I have had my son on an organic whole foods diet for about a month now. My theory behind it was the chemicals/hormones/pesticides were weakening his body.
Today I spoke with Dr Susan Silberstein the director of the center for advancement in cancer education (beatcancer.org)
She told me to #1- No Dairy products #2- No microwave- #3- no pesticides out/inside your house.
I have been reading so much about cancer and diet I was just wondering if any of you have some insight?
First of all, I am so sorry every time we have a new "member" to the club. I remember when we were the newbies and what a huge source of comfort this site has been to me. Don't be afraid to ask, trust me, someone out there will answer.
I am shocked to hear such strict guidelines! Where did you find this person - referred to you from the hospital? Is she an expert in pediatric cancer? Just curious. I have only heard no fresh fruits and veggies with ANC under 500 but you will find some hospitals are more strict than others. I think St Jude's folks said they were told no tea or rice. We have also been "suggested" to not have soft serve ice cream as its not at a frozen state which leaves more room for bacteria but my son's ANC has always been on the lower side than the higher or things. Other than that, I use the microwave all the time! I try to not have leftovers older than a day but that is with ANC over 700 (where my son sits in maintenance). He drinks tons of milk and eats cheese as chemo leaches calcium from the bones.
Keep us posted if you have more details and I will be interested in what others say in response to your post.
Give that little one a hug and yourself a pat on the back for finding this board.
Sarah in Denver
For ANC under 500: only peeled fruits and vegetables, no unstable leftovers (ie pizza that's been sitting in the box on the table for an hour and cooled to room temp) and no heat lamp foods. We were also told no supplements, especially no folic acid. I think there may have been mention about citrus but Joey doesn't like citrus stuff so I didn't pay attention to that. Due to the toll of chemo on the bones, we've been encouraged to up his dairy in order to get more calcium except, of course, no dairy with 6mp and 6mp on an empty stomach. Other than that, we haven't been given any other dietary restrictions. Joey is a spicy food guy and they discourage that during high dose methotrexate or any other time he has mucositis but that's for pain concern, not diet. Hydration is the only thing we track.
We have an ant problem and I have put my foot down with my husband about using ant spray. He was killing all the plants in certain areas and that can't be good for any of us! He's learned about a whole bunch of ways to get rid of them with baby powder, rubbing alcohol and petroleum jelly. We did start a Terminex contract but only after he talked to them and learned that they stuff they use they also use in hospitals.
I would definitely run anything you learn from beatcancer.org by your oncology team. They are not a medically approved group but a non-profit. They also accept funding from groups that they than advertise and endorse which always makes me leery. I'm all for companion support (diet, message, aromotherapy, etc) but would weigh more heavily what the oncologists have to say. Dr. Silberstein has a PhD not an MD, that makes me leery. You're going to run into a lot of people on this journey who have a lot of different opinions and ideas and even undocumented "facts". Everyone from Suzanne Somers to your Mom's-cousin's-sorority-sister's-aunt's-babsitter is going to tell you what you should and should not be doing. Personally, I run anything I haven't discarded on my own past the oncology team.
Message was edited by: norrim04
I am with Margaret. A good, healthy diet is important for everyone. There are many lines of thought that say cow's milk isn't good for any of us. You need to decide what you believe and what you don't Trust your Oncs. If you don't find new ones. What you don't need to do is make yourself crazy. We all want to find the cause and eliminate it from our children's lives. Balance is important, hard, but important. If this is something you feel has merit and you can easily adapt- go for it. Just don't make life too hard.
What I found through this journey, is the best thing for my son is to be nourished and happy. During front line treatment, he lost so much weight that the Oncologist put him on appetite enhancer, she also told me that if that is not going to work, they will have to insert a feeding tube. Casey was lucky, it worked. He gained his weight on kraft microwaveable mac and cheese. We all know how gross this is, but the darn thing saved him.
Now in LTM, he makes fairly good food choices, he does not eat kraft mac and cheese, but he doesn't eat a bowl of spinach either, he is treated with chemo therapy and steroids, he needs calcium, and I know that my 13 year old won't get his calcium from collard greens.
If your son is willing to eat the strict diet and he is keeping up with the weight, then I say, go for it.
I have become more and more granola, organic, etc over the years and after seeing the movie Forks Over Knives I went on a vegan diet. Dairy can actually weaken bones because animal products are acidic; and everyone can get more than enough calcium from rice, almond or soy milk (soy has some estrogen in it, though) and almond milk is delicious. The American diet is overloaded with protein that is hard on the kidneys; and the old thought that you can't get complete protein from plant products has been proven wrong. There is no doubt in my mind and research done by doctors that diet contributes to cancer, type 2 diabetes and heart disease. It's a very unpopular stance to take because of governmental subsidies of the products that make the crappy diet and all the money made off of prescription drugs. Most doctors are poorly trained on nutrition and prevention; and get discouraged by patients who would rather take a pill than address the underlying issues. That said, my daughter was switched over to hormone free, antibiotic free milk, organic produce, etc. and still got cancer. : ( Staying away from pesticides seems like an obvious one. Don't know about the microwave.
If you can get your child to eat organic produce, stay away from dairy, etc. I think you will have better health in the long run. But, good luck with changing eating habits. It was easy with my daughter because she LOVES food and has Down syndrome, and was switched at an early age. She goes crazy in the produce department, but still wants her free cookie from the bakery.
My son was a couple of months shy of his 4th birthday at diagnosis (ALL, pre-B). I was the Mom who breastfed on demand, made all my own baby food, didn't use any pesticides in the house, used no plastic anything for my son, etc etc. Then leukemia. Then the many, many suggestions from well-intentioned people, doctors, and web-sites. Then reality of what it meant for a little guy going through cancer treatment.
As others have said, you have to find what works for your son and you (of course), and go with it. My friends who said holistic care, organic this and that, also said 'well if you only offer him those foods, he will eventually eat.' YIKES! As I watched Evan balloon from 37 pounds (diagnosis weight), to 49 pounds (post-induction), I was completely horrified that he 'stopped eating' in consolidation (dropped back down to 33 pounds). A wise, semi-retired Oncologist caring for my son said 'when I went through chemo for breast cancer, I knew I needed to eat certain foods for my body. But I could not eat them, even with my medical knowledge and understanding of my body's needs I could not eat them - I could not get them in my mouth. Let him eat what he wants.' Wow...really, not homemade, never processed food? Really? And low and behold, my son wanted one of those 'candies with a chocolate, cookie, and caramel....in the shiny gold package.' Twix candy bars. We added tube yogurt. The weight stabilized and his energy increased....on Twix candy bars and Gogurt. From that point on, we have been of the what works mind-set, with every attempt to balance a healthy food regimen. We are 8 months into LTM, Evan is growing, and still working on getting a good balance of food for the WEEK. When my son has a migraine from his weekly MTX, I pull out the Mountain Dew and chocolate with an Advil - for breakfast, and we try / hope for a semi-decent meal by lunch time. .
Again, find what works for your son, for you and go with it. Because our kids have cancer doesn't mean we have lost our parenting minds or did something wrong. Be the Mom you were pre-diagnosis and learn together. It's all a process.....
Big hugs from Michigan...
What a great response Dels-Mommy!
We are in the midst of induction for pre-b ALL. We, too, are the crunchy, organic, no-chemical, whole food sort of family and this cancer thing is throwing us for a loop. All she wants to eat are: cheddar bunnies, cheerios, cheese sticks, hot dogs, and pickles (LOTS of pickles). Before diagnosis, she ate a varied diet of fruits and veggies with a heathy smoothie every day. Now, I feel like she is a processed food machine! We are just trying to go with what works right now and giving her whatever makes her happy (she doesn't speak yet, so it is all guesswork). Your response to this thread was very helpful for me - seeing another family that had to compromise and go with the flow, dietary-wise. It breaks me heart seeing her stuffing her face with junk, but you can't reason with an 18 month old on steroids!
I don't think you can go wrong with organic foods. The fewer chemicals in our bodies, the better, right? However it is the chemo that will heal your child and that should be given priority over everything else. There will be times when the steroids kick in and no amount of reasoning and cajoling will prevent your son from insisting on the 'worst' foods. But ANY food is good food during treatment because they do need the calories, fat and vitamins regardless of the source. So I'd be reluctant to eliminate entire food groups or be too strict with the regimen. You will hear many stories on LLS of children who ate nothing but chicken nuggets (from McDonald's no less) and popcorn and are now healthy as horses. As for microwaving food, at St Jude they are adament that food must be heated to a proper temperature because they are very focused on food bacteria during times when the child has a low ANC.
The bottom line for me is that if we could prevent, cure or improve the treatment for cancer with diet then dietary changes would be at the forefront of treatment and not an afterthought. I trust Emma's oncologists over any other source of information.
And remember, Amish people get cancer too. That is my way of reminding myself that when it comes to most forms of cancer, environmental issues are not to blame. They don't have microwaves or use chemicals on their crops and I see them all the time at the hospital with their cancer kids. It helps me when I am kicking myself for nuking Emma's bottles of formula in the microwave when she was a baby.
Hope that helps!
I have to agree with this comment about amish (we have quite a few, not amish but something very similar) in our clinic, they raise their own food, they milk their own cows, they make their own clothes, the first time they purchased a car was when they needed to bring their child in for chemo once a week. No one is immune to cancer. Our oncologist also brings up the fact that there are plently of cases of identicle twins, one with cancer, one without, they have the same genetic make up, the same exsposures.. He told us in the very begining when my mother in law asked "what caused this" simple, we all breathe the air and drink water, its basically a crap shoot. I too was the mom who breastfed til 13 months, my son never ate babyfood that wasn't made at home, he never ever drank from a bottle, no pesticide use, we don't drink much milk, and he still has cancer. I do think diet plays a bigger role is some other forms of cancer, but all I've learned about leukemia I'm not so sure it makes such a big difference. Cancer has been around forever..they've found evidence of osteosarcomas in egyptian mummies thousands of years old.. long before mcdonalds chicken nuggets..widespread pestiside use, chemicals in everything. It also appears in every sort of living creature (including plants and yes Sharks too) All that being said, Organic can't hurt, but don't be decieved into thinking they are pesticide free, they use just as many pesticides as every other farmer, just differnt kinds. Not all are necessarily safer either.
I think its a tough pill to swallow, realizing you can do everything "right" and still not win.
I have to laugh at the chicken nuggets, while Caden's addiction isn't mcdonalds nuggets, its still nuggets..what am I suposed to do with a steroid ravaged 3 year old screaming I WANT CHICKEN at 8am? lol Salsa is the other..which I'm not conplaining about, we make our own, and he eats it with everything! My opinion on milk..its for turning calves into 1000lb cows, which is not what I want to be, so I don't drink it lol we do use it in baking and such and we eat cheese. Everything in moderation right? If you look around the clinic do you see the obese kid who ate taco bell everynight for 5 years? I know in our case, the answer is no. just something to ponder.
I like your answer! I've spent some time beating myself up for spending many years as a single mom on a tight budget and buying regular milk, McDonald's now and then, etc. I didn't make the switch to organic, hormone free, etc. until about 7 years ago. I've known from birth that kids with Down syndrome have a much higher incidence of leukemia than the general population, so I just have to accept that played into it. On a side note; Lauren has hypothyroidism (also common in kids with DS) and we do see the obese kids who live off McDonald's and chips in the endocrinology clinic being treated for type 2 diabetes. It's very sad. At least my obsessive compulsiveness about wholesome food can help prevent type 2 diabetes, obesity, future heart disease (if the doxo didn't do anything), etc. She developed insulin issues that we controlled by changing her diet and that made me a huge believer in using food rather than prescription drugs. Now if I could just get my ex-husband to buy into it and not think I've just turned into an organic freak.
exactly.. a healthy diet is something that will help overall just in general as well, you just feel better and have more energy, it will prevent or keep in check a whole long list of problems. But I'm not gonna beat myself up for the ocasional meal out either. My husband pointed out the long list of athletes, even olympic athletes who have some form of cancer or another, who are in great shape and have good diets..and as someone pointed out earlier, "granola" kids get cancer too. I must say though there is something going on with Baseball and blood/brain cancer, MLB players are effected by both of those at a much higher indidence than anyone else..makes me wonder if it has something to do with the excessive lawn care, think about the amount of time they've spent playing on fertilized grass by the time they go pro. I believe there is and always has been various environmental "pushes" meaning, certain individuals are suseptible and it takes a few triggers to turn into cancer...many of which we can't control. I don't know any parents that have said (well not addmitted anyway) that we fed him crap all the time and now he has cancer, its all my fault! although we know plenty of kids like that, and they are all just fine (for now anyway..like you said Robbie H. diabetes..heat disease..thats the fun they will have sooner or later) I think its a control thing too diets for our cancer kids, its one thing we have full control over.. to sum up my stance on the topic, could diet could have prevented leukemia, I don't think so. Could diet cure it, I don't think so. Could a healthy diet help you be in better overall health, most certainly!
Now we are in steroid week, so off to throw the healthy diet out the window and feed him half a bag of chicken nuggets today lol
I think that maybe these things may cause certain cancer, or help "bring it out" of people that are already prone to it genetically...but once you have it, you have it. I don't think that limiting certain things will cure the cancer, the chemo will cure the cancer. I know certain things aren't good to "mix" with the methotrexate, like folic acid, but not like you should stop eating foods with it in it, just don't go downing folic acid supplements. Because it could get in the way of the mtx doing its job. I know milk/dairy shouldn't be given an hour or two before or after 6mp at night, but it is more to make sure their bodies are absorbing the drug. Also, I've been told to avoid orange juice with methotrexate as well. I was totally crazy about Summer's diet before diagnosis(dxd at 2 years 2 months). Her favorite foods were as follows : broccoli, spinach, green peppers, romaine lettuce, eggplant, squash, carrots ect... And brown rice, wheat bread, yogurt,sunflower seeds(without the shell and no salt)ect...She loved all fruits and veggies. She ate almost completely organic. She never ate processed foods. She never had "junk food". She got cancer. A few weeks into induction her new favorite foods were: rotisserie chicken, and 5 cheese mexican blend shredded cheese in a bowl, and soup (from a CAN). There wasn't much I could do to stop it, and honestly after all that she had been through, I was like "let her have her damn chicken!" LOL....then her favorites were easy mac and cheese (gross!), still the soup in a can, cheese doodles, freeze pops, cheese its, string cheese and god knows what! (but luckily she still loved broccoli, salad, green peppers ect, but she'd want a hotdog (100% beef but STILL!) with a side of broccoli). I was just happy that she never lost her appetite, even with the intermediate 24 hour dose of methotrexate! She is really healthy (other than fighting leukemia), and has yet to catch a bug (knock on wood). She was also an early rapid responder, and put in a low risk category, so the crazy diet during induction didn't slow down the chemo doing it's job :-)
Kat, I just wanted to let you know that things do get better with the food stuff. I had my son eating moderately healthy before diagnosis. Yes, we did occasional fast food but he ate lots of fruit, veggies and anything I could get in a smoothie. But when he was diagnosed, he wanted nothing but junk. And I gave it to him. There were weeks that he only ate bread and butter. And then it was In N Out! Even in LTM, he wouldn't really eat much variety and the only healthy thing he would eat was fruit. I was just happy though he kept his weight up! But now we are four months off chemo and he is eating everything again! Even veggies he wouldn't touch before. He said it is like his tongue came alive and he is excited to try new things again. So, do what you can and don't feel guilty about what you can't do. If you can keep them at a healthy weight on chemo, you have succeeded. And then, they go off chemo!