David Says:
Trametinib
Updated
Prexie Says:
My 21 month old grandson was born with NF1 and has siginificant plexiform nonmalignant tumors especially of concern on his spine. He has had one surgery on a double tumor at the base of his neck in January which went well, but the tumors continue to grow despite interferon treatments which have now been discontinued. His neuro oncologist now is considering the use of trametinib a kinase inhibitor designed for use to combat melanoma. My concern is two-fold: the significant potential side effects, and the cost. Anyone else dealing with a similar set of circumstances? I would appreciate your advice/observations regarding this drug, how to obtain it at a reasonable price, and whether health insurance is likely to cover the cost of treatment.
1 Reply
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@Prexie,
Sorry to hear about the condition your 21 month old grandson is in. When it comes to something as scary as having multiple tumors, I understand why you have to take action immediately, but if you put some time into a little research, there are a plethora of natural anti-cancer/tumor agents that don't cost an arm and a leg...minus the harsh side effects of pharmaceutical preparations. You don't have to be a doctor to know that there's other options out there that have been studied and proven to shrink tumors and cure cancer without emptying your pocket book.
To name a few:
Cannabis (CBD's) *CBD's don't express psychoactive effects and is legal across all 50 states
Frankincense *dilute with fractionated coconut oil
Alkalinity
Baking Soda
Fruits and Vegetables *most, if not all, possess anticancer properties (juicing them when their fresh may be best for a baby)
Various herbs *see a naturopathic physician for specific types that are safe for babies
Gerson Therapy
and more...
I don't mean to side step your question about advice regarding the drug that was recommended by his neurooncologist, but if you can avoid potentially harsh treatment options for something proven to be effective without side effects, then why not? The research, studies, testimonies, etc have already been done..it's just a matter of spreading the word to make more people aware that pharmaceutical meds aren't the ONLY option out there.
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