I got the result already:
...seems I still stay alive.
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My current self-treatment regimen: Green tea (lots), Trader Joe's Flaxseed Oil (rich in GLA, gamma linoleic acid), one big sip per day, morning or evening. Daily 1 cup of tea made from a mixture of Cherimoya/Graviola bark and "Cats Claw" per day http://www.kcweb.com/herb/catsclaw.htm
http://www.healthyheartht.info/graviola.htm#graviolatree
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So far there are NO SIGNS OF TUMOR RECURRANCE!! No voucher for permanent cure of course so I will continue my "personalized anti-brain tumor regimen".
I was very sad to hear that Teddy Kennedy (whom I respect very much) was diagnosed with Glioma. My best wishes are with him and I sincerely hope he will be able to continue to be as inspiring as he was throughout his (pre-diagnosis) life.
Hello. I noticed the curve you use for survival rates is different from info I recently saw.
ReplyDeleteCheck out Stupp et al. (2007), Anaplastic astrocytoma in adults. Critical Reviews in Oncology/Hematology 63; 72-80.
Direct quote: "Patients of less than 50 years of age with normal mental status (class I) have an estimated median survival of almost 5 years (95% CI, 47-108months)."
My wife was diagnosed with AA a month ago. We saw the survival rates today. Still reeling. Will write back.
Thanks for the update. I just downloaded the paper, which is a very enlightening overview, do you have access to the full article? Or shall I send it to you? just drop an email address somewhere in a reply and I will forward the whole thing to you, thats the benefit of being a scientist. Access to information!
ReplyDeletePlease stay in touch and let me know how things develop. maybe I can be of help!!!
In General: It is basically impossible to find a study which predicts someone's specific case. It is also hard, and almost impossible, to extract positive information from publications, therefore I stopped investigating at one point. Knowledege is only useful if it helps for survival. And giving up
because of sentences like this one (From Strupp et al, 2007):
"Virtually all patients with malignant glioma will experience recurrence and will die of progressive disease."
This is the general conclusion in the literature, and I am very aware of that (being a scientist myself) but nevertheless its unacceptable. I prefer not burying my mind with statements that do not take me anywhere but into frustration and inevitable death, but rather think of Ben Williams, who is still alive and well, as far as I know. The power of the single case. Exception is not equal to impossibility. Rules ask to be broken.
I just think I should write an entire new blog entry about this subject. there is a lot to say here.
I will as soon as I have time. In am at work and part of my fight against my cancer is to work for my future and not let go discipline...
The Diagram shown is mostly made of GBM patients with AA-III cases merged into the study to increase the sample size. But the purpose was to show that Radiation together with Temozolomide is better than radiation alone. And this was achieved.
I am very sorry to hear about your wife. It will be a challenging time for you too. make sure you are with her unconditionally, thank God I always had people who were there for me, I cannot emphasize enough, how important this is. Also to have somebody who is a matter-of-fact-person who gets your view away from sickness and tumor issues and onto practical-daily life-things:
Take trips, eat good food, spend money on pleasant things. AND DO NOT GIVE UP HOPE!!!!
It is SO important to keep a positive attitude, even if it seems almost impossible at first: I still remember how my girlfriend dragged me onto that new years eve party (against my will), short time after the biopsy which gave me devastating diagnosis. Not that I had the best time of my life at the party, but, hey, all better than staying at home and waiting for -what?? -death!!
Thank you so much Yolanda! I will never forget how you were there for me and gave me all that positive energy (and also kicked my butt once in a while, when I needed it!!!) :-)
Hey. Us again. Find us at mess_fred@hotmail.com and I'll write in more details in private.
ReplyDeleteWe have the full article; thanks for your offer to send it. It was given to us by a friend yesterday at lunch. We lost our appetite; we lost sleep over it, specifically over the very sentence you are quoting. We e-mailed our friends & family members with the poor survival rate figures and got lots of feedback today.
Surprisingly, a distant acquaintance of ours wrote today. Turns out he had 'Hairy cell leukemia' (ugly name) at age 30; fought it; is now 48 and is cited by his doctor (now retiring) as the only guy who was *cured* of it. He is all about beating the odds, and being part of that unexplainable 1%. The gist of his e-mail is surprisingly similar to your reply and your blog entry for today.
Enough said. Write us and I'll give you our background & story. We'd love to correspond.
Fred