Diet and Living with LFS

It’s a New Year. Resolutions, diets, everywhere you look are ads about how to get healthier. When someone is diagnosed with cancer or Li-Fraumeni Syndrome, usually one of the first questions they ask is : Can I change my diet to help fight or prevent cancer?

The short answer is – sure. Of course. Just by asking the question means somewhere in the subconscious we know that diet is a factor in our health. It seem obvious, right? Not always. Just WHAT that diet or change is, well- could be anyone’s guess.

Another question that also pops up in cancer circles- A LOT- Does sugar feed cancer? For every article saying yes, there is one that says no. Same with, is wine good for us? Also- Can turmeric cure cancer? For more information on turmeric- check out the blog post linked below.

So what is a mutant to do? Think, research, and live.

Do you remember hearing the saying, You are what you eat? On a basic level- this is true, without posting research articles with words that are difficult to pronounce and understand, let’s just think on this. We eat food. Generally we eat food for energy. Some of us eat food for comfort, don’t judge, but the basic point of eating is to provide us energy and nutrients for growth and healing. We eat an apple, nom nom nom. It gets digested into tiny particles. What is part of the apple becomes part of us. Our bodies work hard to separate the not good parts from the nutritious and useful parts. It is pretty amazing at taking what we need and getting rid of the rest.

There currently isn’t much research on diet and LFS. Colleen Spees a PhD at the Ohio State University, holds LFS and nutrition near to her heart. She’s spoken about cancer and diet many times and started a wonderful program called Garden of Hope for cancer patients and survivors to help them stay healthy through diet. You can hear Dr. Spees talk about LFS and nutrition here-  Hope Grows with Colleen Spees.

Many mutants follow the American Institute for Cancer Research diet guidelines.  Others follow the Mediterranean Diet. Some have tried the various “anti-cancer” diets, such as the alkaline diet and ketogenic diet. Many stick with the SAD diet- the Standard American Diet. Others just try to eat healthy and make good choices while enjoying a cheeseburger or glass of wine from time to time.

New American Plate from the AICR

When asked what diet changes they had made after being diagnosed with LFS, members of our support group’s answers were as diverse as their cancers. Some swear by the success with certain diets, others had failures with those same diets. There were several themes that continued to pop up.

MODERATION- Another saying we hear a lot is “everything in moderation”. I had a doctor tell me once- “everything in moderation, even moderation”.  What is moderation? Moderation is about portion control, balance and variety. Moderation goes against the grain of if a little is good, more is better way of thinking. Think of supplements- 1667% of the Daily Recommended Amount of anything can’t be good. Your body works to use what it needs. Anything more than it needs means the liver, kidneys and other organs have to work harder to clear out the excess. If you eat more food than needed, your body works harder to convert it to fat. Then your body has to work harder to carry that fat around.

DO WHAT WORKS FOR YOU- So you don’t like broccoli? Kale makes you turn green? Do not make yourself miserable. Eat the fruits and veggies you do like. The best defense is a good offense, having a strong healthy body helps us fight cancer.  Try to eat organic, there are less chemicals and genetically modified extras that could become part of us or damage our already sensitive DNA. If organic isn’t possible or affordable- real food is always better than processed. Healthy habits are only formed if they work for you.

MAKE SMALL CHANGES- Both the AICR and mediterranean diets have similar recommendations for anti cancer benefits. Eat lots of veggies and plant based foods while limiting sugar, red meats and processed foods. Most fad diets see initial results because they limit something or eliminate it altogether, low carb, low fat, no meat. Start with something manageable, try to make healthier substitutions, limit portion sizes, exercise more so you can have dessert. Vegans still get cancer. Kids get cancer. People who live off of SPAM and rice don’t get cancer. If being vegan makes you feel better, then embrace it. If SPAM and rice are the center of your universe, don’t give it up if it makes you miserable- wrap it in seaweed and call it a Musubi. (Seaweed is a natural filter- like mushrooms and has many beneficial nutrients).

THINK ABOUT YOUR HABITS- Are you a stress eater? Do you live for chocolate? Be honest with yourself. If you love something, it doesn’t make sense to deprive yourself. Many follow the 80/20 rule. Healthy eating 80% of the time and splurging 20%. This could be split however suits your habits. You could eat healthy all day and have dessert after dinner, you could make good choices during the week and spurge one day during the weekend.

We try to control what we can, more importantly, we have to find joy in living. Food is a part of us, it can make us healthy, it can make us sick. Supplements can help balance what we can not get in our diet due to location or tastes. The most important changes are ones that help you feel better. No one food or supplement will cure cancer, if it did, cancer would be cured. Be sure to talk with trusted professionals to get more information on what might be best for you. With balance and moderation, we can help our bodies stay strong against tumors and Live LFS.

For More Information:

Nutrition and LFS: IP-6 and InositolEver since we were kids, we are told to eat a healthy diet. When we were young- cereals and other gr…Sep 26 2013www.livinglfs.org

The Anti-Tumor-ific Properties of TurmericTurmeric is a spice from a root related to ginger that’s been used in Asian and Indian cooking for t…Nov 6 2013www.livinglfs.org

Mushrooms: Anti Cancer or just Fun Guys? Mushrooms. The Magical world of Mushrooms. There are many types of mushrooms.  Some mushrooms are …Nov 24 2013www.livinglfs.org

Should we ((HEART)) CoQ10?A friend with LFS recently asked me about CoQ10 supplements and their anti cancer effects. Supplemen…Feb 26 2016www.livinglfs.org


Should we ((HEART)) CoQ10?

A friend with LFS recently asked me about CoQ10 supplements and their anti cancer effects. Supplements are yet to be regulated, certified or otherwise cross checked in the United States. The FDA considers vitamins to be nutritional supplements and does not recommend doses or support any health claims made by manufacturers. There isn’t a lot of scientific evidence to back up many health claims one way or another with vitamins, so it is important to do your own research and understand what each does normally for our body. Always talk to your provider about any supplements you are thinking about taking, many do have interactions with drugs you might be already on. Just because something is natural, does not mean it is good for you and what works for one person may not work for another. I’ll give you some of what I know about CoQ10 and some great resources I use to learn about supplements and herbs.

FullSizeRender

What is COQ10?

Coenzyme Q10 is an antioxidant. An enzyme is a molecule that causes a complex reaction inside the body- CoQ10 helps your body convert food into energy.  As an antioxidant, it also helps prevent damage that certain particles called free radicals can cause. (Random thought-Did you know that p53 actually performs some antioxidant functions?) CoQ10 is also called ubiquinone and is produced in the body naturally. As we get older, the amount of CoQ10 decreases due to many possible factors. CoQ10 supplements have been used to help many different conditions including heart failure, high cholesterol, high blood pressure, diabetes, cancer and chemotherapy related heart damage. There are varying degrees of evidence and success for each of these conditions.

Where can I find CoQ10?

As a supplement, you can find CoQ10 over the counter. An easier way to add a little CoQ10 into your diet is through foods high in CoQ10 such as beef, herring, chicken and soybean oil. Other foods with pretty decent amounts of CoQ10 are canola oil, peanuts, sesame seeds, pistachios, broccoli, and cauliflower. By following a well rounded diet with and emphasis on cruciferous vegetables, lean meats and nuts, you are probably getting a fair amount there.

Fishcoq10

Does CoQ10 prevent or Treat Cancer? 

I can’t tell you that. There was one notable study using high dose CoQ10 to treat breast cancer in 1993. Of 32 patients, 1 had a complete response and 6 had a partial response. The thing is the patients were treated with standard surgery, chemotherapy and also supplemented with other antioxidants and fatty acids. So we cannot say definitively the success of those cases was due to CoQ10 or the combination. The study noted that none of the patients died, there were no further metastases on this treatment and the tolerability of chemotherapy seemed to be improved.

Further studies have shown similar results. The take away here is that the supplement CoQ10 did not seem to cause any damage or hurt treatment and it supported health during breast cancer treatment. Another study refuted whether or not CoQ10 actually helped tolerability of chemotherapy. Like anything with cancer and chemo, treatment can be very subjective and individualized.  Could it work for you? Perhaps. If you think it might, it’s worth a conversation with your doctor.

What about CoQ10 and p53? 

If there isn’t a lot of data on supplements and cancers like breast cancer, the odds of us finding any studies on p53 and CoQ10 are pretty slim. Heck, look at green tea; people have been claiming health benefits of green tea for centuries and some studies support it and some don’t. There have been studies on cruciferous veggies and p53 and some good data- but there are just too many supplements, so many proteins and not enough money for research. That being said, with LFS you make the best decisions you can with the information you have. The information is constantly changing and we just try to keep up with it.

In America we tend to go with the idea that if a little bit is good- a lot is better. This theory doesn’t always apply to supplements. The body is pretty amazing and has checks and balances to keep things running smoothly. I mean just look at us- we have faulty tumor suppressor p53, if the body could not find other ways to fight cancer we would not be here at all, we would be born as a clump of cancerous cells. For many years researchers thought Tp53 was an oncogene, meaning a gene that causes cancer. Later it was discovered it is a tumor suppressor but it also has a nasty little quality called GOF- gain of function. Under certain conditions it acts like an oncogene, hence the aggressive cancers we see in LFS. No one supplement will “fix” it. We have to try and stick with the medical principle- First, Do No Harm.

Recently there have been several articles about antioxidants doing more harm than good where cancer is concerned. This falls into the theory, if antioxidants help fight cancer- I will plug as many as I can into my body and be cured.  Not necessarily- sometimes the body reads all those extra antioxidants as a sign of damage, after all their job is to show up and fix things. It’s like rubbernecking on the highway- you think oh wow there must be a bad accident- maybe I’ll go around. Or you wait it out to see what happened and it’s just a car pulled over on the shoulder. So if you call in the ambulance and fire department before you know that, they will show up and not be needed. Antioxidants can be the car on the side of the road, the body sees that and extra p53(ambulance) and starts planning how to help and calls in other reinforcements like the tow truck(more p53) or mechanic(yep, p53- jack of all trades- this mighty molecule can do a lot). The mechanic is throwing together parts to help fix whatever is going on- just like p53 decides to fix the broken cell(car) or take it away. Well wait a minute though, none of these services are truly needed- it was just misinterpreted because there was a traffic jam. Don’t create a traffic jam. Moderation. Talk to your doc about supplements and if it’s right for you. Keep your p53 as healthy as possible so it can fix the damage when it is needed. Supplements can help do just this and be supportive.

Where to go for More INFORMATION.

I see a Naturopathic Doctor who recommends certain supplements for me. I ask him about p53 specifically and he tries to find what he can, there usually isn’t much information. If you are curious about alternative or integrative treatments, check out a past blog post, Choosing the Best Alternatives with LFS.  I then go home and do my own research. I find out what the supplement is for, what side effects it might have and if it plays well with p53(if possible).  I’ve listed the places I get information from below. I usually consult Memorial Sloan Kettering Cancer Center’s site first. You have to agree to their disclaimer that it is not health advice or treatment before you can search for the various herbs and supplements. I find it to be pretty comprehensive.  You can find it HERE. CoQ10 is one supplement that I take occasionally. Especially the week before I have chemo. Many therapies have toxic effects on the heart, my hope is that CoQ10 might offer some protection. It is one piece of my very complicated LFS puzzle. I asked my oncologist about CoQ10 before I took it so he could double check that it wouldn’t interfere with the effectiveness of my treatment. This is important.

I’m not a doctor, please don’t take any of this as advice. It is information I’ve learned to try and keep myself living LFS. I’m happy to answer questions about my experiences. Feel free to comment below or send me an email at jenmallory@livingLFS.org.  There are also many others who are living LFS at a great support group on Facebook, with a wealth of knowledge and experiences on many different cancers, approaches, treatments and living.

 

 

Resources-

NIH- https://nccih.nih.gov/health/supplements/coq10

Mayo Clinic- http://www.mayoclinic.org/drugs-supplements/coenzyme-q10/background/hrb-20059019

MSKCC- https://www.mskcc.org/cancer-care/integrative-medicine/herbs/coenzyme-q10

Definitive Guide to Cancer, 3rd Edition: An Integrative Approach to Prevention, Treatment, and Healing by Lise Alschuler and Karolyn Gazella |  ISBN 978-1-58761-358-6 | 496 pages | April 2010

Apparent partial remission of breast cancer in ‘high risk’ patients supplemented with nutritional antioxidants, essential fatty acids and coenzyme Q10. Lockwood K, Moesgaard S, Hanioka T, Folkers K.
Mol Aspects Med. 1994;15 Suppl:s231-40. PMID: 7752835

Progress on therapy of breast cancer with vitamin Q10 and the regression of metastases.
Lockwood K, Moesgaard S, Yamamoto T, Folkers K. Biochem Biophys Res Commun. 1995 Jul 6;212(1):172-7.
PMID: 7612003

Coenzyme Q10 protects Pc12 cells from cisplatin-induced DNA damage and neurotoxicity.
da Silva Machado C, Mendonça LM, Venancio VP, Bianchi ML, Antunes LM.
Neurotoxicology. 2013 May;36:10-6. doi: 10.1016/j.neuro.2013.02.004. Epub 2013 Feb 19.
PMID: 23434506

Antioxidants and p53