Good morning. Been resting up from my worcation. I went to my parent's house to sleep, and meditate, and watch trashy Bravo TV (we don't have television anymore), but I got trapped in the vortex of the tumor world. Researching to make sure that you're living right, is much more satisfying than any other pastime. The tricky part is that my brain gets fatigued pretty quickly, and by Saturday it was fried. That morning Dan and I drove to the senior center where Grams lives. We brought her some goodies, and pushed her around outside. As we were driving home I had a mental lapse, I literally couldn't remember where I lived. Weird. It took several minutes for me to remember the image of our home. My mental Rolodex flipped from house to house, city to city, and finally I figured it out, but it was scary. Several moments of dementia. I don't know if it was a seizure thing - it didn't feel the same - or just lightheadedness from the CR, or worse yet, tumor growth? It scared Dan. It scared me.
I'm chalking it up to mental exhaustion. No need to panic. The MRI is near, and results will be available next week. We will know what's going on in my brain (to a certain extent) soon enough. I kind of don't want to know what's going on in there. I'd rather just keep going along with my current path. If the tumor is growing again, I don't know what my next step will be. There are a few promising clinical trials out there, and some positive off-label drugs I could add. I know that if the tumor is growing the next recommendation is radiation. I also know that as an IDH1 mutant glioma fighter, radiation is said to be more effective. That's new information that has recently been coming out in the research, anyway. It's a double edged sword because it's always great to have more treatment options, but at the same time I really, really, really don't want to do radiation. So, we'll see how it goes.
In the meantime, after last week's research, I've decided to go raw vegan for a bit. It's mostly veggies and some fruit. I realize that there are all kinds of diets out there for cancer, and brain tumors; the RKD, vegan, vegetarian, Paleo, caloric restricted, macrobiotic, you can do the Gerson therapy, or do the alkaline diet, and you can find someone who has survived from each one, even survivors who have never changed their diet and still live on SAD. It's kind of a crapshoot. There is no surefire diet to stop brain cancer, or any other cancer for that matter. These molecular aberrations will not respond to the same diet, nor the same treatments. Cancer may be the most poignant riddle of all time. But with that being said, there are direct correlations between elements of diet and tumor growth. It has been proven. For example, IGF-1 in animal protein, artificial sweeteners, sugar (of all kinds), artificial dyes, nitrites & nitrates, MSG, just to name a few. So what do you do? Do what feels right. We are all walking this walk together, but at the same time we have to use our own legs. I love learning from you guys, and I appreciate you sharing your knowledge and wisdom. I wouldn't be as far as I am without your help. When I share things, I don't expect you to jump on my bandwagon, I just want to give you the chance to check stuff out and see if it helps your situation. The IGF-1 issue in animal protein was definitely a game changer in our household. Thank you for all of the comments over the past several posts, the dialog was exciting, and very instrumental for Dan and I to adjust our lifestyle.
In one of the comments there was a mention of a couple of documentaries, the most profound being (in my opinion), Eat, Fast, Live Longer. If you enjoy nutritional documentaries, or just want to get your mind blown, please check it out below. (If you have any problems viewing it CLICK HERE.)
Eat, Fast & Live Longer HD by limoslight
Thanks again for all of the continued help as I navigate this curious journey, I can't measurably express my gratitude. There is such power in numbers.
hello Jessica, i was wondering if you had temodar treatment. im following you for the last year but you havent written about chemo. oh another question. after your surgeries how much tumor did they resect?i mean did you have a complete resection? thanks . keep us posted
ReplyDeleteHi, I have yet to undergo radiation or chemo. For the first tumor my doctors said it wouldn't be effective. For the second tumor (a different set of doctors) they thought it may be 20% effective (if I'm remembering correctly). But they did not recommend treatment until the tumor grows. Then treatment would begin with radiation. Both resections were said to be complete. My first group of doctors after the first tumor wanted me to do radiation but I went against their wishes.
Deleteanother something to watch when there's time and energy .... thetruthaboutcancer.com
ReplyDeleteWe'll watch it next! Thank you :)
DeleteYou are quite right about different cancers being responsive to different diets. Caloric restriction is probably the only all-purpose dietary measure for any type of cancer. It is crucial to have as much molecular understanding of your individual tumour as possible.
ReplyDeleteSome tumours are driven by IGF-1/IGF1R signalling and some aren't. Some are responsive to insulin, and some aren't. Some can metabolize ketones and others can't. Some want glucose, some want glutamine, some want both in high quantities. In the absence of complete knowledge it's best to cover all bases. Whatever diet you adopt, I think a good rule is to maintain a body weight in the low range of normal. That is the best indicator of whether there's excess in the diet. Cancer is an anabolic process that thrives on excess.
It's unfortunate that most trials for recurrent cancers require you to be refractory to conventional treatments (RT and chemo) to be eligible. It is completely understandable why someone would want to avoid something like radiation until other options are exhausted. I think if a person has made the decision not to undergo RT, they should not be deprived of the opportunity to undergo some very promising therapies being tested in trials. It seems unethical.
I hope the MRI goes well and shows the Newcastle treatment has been working as expected!
Stephen, you always have the most succinct and logical view - with scientific proof - on this stuff. When I start to think that it's all just a tangled web of nonsense, I am reminded that there is definitely reasons to the madness. Thank you!! You keep me grounded, and I appreciate that so deeply.
Delete