Basically what the title says. Our boy is starting in the BEACON trial ( Temozolomide / Irinotecan or Topotecan / Bevacizumab ) in a few days, but this will not cure him. I’ve been reading the stories about RSO ( Rick Simpson Oil ), and the studies about CBD having anti-tumor properties.
Just out of interest, did anyone ever try this?
There are no stupid questions on these matters. I have cbd oil in tablets home from endoca. Our daughter didnt want to try though. A friend of us did with his son which was in 2nd relapse in several part of his body but didnt do anything. There is an official medical report about in vitro and in vivo i think good response on neuroblastoma tumors with cbd… So why not
I continued to give my son in the past six months. I think there is some help for his blood routine. For example, his platelets and hemoglobin returned to normal. A year ago my son ended all chemotherapy. I’m not sure to stop treatment or it make them better. Maybe you’ll consult your child’s doctor.
Hi Michiel and all,
Sorry for bringing this up again, but is there anything new on CBD oil usage? Our boy turns 3 in November and was recently diagnosed with neuroblastoma stage 4 with multiple metastatic instances in bones, head and marrow.
As you all understand we are desperate of enhancing the existing chemotherapy (we are following the SIOPEN protocol), with anything legit that we can find. Our doctors are not very positive on this, since there are no documented human trials yet, although they admit that the existing studies show promise.
Given that CBD was recently legalized here (we live in Greece), it’s fairly easy to buy it but we haven’t been able to find a doctor who practices it in these cases in order to determine the correct dosage and monitor all possible side effects.
Any experience on this would be greatly appreciated.
Thanks in advance,
Spyros
We are using CBD and THC Oil for our 6 year old boy.
We give 5 drops 30% CBD 3 x a day.
With the night dose we give a risecorn size 89% THC.
Absolutely no side effects!
Full of energy, and have just done 3 rounds of High dose ICE with no problems and minimal throw up.
For us it makes sence.
Dont use it with antibody.
Hi Daniel,
Thanks for the response. So if I understand correctly, you are using the oil in order to reduce chemo side effects, and not as a primary (or secondary) treatment for the disease itself, am I right?
Regarding the antibody conflict you mentioned, was that prohibited by a doctor? I can’t find a lot of resources online about this.
Thanks,
Spyros
Yes, reduce chemo sideeffects, increase appetite and overall well being.
As much i would love to believe that CBD/THC can kill cancer, there is no real evidence out there to back it up. There are a lot of stories out there, but no real proof.
But of course i have a small hope that it also works to kill my sons cancer.
Cons:
Daniel
Thanks Daniel for all the resources. I was aware only for the first one (actually this was the one we discussed with our doctors), I’ll keep the rest of them in mind if and when we get into the anti-body treatment. To document the info we obtained as well (in case somenone needs it):
a) We haven’t been able to give CBD to our boy, because both our doctors and a practitioner here that uses CBD and THC for various treatment agreed that CBD may have an impact to the effectiveness one of our chemo drugs (I think vincristine). So I’ll keep that in mind for the future
b) There are currently no human clinical trials for cannibidoids and any type of cancer. This was confirmed by doctors and researchers who we contacted in Israel (they are the ones who first discovered the cannabinoid receptors and conducted the research for CBD and neuroblastoma). Which seems outrageous given the promising results in the isolated cell experiments, therefore no one can prescribe/guarantee whether or not CBD actually works for this disease.
c) Our lead oncologist also discussed this option at an international convention for neuroblastoma with the team that provided the cells for this research, and she got the same feedback: This can’t be used as a treatment yet, it’s not even in Phase 1 trials.
We intend at some point to give it as a maintenance option if the first line treatment goes well (or if the child doesn’t respond well to the current treatment), but I wish there was more scientific evidence on this, since the toxicity of the current treatments is really high.
Thanks again.
Spiro,
CBD may be one of over 100 possible things that may be helpful. I have a section in my kitchen filled with natural antioxidant supplements most of which I can not even remember to give my child (also stage 4 NB)
I would highly advise you visit Dr Sotiris Nikolopoulos, a molecular biologist with a strong background in NB. If you provide him with a tumor sample (obtain during surgery) he can do a thorough analysis (gene sequencing and expression) and advise you which chemo and naturopathic agents can be of benefit to you. He identified the exact tumor supressant gene that was weak in our daughter and suggested in our case Black seed, Resveratrol and Quercetin, which may even aleviate the side effects of the chemo agents. I totally believe, as does Dr Nikolopoulos, that a ‘one-size fits all’ approach is wrong since many of the chemo drugs and radiation may do more harm than good in your individual situation. Below is his contact info. I am happy to share a list of my supplements as well. Best wishes and God Bless you all!
Sotiris N Nikolopoulos, PhD, MS
Center for Molecular Analysis and Research
Orthobiotiki Building
Sorou 3-5 Str.
Marousi 15125
GREECE
Tel: +302106197541
Fax: +302106197545
[e-mail:nikolops@molecular-view.com]
Hi Andrea,
Thanks for the info. I myself am not thrilled with the idea of having a common protocol throughout such a heterogenous disease, however I can understand its necessity, because you can’t have numerous specialized centers in each national healthcare system for every rare disease. Therefore having a standarized treatment can help making it accessible to more and more hospitals.
Can I send you a pm regarding the tumor genetics? I’m interested in obtaining more information, even though we weren’t able to perform a biopsy to the main tumor during diagnosis due to the extremely bad condition my son was at that time (he was in the ICU and first chemo was done while incubated with respiratory issues). So we have bone marrow samples and post-chemo tumor sample, but I don’t know how reliable this is. Let me know if I can directly contact you.
Thanks
Spyro, I am sure the post chemo tumor is just fine. We had our surgery after many rounds of chemo and a radiation treatment. My email is: andreasgeorgas@gmail.com. Feel free to call me as well (773) 805-2874
I hope all is going well, I only recently joined the forum. Best wishes, Andreas
Hi Daniel,
I found your response and this forum just yesterday, when I searched for CBD oil usage for my son. He is 6 years old and finished entire protocol treatment including antiGD2 immunotherapy just last month (he had stage IV neuroblastoma high risk) and beside all other the suplements we were giving him throught this time, I would like to start with CBD oil as well. How your son responded to it?
Hi Andreas,
thank you for sharing these informations with us, as mother of 6 year old boy, who just finished entire protocol including immunotherapy antiGD2. Can you please send me the list of supplements you are giving to your daughter, we also gave numerous supplements to our son including resveratrol, vidatox, curcumin, graviola etc and still searching for more natural antioxidants. Thanks a lot. Silvia
Best of luck to you Silvia,
Those are all good, try for lypodomal versions. I am attaching a chart that may be helpful. Other things, green and orange veggies in general (organic), garlic, onion, ginger, turmeric, black seed, Aloe vera, vitamins A, D,E, K, shalajit, green tea ( matcha, moringa, amla), iodine, iodide, red light therapy/ near infra red, Budwig Protocol (flax seed oil with cottage cheese, try to avoid other dairy unless A2 cows), make your body alkaline (food grade hydrogen peroxide, baking soda add to water), silver ( colloidal) water, mushrooms (maitaki, turkey tail, chaga, reishi, cordyceps), apricot seeds, dandelion+ root, essiac tea, Papaya leaf tea, birch bark tea, soursop, marigold tea, mistletoe. AVOID SUGAR/GLUCOSE AND SIMPLE CARBS (STEVIA, MONK FRUIT ERYTHRITOL OK)
Exercise is important, also for clearing out destroyed cancer cells. May be leaving out things, but also don’t want to bombard you…
Best wishes,
Andreas
773.805.2874
Thanks a lot, some of it we are already giving in liposomal liquid version, with food is still difficult he needs to gain weight and is not a friend with green veggies but we take small steps and hopefully he get use to it. Do you have some hints or healthy recipies which your daughter likes?
Hello Silvia,
We are going through that as well. We discover things that she likes and push them. Lately it is mango lasse’s (blend nice ripe mango, add heavy cream, yogurt. You can add Aloe vera juice to thin it out, at some milk thistle, flax seed or other supplements, just try not to put things that change the taste)
Try other smoothies, many cancer fighting smoothies on the net if he does not like mango. I did find frozen soursop in our local grocery, maybe with berries and heavy cream? Use monk fruit or stevia sweetener in you can.
We have to pick our battles when they are losing weight, so yes they will consume some less desirable foods. If he likes milk shakes just try to add more bananas, toss in some supplements.
Always have what they enjoy eating readily available. Ask them what they would like to eat. Order out of they crave something specific. Do many meals a day but try to push food only when they ask. Extra virgin Olive Oil is very good to use or Ghee, but do what you need to do at this point. butter is fine, try for european ( they use the A2 cows), bacon, pizza, etc whatever they ask for
To be honest, we had a feeling tube at one point. It is not as scary as it seems. Opens the door to juicing, getting what you want into them, it was amazing! Our daughters ears hurt for us, she pulled out right out one day so sadly it was short lived.
There is also an appetite stimulant you can ask your doc to order.
Hope this helps!
Best,
Andreas
Oh… and try cooking with them, higher chance they will want to eat it! I have some good ideas but am a not a great cook unfortunately. I send her to an aunt’s house and it is a success! Try almond flour, teff is great specially for flatbread, definitely use as much whole grain as possible and experiment with gluten free.
Good luck!
A
Thanks for all your advise, we ll do our best and I pray, that our kids will recover and live strong and healthy lives. Sending our prayers. Silvia
Dňa 3. októbra 2020, 5:44 používateľ Andreas Georgas via Neuroblastoma Forum nbforum@discoursemail.com napísal:
Hello
Did you tray propolis and royal jelly
