Alison is almost done with the radiation, which is a darn good thing on so many levels. She says the mask that fits on her face to make sure the landmarks stay consistent is just getting unbearably tight. So after today, only 3 more sessions to go!
She will have follow-up lab work to see how her platelets are doing - they should be coming back up. Her platelet count determines whether she can continue the Temodar or not, both in the immediate and near future (low platelets = no Temodar).
The big breaking news is that she and Kirk met with a nutritionist that works with the oncology group and got some great suggestions. The main change is that she will be trying a "ketogenic diet". Those of us in the health field know this as a diet that is often used for people (especially children) with seizures, and it sounds like the nutritionist has reason to pitch this diet for folks with brain tumors as well (see the links below). The diet consists of something like 3 or 4 parts fat to each part protein, and very little carbohydrate. A less restrictive version could be considered an Atkins diet but with much less sugar. The idea is that the body burns fat for energy and makes ketones (not dangerous in this sense). Normal cells can use either glucose or ketones for energy; the faster growing tumor cells only use glucose. So, the hope is that the diet will even out her hunger rages/shakes/hypoglycemia sensation AND starve the blood-sucking tumor cells out of existence. Going for both symptom control and improved survival, this is a great thing to try. AND can we talk about eating high fats as a diet prescription? Most of us only dream of such a thing...
http://www.ncbi.nlm.nih.gov/pubmed/17313687 -for the scholarly article
http://www.time.com/time/health/article/0,8599,1662484,00.html -for a nice "lay" atricle
So...she is going to try this. Which means I am going to try this as she is coming to Aptos for the weekend! I am VERY excited to see her and to give this new therapy a try. We'll keep you posted. Love to all, Deborah
(and remember that if you are having trouble posting, please contact me at whit@got.net. Pretty soon I think brother Jon will take over Blog maintenance, but I don't which email to give you for him yet)
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We will have to start calling you CremePuff... Aptos for the week end
ReplyDeletesounds so much better than Oakland for the week end again. Hey,
Karen, if you're listening, I'm just kidding. (Oh yeah, sure). Are you
and the kitty cat still a snuggling couple on these wet days? My pooch
is stuck to me like glue. Nice, huh? Sounds like you have a great net-
work of family, friends, and medicos on your team. Go team Alison!
Sending you positive vibs today and always. Love ya, Stphanie J.
Hi Deborah and Alison!
ReplyDeleteI just landed here because my daughter is on the ketogenic diet and it always interests me to find other families who are using it or considering it. It won't surprise you that my daughter is on keto in order to control her epilepsy (which it has truly been a miracle for), but I also know an adult woman who uses it because she has pulmonary fibrosis.
Many Internet sources will tell you that the diet isn't prescribed for adults because it's unpalatable and they can't stick to it -- but there are so many ways to make it doable!
If you are interested, I have an e-mail that I saved from Mary (the woman with pulmonary fibrosis) who described what it was like for her body to transition from burning glucose to burning ketones for energy.
It's not easy, but if the payoff is killing the cancer cells, that sounds like pretty good incentive to me! :)
Good luck with keto and best wishes to you, Alison, for beating the cancer. Sounds like you have some great people to fight right by your side!
(Oh, and I don't like leaving my e-mail address on the Internet (because that's just *asking* for spam!) but you can get it from the "About" section of my blog if you want that info from Mary.
Warm greetings from the Yukon
We need to talk. I started this a few weeks ago and have recurrent GBM. I would like to find out if you are still doing it. I'm now on Avastin, CPT-11, and the Cal restricted Ketogenic Diet. Let's talk please. eric.jones@hillsdale.edu
ReplyDeleteGood luck to you!!!!