with cancer is safe.
While stomach acid usually kills pathogens, some can survive, more so if we are on GERD medication to reduce stomach acidity. Healthy people get gastroenteritis after all. That's why it's important in my opinion to eat refrigerated food within a day of preparation, after putting the food back into the fridge while still warm if cooked, avoid foods likely to have high bacterial loads, either because of the food type (soft cheeses, shellfish, some uncooked/unpasteurised foods likely to have high bacterial counts), foods kept warmed in Bain Maries, foods which are likely to be poorly handled by people helping themselves to the food (thankfully public food buffets are better managed if they still exist in pandemic times), food which has been left out for a while and so on. Reiterating Chris/CLLCanada's first reply, what's really the most important is proper safe food handling and management to prevent food becoming unsafe for consumption, rather than avoiding foods that are part of what's considered a "standard" diet.
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