Tea & Biscuits in Manchester – Part two by Jeff Ditchfield

In addition to the conventional therapies did Chico take any other supplements?

Angela: “I asked the doctors right at the beginning if there were any supplements I could give him, and they said no, nothing. They all said that we don’t want to give Chico anything that could interfere with the action of the chemotherapy and they had very compelling arguments. It made me sit back and think that I’d better do what the doctors say. I was living in fear, I was scared, I have no training or scientific medical knowledge and the oncologists are very caring, they really do want the patients to get well I really honestly believe that. However, I am also a big proponent of naturopathy and I believe that there are supplements in the natural world that can help various conditions, but I was initially warned off particularly from giving anything considered to be antioxidant, as they said they were trying to oxidise the tumour and they didn’t want anything protecting the cancer cells from the actions of the chemo..” In truth I think the problem is that conventional oncologists aren’t trained in naturopathy, they’re trained to prescribe conventional medications and they are particularly averse to anything outside of convention as they simply don’t know enough about it and rightly they don’t want their patients to do anything that might interfere with what they are trying to do. What I’d like to see however, is conventional medicine, particularly oncology, embracing all of the things outside of conventional medicine that can help fight cancer, but that would require a massive shift in the status quo.

 

That must have been a very difficult time for you, I know from the parents I’m assisting in the UK that fear is a big factor.

Angela: “The fear is always there, after Chico had been having chemotherapy for 4 months he was really ill, in a wheelchair, vomiting every day and he wasn’t eating anything – he was having to be fed intravenously at this point. So I went to see a naturopath in California who was very helpful. I wanted to do everything up front, so the list of supplements they gave me I passed to Chico’s oncologist and to my amazement he approved everything and Chico subsequently had glutamine for his mouth sores (this worked completely and almost instantly), reishi and cordyceps mushroom powder, IP6+Inositol, melatonin, D3, fish oil, B6, B12 a multivitamin specially designed for cancer patients, and a Chinese herbal remedy called Marrow Plus which always helped to bring his white blood cells up to normal levels. The oncologist just asked us to avoid giving the reishi and IP6 24 hours before and after chemo. It was around that same time that he was prescribed Marinol™ a synthetic version of THC, not to treat his cancer but because none of his anti-nausea drugs were working.”

So the doctor suggested Marinol™ for the nausea caused by the chemotherapy?

Angela: “The doctor who suggested it said that they’re only allowed to prescribe Marinol™ if the other anti-nausea drugs had failed, which they had. I’d never even heard of Marinol™ at this point, but after he was prescribed it two home nurses who had never met each other took me to one side and said, do you know the real thing works better and you can get a recommendation to get it?“

When did you first hear about cannabis oil being used to treat cancer rather than the side-effects of chemotherapy?

Angela: “A family member overseas had mentioned it to us and one of the first was Bez from the Happy Mondays”

 

How did Bez bring up the subject?

Angela: “He was straight to the point, “you want to get him on the oil”   He said it to Paul really early on”

 

If that advice hadn’t have come from Bez do you think you’d have acted upon it sooner?

Angela: “I don’t know, because as a normal rational thinking person you think that everything that’s effective for treating cancer is being used in conventional treatment protocols. If cannabis worked for cancer then surely everybody would be prescribed it by their doctors? Wow was I wrong!”

And in California where you live, medical marijuana is permitted?

Angela: “Yes because we live in California, even if you’re a child if you have some kind of cancer or life threatening illness and a doctor deems that you will benefit from medical cannabis then you can get a recommendation. So we asked a doctor and they laughed and said we’re not having our patients smoking joints and I said you don’t need to, you can have it as a tincture or butter. So at first they said no, and then I spoke to a doctor who had given it to a friend who had cancer, she hadn’t eaten for a year and within a day she was eating pizza. So this doctor was a convert, and gave us a recommendation which we took to a local dispensary. We were given edibles but the problem was Chico couldn’t eat, it was a catch 22, if he couldn’t eat how could he be medicated? But even here they give the recommendations ostensibly for the mitigation of chemo side effects – there’s not a great deal of awareness about the anti-tumor properties of cannabinoids even amongst oncologists”

Was it a straightforward matter sourcing cannabis oil from the dispensaries?

Angela: “It wasn’t very easy, they didn’t seem to have oil available at the time, it was almost unheard of it; this was only 2 years ago and things were very different back then. I got in contact with a woman who was recommended and I obtained some, she said it was made with food grade alcohol and 70-80% THC. At this point we didn’t know anything about CBD, it was all about Rick Simpson. I was advised to slowly build up to one gram of oil per day so we didn’t have a clue what we were doing and started off putting it on anti acid tablets which he chewed. Within a week he suddenly wanted to eat, he was hungry and his appetite returned it was amazing.”

Through your research you’ll be aware that some people advocate not taking chemotherapy and just taking cannabis oil, what is your view on this?

Angela: “Chico certainly didn’t breeze through chemo, but the chemotherapy definitely made a positive difference, there’s no question in my mind that it saved his life initially. Apparently Chico’s type of cancer is one of the few that even the fervent anti-chemo advocates admit can be very responsive to chemo, at least initially. It’s a double edged sword, it might kill you and it might save your life. Until more research is done into cannabis oil and correct dosing can be established I would never recommend anyone drop conventional treatment and just do oil. Chico’s oncologist, even though he was originally sceptical has done a complete U-turn on cannabis, he’s now recommending it to other patients.”

 

So do you think it’s more effective to combine therapies?

Angela: “Within 24 hours the chemotherapy had a positive effect on Chico and it stabilised his heart rate, I hated the chemotherapy when it brought him to the brink of death more than once, but there aren’t many other viable options. Maybe by combining chemo and oil you can massively reduce the dose of chemo and get the same result. A friend of mine had an eight month old baby with an optic pathway glioma, they decided they would do just oil and the tumour grew, and then they introduced chemo alongside the oil and it shrank. Normally there wouldn’t be that kind of shrinkage on that chemo so there’s some evidence that chemo and oil was probably a more effective option.”

 

Some parents have been criticised for combining conventional therapies, have you ever experienced this?

Angela: “One of my pet hates is when I get criticised for “allowing” my child to have chemotherapy; Someone made a comment under a clip of us talking about cannabis oil on you tube saying that we were terrible parents and giving cannabis oil a bad name because we allowed our child to have chemo as well. People like that I want to strangle!”

From the research at Bud Buddies and in my experience children seem to respond a lot more positively to the oil than adults, what is your experience?

Angela: “Yes, I think children are more resilient.”

 

When you managed to obtain the oil for Chico and were building him up to a gram a day, how long did you stay at this dose and did you go higher?

Angela: “We discovered the oil we had been using originally was only 58% rather than 70-80% and it stunk of nail varnish remover. He had stomach problems so we were strongly advised not to use it any more, I also felt I had been lied to about the extraction method and no longer trusted it. It transpired after testing that it was made with isopropyl alcohol which is considered to be an unsafe method”

The nail varnish smell indicates that that particular batch of oil was extracted with acetone and not ethanol as the oil maker claimed.

Angela: “That’s what me and Paul thought, so we approached another oil provider, Aunt Zelda’s who came highly recommended and they gave us two oils, one high THC and one high CBD. Their oils were lab tested and even came with the test results printed on the side of the syringe. They advised us to dose separately, we ended up building up to two grams per day in total. Whether that was the right thing to do or not who knows? My theory at the time was we may as well hammer it while we can. The daily dose wasn’t always consistent as he was sometimes throwing up a lot but it was as consistent as we could manage, he took between one and two grams a day for five months and he never missed a chemotherapy session unlike many of the other kids who weren’t having oil. By this time he had had a g tube fitted so we flushed the oil directly into his stomach down the tube. We were told this made it a bit less bio-available so probably the higher dose was appropriate.”

 

So now Chico is remission and on a maintenance dose, please tell us about that.

Angela: “He was initially on a maintenance dose of 150mg of THC and 120mg CBD per day which is still quite a high dose, but I didn’t want to come down too drastically. We had a complication because Chico was also initially on methadone and opiates prescribed by his doctor so we had to reduce the cannabis oil for a while, because it was potentiating the opiates, so we reduced the methadone dose as we increased the oil dosage.”

Increasing the oil and reducing Chico’s opiates, was that something you and Paul decided to do or was it on medical advice?

Angela: “We did it after consulting with Aunt Zelda’s, and I’d found a study done showing that cannabis can help potentiate opiate withdrawals. The pain doctor we were consulting with about the methadone reduction had no knowledge of this and was very interested when I showed her the study I’d found. By February 2014 Chico was off methadone and on a maintenance dose of cannabis oil. After a year we reduced the maintenance dose to his current dose which is 85mg of THC and 100mg of CBD per day.”

I understand that when you reduced his maintenance dose that something strange happened?

Angela: “Even a year off treatment, we still had problems with Chico’s appetite, he was nauseous and it was a problem trying to maintain his weight, he didn’t really enjoy his food and he was a skinny skeletal kid after all his treatments. So for a year he maintained his weight but didn’t gain any. Then when we reduced his maintenance dose from 100 to 85mg of THC and 120mg down to 100mg of CBD, a raging appetite came in, he had very little nausea and ate like a horse. He’s now 20 pounds heavier than he was. I’d heard there was a sweet spot but had thought more THC must be better, it seems that’s not the case and I don’t know if it would work for everyone but when we reduced the THC slightly we really got the benefits of THC – and it’s still working today.”

Of course you live in California where medical marijuana is recommended by doctors, how do you feel living in a state and country where this is permitted?

Angela: “We feel very lucky because I don’t think I would have had the balls to administer the oil if we were in the UK. I was so scared of anything going wrong with the treatments that being able to be open with the oncologists and have them on board was really brilliant. If I’d have had to do it in secret I would have been crippled by fear I think. There’s a certain psychology that if something is illegal there must be a reason or something wrong with it, and the fact that in California it is legal gave me the confidence to do it. With the stress of having a child with cancer I doubt I could have coped with doing something illegal as well? Luckily we don’t have to be concerned with action by the authorities so I am very grateful that we live in Los Angeles.”

 

I’ve been following the situation in the USA very closely and the strange thing in California to me is that they’ve gone for a halfway house where doctors are permitted to make a recommendation when a patient could benefit from cannabis, but they can’t go further and advise dose or on extracts or strengths. For cannabis and cannabis preparations you have to go to a dispensary or oil provider and all you’re getting at dispensaries is their opinions, so if you go to three different dispensaries they may give you three different opinions.

 Angela: “In our experience, very few dispensaries actually even carry oil, it’s more much smaller operations that produce and provide oil, usually without shop fronts. Some dispensaries now do stock oil, but they wouldn’t really be able to advise on dosing or strains, so you have to find a specialist cannabis oil consultant for proper advice. Good ones are hard to find and unfortunately there are many charlatans and some of them charge a fortune. The system here is far from perfect.”

 

I don’t think that’s the right way to go, what we do at Bud Buddies takes longer because every individual is different. There are 5000 strains of cannabis and it’s important to have a decent consultation with patients, find out what they need and tailor the oil or preparation accordingly but that takes time and most dispensaries don’t have that time as they seem more driven by sales and profit.

 Angela: “Yes exactly. That’s why you have to find an honest and reputable supplier who will take the time to get a patient history and match the histology of the cancer with the appropriate strains of oil for maximum efficacy. Dispensaries don’t really do this.”

 

Hi Chico, how are you feeling?

Chico: “I’m feeling good thanks”

 

Your mum was talking about the side-effects of your chemotherapy and the mouth ulcers which sound horrific – what were they like?

Chico: “They weren’t very nice, I had big red lumps and when my tongue touched them they would really sting, they hurt all the time.

Can you remember how you first felt when your mum gave you oil?

Chico: Not really, but I remember that I liked it (he laughs)

 

You know that here in the UK cannabis oil is illegal, so if you took it here you and you mum would be breaking the law, how do you feel about that?

Chico: “I think that’s crazy, all children should have it if they need it”

 

When I met you last time in Bristol I introduced you to H who appeared in the documentary Project Storm and he’s having cannabis oil in the UK, he’s a couple of years older than you and his cancer is also in remission. Unfortunately he can’t speak freely about it like you because he’s in the UK

Chico: “I think that’s so wrong and very unfair.”

 

How do you take your oil Chico?

Chico: “I have it in a small syringe and mom dilutes it so it’s really thin and I take it in my mouth.”

 

Do you take it all at once or at different times during the day?

Chico: “I have the CBD oil at night and the THC oil in the morning.”

 

Do you like the taste?

Chico: (He laughs) “Yes, I do.”

 

I understand that when you get older you want to work in the cannabis industry.

Chico: “Yes, it’s what I want to do I want to help other children with cancer.”

 

That sounds very good to me, would you like your own dispensary?

Chico: “When I was in hospital I had a good friend who also had cancer, and she died, I want to help other children and I’ll name my dispensary after her.”

 

That’s very noble Chico.

Angela: “When we were first researching giving oil to kids, we only found a handful of others who had had it and only one who had had it for a sarcoma – this was Allie. We subsequently became friends with Allie and her mum as Allie was our main inspiration for having oil. Allie and Chico started texting each other for support and became very close. Unfortunately Allie’s doctors weren’t so supportive of her having oil so her mum was always scared of giving it to her when she was in the hospital as it sometimes made her blood pressure drop a lot. Allie was hospitalised a lot and ended up losing her battle a year ago, about a month after Chico and her met for the first, and last time. (so not accurate to say she didn’t have oil, but she wasn’t able to have it consistently)

Which do you prefer? Los Angeles or Manchester.

Chico:    “It’s a hard decision but I think Manchester.”

 

In early 2013, over a five week period Chico endured 28 sessions of chemotherapy and experienced severe side-effects including nausea, vomiting and neurological pain, he was prescribed opiate pain relief in the form of Methadone. In an attempt to reduce the side-effects of his chemotherapy Chico was prescribed Marinol® (a synthetic copy of THC), initially it was effective however the benefit was short lived.

Chico was lucky to live in a US state that permitted ‘medical cannabis’ and in July 2013, he was on cannabis oil from one of the many California oil providers, the effect was dramatic, his vomiting and pain reduced and a month later he was taken off intravenous feeding.

Two types of whole plant cannabis oil extract were issued, a high THC oil containing 53% THC, and a high CBD oil containing 48% CBD, both supplied in 10ml syringes, these were administered to Chico separately and the dose was built up slowly until he was able to tolerate daily doses of around 1500 mgs of cannabinoids. (potency varied according to which strain we were given – THC was usually between 55 and 70% and the high CBD oil was usually between 45% and 65%) We used many different strains including Cannatonic, AC/DC, Pineapple Express, Blue Dream, Candyland, and Valentine X

Professor Manuel Guzman and his team at Madrid Complutense University have determined that (in laboratory experiments) both THC and CBD have anti-cancer properties and their findings indicate that combining THC and CBD is more effective as an anti-cancer agent than either THC or CBD on their own.

 

Originally Published in Weed World Magazine Issue 118