Join now

Already a member? Sign in

Welcome to Inspire!

What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.

Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.

How - Joining Inspire is completely free and usually takes less than a minute. Join now!

corner corner corner

Nutrition

gale
0 Recommendations

When we had the VHL conference in Orlando, I talked a little what works for me and what I'm bothered by. Oils being one. I was asked after the conference a little more information on the oils that I was referring to.

My back is bothered by some foods that I eat due to various tumor involvement. I try to eat only olive oil. Most all of the other oils cause my back to be inflamed, i.e. safflower, sunflower, vegetable, partially hydrogenated oils, etc... The jury is still out on canola oil.

Gale

Explore topics in this discussion:

Exercise Cancer Surgery Allergies Pheochromocytoma Stress Hemangioblastoma

14 replies

AEckerman

I know flaxseed oil is supposed to help with inflammation in general. I believe the Omega 3's and 6's as well.

I was just talking to Joyce about this, but I think we really need to find out more information from some top notch experts regarding serious nutrition and vitamin supplementation.

I'm not exactly sure where to find this information as it pertains to VHL - that's the tricky part. We need very specific information and guidance.

Alison

marie3

Not to go too far off course, but I've been taking these all natural medications for a month now. I surprisingly noticed a difference in some symptoms I was having. Although I'm still slightly skeptical with this whole "all natural " Eastern medicine. I read somewhere that we ("we" meaning people with VHL) should be taking a daily multivitamin. I don't think this holistic, all natural, doc believe's in anything daily--for life. Also I thought I read that soy is supposed to be a tumor suppressor. But, I also read that your body doesn't process soy very well. Any feed back?

I'm interested in learning about foods that are anti-inflammatory and tumor suppressing.

ALB

There's so much conflicting science on nutrition--VHL or no VHL. Plus it changes all the time. A couple of things that have been pretty steady the past few years (I follow this stuff but not everyone wants to):
1. Fully or partially hydrogenated oils/fats=bad for everybody.
2. Most people need a multivitamin. Our eating habits as a culture aren't that good at getting us all the nutrition we need.

Many synthetic food additives aren't real healthy. Since we've got damaged genes, the theory behind eating more natural things (i.e. buy the ingredients, cook 'em at home, avoid products with ingredients you can't pronounce) is that leaving synthetic chemicals out ups the chances of avoiding more damage and tumor growth.

But of course there's no proof. So it seems to me that plain old good sense is the way to go. For pete's sake, most of us don't have the time and money to buy all high end ingredients and fix elaborate meals 3 times a day.

Just try to do better--phase out the fast food, minimize eating out overall, easy on the salt & butter & sugar, eat more fruits & veg. If a food doesn't work for you don't eat it. And if you've got the ability to go full out organic with juicing etc. go for it. Use as many of the ideas from Orlando as you can because they won't hurt you.

That's my opinion.

Nelsonb

In respect to soy foods, my understanding is that soy products that required fermentation are more easily digested. UNfermented would be at least soy beans and soy nuts. I'm not sure what products would have involved fermentation, but I'm guessing soy milks, soy cheeses and tofu would fall into the fermented category.

However, many people find themselves allergic to soy products in any form. How one would confirm that, I couldn't say, but particularly anyone who is known to be allergic to one or more other things might want to be careful.

My mother, who discovered through a doctor's tests that she was allergic to soy products, had that same doctor also tell her that soy products might also promote cancer in some way. Since she was giving up soy products anyway, she didn't note the details that the doctor had mentioned, so I can't tell you any more.

In any case, I agree that some sound nutritional information, on soy products and more, could be very helpful for all of us with VHL.

As for what to eat until then...

Doesn't our VHL gene make us twice as susceptible as anyone without it to toxins in any shape or form? I would think that also applies to potentially harmful foods we could injest, too, such as hydrogenated oils.

As ALB mentions about being easy on the salt, butter & sugar, I suspect even overdosing on such "regulars" as those can be negatively effected by our defective gene.

But don't forget other precautions, such as keeping that extra virgin olive oil refrigerated, and washing those fresh veggies well (tomatoes & chili peppers come to mind after the recent scares with them here in the USA).

Nelson

gale

you wrote:
"I think we really need to find out more information from some top notch experts regarding serious nutrition and vitamin supplementation.

I'm not exactly sure where to find this information as it pertains to VHL - that's the tricky part. We need very specific information and guidance."

You're right, that is the tricky part. Most physicians did not have nutrition as part of their education. I am also finding that many more people will not believe in anyone unless it is said by a physician.

VHL is a small percentage for many researchers; therefore, nutritional guidance is not a top priority.

We need to be our own advocate and compile what seems right and wrong.

Many people also believe since a product has been approved for human consumption, it has to be okay for everyone. We all know people that feel oreo cookies are fine.

Then there are folks that are more conscious what they consume. I have been both. When I consumed what I thought was fine, I was averaging a surgery every two years.

Now that I am more conscious what goes into my system as well as what touches it, I had my last VHL surgery 15 years ago.

You make the choice!

Gale

joyceg98

You might want to take a look at the video available at http://foodmatters.tv For $5 you can watch it over the internet.

I have done four programs for powerfulpatient.org about nutrition lately, and will do more. While we do not yet have a food expert who can explain specifics for VHL per se, we do have food experts who work with people who have similar conditions, and we can learn from that.

At http://powerfulpatient.org/archive/
08-26 Food for Health
08-30 Food Matters Too (with Kurt, living with metastatic pheochromocytoma)
08-33 Never Be Sick Again
08-34 Managing Your Genes (with Gale Lugo, living with VHL)
08-35 Strengthening Your Fertility (Dr. Wilson talks a great deal about nutrition in this show)

Best wishes,
Joyce

Kristel

I have just recently started trying to eat healthier. More organic. fewer processed foods and not eating out as much. Given that we are already at a disadvantage with VHL we should all eat as helthy as we can and exercise regularly. We should give ourselves the best chance we can. I am convinced that if I'd had a healthier lifestyle at the time of my diagnosis I would not have lost my sight as quickly.

There is also tons of information about vitamins online. The FDA has a website about safety and daily reccomendations. I think we all need at least a multi-vitamin. Without reccomendations specific to VHL we all have to do what we think is best for our specific conditions. Any healthy change you can make is sure to help.

Kristel

Correction: Not FDA

It's the Food Standards Agency that has the information on vitamins. The FDA has some information as well but it's not what I was referring to.

joyceg98

If you have a favorite site that provides information about vitamins, feel free to share it here.

Ones I particularly like at http://www.drweil.com and http://www.mypurium.com

Dr. Weil is an M.D. who is leading the organization of doctors practicing "integrative medicine" -- regular Western medicine PLUS information about nutrition and Chinese practice as well.

Mypurium is the site of David Sandoval, whom I interviewed for PowerfulPatient. See http://powerfulpatient.org/archive/2008/08z_food_for_health.php

Cheers,
Joyce

MaryP

Just a word of caution. My brother, who also has VHL, began using a product to improve his immune function when a few of his VHL tumors seemed to be growing. He began using this nutritional supplement a year ago. In the past few weeks, when he began losing his eyesight, he went in for another MRI. His brain lit up. He has numerous, large lesions, many with cysts. The neurosurgeon told him he has never seen anything like this with VHL. Because of the number, size, and location of all these new tumors, surgery is no longer an option. I do not know if this immune enhancing product he has been on is the culprit, but it certainly didn't help. I emailed the company for a list of ingredients. It includes the usual vitamins, minerals, and natural products intended to help the immune system. A couple of ingredients stood out because of the amount. A daily dose of this product included 480mg, 800% of the daily recommended dose of Vitamin C. It also included a 250% dose of Riboflavin (vitamin B-2), as well as a 300% dose of Vitamin B-12. Again, I have no idea what has caused the dramatic growth of my brother's tumors, but I think we should use some moderation and caution as we move forward in our search for help.

gale

I agree with MaryP that some caution should be utilized. I think this applies to everyone, with and without VHL.

Vitamin C and the B vitamins are water soluable vitamins and should be flushed from the body if not needed. I will say should because it is supposed too and all medical experts will tell you that as well, but one never knows with all the unknowns.

If I were looking on the outside and observing this individual, I would ask many more questions like age, weight, stress factor, elevation, dietary habits and much more. There are many factors to consider.

We really don't know if the product helped or hurt him. Be careful in everything you decide to ingest, food, medicine, supplements, etc...

Be well,
Gale

SHAWN1

When I was first diagnosed with vhl nearly 15 years ago, I was physically active but didn't really watch what I ate. As a normal reaction I was looking for answers or ways to beat vhl as it has wreaked havoc on my family. I explored different options but one that I have remained consistent with is soy. I first used tofu in various pasta dishes. Then my girlfriend, now wife, introduced me to soy milk (8th Continent Light Chocolate is my favorite) and I have been drinking it daily for 7 years. I try to follow healthy dietary and exercise guidelines as well. As Gale says though, we really need to be careful with food and medications(especially) we take as all of are different. You want to make sure you don't have any allergies or other conditions that may cause an adverse reaction when changing or supplementing your diet. As far as the Soy, I have been clean since I had a hemangioblastoma removed 1994. I'm not sure how much it has helped me(I will never know) but I don't think it has hurt me in any way.

Best of luck to all of you,
Shawn

joyceg98

You are quite right that we all need to be cautious. I don't read anything in that list of ingredients, Mary, that I have ever heard associated with dramatic new tumor growth, but it might be something else in there. More likely it is some other factor.

And of course the best way to get any supplements is from natural sources (like food) rather than pill form if at all possible. That's why juicing fruits and veggies is better than vitamin supplements -- we know that Mother Nature made it rather than some pharmaceutical company, and that it doesn't have any "fillers" that might be working against us.

I have read studies about some vitamin supplements (include vitamin C) that say that if you look at the chemical structure of the synthetic compound, it is slightly different -- in one case, a mirror image -- of the way it is in nature. Because the structure is different, it might be seen and handled differently in the body than we expect.

Organic foods have at least 25% more nutritional value than conventionally grown foods.

Natural vitamins (from organic sources) are better and stronger and friendlier to our bodies than synthetic ones. Buying them in pill form is more expensive. Pressing them out of organic veggies is a bit more trouble, but less expensive and more delicious, creative and fun!

Best wishes,
Joyce

live

Live like the spartans. Frugally.

Add to the discussion

Don't have an Inspire account? Join now!

Forgot password?

Group leaders

You