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Pontine glioma

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Darren,

Pontine gliomas are usually very difficult. How well has your son be

faring on the oleander? Does he have side effects? Is compliance

difficult for a child? If he is having favorable results, what else

is he using/doing? It is extra sad when a child has cancer.

At 06:36 AM 8/16/2009, you wrote:

>Just a quick aside on the oleander treatment. I belong to the

>oleander soup group as well. Dr. Marc Swanepoel and Tony Isaacs are

>great resourses there. We use oleander on my 10 year-old son who has

>a pontine glioma brain tumor. The one thing about oleander is that

>it often takes 2-3 months to start seeing effects on a standard

>dose. Dr. Marc would probably be able to tell you if a higher dose

>would sway that time table at all. Either way, I think the

>information you gather there will be honest and forthright.

>

>Darren

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,

Yes, pontine gliomas are horribly hard to treat. We didn't have to option to

go totally natural, as his tumor is far too agressive. However, we are using a

combination of standard treatments and naturopathic methods. His tumor did not

respond well to radiation or the first line of chemotherapy, Temodar. He is now

on cetuximab (an EGF inhibitor) and irinotecan(on hold for now), along with

celebrex and clomipramine(anti-depressant with anti-glioma effects). On the

natural side, we use Sutherlandia OPC(oleander), vitamin D, Omega 3 fish/flax

oil, and various other supplements. We plan on starting low-dose naltrexone as

soon as we can get him off of morphine.

I know many here and on the oleander soup group would shun using " allopathic "

medicine, but they haven't seen the aggression of this tumor and how quickly it

can overtake the tiny brainstem. I will give my son every chance to survive

that I can. So far, we saw a .5 cm reduction in the tumor in two dimensions

only two weeks after starting on cetuximab/irinotecan, and that being after

progression that occurred after radiation and temodar. He actually ended up in

the hospital after this due to headaches and other symptoms, apparently due to

the changes the shrinking caused.

If you have any suggestions, I would love to hear it. I am constantly

searching for suggestions. Thanks for asking about Luke, .

Darren (Luke's dad)

http://www.caringbridge.org/visit/lukepollok

>

> Darren,

>

> Pontine gliomas are usually very difficult. How well has your son be

> faring on the oleander? Does he have side effects? Is compliance

> difficult for a child? If he is having favorable results, what else

> is he using/doing? It is extra sad when a child has cancer.

>

>

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