Hi, All!
My 6 years daughter has diagnosed brain stem glioma. Operation and biopsy are not possible.
Standard radiotherapy + temozolamide did not help. In the near future there will be another chemotherapy course: avastin + irinotekanum.
I have read almost everything on the site and have a mess in my head. Could anyone recommend a cocktail for my case?
The main questions:
1. Most of drugs are not permitted for children "officially". What drugs are really should not be used by children?
2. Dosing for 6 years child.
Thanks,
Dmitri
My 6 years daughter has diagnosed brain stem glioma. Operation and biopsy are not possible.
Standard radiotherapy + temozolamide did not help. In the near future there will be another chemotherapy course: avastin + irinotekanum.
I have read almost everything on the site and have a mess in my head. Could anyone recommend a cocktail for my case?
The main questions:
1. Most of drugs are not permitted for children "officially". What drugs are really should not be used by children?
2. Dosing for 6 years child.
Thanks,
Dmitri
Dmitri, I am sorry to hear about your daughter's diagnosis. I don't know about dosing for a 6 year old. What I can tell you is what we did when my then 12 year old daughter was diagnosed with a GBM in her left temporal lobe. During the standard of care, we worked with a naturopath that tested her saliva on a monthly basis and sent supplements accordingly. When the clinical trial and standard of care (radiation, Temozolomide, Avastin) failed and the GBM began filling in empty space in the folds of her occipital lobe, I asked her team to put her on a low dose of chemotherapy and we found an integrative medical center that would administer high doses of Vitamin C intravenously through her port. She now eats a raw vegan diet with no processed foods whatsoever. After 6 months, her doctors at Dana Farber Cancer Institute are amazed at how well she is doing and have told us to continue doing what we're doing.
ReplyDeleteHere in Russia integrative medicine does not exist as phenomenon. "Naturopaths" almost always are people without medical background. So I am a "naturopath" for a moment.
DeleteI try to investigate all possibilities for my daughter beyond chemo and radiation, really accessible (immunotherapy, vaccines, etc.) for us mostly in Europe, but basically failed.
The cocktail is one option among others, I supposed. But maybe it is the only option.
Dmitiri, my heart goes out to you. What most of us try to use here are agents with at least promising results in the lab. Sadly, pediatric brainstem gliomas aren't as well-studied, and are somewhat different biologically from most adult gliomas. What we try to do with our cocktails is inevitably a "shot in the dark," and it's all the more so for your situation.
ReplyDeletePediatric dosing for any agent can be a bit tricky, and I doubt there's much real evidence to guide pediatric dosing for the agents we discuss here. I can, however, give a little general information.
A typical body weight of a 6 year-old is likely to be a third or a quarter of an adult weight. One might guess that a 1/3 or 1/4 of an adult dose of most agents would be appropriate--this would be wrong. Kids have a higher metabolic rate per kg of body mass, their livers and kidneys tend to be more efficient at clearing the blood. Something roughly closer to half an adult dose would likely be more appropriate.
That kind of "rule of thumb" would be recklessly inexact for a toxic chemotherapy agent. However, much of what gets suggested in these pages is pretty non-toxic. Things like food ingredients (e.g., curcumin) or even OTC medications, I wouldn't hesitate really to give simply 1/2 an adult dose to my 6 year-old, if there weren't particular dosing guidelines available. Note, however, that this presumes normal kidney and liver function.
Many agents that don't have an "official" pediatric dose per the manufacturer or FDA still get used in the care of kids by pediatricians. So there's semi-official dosing guides meant specifically to be used by medical professionals. The best compendium I know of is "The Harriet Lane Manual";
https://www.amazon.com/Harriet-Lane-Handbook-Mobile-Medicine/dp/0323096441
I hope this helps.
Thank you very much for dosing guide.
DeleteWhat hell. I'm so sorry to read this.
ReplyDeleteYou may want to read through Stephen's list of clinical trials for kids for some ideas:
http://astrocytomaoptions.com/currently-recruiting-trials-pediatric-glioma/
Dmitri, dont give up! From my personal experience with naturopathy for child 2-4 years (I use biomedical treatment for my daughter due to her neurological problems). I use it for naturopathic means somethimes 2-fold higher dose than is attributed to adult. The most important thing to introduce each component in turn and to keep a diary in which to fixe everything. It help you to analyze. Regarding medication - can not say anything, but i know, that for child with autism some drugs like antiviral, anti-malarian, artemisinin are used for a long time. As for naturopath, i think you can work with somebody via e-mail and skype. A good resource of supplements for Russia and Ukraine iherb delivery DHL, ourkids.
ReplyDeleteДмитрий, с Богом!
Dmitri - are you able to travel to Germany and afford the clinics there? Many good options there. Reach out to Unifontis and IOZK - they will give you free Skype session after analyzing all the reports and provide their applicable options. I am not very knowledgeable in different types of cancers, but I have read more frequent use of things like high-THC Cannabis Oil, high dose Vitamin C IV, Artemisinin IV, Poly-MVA in pediatric cases.
ReplyDeleteSend me all your reports on jradadia@gmail.com and I will get you detailed options and best practices from my Naturopath here in USA. Don't worry about the cost.
Jinesh, thank you very much for your offering. I have to translate reports to english first. I will take a couple of days.
Delete***I'm unable to create new post - Apologies for posting another case of pediatric glioma and request for support and advice under this post...
ReplyDelete7 year old Vasiliy: HELP is needed with his case of bridge glioma
Thank you all for all the useful information on the blog...
It's heartbreaking when a little child is diagnosed with malignant cancer… if someone would be able to help with any advice on the additional treatment options , clinics or methods for alternative treatment, PLEASE DO SO!
Vasiliy is a brave 7 year old Ukrainian boy and he's got malignant brain tumour…I've got limited information at the moment but in case any further clarifications are required, I'd be able to get additional information.
In August 2016, it became obvious that Vasiliy's right side got weaker.
Doctor's note says: Left-sided peripheral facial paresis with double vision. There is also a case of dysphagia. MRI has proven bridge glioma of the brain. There are no signs of cerebrovascular accident.
TREATMENT:
• There have been no neurosurgery interference
• 31/08/16 - 07/10/16 - Radiotherapy 1.8 GY/day (45 fractions) followed by Boost 1.8GY/day (9 fractions) + Temozolomide
• There have been additional treatment of Avastin
In May 2017 the dimensions of tumour were: 46*52mm
At present, Vasiliy takes the following coctail from what is available in Eastern Europe:
Morning:
Vidatox 3 capsules
Peroxide with water 10 drops
Levain 1 tablet
Licam 1 tablet
Spiruflor 1tablet
Ensil 1 tablet
Megamin 1 tablet
Laminin 2 tablets
succinic acid 1tablet
Reviplant 1 teaspoon
Stone oil 50ml
3pm:
Levain 1 tablet
Licam 1 tablet
Reviplant 1 teaspoon
Ensil 1 tablet
Laminin 2 tablets
Stone oil 50ml
Evening:
Reviplant 1 teaspoon
Stone oil 50ml
Spiruflor 1tablet
Vidatox 3 capsules
I have clarified with puredca whether DCA can be considered, as an alternative treatment for small kids and they have confirmed that it should be added. My husband has been taking DCA, Avastin and Valgancyclovir for nearly 1.5 years now from his Grade IV glioblastoma and he's got neuropathy developed, as either the result of any of those or a combination of all. Has anyone heard of any neuropathy symptomps in pediatric glioma?
Would anyone happen to know what could be also added to the above coctail to help with tumour fight for little Vasiliy? We'd welcome any advice and help.
God Bless You All!
Thank you for all your kindness and help,
Nina
It is not the healthy who need a doctor, but the sick. I have not come to call the righteous, but sinners.
~ Mark 2:17
hi, my nephew 13 years old boy was also diagnosed as brain stem gloima on 3th OCT. I would like to be also advised what type of cannabis oil can be applied to him as well. No operation can be done due to the location, only thing that can be done is radiation and chemo therapy currently. Please someone help me out to make him live longer.
ReplyDelete