Things I know:
- You can not completely eliminate glutamate/glutamine from your diet...it's in every once living thing (except lard & most oils)
- Your body can create glutamine/glutamate when it wants it (thanks muscles and other less obvious trickery)
- You can eliminate glucose from your diet, but your body will just create it anyway (muscles save the day yet again)
- Limiting glucose and glutamine/glutamate is ideal for slowing tumor growth, but when hungry, a vegetable which may increase circulating glucose is better than eating a bit of meat (only because I'm IDH1 positive - the glutamine eater)
It's crazy, I remember a phone call with my nutritionist where she emphasized that my green smoothies (which are all vegetable save an avocado & lemon) turn directly into sugar in my body; that without protein with each meal and snack, I was killing myself. Not her words, but still. She was emphatic about the huge sugar spike that would surge through my veins, therefore feeding the tumor. IE: Killing myself. Same same. It put the fear of Hermie in me, driving home the whole protein must be included to survive mantra. Remember all the times I've written about feeling guilty about my apples? That was because of my nutritionist. As was my deviation from my green smoothies. It leaves you feeling crazy. Who's right? What do I do? Am I just supposed to pick the lesser of two evils? Glucose spike over protein consumption? Girl still gotta eat.
Things I know:
- Known unbiased tumor fighter = caloric restriction (click for a great study on the benefits). It doesn't seem to matter if you eat the calories from protein, fat, or carb, just be sure to take your BMR and cut it by 30% (some say 20% others 40%). That's the surefire way to hypnotize the giant. It won't stop him, but it'll sedate him, and maybe during that time we'll find just the right cocktail to kill him. It's also the thing I always forget. Or maybe I just don't want to deprive myself so I black it out from time to time. :)
- Healthy fats like omega-3's (fish oil) continue to be a great way to supplement my diet. One of the least burdensome of the food groups, in regard to the glucose/glutamine issue. However, not that palatable as a snack. Just sayin'.
Am I more scared about this MRI than usual? Maybe. It's the turning point that we hit and had tumor growth after the first brain surgery, so technically, this is when Herman should show back up. Not to mention the fact that the proliferation rate of this tumor was faster than the first. If they see tumor I won't be surprised, only disappointed. If they don't see tumor I will consider it a miracle. It's not that I'm pessimistic necessarily, I just don't take this no-visible-tumor stuff for granted. I don't assume that all of these treatments "have" to work. There have been so many that have gone before me that have given everything they had, and still, it wasn't enough, they were taken. I know that life is a gift, and although I'm scared, more than scared actually, with every exhale of breath I remind myself that I just enjoyed a luxury.
Time for lunch...
.JPG)
Hey, so I have two questions. Isn't an astrocytoma a grade 3 tumor? That's what I was told. If this information is only for IDH1 mutations then why low grade only? One more question. So what is the end result of your research? Vegan? Paleo? yes sugar or no sugar? Protein or no protein? Or just calorie restriction and no other special diet? I'm so confused!
ReplyDeleteHey Katie, don't worry, it is confusing. This is all coming from memory so please don't take it as fact - probably should say that with everything I say, feel free to double check me.
DeleteSo you can have an astrocytoma in any stage (even a IV), all it means is that your tumor cells originated from the astrocytes in your brain. You can have IDH mutations in all stages, but I was specifically referring to the fact that as a stage II with the mutation it looks like glutamine/glutamate are the primary food sources for mine. I don't know about stage III or IV. As far as food, I've just ironed out a heavy vegetable diet. Essentially, 80% plant 10% fat 10% protein, and I'm going to measure to try and stick within a caloric restricted range (average of a 30% cut) - at least most days of the week. Sugar is always bad, but in my plant percentage I'm allotting for 10% of that for fruit. (Yay for apples!) This probably all sounds insane, and I'm never going to be perfect, but I like to have guidelines in place so that I don't have to think about it that hard, it becomes second nature.
Did any of that clear things up? Let me know if you have any other questions. I'm happy to help!
Katie, I'd like to add that this discussion of glutamine/glutamate applies to IDH1 mutant tumours of any grade (2-4). I think Jess has been referring to the fact that low-grade brain tumours tend to have glucose uptake that is indistinguishable from glucose uptake by normal brain, as seen on an FDG-PET scan (which measures glucose uptake). Higher grade tumours are more likely to have elevated glucose uptake. In general, tumours can feed on glutamine in addition to glucose, so both have to be considered.
DeleteThat helps, thanks!
DeleteExactly, Stephen. Thanks for expanding!
Deleteand mean while you need to LIVE your life....too much research could be hampering your enjoyment of each day you are given...and there may be no definitive answer...
ReplyDeleteVery true, there definitely has to be balance. And I was just talking with Dan last night about the fact that after all of the years of research, all of the fads and new discoveries, it all boils down to calorie restriction. It's the one thing that does not fail. So if everything else is too crazy, just eat like a bird. Even if it's cookie crumbs, I guess. :)
DeleteIt can definitely make people crazy, and perhaps I may seem slightly obsessed, but I'm fascinated, and curious; I feel like a bloodhound with a scent and I have to follow it. And sometimes it's just an empty trail, or a false lead, but then there's times like this where I could finally mitigate my seizures for good, or really stunt Herman's growth, and that knowledge was from never giving up, not settling for what I already know - or think I know.
I research in spurts, and since I'm coming off a week of non-stop digging, it's definitely time to get out and enjoy other stuff. Like you said, gotta go enjoy each day.
Thanks for the comment :)
I, for one, appreciated all of the research you do. Keep up the good work!
ReplyDeleteThanks Josh :)
Deletedid you find your nutritionist because they were experts in ketogenic diets or were they a general nutritionist who thought keto was the best path?
ReplyDeletethere is a lot of research comparing a Calorie Restriction to low protein vegan diets of a normal calorie intake. and they seem to create the same hormonal benefits for MTOR signalling and IGF-1 levels without the weightloss, although for brain tumour purposes this may not be all that relevant in terms of total blood glucose/glutamine levels.
unfortunately your right, our bodies are very good at starvation and will create all the glucose and glutamine you could possibly need from stores. hopefully however our body uses that as it needs it and not leaves it running free in the blood for too long.
which reminds me, i remember once you saying you were told not to exercise because it spikes blood glucose, which seems counter-productive to me because although it spikes blood glucose your muscles are using that glucose to work, its not being left in your blood stream for too long for your tumour. and also it increases insulin sensitivity in your muscles for when its at rest meaning your absorbing more of your glucose from meals faster than you would have been without the exercise, which in the long run should mean a net benefit. cancer patients who exercise 150minutes a week have longer survival time than those who don't. and i believe its a combination of improved insulin sensitivity and the boost exercise gives your immune system.
anyway maybe a combination of low protein and CR is the best bet. although it is going to be painful in the long term, i'm sure it would be worth it though. anyway good luck with the MRI, hope it surprises you with how well it goes.
My nutritionist is an oncology nutritionist, she just thought it was the best path. Second best path was Paleo (minus the tubers).
DeleteI really appreciate the info about the vegan diet & the comparison to the a caloric restriction. It's such a shame that there isn't that much good data on vegan diets for brain cancer. Which, of course, doesn't mean it isn't great. Just a tough thing to gauge.
I absolutely agree with everything you pointed out with BG & exercise. That's why it was so hard to follow Seyfried's protocol. (He's the one who says no weightlifting, or hard exercise, only easy walks or gentle yoga.)
I'm sure you've seen that there is a small portion of people succeeding on all of the diets whether its vegan, vegetarian, Paleo, RKD, CR, and even the SAD. Unfortunately, there's no single diet that will stop brain cancer, which sucks. It makes it much more difficult to know what to do. I guess it has it has to be what feels right in your soul. I really appreciate the info on the 80/10/10. I've been doing raw vegan lately and it's a lot of fun! I always enjoy evolving and trying new things.
I still don't know what's right, what's the absolute best diet, but I know that if I'm sticking with some CR from time to time, or the majority of time, it should help.
Thanks for introducing me to the 80/10/10, and thank you for all of the input, I really appreciate it.
nutritional science isn't taken seriously enough in general unfortunately. not enough financial incentive and some ethical issues prevent it going to clinical trial. so we will always be somewhat in the dark. 80/10/10 is an odd one. the author would like to see people eat purely fruits almost and quite high calories, it isn't a cancer diet and isn't intended to be although some people seem to have cured themselves with it. i'm still to cautious to go full in to it. i'd like to keep my blood sugar lower than massive fruit dinners so i don't adhere to 80/10/10 exactly as it was planned. more complex fibrous carbohydrates and more fats than he'd like. i think the most important thing is the 10% protein of which should be plant protein whilst maintaining CR and that's what instinctively 'feels right' as you say. at least to me with everything i've read. i do eat a lot of fruit now though. just not as much as the original diet was intended to be. apples and bananas feel right and make life more liveable :) when i was living off creamy coffees, egg yolks and macademia nuts i wanted it to end.
DeleteYa, I'm with you, 80% fruit seems pretty intense, but it sure is nice eating more fruit than the RKD. I am seriously enjoying the raw vegan food, and I immediately lost weight. Eating fruits and veggies is so much more enjoyable. The smoothies are delicious, making it easy to do CR. Oh the fatty coffee was so good at the time, but oddly, I don't miss it. I'm not even craving anything. And meats sound gross. Didn't anticipate that. Thanks again, you were a major catalyst to a much more enjoyable lifestyle.
Deletenot a problem, the amount you've helped me just by righting this blog is crazy. everyones research leads in different directions and there a lot of potential answers, pooling them together in discussion sometimes benefits everyone.
Deletei noticed you took boswellia, i take a load of supplements, most of them are on your list too. but boswellia really does not sit well with me. i get a lot of stomach distress. did you have any of this?
Thank you! I do take Boswellia, but we can't get the good stuff in the states. I've read that African Boswellia is stronger and has less toxins. I've taken both African and Indian, and neither really caused any problems. I make it a point to take it with some fat, I believe it helps it absorb. Where do you get yours/brand/% if you don't mind me asking?
Deletei've never looked into the different types of boswellia. i just bought a brand called swanson. the only other supplement i had problems with was ip6 and inositol which made my head spin at higher doses but i lowered the dose and it calmed down. oh yeah and ecgc made me puke my guts ups. 400mg of boswellia causes me painful stomach issues. i looked it up and it is a side effect for some people. so perhaps i'm just not able to tolerate it. although i take so much now it might just be the mixture causing the issue.
DeleteThere was a PBS documentary by Michael Mosley called "Eat, Fast, and live longer". It takes a look at fasting in particular, and the health benefits, and the best methods. It wasn't looking into diet and cancer specifically, but if I remember correctly, it showed that periodic fasting could produce the same/similar results to a restricted calorie diet health wise. It may give you another direction to take your research. Mosley did a couple of others in that series that were interesting too, "The Truth about Exercise" and "Guts" that are worth checking out too.
ReplyDeleteThanks Matt! Oddly, my husband and I watched The Truth About Exercise (accidentally) several weeks ago, it's a great film. I just pulled up Gut and watched it, and now I'm on to Eat, Fast, and Live Longer. Thank you for the tip!
DeleteJust watched Eat, Fast & Live longer. Fantastic! Thank you so much for turning me onto it.
DeleteGlad you liked them, I thought there was some fascinating info. I've tried the 5/2 day restricted calorie for a bit last year and it did seem to jump start weight loss for me, but that was in addition to going mostly vegan (can't give up cream in my coffee) and more exercise. Also keep in mind it's my wife with the brain tumor, not me. I will say, for me, a move to a whole foods (ie, avoiding processed foods as much as possible), plant based diet has made me feel better and perform better physically.
DeleteIf you don't mind me asking, what type of tumor does your wife have? I am impressed that you're researching and helping her with her journey! The video was so good that we shared it with family, probably going to mention it in a post soon because the information is so helpful. The 5-2 is very doable for most people. What a cool technique.
Deletematt, i do 5:2 some weeks too, its quite a big diet over here in the UK. and i used it for the reduction in IGF-1 which it is great for. but if you or a partner are fighting cancer i'd urge you on the other 5 days of the week to think about keeping calories lower than normal rather than the typical higher than normal calories that come with this diet because i'm not sure if 2 days low igf1 and extremely low blood glucose+glucosamine quite evens out against five days of high blood glucose/glucosamine. i think its a very good tool to add in though! especially if you know that one or two days of the week are going to be extra social (more food). it gives you a lot of room for manoeuvre! so i use it a lot. i wish you and your partner all the best! :)
DeleteI'll email you, to give you the story rather than take up the comment space.
ReplyDelete