Billy

As in previous stories we’ve shared, the battle for medical cannabis legality isn’t unique to the United States.  In Ireland, a fifteen-year-old young man named Billy Caldwell continues to suffer from refractory epilepsy.  For more than 3 years, his mother, Charlotte Caldwell has been waging a war against the Department of Health Northern Ireland.  

 

Back in 2017, when he was then 12, Billy was the first person in the UK to be prescribed cannabis oil, but last month, his General Practitioner was told he could no longer do so.  Desperate to get her son the medication at any cost, they traveled to Toronto to purchase the product, and upon their return to the UK, the medication was seized and Ms. Caldwell took her story to the airwaves with the press.  While on a treatment plan consisting of cannabis oil, her son had gone a remarkable 300 days without a single seizure.  After the medication was removed from her on Monday, Billy suffered a seizure the following day.  

While his mother attempted to go through proper channels, she was given repeated responses that while officials could sympathize, cannabis is a Schedule 1 drug and must be seized, and urged the family to explore options with the Department of Health Northern Ireland.  The Caldwell’s have continued to fight the healthcare system with the support of elected representatives to plead her case, and finally her efforts appear to be paying off after multiple years.  He has been referred to the Refractory Epilepsy Specialist Clinical Advisory Service, which provides a forum for the discussion of difficult cases that have proven hard to treat. Ms. Caldwell has taken legal action in a bid to secure long-term access to the medication.  Recently rules were relaxed to allow some cannabis-derived medicines to be prescribed to patients in the UK by specialist doctors in limited circumstances.

 

Ms. Caldwell said: “This gives new hope to children like Billy. It is beyond valuable to me to know that as long as Billy gets his cannabis oil every day he will be safe.  He won’t have a seizure. It feels like a safety blanket.”

Watch this news clip on cannabis and epilepsy

 

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Half of America Loses Tonight, but Cannabis Wins

Update: As of Nov 4, 2020 Montana has legalized adult-use and Mississippi has legalized medical-use. 

November 3, 2020

I woke up early today with the belief that if I could get up before the craziness starts and be focused on something else when the images of poll lines hit my newsfeed I would be able to ignore it. I went on a hike with my son, ate well, practiced deep breathing, avoided alcohol; I did everything I could to promote peace and wellness. Two things we all need right now. I ignored the urge to look at the images or turn on the TV until 4 pm CST when I glanced at my phone and “1:15 until the first exit polls” came across my screen.

Today was not a day I was looking forward to. I am a person that often takes on the grief and sadness of others and it takes a great amount of work to maintain a balance of caring for myself and others. I feel very sad for our country right now and very happy at the same time. We are so intertwined and connected to those on our side against those on the other. We have been isolated, told we can’t touch our loved ones, missed out on events that bring us joy, and we are clinging to any connection we can find and we have found it in our troops. We are in this fight together and we have found the support and camaraderie among those on our side. Does tonight mark the end of the coronavirus or not? Will we live or will we die? Will we be allowed to protect ourselves with guns and keep our money or will we lose our rights as women and throw more children in cages? This day ends with sadness for one and happiness for the other. I hate tonight.

As I am full-on addicted to the coverage a few hours later, switching between Instagram, Facebook, local news, CNN, and Fox, of course, to ensure I am diligently fact-checking on my own and that’s when I saw, “Congratulations to New Jersey!” at about 8 pm. Cool. New Jersey passed adult-use like we knew they would. Not that exciting because the medical program in New Jersey is often referred to by my nurse colleagues as “a mess!” They say, “patients don’t have access to medical cannabis!” and patients are frustrated with the medical program too. One patient tells me, “I went back to get that strain that helped my back and they said they were out of it. I was scared to try something else so I just left.” The medical cannabis law enacted in 2010 wasn’t working and it was predicted to change with this election.

Then I can’t remember, maybe it was DC, or Oregon, Arizona, I don’t know, but it was like the whole country just let a joint. Adult-use, medical-use, psilocybin, all drugs decriminalized in Oregon! What is happening to the United States?!? Damn, I feel like I’m in Europe. Does this mean that those who are addicted to drugs won’t be treated like criminals? That maybe some “magic mushrooms” and weed might have real medical value? Yeah, I think that’s what that means. But I thought people just wanted to use cannabis to get high? Um, nope, not anymore. Americans want options. Americans are in pain, tired, and overweight and want to change. They are starting to believe that the five prescriptions they’re on might not be helping them. That medicine found in nature and used for thousands of years might not be as bad as what we’ve been taught for decades. It’s a trend that’s sweeping the nation, not limited to the states we refer to as progressive.

What does this mean? It means we are closer than ever to getting cannabis removed from the Schedule I Controlled Substances list. That there are 1 in 3 Americans who now have access to a plant. People are taking back ownership of their bodies and want to decide what they put in them. Being a nurse for the last 15 years has taught me that patients are in charge of getting well, not health care providers or prescription medications. The people had their voice heard tonight and they all say, “We want plant medicine.”

-April

Chuck’s Story

Ask Chuck Coburn and he’ll tell you that he’s a hippy.  Born in 1966, Chuck grew up in the south and every Sunday morning you were in church and being reminded vehemently about the importance of walking the straight and narrow path.  More than one pastor delivered the same message – marijuana is bad and will destroy you and your loving family will be heartbroken over your use of the “smoke.”  Like many of his generation, he said that the sad irony was that the plant wasn’t the enemy, nor the devil.  The men of influence and power, like the pastors, abused that power and that abuse took the form of fire and brimstone messaging about cannabis.

 

During the course of his adult years, he kept his use of cannabis a secret, while secretly confident that it kept him from losing his sanity when the terrors of high school were overwhelming him, but more importantly, it had the same calming effect when his father would drink and abuse his mother.  It was later in his life when he was given a diagnosis of Parkinson’s and additional health maladies.  Attempting to be candid with his doctors, he spoke of his severe anxiety and agreed to Klonopin use.  During subsequent visits to his doctor, he expressed his fear at the tolerance he was building to the drug and the increase in dosage he was having to employ in order to get the intended relief.  His doctor advised him to “take them as I said to.”  

 

He lost 102 pounds and nearly lost his life.  His wife, an RN, broached the topic of medical cannabis.  His thoughts returned to the admonitions of his pastors and the “devil’s weed.”  He asked himself, “where were THEY when I shook and cried from withdrawals resultant from the doctor recommended pharmaceuticals?”  

 

Today he uses Rick Simpson oil for tremors and buffers his anxiety.  He jokes that he can “hold a fork and wipe my butt without issue. To those of you out there who are confused, it’s possible to shake so much that cleaning your backside is impossible.”  The RSO gives him back his abilities and his life. 

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“Thank God I Found You!”

Our blog this week is a bit different, instead of sharing another patient success we wanted to share an all too common patient frustration.

Meet Sue, Sue is in her 60’s and has suffered with fibromyalgia for the last ten years. She reports her condition has not ever really improved with the medications she has been prescribed, only that she didn’t like the side effects of the anti-depressants and opiates. She said she would rather deal with the pain than the anxiety and drowsiness she felt were caused by the medications. The physicians didn’t have any more to give her so she turned to an online fibromyalgia support group. In this group, she learned about dietary changes that were helping others and she learned about medical cannabis. Living in a legal state she decided to get her card and give it a try.

On her first trip to the dispensary she purchased a vape pen, popular among the support group, and pre-rolls that the budtender said were a good deal. The budtender told her about the strain that was in the pre-roll and it sounded like a great fit for her pain.

Excited to give it a go she decided first to try the pre-roll. Not ever smoking anything in her life, she took one inhalation and was done after that. “The taste was awful” is what she reported to us. Next, she tried the vape pen, and unsure of how to use it, she took a long inhalation and held it in. A few seconds later she had a coughing fit so bad it made her vomit.

After spending $100 on her physician certification, her state fees, and what she felt like was a wasted $60 on her first trip to the dispensary she reluctantly decided to go back to see if she could find something else. She shared her financial concerns with the dispensary staff and wanting to help her get the most for her money, they recommended RSO. That evening she followed the directions on the label and two days later she was finally able to get out of bed. Not the effect she was looking for.

I think we can all agree that Sue did not have a good first experience with cannabis. Thankfully, she came to us and we were able to provide her with the individualized education she needed. She is now using an oil twice a day that helps with the pain and doesn’t cause any fatigue or drowsiness.

“Thank God I found you!” are words we frequently hear, but not frequently enough. Sue’s story is just one of many we’ve heard and we’re hoping with the education we provide for patients and dispensaries we can prevent patients from experiencing what Sue did.

To learn more about medical cannabis, please schedule a free 15-minute consultation here. 

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“Super Mom”

Meg Lewellyn is a mom of three and was diagnosed with multiple sclerosis in 2007. At the time of her diagnosis, she was a self proclaimed “super mom” and with kids aged 9, 7, and 5, she was extremely active – as any mom of kids that age have to be.  As the disease took hold, she came to terms with the fact that her daily 6-8 mile run was no longer an option, she was also faced with the use of a cane anytime she left the house. She continued to attempt to go to the gym, rationalizing that the pain was only temporary.  

 

Four years later, after some intermittent improvements in mobility, the pain was no longer temporary or only after exercise. Doctors prescribed a cocktail of multiple pharmaceutical solutions including, but not limited to methadone and clonazepam and she started to self medicate with alcohol.  Desperate as she found herself with few options that could be considered effective, she considered using the medical marijuana card she had obtained 4 years earlier, but never utilized.  

 

Like many others, she was apprehensive for a multitude of reasons, including the perception of her children, friends, and family; the fear of dispensary personnel not understanding her ailment, and self doubt.  She began a 6 month journey to determine if medical cannabis could make a positive impact.  After the initial few months, she made some realizations about her earlier fears.  Her kids wanted her to feel better, no matter the method; friends and family felt the same way, they wanted her to be free from the excruciating pain and supported her decisions.  Fortunately, the dispensary staff was more than helpful, they were kind and happy to help.  

 

At this point in her life and her journey with medical cannabis, she is optimistic about the results thus far and has been working with her dispensary staff to learn more about the strains available and has continued to try different versions to bring her relief.  She emphatically mentions that unlike so many of the pharmaceutical “solutions” she’d tried in the past, her only side effects from cannabis have been “smiling, laughing, and the return of her sex life.  Her side effects with the prescription medications brought her the “gifts” of dizziness, diarrhea, constipation, cramping, dry eyes, dry mouth, drowsiness, restlessness, anxiety, and decreased sex drive.  

 

This particular mom has determined that the quality of her life is worth any perceived stigma from strangers and is now living with MS, but not living as MS would prefer.  

Click the link below to learn more about the treatment of MS with cannabis.

MS & Cannabis Treatment

No longer a “Bag of Bones”

Cheyann Shaw was a vibrant and adventurous fitness social media influencer.  That changed at 23 when she was diagnosed with stage 4 serous ovarian cancer.  Her chemotherapy regimen began in August of 2016 and thus began a series of nightmares – multiple rounds of chemo, surgeries, a temporary ileostomy bag, and an allergy to dairy. Her weight plummeted from 130 to 97 lbs, from muscle to a skeletal bag of bones. 

 

Her family and friends watched her deterioration until her parents finally broached the topic of giving medical cannabis a chance. She was initially opposed to the idea, having always led the life of an athlete and considering her body a temple.  Oddly enough her father, a previously anti-cannabis man, had seen a friend battling with back cancer have positive results by treating his own condition with medical cannabis.  Cheyann began with 1 gram each of Rick Simpson oil and CBD, distributed in pill form.  She found that the aggressive chemo she was subjected to next – seven rounds in all – was far more tolerable.  She began to see that her appetite was back and was starting to crave food again, even eating dinner and desert like a “normal” person.

 

The most difficult of the chemo side effects she had experienced previously was feeling both exhausted and wide awake simultaneously.  To combat the side effects of chemo, doctors had begun injecting her with a steroid to “help” but those would keep her awake, sometimes up to 72 hours at a time.  Both her physical and mental health were suffering and again, she started looking into how medical cannabis might help with the mental exhaustion.  She found that THC was a godsend for insomnia and began to sleep and wake up refreshed.  Not only that, but the anxiety was dissipating with the use of THC.

 

Today, Cheyann says that she’s a firm believer that medical cannabis helped her win the fight with her cancer.  She says, “Many people are closed-minded when it comes to THC and at one point, I was one of those people.  But if you keep an open mind and do just a little research, you’ll be surprised at what you might find.”    

Often times I hear patients tell me they have treated their lower abdominal issues with cannabis suppositories, either vaginally or rectally. I’ve been told they work for menstrual cramps and to treat the symptoms of Crohn’s. Click below to check out the research on cannabis suppositories and if they really work.

Do Cannabis Suppositories work?

Was it the Cannabis or Chemo?

Imagine being diagnosed with stage IV cancer and being told your chances of surviving are slim. Then imagine the only treatment that may extend your life expectancy leaves you depressed and ill for days.

Chemotherapy is often the best choice patients are given, and of course, they are willing to endure the many side effects that come along with it. These side effects include headaches, body aches, fatigue, numbness, shooting pain, mouth sores, diarrhea, nausea/vomiting, blood disorders, tremors, difficulty walking, cognitive issues, sex and reproductive issues, appetite loss, hair loss, and even heart problems. I can think of hundreds of medications that could be prescribed to treat those potential side effects and often chemotherapy does come with a standard protocol of medications for pain, nausea, depression, and gastrointestinal disorders.

We know that cannabis can be used to treat many of those side effects, but can cannabis treat cancer? The patient I want to highlight today decided to not only fight cancer with chemo, but with high doses of cannabis. He wanted to give himself the best possible chance at surviving cancer and like most, was willing to do anything.

His treatment began with chemotherapy and a titration of cannabis oil included CBD and THC. After approximately 4 weeks of increasing his dose he was taking 1200 mg of cannabinoids daily in divided doses. Sure, the cannabis helped with the pain and nausea, but the intense effects left him unable to do the things he enjoyed. He couldn’t drive and couldn’t remember A LOT. However, these concerns were minimized when he would go in for his regular scans and was told his cancer was shrinking faster than the oncology team expected. Over the next six months he continued with this high dose of cannabis oil and chemo and at each scan received good news. Six months before he wasn’t sure if he would still be alive, but he was. Was it the chemo or the cannabis? That’s a question he often asked himself, his doctors, and me, but unfortunately no one was able to give him an answer. We just don’t know.

The current recommendations by practicing cannabis clinicians is to complement traditional cancer treatment with cannabis, not replace it. Some day we may know what doses of cannabinoids and terpenes can be used to fight cancer, but were still just guessing.

This patient is now on a much lower dose of cannabinoids, receiving chemotherapy 4 times a year, and is enjoying life again. For more information on using cannabis for cancer, please check out the link below.

Cancer and Cannabis

Ovarian Cancer and Cannabis

Michelle Kendall, at 47 and a sufferer of terminal ovarian cancer isn’t a life-long user of cannabis.  In fact, she didn’t partake throughout either high school or college.  In an interview with the Cannigma she said, “I’m from the era of (former US First Lady and anti-drug advocate) Nancy Reagan and I was very scared of this stuff. I thought this was crazy but when you’re up against the wall you know you’ll try anything.” 

Four years ago, Kendall was diagnosed and in the time since, has gone through eighteen rounds of chemotherapy and two major surgeries but admits she’s out of treatment options.  She recently went through a 5-week round of cannabis therapy under the guidance of a physician and included 80mg of THC which she said “worked as well as any round of chemo I’ve had.”  

 

Like other patients who have been through the wringer in every sense of the word with traditional medicine, Kendall won’t commit to any additional chemotherapy and said that she truly believes the cannabis has shrunk her tumor size as well.  She’s taken on the responsibility of tracking her treatment and tumor growth at home and monitors how her blood test results correlate to her THC treatment plan.  Today, she includes gummies during the day and a tincture dosage at night for bedtime.  

In interviews with media outlets, she’s cautious and always states that cannabis “is not a magic bullet,” and when asked if she would recommend other cancer patients try cannabis as a treatment, she replied “it’s not a magic cure all. There is nothing in the pharmacopoeia that is going to save me,” Kendall said, adding that cannabis “may not be curative but I know that’s allowed me to live longer.”

 

Kendall makes a great point and we support her stance – it’s NOT a cure all and it’s not for everyone.  But in situations like Michelle’s, when the plant can make this kind of difference in the life of someone out of options, it’s a great reminder that reform and legalization has made strides to make it possible.  

(Photo courtesy of cannigma.com)

 

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Parents Fight for Access to Safe, Quality Medicine

Dispensary Tour - Cannabis Education - Kansas City, MO

Oftentimes we learn about patients in the media who are struggling from having legal access to safe medicine.  While every patient story is heart-wrenching, it’s the ones about children that seem to stick with us and sometimes serve up the impetus for policy change.  Charlie Hughes is one such patient story that both touches and infuriates readers who learn of the battle his family is waging for access to medicine.

 

In the UK, parents of toddler Charlie Hughes are fighting the National Health Service (NHS) and seeking a policy change that could radically alter his quality of life.  Charlies, 3, has a rare form of epilepsy called West Syndrome, known best for its frequent seizures – up to 120 per day – and historically treated with benzodiazepines which have side effects ranging from lethargic to dazed and not effective at reducing either the seizures nor their impact. 

 

Under the NHS protocols, he has been prescribed seven different prescriptions for anti-epilepsy medication, yet he was still experiencing up to 100 seizures a day.  Charlie’s parents, Allison and Matt claim that with full extract cannabis oil, the number of seizures he experiences in the course of a day is dramatically decreased.  The family pays hundreds of pounds per month to source full extract cannabis oil privately because clinicians at NHS have refused to prescribe Dutch-made oils (which meet the European Medicines Agency guidelines for Good Manufacturing Practice).  

 

Matt said of his son’s improvement since taking cannabis: “Charlie is happier, more alert, far more vocal, constantly babbling and takes an interest in his toys. He can feed himself and loves nothing more than some rough and tumble with me. He’s come alive again.

“No one knows definitively what effect all those anti-epileptic drugs in combination with each other have on the development of the brain. If he wasn’t asleep or completely zonked out, he was just seizing. Cannabis has massively improved his general wellbeing.”

The decision in the Hughes’ case against the NHS could have profound impact on cannabis oil as medicine and the ability for parents like the Hughes to have access to what is clearly making a difference in their son’s quality of life.

Visit the link below to learn more about the Realm of Caring. Not only are they actively involved in making cannabis accessible to all who could benefit, but they provide a financial assistance program as well. 

Realm of Caring.org

Olivia Newton-John: From Sandy to Cannabis Supporter

Olivia Newton-John finds help herself then opens center to help others. 

Olivia Newton-John is likely best known for her iconic role as Sandy in the classic Grease movie which inspired good girls to rebel. What she’s not as well known for is her battle with breast cancer. When diagnosed in 1992, Olivia went through a treatment regime including a mastectomy, breast reconstruction, chemotherapy, as well as holistic add-ons like acupuncture and meditation. For those who have experience with breast cancer, the road to recovery is long and arduous, as well as physically and emotionally exhausting. Nevertheless, she persevered and found herself in remission eventually.

Unfortunately, in 2013, her breast cancer returned, having attacked her shoulder, and with it, severe pain from a tumor in her sacrum. She described it as “months and months of excruciating, sleep-depriving, crying out loud pain.” The pain was so intense, that not only was she unable to walk unassisted, but the impact to her career manifested in the inability to perform. Her medical team treated her with morphine for pain, but she made the decision to wean herself off of the dangerous drug by using cannabis oil. She was astonished at the side benefits it offered such as helping with anxiety and sleep and her husband now grows her medicine.

Today, she’s vocal about touting cannabis as a game changer, and swears by its effectiveness for pain management. Her own journey with cancer inspired the Olivia Newton-John Cancer Wellness & Research Center in Melbourne, which she supports in caring for cancer patients and conducting clinical trials.

a guide to cannabis and cancer